Nine years ago in April 2015, when I was 53, I had heart
valve surgery on 3 valves : my
aortic and mitral valves were replaced with mechanical valves and my ...Read more
Nine years ago in April 2015, when I was 53, I had heart
valve surgery on 3 valves : my
aortic and mitral valves were replaced with mechanical valves and my tricuspid
valve was reinforced/repaired. My heart had radiation-induced stenosis from
radiation/chemotherapy treatment I had as a teenager.
I had no pain after surgery but still asked for morphine
so that I could forget that I was in ICU. Rather than pain I had much discomfort
and exhaustion. I was sometimes too exhausted to open my eyelids, let alone
photograph, post, or watch TV. The first 8 days post-surgery I felt exactly the
same every day. Like I had been hit with a truck.
Two weeks after surgery (still in hospital) and with the
help of a nurse’s aide, I took my first shower, sitting down. I did not have
the strength to shower alone. The next day a permanent pacemaker was surgically
implanted. My hospital cardiologist had waited 2 weeks to see if my heart could
regain its electrical conductivity after surgery, but alas it didn’t. This
happens in a small amount of cases. The pacemaker was a surprise but only
bothers me when I see its unsightly bulge under my skin in the mirror.
I lost my appetite after surgery and only ate because I
was supposed to. I was cold all the time. I couldn’t sleep. My whole body was
out of whack.
I had 4 pleural effusions after surgery, which were
drained in hospital. I still get chronic pleural effusions which I manage with
Lasix. I take anticoagulants, have not changed my diet, rarely hear my valves,
have a blood test about once a month and manage my own dose of coumadin. The
only other heart medicine I take is 5mg
of Ivabradine twice a day – a « hyperpolarization-activated cyclic
nucleotide-gated channel blocker », which slows my heart down. It replaced
the betablocker Metoprolol which I didn’t like.
The summer after surgery I was back at work and doing
what one does in a city : taking the subway, climbing stairs, carrying
groceries home. I never counted my steps or was told how many to take. I do
everything I did before, just some of it slower. Perhaps that is due to being 9
years older rather than surgery.
I see my cardiologist twice a year, have an
echocardiogram once a year, see my pacemaker doctor (rhythmologist) once a
year. Honestly, I rarely worry about my heart valves. There are always other
new things to worry about that have nothing to do with my heart. I still get
tired on stairs and if I walk uphill. I still feel a tightness in my chest.
Writing was important to me, especially post-surgery.
Writing allowed me to get down on paper and out of my head the stories and
feelings I had about heart surgery. This site was a place one could write honestly. I encourage you to
write your stories in a realistic honest way. Your personal narrative is as
important as your medical file. Every story is personal and singular and every
heart is different. You are not like anyone else and recovery from surgery is
not a competition. A lot of the hard stuff is not said and you might feel like
you aren’t « normal ». There is no right or normal way to recover.
You might find someone who had a similar experience or someone who is
completely different than you. It’s all hard, it’s all normal. I’m grateful to
my surgeon for telling me that I would be exhausted for a long time but not
giving me any specifics, letting it happen as it happened. There will always be
a side effect that surprises you – you can’t be prepared for or control everything.
Give your heart and your psyche the time to recover.
As always, a big shout out to the classes of 2014, 2015,
2016... Much love.
Marie Myers Happy Anniversary Rita! Wishing you many more healthy years! I have always enjoyed your posts, and wi ... Read more
Marie Myers Happy Anniversary Rita! Wishing you many more healthy years! I have always enjoyed your posts, and will continue to look for them.
Sue Maize Dear Rita, sometimes I think your posts are just for me…they are that honest, stripped down and per ... Read more
Sue Maize Dear Rita, sometimes I think your posts are just for me…they are that honest, stripped down and personal. I’m so glad we have connected and I am so grateful every time you share an experience or insight gained from your own heart journey. I agree wholeheartedly with writing as a tool to process the process. I do most of mine in a separate journal and it’s been one of the best gifts I could give myself. Thank you for remaining connected to this community—you’ve helped me and so many others to feel hopeful about a future following OHS. Bless you. 💕🙏🏻🙌🏻
Rose Madura Great post Rita and Happy Anniversary! 💪🪖❤️🩹
Pamela Gregory Nice post! I agree that most don't share too many of the uncomfortable things because they don't want ... Read more
Pamela Gregory Nice post! I agree that most don't share too many of the uncomfortable things because they don't want to scare others. Everyone is different as you said and will have their own ups and downs.
Susan Lynn Happy Anniversary, Rita! Wishing you many, many decades of good health and future celebrations! x... Read more
Susan Lynn Happy Anniversary, Rita! Wishing you many, many decades of good health and future celebrations! x9
I'm re-posting my favorite xray, taken about 7 weeks after triple heart valve surgery in 2015. The mechanical mitral valve is the big "O", the rectangle right ...Read more
I'm re-posting my favorite xray, taken about 7 weeks after triple heart valve surgery in 2015. The mechanical mitral valve is the big "O", the rectangle right above it is the mechanical aortic valve seen straight on, the oval to the left of the mitral is the reinforced/repaired tricuspid valve. The sternal clips and large pacemaker are easy to see. And the white area at the bottom of my lungs is a pleural effusion, my 4th one after surgery, which was drained the next day.
Grace Mason This is a very cool pic. Happy 9th anniversary Rita! 🎊💐❤️.
Jeff Williams Here's my favorite X-ray. It's very cool to see the valve so clearly. Thanks for sharing your story ... Read more
Jeff Williams Here's my favorite X-ray. It's very cool to see the valve so clearly. Thanks for sharing your story with all of us "newbies".
Rita Savelis I don't see any valves on your cool xray Jeff...but your lungs look clean.
Jeff Williams To the left of my 5th wire down. It's at a 45 degree angle
Another year has gone by and it’s anniversary
time again.
8 years ago, in April 2015, at age 53, I
had heart valve surgery. My valves were ...Read more
Another year has gone by and it’s anniversary
time again.
8 years ago, in April 2015, at age 53, I
had heart valve surgery. My valves were damaged due to radiation-induced
stenosis caused by cancer treatment that I had in 1977.
My aortic and mitral valves were
replaced with mechanical valves, my tricuspid valve was repaired, and a
permanent pacemaker was implanted a few weeks later. I was in hospital 4 weeks,
in a live-in rehab for 3 weeks, and went back into hospital for 2 more weeks a
few days after returning home from rehab.
I wasn’t told how long I’d be in
hospital before I went in. I remember my surgeon mentioning that I would be
tired for a long time, an indefinite time. When I asked: “Tired?”, he said;
“Well, you’ll do one thing and that will exhaust you for the rest of the day.”
I discovered the heart valve surgery
site a few months before surgery. Some posts I could not relate to: “You’ve got
this!” or “The wait before surgery is the worst part”.
I’m an outlier, and after surgery I did
not want to post a smiling selfie. I didn’t have a phone in ICU. I didn’t feel
like communicating for weeks after surgery. Pre-surgery anxiety hadn’t moved
peacefully into post-op gratitude. I felt awful. I was exhausted. I did not
have plans to train for a marathon.
But I needed to write my personal
narrative. And I did. And some people read my posts. And others wrote their own
narratives that inspired me. They were honest and real and helpful and
beautiful. And hard. And some had the same sense of dark humor that I had. I
always remember someone writing that heart surgery was like getting hit by a
truck. I was hit by a truck. And that needed to be said.Big shout out as always to the
classes of 2015, 2016, 2017. Thank you to Alina, Barbara, Kate,
Shannon, Civita, Meredith, Marie, Rose, Wanda, Jennifer, Lilly, Terrie, Craig,
Leslie, Alex. And many more. You are wonderful.
8 years later I take anticoagulants because
I have 2 mechanical valves.
I take ivabradine, a “hyperpolarization-activated
cyclic nucleotide gated channel blocker” which slows the heart rate so that the
heart can pump more blood through the body each time it beats. I was prescribed
this a year after surgery when I stopped betablockers.
I also recently restarted the diuretic
Lasix as the recurrent pleural effusions I had for a few months after heart surgery
came back a few years ago and appear to be chronic.
I see a rhythmologist (pacemaker doctor)
once a year and a cardiologist twice a year.
I have an echocardiogram once a year.
No one has said anything negative about
my valves in the past 8 years.
I get out of breath on stairs, when I
carry a heavy load, when I walk fast, and in dance class.
I feel a heaviness in my chest. It’s my
normal.
Being followed for cardiac issues is
hard. One can go crazy overthinking. Put your trust in science and your
surgeon. And then think about other things. Take a dance class. Have a cup of
coffee in a nice café. Watch a bad documentary on Netflix.
You only need to show up for surgery,
not perform it. You don’t need the best surgeon, only a good surgeon, and you
need to trust him or her. Your body is singular, and some decisions may be made
once he or she is holding your heart. Whatever valve choice you make, or don’t
make, is right for you at that moment. There is not one right way to go.
Recovery can take a few days or many months. It’s all “normal”. Even if you don’t get a free heart pillow from
your hospital you can use any old pillow. Mine was green and square-shaped and
purchased used in a charity shop. It worked fine as a barrier between my chest
and the world.
In honor of my 8th anniversary,
I’ll re-share a post I wrote on the heart-valve site in 2017:
1. I am
jealous of men because they can, and do, take bare chested full scar photos,
sometimes immediately following surgery.
2. I
have my surgical report, but I don’t really understand most of it.
3. I
can’t tell you offhand the brand of mechanical valves I have (although it’s
written somewhere).
4. I
can’t explain what an ejection fracture is.
5. I
didn’t have any ice chips in ICU.
6. I
was too tired to watch TV for the first week following surgery.
7. I
took my first shower 17 days after OHS with the help of a male nurse.
8. I
can honestly say I did not have pain from my sternum cut. However, I do not
have adequate words to describe the exhaustion and discomfort I felt for weeks
after surgery.
9.
Before OHS, I had no idea that needing a pacemaker was a possible (3%) side
effect of surgery.
10. I
confess to not preparing anything in my house or in my fridge before OHS.
11. The
most important thing I brought to hospital was a hair elastic.
12. The
best thing I received in hospital was a thermos of vegetable soup brought by a
neighbor.
Marie Myers Great post as usual, Rita!! Happy Anniversary, and I wish you many more healthy years!
Alina Wilson Oh, sweet, dear Rita! Your words go straight to my soul! I wish you many, many, many more anniversari ... Read more
Alina Wilson Oh, sweet, dear Rita! Your words go straight to my soul! I wish you many, many, many more anniversaries! It's because of people like you that I keep going. Such inspiration. Thank you always for sharing so beautifully and honestly! 💜 Also: 100% this: 8. I can honestly say I did not have pain from my sternum cut. However, I do not have adequate words to describe the exhaustion and discomfort I felt for weeks after surgery. Much love! Continuous health!
DeLois Tweedy Rita, just read your post. Wow! You have a way with words that is uplifting, honest, encouraging and beautiful. Happy 8 yr anniversary! Again, wow!
I am a fellow Hodgkin's survivor (1977 radiation treatments) which damaged my valves, (etc, etc as you well know). I had TAVR in 2020, and still have much to face that needs repairing/replacing. My heart is a mess!
But thanks to this site and posts such as yours, I know I can get through what I face. I think the key to alot of it is honesty with everyone else, but mainly with yourself. Heart surgery isn't just physical, it's also psychological and deeply emotional. ... Read more
DeLois Tweedy Rita, just read your post. Wow! You have a way with words that is uplifting, honest, encouraging and beautiful. Happy 8 yr anniversary! Again, wow!
I am a fellow Hodgkin's survivor (1977 radiation treatments) which damaged my valves, (etc, etc as you well know). I had TAVR in 2020, and still have much to face that needs repairing/replacing. My heart is a mess!
But thanks to this site and posts such as yours, I know I can get through what I face. I think the key to alot of it is honesty with everyone else, but mainly with yourself. Heart surgery isn't just physical, it's also psychological and deeply emotional.
Again, thank you for sharing what must have been your honest thoughts and feelings as you reflect on this your anniversary. I'm thankful to have you as a "heart friend" on this site. Blessings!
Pamela Gregory Congratulations for 8 years with everything working reasonably well! I loved your post. Thanks for r... Read more
Pamela Gregory Congratulations for 8 years with everything working reasonably well! I loved your post. Thanks for re-sharing. I think our mind blocks out certain parts of what has happened to us as protection. I hope you have many, many, many more years to share with this community!
Civita Fahey Happy Anniversary Rita.. I wish you many many more.. so nice to hear from you!
Susan Lynn You're totally amazing, Rita! You bring such an important and honest perspective to this site. S... Read more
Susan Lynn You're totally amazing, Rita! You bring such an important and honest perspective to this site. Surgery and recovery aren't easy and can be more difficult than we anticipate. Glad you're celebrating your 8th Anniversary with us! Wishing you continued good health!
Rose Madura Happy Anniversary Rita. I hope you have many more years! Your perspective is spot on. It's not alw... Read more
Rose Madura Happy Anniversary Rita. I hope you have many more years! Your perspective is spot on. It's not always an easy road, in fact it's darn right difficult. God bless you!
Louise Moore Dear Rita, A very Happy Eighth Anniversary to you 😊💞
Kate Watson So good to hear your "voice" again Rita, after all this time. You were always an important person to... Read more
Kate Watson So good to hear your "voice" again Rita, after all this time. You were always an important person to me - the first, and maybe only, "multiple valve" replacement patient that I met here. It was comforting to me then and now to know I'm not the only unicorn in that regard and also in how rough my recovery process was. Much love to you. Happy anniversary and thank you for being you.
Grace Mason Cheers to your 8th year! I just found out about the 3% chance of pacemaker after talking to a 3rd ... Read more
Grace Mason Cheers to your 8th year! I just found out about the 3% chance of pacemaker after talking to a 3rd surgeon and was wondering why I hadn't heard that before. Thanks for sharing some other things not considered.
Also, I am jealous that men don't have the extra weight of breast tissue that will be pulling on each side of their incision
Klara Čičić Rita, thank you for your honest and real perspective, I love it. I had laugh at "bad documentary on ... Read more
Klara Čičić Rita, thank you for your honest and real perspective, I love it. I had laugh at "bad documentary on Netflix".It is always inspiring hearing your words. I wish you many more anniversaries, the best cups of coffee and lots of dance
Patsy Stewart Happy 8th Anniversary, Rita! Through all of your medical trials, you give me hope and a renewed stren ... Read more
Patsy Stewart Happy 8th Anniversary, Rita! Through all of your medical trials, you give me hope and a renewed strength to never give up. Thank you for always telling the truth and for not sugar coating anything....as tough as that might be to bare your heart.~❤️
Hello to all my old friends from this site. I had heart valve surgery in April seven years ago but had forgotten the date (until I looked at an old calendar). ...Read more
Hello to all my old friends from this site. I had heart valve surgery in April seven years ago but had forgotten the date (until I looked at an old calendar). Seven years ago today I had my aortic and mitral valves replaced with mechanical valves, my tricuspid valve repaired and a few weeks later an unexpected pacemaker installed (happens in about 3% of cases). I had a long slow recovery and my empathy goes out to those who linger in recovery. I didn't feel like posting a smiling selfie after OHS, I felt like I had been hit by a truck. But now it's seven years later. I still get out of breath on stairs and if I walk too fast. I had 4 pleural effusions after my surgery and after a respite of 6 years have been getting them again recently. I had 3 cancers (2 surgeries, chemo, pelvic radiation) in the past few years but life is good. I take anticoagulants, have a high target INR and get blood tests about once a month. I'm okay. Heart surgery seems far away. Sending out good thoughts to those of you with upcoming surgeries and those of you who are recovering. Take your time. Rest. Every surgery and recovery is singular and personal. Everything is normal. It's hard. And then 7 years go by. Lots of love. xoxo
Rose Madura Rita, congratulations on 7 years! You are a true heart warrior and cancer survivor. You take thin... Read more
Rose Madura Rita, congratulations on 7 years! You are a true heart warrior and cancer survivor. You take things for what they are and your thoughts about surgery are spot on. Thank you for sharing your thoughts on this site and bringing encouragement to all of us.
Lisa Coombe could never forget my date, its my aunty's birthday
Carol Hughes Rita, so sorry you have had to go through all this. Prayers.
Bridget Supple Rita, so glad to see a post from you. I came on to post about my 5th anniversary, which was a little ... Read more
Bridget Supple Rita, so glad to see a post from you. I came on to post about my 5th anniversary, which was a little more than two weeks ago, and saw your post. You were one of the first posters I saw on here, and served as quite an inspiration for me. Thanks for doing that, as I was not sure at all that I could get through it. Hope you are over the worst of your health troubles. Take care.
Kimberly Goodloe God bless you Rita, today and always. Have a lovely week Kimberly
Alina Wilson Rita, you are such a warrior and an inspiration! Thank you for the update! Stay strong and fight well ... Read more
Alina Wilson Rita, you are such a warrior and an inspiration! Thank you for the update! Stay strong and fight well! Much, much health to you!
Thank you for your inspiring post. So glad to read that after all you have gone thru you are still th ... Read more
Thank you for your inspiring post. So glad to read that after all you have gone thru you are still thinking of others. Happy 7th valve anniversary and God bless you 🙏❤️
Leona Resch Hello Rita! You are an inspiration to all of us! You are still thinking of encouraging others through ... Read more
Leona Resch Hello Rita! You are an inspiration to all of us! You are still thinking of encouraging others through their recovery despite all you have had to contend with. I had a surgical aortic valve replaced Dec20 and came home on Christmas! There have been ups and downs but I feel grateful fir the people here that make me feel normal and the experiences they have gone through. It helps so much to know you’re not alone! I wish you good health and much peace in 2023!! ❤️❤️❤️
Leslie Bakos Hi Rita, my time is near another Hodgekins survivor from the 80s
Today is my 6th anniversary of OHS (2 mechanical valves, one repaired valve, one pacemaker).
I had 4 pleural effusions in the days and weeks following OHS. ...Read more
Today is my 6th anniversary of OHS (2 mechanical valves, one repaired valve, one pacemaker).
I had 4 pleural effusions in the days and weeks following OHS.
And then they stopped.
But this year (6 yrs later) I had 3 more.
This might be because my heart was stressed out as I came down with 2 unrelated cancers and was in hospital 4 times.
I had radiation + chemo everyday for 2 months for anal cancer. And then a few months later I had my right breast removed because of a small breast tumor. These were my 4th and 5th cancers. I had my first cancer at age 15 (Hodgkin's disease) and the subsequent radiation treatment did damage to my heart valves which showed up 30 yrs later, and led to OHS. And that early radiation most probably also caused the 3 later breast tumors.
Those of you who have mechanical valves might know that if you are hospitalised for any invasive procedure (such as a needle biopsy, colonoscopy, surgery) you need to stop oral anticoagulants and have a few days of shots or intravenous heparin before your procedure. And then do a relay afterwards taking both oral anticoagulants and shots/intravenous heparin until you get back to your normal INR. This is a drag, but not as big a drag as OHS and cancer.
It's all doable.
I have a high target INR (3 to 4.5) so it takes me longer.
Anticoagulants are a drag but one gets used to them after a few months/years and then you stop worrying and just live your life.
I don't worry about my valves, which show as fine at every ultrasound. I had many ultrasounds this year due to the pleural effusions. The rhythmologist also adjusted my pacemaker to a lower level saying my heart was doing well. But 3 months later my pulse went down to 40, so the pacemaker was turned back up. This year my heart showed a bit of insufficiency and occasionally backed up liquid in my lung linings. So I took lasix, either by injection in hospital, or by pill at home. I'm hoping that as things calm down, my heart will too.
I almost forgot we were living in covid-times last year because of all the other stuff I had to deal with. Here in France we are still in a light lockdown with a 7pm curfew and no travel allowed more than 10 km from your home or to another region of France. All restaurants and cafés are closed as well as cinemas, theatres, museums, big shopping centers and clothing stores. I still go grocery shopping and to the bakery and take the subway and go to the hospital and myriad doctors appointments. I miss the cafés because I get cold outside and would like to stop at a café counter to warm up and have a coffee or use the toilet. But that can't happen.
Other than that I was happy to spend time inside and resting on the sofa in 2020, especially during the 2 months of everyday pelvic radiation.
I sometimes ask myself : which is worse, cancer or OHS? I don't have an answer, just that each is shitty in its own way.
You suffer and then you move on.
It's awful and then it's better.
I'm okay.
Take care.
And a shout out to the class of 2015 and 2016.
Kimberly Goodloe Hi Rita. I will pray for your health condition. Sharing how I stay positive, focused and encouraged ... Read more
Kimberly Goodloe Hi Rita. I will pray for your health condition. Sharing how I stay positive, focused and encouraged
a) I find one reason to smile every day
b) I maintain a positive outlook on life
c) I rely on my faith in God to keep moving forward
d) I depend on my family and friends to always offer words of encouragement
e) I focus on the good, despite my health obstacles
May your day be filled with peace and blessings.
Sincerely,
Kimberly
Marie Myers Rita- You have been dealt a difficult hand in the health aspect of your life. But like you said, you ... Read more
Marie Myers Rita- You have been dealt a difficult hand in the health aspect of your life. But like you said, you suffer and then move on. Wishing you could get a nice croissant and hot coffee at a delightful cafe to celebrate your 6 th heart surgery anniversary, But I guess you will celebrate at home. Hope you have a smoother road to better health as well.
And to Kimberly, thanks for always writing such positive and encouraging words!
Kimberly Goodloe Please feel free to share the special message ( daily affirmation) below with anyone coping with he ... Read more
Kimberly Goodloe Please feel free to share the special message ( daily affirmation) below with anyone coping with health obstacles on a regular basis.
Today, I choose happiness: despite my current health challenges : I will maintain a positive attitude: I’m beautiful, loved, and blessed
Rita Savelis Marie and Kimberly - you are beautiful, loved and blessed! Thank you for your kind words.
Susan Lynn Rita - Happy 6th Anniversary. I am so terribly sorry you have had to endure such a difficult year - ... Read more
Susan Lynn Rita - Happy 6th Anniversary. I am so terribly sorry you have had to endure such a difficult year - you are beyond the definition of resilience! I'm not sure where you find your inspiration, but wherever it is, you're successfully persevering during unimaginable times. Stay strong - look ahead. You are absolutely amazing!!!
Barbara Laurie You’re our fighter Rita! You’ve been quiet and I’d hoped that meant you had some freedom from s ... Read more
Barbara Laurie You’re our fighter Rita! You’ve been quiet and I’d hoped that meant you had some freedom from suffering kiddo. 😕but you still have your spirits! I just celebrated my 5 yr, and I can’t believe you’re at 6! God Bless you Rita. I’m so sorry about the cancer creeping back. The fact that you keep fighting gives us all strength! 🌸💕🌸
Rita Savelis Dearest Barbara, So lovely to hear from you. I hope you are well. Yeah 5 years!
I have SO many docto ... Read more
Rita Savelis Dearest Barbara, So lovely to hear from you. I hope you are well. Yeah 5 years!
I have SO many doctors in every specialty working on my case. At least nothing goes unnoticed. If only they would all communicate better (within the same hospital). Being an experienced patient helps. Not much surprises me anymore. I do shout about the injustice of it all but remain grateful for all the care. And I always have fond thoughts about you and the class of 2016. Such a wonderful group. Take care.
Rose Madura Hi Rita, you have been through so much and your way with words is always an encouragement. Congratul ... Read more
Rose Madura Hi Rita, you have been through so much and your way with words is always an encouragement. Congratulations on 6 years and may you have a smoother ride from now on. God bless you!
Alina FH Rita, my dear, go to your bookshelf just now and pick up any dictionary, in any language. Look for th ... Read more
Alina FH Rita, my dear, go to your bookshelf just now and pick up any dictionary, in any language. Look for the word “survivor”. It will have your pretty picture right next to it. Thank you for sharing. Thank you for fighting it all. Thank you for being. Here’s to many, many, many more years of strength! Hugs.
Hi Rita, reading your post reminds me of “Job” In the Bible. You are an inspiration to us all in ... Read more
Hi Rita, reading your post reminds me of “Job” In the Bible. You are an inspiration to us all in resiliency and gratitude as you have not complained and have always been very supportive and encouraging to others on this site. Congratulations on your 6th OHS anniversary. Will pray for your road ahead in life be smoother health wise and thank for sharing your story. God bless you and continue to keep you strong and encouraged.
Shannon Gray Rita... oh, I’m so sorry you’ve faced continual struggles. You are one of the strongest people I ... Read more
Shannon Gray Rita... oh, I’m so sorry you’ve faced continual struggles. You are one of the strongest people I know and I’ve gained so much from “knowing” you. You are beyond resilient. I’ll keep you close in my heart.
Civita Fahey Happy Anniversary Rita.. May you have many more. You inspire all of us.!
Rita Savelis Love to you Shannon and Civita!
(How are you Shannon? Been thinking about you since your last post... ... Read more
Rita Savelis Love to you Shannon and Civita!
(How are you Shannon? Been thinking about you since your last post....)
Kimberly Goodloe Hello I hope everyone have a happy and blessed week. Sincerely, Kimberly
Kimberly Goodloe Good morning, Rita. How are you feeling today? I hope you have a relaxing week
Dolly Makkar God bless you Rita. I gained so much strength after reading about your journey. Thanks for inspiring ... Read more
Dolly Makkar God bless you Rita. I gained so much strength after reading about your journey. Thanks for inspiring words.
More than 5 years after OHS, my mechanical aortic and mitral valves are fine, my repaired tricuspid valve is fine, my pacemaker works.
But my heart is not ...Read more
More than 5 years after OHS, my mechanical aortic and mitral valves are fine, my repaired tricuspid valve is fine, my pacemaker works.
But my heart is not perfect and so, alas, I developed a pulmonary effusion again (I had 4 of them 5 years ago). I was suddenly getting tired very easily and out of breath with the slightest effort.
So I was hospitalised on Dec 30th to have tests and and injections of diuretics. I'll be leaving tomorrow with diuretic pills (lasix) to take.
It's always a letdown when my heart poses another problem. I'm okay. But I wish I were perfect.
2020 was hard for everyone (except maybe Jeff Bezos). I haven't had covid (yet) but I got cancer again in 2020 and had pelvic radiation and chemotherapy in August/September.
It was hell, as cancer treatment is.
I had my first cancer as a young teenager in 1977 (Hodgkin's disease) and the subsequent radiation and chemotherapy are what slowly damaged 3 of my heart valves.
Chest radiation also causes breast tumors and thyroid problems. I've had them.
Sometimes I ask myself the existential question : which is worse - heart surgery or cancer?
It's a tough question because they both make you feel like you got hit by a mack truck.
You think: never again. And then time passes and you go on.
It's hard. Many of you are going through hard times. Science and luck will get you through. You don't have to be a superhero.
Admitting that it's scary and awful can help.
It is what it is.
You go on. You'll be different but okay. But maybe not today or tomorrow. Maybe it will take time. So give yourself time.
Happy 2021 from a hospital in Paris.
Marie Myers Oh, Rita! So sorry to hear you are in the hospital! You have been dealt a lifetime of difficult healt ... Read more
Marie Myers Oh, Rita! So sorry to hear you are in the hospital! You have been dealt a lifetime of difficult health challenges. But yet, you always offer a great way of dealing with it. I love reading your posts, and hope you are able to get home soon! Wishing you a healing New Year!
Rose Madura Rita, I'm so sorry you are having to deal with more health challenges. You sure have had more than y ... Read more
Rose Madura Rita, I'm so sorry you are having to deal with more health challenges. You sure have had more than your share. Your good and realistic attitude will certainly help you in your journey. I also enjoy when you offer insight. It's usually spot on. Take care.
Alina FH Rita, I am so sorry to hear this! Much health for the new year. Stay safe! ❤️
Steven Methot Rita, mes meilleurs vœux pour vous aujourd'hui, demain et au fur et à mesure que vous avancez, une ... Read more
Steven Methot Rita, mes meilleurs vœux pour vous aujourd'hui, demain et au fur et à mesure que vous avancez, une étape à la fois. Bon Courage!
Tracy Fallu I’m so sorry to hear about your healthy battles Rita. May this year bring you good health, joy and ... Read more
Tracy Fallu I’m so sorry to hear about your healthy battles Rita. May this year bring you good health, joy and many blessings to you.
stephanie arnold oh Rita, and I never dreamed what you have gone through while you have me such beautiful feedback to ... Read more
stephanie arnold oh Rita, and I never dreamed what you have gone through while you have me such beautiful feedback to my rants and whines. God Bless you your courage, your grace under fire. get well.love you...❤❤❤steph
Rita, I am at a loss for words to hear how much you have gone through. But I know you will come out o ... Read more
Rita, I am at a loss for words to hear how much you have gone through. But I know you will come out of this health issue. God bless you and keep you strong to face your health issues and conquer them. My dad was French via Quebec but never taught us the language though I love it, so I’m glad that Steven can show off his French with you. God bless you
Rita Savelis Merci Steve and Thank you everyone.
Tracy: I smiled at your typo "healthy" battles!
Alina: You've won ... Read more
Rita Savelis Merci Steve and Thank you everyone.
Tracy: I smiled at your typo "healthy" battles!
Alina: You've wonderful. Hope you're well.
Rose and Marie: You're always there
Stephanie: Keep ranting
Ana: Thanks for the support
Thanks to all for reading my rants and raves and letting me be negative for a day (or a week). Those who know me know that that's what I do. And then I carry on.
Shannon Gray Oh Rita! I am so very sorry to know this is happening to you. You have had an uphill battle with heal ... Read more
Shannon Gray Oh Rita! I am so very sorry to know this is happening to you. You have had an uphill battle with health concerns for a while now, but happen to be one of the bravest, strongest, “real” people that I know. Sending you thoughts of peace and light. We’ve got you!
Ed Miskovic Your words, "rants and raves," tug my heart to lean towards you and listen. Thanks for sharing in the ... Read more
Ed Miskovic Your words, "rants and raves," tug my heart to lean towards you and listen. Thanks for sharing in the good times and in the not so good ones. Your words may give comfort and courage to someone.
Kate Watson Rita! I just came on here randomly and wanted to see if you've posted lately. Wow I'm so sorry to he ... Read more
Kate Watson Rita! I just came on here randomly and wanted to see if you've posted lately. Wow I'm so sorry to hear what a year it's been for you on top of everything else going on in the world!! You are a true warrior! You've been such an inspiration to me, and I always love and resonate with your authenticity. Sending you many hugs. I hope that you are feeling ok these days. Looking forward to the day when we can meet in Paris..
It’s my 5-year OHS anniversary today.
It feels absurd to think about anniversaries as the world falls apart.
Instead I think of Covid survivors coming ...Read more
It’s my 5-year OHS anniversary today.
It feels absurd to think about anniversaries as the world falls apart.
Instead I think of Covid survivors coming out of ICU. Their physical and emotional healing is only beginning. Healing takes a long time. No one knows what the new normal will be.
I send elbow bumps from afar to those with new valves, and an extra bump to those from the classes of 2015 and 2016.
I was 53 in April 2015, I’m 58 now.
I’ve already written most everything I have to say about my OHS.
OHS was hard. Recovery was hard.
In April 2015 two of my valves (aortic and mitral) were replaced with Italian-made mechanical valves.
A third valve (the tricuspid) was repaired.
I had a large bulky pacemaker installed about 11 days after OHS.
I was in hospital 4 weeks and had 3 pleural effusions drained.
I then spent 3 weeks in a live-in rehab hospital.
A few days after release, I went back to hospital through emergency, had a 4th pleural effusion drained and stayed another 2 weeks.
About 5 months after OHS, I went into a 7-month depression.
I wrote about all those things, which was necessary.
I read the stories of others with whom I felt a closeness brought on by their honesty and sincerity.
I was on this site a lot for about 3-4 years.
Thank you, Adam.
Since OHS I take coumadin (8 to 10mg) everyday and have my blood tested about once a month, sometimes more often. My target INR range is 3 to 4.5, and I am usually somewhere in there. My cardiologist, who I see every 6 months, would rather have me in the higher range than at a lower range.
I eat whatever I like and have stopped thinking about INR. That took years.
I still get tired on stairs and walking up hill. I take dance classes, but get out of breath on quick aerobic passages, so I stay in the back of class and fake it.
Perhaps that’s just age.
I don’t think about OHS much anymore and have grown used to the loud pounding of my heart.
There is a lot else to think about in April 2020.
Please take it easy. Take it slow. Allow yourself the time to heal. There is no norm for how long your individual healing might take. Take the time it takes.
Susan Lynn Rita - Happy 5th Anniversary! I think it's perfectly appropriate to celebrate your anniversary! Yo ... Read more
Susan Lynn Rita - Happy 5th Anniversary! I think it's perfectly appropriate to celebrate your anniversary! You have successfully made it through surgery and a difficult recovery - you did it! Nothing diminishes that tremendous accomplishment. You've also inspired many people on this site with your encouraging words. Celebrate! You are so deserving! ❤🍾🥂
Marie Myers I agree with Susan. You have posted such amazing and helpful stories in the past. Today is your Anniv ... Read more
Marie Myers I agree with Susan. You have posted such amazing and helpful stories in the past. Today is your Anniversary and your triumph, no matter what is happening in the world.
Kate Watson I know what you mean, Rita. I had my 4 year "valversary" on the 8th of this month, and it felt diffe ... Read more
Kate Watson I know what you mean, Rita. I had my 4 year "valversary" on the 8th of this month, and it felt different this year. But it's still worth celebrating, so we did so quietly at home (since we can't go anywhere :) I've always related to you and your story, and you were such a great source of support to me during my healing. I still continue to heal on multiple levels 4 years later, it's been a non-linear road for sure. I still have lots of fatigue and shortness of breath too. My cardiologist said that I will likely always be this way due to the 2 mechanical valves. Thinking of you, sending hugs and wishes of good health. xo
Chris Calhoun celebrate YOUR LIFE!! Every time you get the chance!!!!!!!!
Wanda Mroz Rita, your posts have helped countless other people I am sure. You are an amazing example of success ... Read more
Wanda Mroz Rita, your posts have helped countless other people I am sure. You are an amazing example of success with a lot of bumps in the roadway. Happy 5th anniversary! I don't get to mine until August this year. Be safe, be well, celebrate your life every day! And you are right, there are so many things to think about these days other than OHS. Be well, and have a good Easter Sunday! Hugs.
Jim Wilson Rita, NO WAY absurd! Quite the accomplishment and you should celebrate!
Rita, it’s so good to read your post today. I’m four months post op from OHS had the Bentall proc ... Read more
Rita, it’s so good to read your post today. I’m four months post op from OHS had the Bentall procedure. Needed to hear about being patient with my recovery, couldn’t get to do cardiac rehab due to insurance and now the COVID. Have not seen a Cardiologist in almost four months and won’t see one if all goes well until June. I am not experiencing anything major but would like to have an echocardiogram to make sure everything is in place and answers to some questions. Very uncertain times but I’m staying positive and faithful and trying to be patient. So grateful for this site and all of you in it. Be well and be safe. God bless you all
By the way you are a brave warrior of the heart. Thank you
Happy Anniversary, well done!
Shannon Gray Rita... celebrate, celebrate, celebrate! I have been looking for an update from you and was so happy ... Read more
Shannon Gray Rita... celebrate, celebrate, celebrate! I have been looking for an update from you and was so happy to read yours. You have been a tedious source of support for so many in this site, and sharing the reality of heart surgery is so needed. It’s hard... no way around it, but to have been witness to monumental recovery has been a gift. Sending hugs right back to you!
Rob Sparling Rita, you’ve earned the right to say whatever you want and feel no guilt about passing those hurdle ... Read more
Rob Sparling Rita, you’ve earned the right to say whatever you want and feel no guilt about passing those hurdles. Thanks for all you have said and done in support! It means the world!
LINDA ROBERTS I appreciate your honesty during your journey for it has been a help to me. You are proof that one c ... Read more
LINDA ROBERTS I appreciate your honesty during your journey for it has been a help to me. You are proof that one can triumph inspire of many hurdles. Congratulations on your heart anniversary. Stay safe during this scary COVID 19 pandemic.
Joyce Shelby A beautiful recollection of your thoughts and memories of OHS that we can all relate too. Continued ... Read more
Joyce Shelby A beautiful recollection of your thoughts and memories of OHS that we can all relate too. Continued health to you!
Alina FH Virtual, healthy hugs from a time when this will be possible again, Rita! Just now read this. I hope ... Read more
Alina FH Virtual, healthy hugs from a time when this will be possible again, Rita! Just now read this. I hope for health for you! 💜
What to say on my 4th anniversary (that hasn’t been said at my 1st, 2nd and 3rd anniversaries)?
I had OHS at age 53, on April 10th, 2015, because of RACD ...Read more
What to say on my 4th anniversary (that hasn’t been said at my 1st, 2nd and 3rd anniversaries)?
I had OHS at age 53, on April 10th, 2015, because of RACD (Radiation Associated Cardiac Disease), which means that several of my heart valves were calcified/messed up by the radiation treatment I had at age 15 when I was treated for cancer (Hodgkin’s disease) with chemotherapy and radiation. This type of radiation induces calcification, which shows up years after radiation, and is different from other types of Aortic or Mitral Stenosis.
Here’s some of the dry stuff you can read about RACD in medical papers on the internet (all true):
“Cardiac surgery in Radiation Associated Cardiac Disease (RACD) is often complex and therefore best undertaken by experienced surgeons at an experienced center. As radiation exposure is heterogeneous, patients cannot be uniformly managed and require individualized surgical approaches. In our experience, a "complete" one-time operation should be considered. This is especially important in multi-valve disease, where one valve may have severe dysfunction and another mild or moderate. Even in experienced centers, the outcomes of RACD patients undergoing cardiac surgery are significantly worse than a comparable matched population. Furthermore, re-operative surgery in RACD portends increased operative risk and morbidity compared with non-RACD surgery, so every attempt should be made to address all issues with a one-time complete operation. Managing patient expectations is critical, as post-operative complications can significantly impact recovery and quality of life….”
Before surgery I was followed for 6 years by a cardiologist, and when I developed “symptoms” (out of breath, tiredness) he made my appt with a surgeon who heads the vascular surgery department at the HEGP (Hôpital Européen Georges Pompidou), a surgeon experienced with RACD surgery. I never researched which surgeon to use or which hospital to go to. To be honest, I didn’t want to think about it too much. I wanted to trust. And luckily, as an American living in France, I had no dealings with an insurance company. I don’t know how much any of it cost.
I remember the day, a few months before my surgery, when I called the surgeon’s assistant to book my surgery. She let me pick ANY day I wanted, as if his agenda were completely wide open. I picked a random Friday. And felt strange all day. Maybe I should call back and cancel?
My aortic and mitral valves were replaced with Italian mechanical valves, plus, as a bonus, I got a repair of my tricuspid valve (never mentioned before surgery). A few weeks later, I was still in hospital with a heart that could not properly regain, due to surgery, its rhythm/electrical connections and so I had a permanent pacemaker installed, a side effect of OHS, that apparently occurs in 3% of patients.
I spent 5 days in ICU, 4 weeks in hospital, 3 weeks in a live-in rehab hospital and then 2 more weeks back in hospital when I needed a 4th pleural effusion drained (I had 3 in the first month) and also because it took a while for my INR to get where it needed to be.
My surgeon had not promised that OHS would be easy or that I’d feel better than before, or that my recovery would last a specific amount of time that could be predicted.
After finally getting home and back to work in July I remember spending the first summer after my April OHS exhausted and cold all the time, not feeling like doing anything much. In September I went into 7 months of depression. I had to learn how to trust my body again.
I have written posts about much of this.
Being on this site allowed me to write for anonymous readers, and to read others’ stories. I admit that OHS experiences with Instagram perfect recoveries made me feel like a misfit. Pre-surgery was not harder than post-surgery for me. The last thing I could imagine doing during my first weeks in hospital was posting a “smiling selfie”. That was so far from my reality. There were no cell phones in ICU, and once I got to the stepdown hospital room I could barely open my eyelids because I was so exhausted. Even watching TV was out of the question.
But weeks/months after OHS I found kindred spirits on this site who validated that what I was going through was “normal”.
Some wrote so beautifully, that reading them made me feel I knew them. I wanted to hug them and say, “I know”.
Today, 4 years later, I log onto the heart valve site less often. For several years after OHS I felt a need to post regularly in order to support those who were dealing with side effects (not all of which are mentioned by surgeons pre-surgery) and recovery, with questions about what is normal, and why don’t I feel better right away, and what is a new normal anyway, and why do I think about my heart all the time, and why does it pound so hard, and why is INR stabilization taking so long…
I hear you. Every recovery story is valid and normal. It’s yours. Heavy things happen, and we get through them. It’s hard, and there are down days. And there are good days. And they go back and forth. And we second guess our choices. My heart still pounds hard and my INR goes up and down, and I get migraines and vascular headaches, my pacemaker bulge bugs me when I see it in the mirror…. But, these things are no longer central.
I’m okay.
I don’t feel like running a marathon, but then I guess I never did.
Many of the physical changes I feel are probably just old age and not heart related anymore.
I dance flamenco and I fly to other continents and I walk, and I climb stairs and I take the subway and climb more stairs. I go to work. I carry groceries for blocks. I watch Netflix. I read. I eat what I want to. I take my meds. I don’t freak about INR levels anymore.
OHS was a transforming life experience, like cancer, like birthing a child, like losing a loved one. It encompassed hard moments and it took a long time to process and left me changed. It moved my life to a new, different normal. But that normal is now normal.
A big hug to my buddies in the class of 2015 and 2016! And to those from the years before and after. Thank you for being there. Thank you to Adam for making it possible for us to all know each other.
Diane Esposito What a beautiful post, Rita. God bless you.
Mike Roskowinski Great post Rita and congrats on your 4 year anniversary. Awesome to see that you are healed and back ... Read more
Mike Roskowinski Great post Rita and congrats on your 4 year anniversary. Awesome to see that you are healed and back to normal life. God Bless
Kimberly Goodloe Congratulations Rita. I pray good health for you and our Heart Valve Community today and every d ... Read more
Kimberly Goodloe Congratulations Rita. I pray good health for you and our Heart Valve Community today and every day
Diane Maher I have followed your posts for the past year and today I would like to offer my personal thanks for y ... Read more
Diane Maher I have followed your posts for the past year and today I would like to offer my personal thanks for your wonderful words of wisdom which have resonated with me on so many countless but meaningful levels.
After my surgery in August, it took me a month to have the energy to even log onto the site. But in the back of my mind, I was recalling your various posts about the need to give yourself space, the level of exhaustion after surgery, your amazement about other's ability to so quickly post thumbs up selfies and it was okay not to gloss over the hard parts of recovery, someone might need to read them like you said you did.
I felt more reassured and encouraged when reading someone's 'hard parts'...no its not just me.
Today, you write "I admit that OHS experiences with Instagram perfect recoveries made me feel like a misfit. Pre-surgery was not harder than post surgery for me." I could not have expressed this feeling more perfectly.
Many, many thanks Rita for your thoughtful and personal posts....they have made a difference. Hugs.
Barbara Wood What a great post Rita! And congrats on the day. I landed here searching for others with radiation in ... Read more
Barbara Wood What a great post Rita! And congrats on the day. I landed here searching for others with radiation induced heart disease & found several, which was comforting. Your posts were among the very first I read & they were so very helpful ( & a little scary too:)). But knowledge is power & I like to hear all the sides, the good, the bad & the ugly - that's the power of this site. Many thanks for your thoughtful responses here & best wishes to you! xo
Susan Lynn What an incredible story, Rita! You are certainly an inspiration to all of us. Happy 4th Anniversa ... Read more
Susan Lynn What an incredible story, Rita! You are certainly an inspiration to all of us. Happy 4th Anniversary!! ❤🥂🍾
Marie Myers Another great post Rita. Happy Anniversary!
Kate Watson Always love reading your posts, Rita, because they're so authentic. And they've always been so resona ... Read more
Kate Watson Always love reading your posts, Rita, because they're so authentic. And they've always been so resonant to me and my experience. Like you said to me, your words are important to me too. Plus I have a special affection for you as another multiple valve replacement buddy :)
Shannon Gray Beautiful post, Rita! I have always connected to your words and so thankful to read today’s post.
Jennifer John Beautifully said. You’ve helped me so much, Rita. Thank you.😘❤️
Anna Jones I also thank you, Rita. Your posts helped me tremendously to make it through the surgery and recover ... Read more
Anna Jones I also thank you, Rita. Your posts helped me tremendously to make it through the surgery and recovery.
Mava Reif What a wonderful post! You capture the highs & lows so beautifully! You have helped so many people to ... Read more
Mava Reif What a wonderful post! You capture the highs & lows so beautifully! You have helped so many people to be at peace with how things are after surgery. Thank you
Craig Wise Thank you Rita. I too have always connected with your candor and compassion; for others and yourself ... Read more
Craig Wise Thank you Rita. I too have always connected with your candor and compassion; for others and yourself. You were so kind and helpful to me a few years back. I’m most grateful. I haven’t been on this site in quite some time. I’m pleased to hear you’re doing well, as of your 4th anniversary. I guess 5th is approaching. Best to you.
What to say on a 3rd anniversary ?
I’m sorry you all have to go through this. Some say it’s a piece of cake. Some say it’s challenging.
I’ll say ...Read more
What to say on a 3rd anniversary ?
I’m sorry you all have to go through this. Some say it’s a piece of cake. Some say it’s challenging.
I’ll say it’s very hard.
Some don’t have pain. Some do. I didn’t. But it wasn’t about pain.
Some feel better. Some feel different.
Some are exhausted.
Some have physical reminders everyday years later.
Everyone’s experience is singular, and there is no normal.
You don’t have to be positive if that’s not how you feel today.
Being a realist is okay.
There will be good days and bad days. Sometimes a bad day/week/month is what you need to express. And sometimes you can let it go.
It’s all okay.
If I am still looking at the heartvalve site 3 years later, it’s because there are narratives that touch me, that make me cry, that make me laugh.
I came onto this site in 2015 looking for stories that would give sense to something that didn’t really make sense. Something to make me feel less alone, especially during recovery. Post surgery was when real narrative began for me. It was when writing became essential.
Your story does not have to be for everyone, you don’t have to gloss over the hard parts.
There may be someone who needs to read the hard parts.
The hard parts are harder when you hide them.
I, personally, needed to read the hard parts.
And so I thank you for sharing them.
Alina FH Happy anniversary, Rita! Thank you always for your realism! Your story inspires me because there was ... Read more
Alina FH Happy anniversary, Rita! Thank you always for your realism! Your story inspires me because there was so much thrown at you that you didn’t bargain for, and yet you come out of it with a snarky note every time. Hope you’re enjoying your special day. Much health!
Marie Myers Great post as usual Rita! Wishing you a Happy and healthy anniversary!
Gina Fiorentino Happy anniversary and thank you so much for sharing!
Peggy Whitecotton happy anniversary on 3 years. A day you will never forget. I remember reading your posts as your date ... Read more
Peggy Whitecotton happy anniversary on 3 years. A day you will never forget. I remember reading your posts as your date was just 4 months before mine.
Shannon Gray Happy 3rd Anniversary! Your words and thoughts have been so helpful to me!
Lilly Black Congratulations, Rita! love your post.....it's all so true. Your scars look great, you sound great an ... Read more
Lilly Black Congratulations, Rita! love your post.....it's all so true. Your scars look great, you sound great and I'm happy for you! take care :)
Kate Watson Happy 3rd anniversary! Your words have always resonated deeply with me, Rita, and I was so grateful ... Read more
Kate Watson Happy 3rd anniversary! Your words have always resonated deeply with me, Rita, and I was so grateful when you appeared on here during my recovery. As you said to me, I also always have an extra special fondness for those of us with the multi valve replacements :) Thank you for sharing yourself and your words with us.
Jennifer John Happy belated anniversary, Rita! Love your perspective on all of this. Here’s one of your gems that ... Read more
Jennifer John Happy belated anniversary, Rita! Love your perspective on all of this. Here’s one of your gems that hit home today, just 2 weeks post-op for me:
“We expect to bounce right back. We can't see our hearts, like we could a broken leg, so we are more impatient.”❤️💪🏼🌺
1. I am jealous of men because they can, and do, take bare chested full scar photos, sometimes immediately following surgery.
2. I have my surgical report, ...Read more
1. I am jealous of men because they can, and do, take bare chested full scar photos, sometimes immediately following surgery.
2. I have my surgical report, but I don’t really understand most of it.
3. I can’t tell you offhand the brand of mechanical valves I have (although it’s written somewhere).
4. I can’t explain what an ejection fracture is.
5. I didn’t have any ice chips in ICU.
6. I was too tired to watch TV for the first week following surgery.
(But today, documentaries about baby animals as well as bad game shows give me flashbacks to the time I spent in hospital, after that first week, watching non-cable TV.)
7. I took my first shower 17 days after OHS with the help of a male nurse.
8. I can honestly say I did not have pain from my sternum cut.
However, I do not have adequate words to describe the exhaustion and discomfort I felt for weeks after surgery.
9. Before OHS, I had no idea that needing a pacemaker was a possible (3%) side effect of surgery.
10. I confess to not preparing anything in my house or in my fridge before OHS.
11. The most important thing I brought to hospital was a hair elastic.
12. The best thing I received in hospital was a thermos of vegetable soup brought by a neighbor.
Barbara Wood Nice list Rita! I really hear you on that discomfort & exhaustion...I never had need of a painkiller ... Read more
Barbara Wood Nice list Rita! I really hear you on that discomfort & exhaustion...I never had need of a painkiller after I came home, but the level of fatigue was a huge surprise - lots of naps!
Kate Watson Love this list. I'm still exhausted nearly two years later! My hubby made me soup when I was in the ... Read more
Kate Watson Love this list. I'm still exhausted nearly two years later! My hubby made me soup when I was in the hospital and it was the best thing ever. That and smoothies.
Alina FH LOVE hearing from you, Rita! I can relate to most of it, but number 8 is my favorite: the pain was no ... Read more
Alina FH LOVE hearing from you, Rita! I can relate to most of it, but number 8 is my favorite: the pain was nothing compared to the exhaustion, for me, too! Hugs! 💜💕💜
Living with coumadin, and being okay.
I have 2 mechanical valves and have taken coumadin for 2 years.
Like most, I freaked about having to take anticoagulants, ...Read more
Living with coumadin, and being okay.
I have 2 mechanical valves and have taken coumadin for 2 years.
Like most, I freaked about having to take anticoagulants, and worried a lot during the first few months when I didn’t understand why my INR levels went up and down and if I would ever be stable.
But today, taking coumadin is just another thing I do.
I’m not a pill person and coumadin is the only heart medication I take. I stopped the others (betablockers, etc.) as soon as I could.
I haven’t changed my diet in any way. I have always eaten everything in moderation. I still do. I still eat salads and green vegetables.
I no longer even think about what I eat.
I take my pills before dinner or during dinner or after dinner. Once I forgot to take them and freaked out….but nothing happened.
I do all the activities I did before, although ever since OHS I get tired much more quickly.
I haven’t noticed any more bruising than before.
I get my blood tested once a week or once a month or something in between. I probably test A LOT more than I have to, but with time I think I will test less. I test when I want to and have a standing prescription for blood tests. There is a lab near my house and a lab near my job. There are labs everywhere. A blood draw takes 5 minutes and I look up my results on the internet in the afternoon. Blood tests are free.
For the first 6 months after OHS, when I was still freaking about everything, I checked my results with my doctor (usually over the phone), but now I manage my own results and levels of coumadin. If I want to ask my doctor or the biologist at the lab, I do, but it’s rare.
The coumadin « side effects » I have noticed are :
-an itch on my scalp and shoulders for the first few months. No rash, just a light itch. This went away, after a few months, but occasionally comes back. My cardiologist said that it could be from the coumadin.
- I fart a lot more. Everyday. No odor, just lots of air. Especially in the mornings. This is definitely something that I can associate with taking coumadin because I never farted much before.
- I spot after I have sex, and only then, so I have to wear a panty shield for a few hours afterwards. I had early menopause years ago, so this light spotting is new and I liken it to my tissues being a bit more sensitive (like gums when you brush your teeth). My GP verified that this can be a side effect of coumadin.
Those are the side effects I’ve noticed that no one mentioned to me beforehand.
I have definitely had worse on other drugs !
Since being on coumadin, I had to have surgery (a cancer biopsy) and for that I needed to stop coumadin, go into hospital earlier and be on an IV of heparin. After surgery the heparin IV had to continue until my INR got to where it needed to be with oral coumadin. The hospital kept me in until that happened (in the same way that one stays in hospital after OHS until INR is stabilised).
This is a procedure that has to be followed with any surgery when one is on coumadin.
Because I have 2 mechanical valves I have a high level of target INR (3 to 4,5).
When my INR is a bit lower or a bit higher, I used to FREAK, but now I realise that INR will go up and down, but usually one can pretty much stay with the same dose of coumadin or with very small changes.
INR fluctuates. That’s just how it is.
What I would have liked to have known before coumadin :
-It’s okay to eat what you want to eat. Your dose of drug will accomodate to your usual diet. No need to freak.
-INR fluctuates and it can take some time for your particular body to get used to coumadin, and then you eventually will be more stable. This can take months rather than weeks. No need to freak.
-Despite scare stories, you’ll be okay. Of course you still have to freak initially, because that’s what we do.
In a perfect world I wouldn’t have 2 mechanical valves, I’d still have my thyroid, I wouldn’t have had childhood cancer and radiation, my lungs and heart wouldn’t be scarred, I wouldn’t have migraines or ever feel depressed, I wouldn’t have to take thyroid meds or coumadin.
I start by freaking…..and then I get on with life.
Roger Bideleux Wow, what a wonderful update. You are a great example to us all. Best wishes!!
Shannon Gray Rita, your honesty is a gift. Thank you for sharing!
Thank you Rita for sharing your honest and valuable post on what it's like to be on long term coumadi ... Read more
Thank you Rita for sharing your honest and valuable post on what it's like to be on long term coumadin. I've been on this medication since December ( 8 months) and will remain on it for life after surgery next month.
I recently had to bridge the coumadin by doing heparin injections at home ... it would have been so much easier with IV because I now have a very painful lump in my tummy that sometimes ache and looks like it's bleeding again. Out comes the ice bag.
But your last line is so true! "I start by freaking ... and then I get on with life." !!! Thank you!
Ruth Belmonte Black stool, INR 9.2, we where freaking out!! Stopped the cumoudin for now!
Walter Lewandowski Thank you Rita. Good to know that there are plenty of options for living a normal life again.
Debbie Goff Wow...thank you for your words of wisdom! I also am trying to make up my mind regarding mechanical v ... Read more
Debbie Goff Wow...thank you for your words of wisdom! I also am trying to make up my mind regarding mechanical vs tissue. This info helps!
Clare Auten Rita, this is spot on. I have been on warfarin for 3.5+ years now. I consider my life normal and rare ... Read more
Clare Auten Rita, this is spot on. I have been on warfarin for 3.5+ years now. I consider my life normal and rarely think about it during day to day activities.
Kate Watson I love it, Rita! I feel so similarly. I was actually thinking this last night when I was taking my ... Read more
Kate Watson I love it, Rita! I feel so similarly. I was actually thinking this last night when I was taking my Coumadin, just how it's not a "thing" anymore. I do watch what I eat and try to be consistent with Vitamin K, but I'm not obsessive over it anymore. I have a home machine so I check my INR periodically. It's interesting that doctors there have set your target INR higher than mine. Mine is 2.5 to 3.5 It makes me wonder if they really know what range is the safest, as those of us with multiple mechanical valves are a bit of an anomaly as is. I had a hysterectomy years ago and started having light spotting around my PMS time, which was distressing at first, but I'm told is normal because of the Coumadin. So it's annoying but not a big deal. Thanks for sharing your words of wisdom, as always. Big hugs to you!
Rita Savelis Note to Kate: You may have a lower INR target rate because you have the very popular Onyx valves. I'v ... Read more
Rita Savelis Note to Kate: You may have a lower INR target rate because you have the very popular Onyx valves. I've got Italian valves (Sorin bicarbon fitline...)...
xoxoxo
Lynda Ruiz According to my prescription bottle my goal is 2 to 2.5. After 6 weeks I am up to 1.4. BUT I only ne ... Read more
Lynda Ruiz According to my prescription bottle my goal is 2 to 2.5. After 6 weeks I am up to 1.4. BUT I only need to take it for 3 months and my surgeon was not concerned in the least that my INR measured low.
Lynda Ruiz Interesting with the head itching though, as I have had that since the hospital.
Laura Jacobs You are a gifted writer Rita. So glad for you that you have found such peace in the whole process tha ... Read more
Laura Jacobs You are a gifted writer Rita. So glad for you that you have found such peace in the whole process that you are managing. You are a great perspective.
Rita Savelis I remember reading this post from W Carter on Clare's site. He said :
Rita Savelis I remember reading this post from W Carter on Clare's site. He said :
"I have met in person, and online, people that have had the same valve for 45+ years. These pioneers of heart valves (most are ball in cage type) were at a huge disadvantage compared to today. INR testing only started in the early 80's. Before that the doctors told them to cut back on their Warfarin dose if their urine was red. :-) They were implanting mech. valves for 20 years before INR testing was invented. We are lucky to live these days where it is pretty easy to monitor your INR. That is the key to living a long healthy life with a Mechanical Valve taking Warfarin."
Craig Wise Rita, I'm just seeing this post. Your writing and thought processes are so honest and helpful. Best ... Read more
Craig Wise Rita, I'm just seeing this post. Your writing and thought processes are so honest and helpful. Best to you and most thanks for your heart-felt compassion and contributions to this community.
Karen H Rita!! Thank you so much for sharing your story! It has helped me so so much!!
Patricia Allen After reading your awesome advice, I found you and your latest journal entry has been so helpful. Ha ... Read more
Patricia Allen After reading your awesome advice, I found you and your latest journal entry has been so helpful. Had OHS June 8th and Coumadin is the only heart med I am on as well. The passing gas info was really helpful. I thought it was because I was getting old, there are days that I just walk and toot and I can’t do a thing about it. Thank you 😊
Toni Z Thank you for sharing as this gives those still waiting for our day hope. Take care!!
Alex Sagan Rita, thank you for sharing this. I relate to all of it. Your notes about Coumadin are very helpful a ... Read more
Alex Sagan Rita, thank you for sharing this. I relate to all of it. Your notes about Coumadin are very helpful as I contemplate surgery that will probably put me on it too. Am freaking out more than a little at the moment. Let's get on with life!
Patrick Loy That is one Pretty amazing story Rita, I know another woman like you and its my sister inlaw Julie ma ... Read more
Patrick Loy That is one Pretty amazing story Rita, I know another woman like you and its my sister inlaw Julie married to my brother Martin , and her story is much like yours - had amazing amount of the big things that were not normal for most folks, but just seem to get on with it in the most positive way, and she adds so much to life, and she has a wicked sense of humour.
Thanks for your story.
Saw my rhythmologist (guy who deals with pacemakers) today. He asked if I get out of breath (YES!) and then said he would adjust my pacemaker to help me get ...Read more
Saw my rhythmologist (guy who deals with pacemakers) today. He asked if I get out of breath (YES!) and then said he would adjust my pacemaker to help me get to 140 beats a minute (when working out) rather than the standard 130. The rhythmologist looks at a computer screen as he dialogues with my pacemaker (are we connected by wifi??).
I feel like a sci-fi character because of the pacemaker. Something my 2 mechanical valves don't make me feel....
Marie Myers Glad you got adjusted.. The higher rate should help with work outs.
Sherry Nichols Hello Rita!!!! After reading your journals, all I can say is WOW!!!! You've been going through a lot. ... Read more
Sherry Nichols Hello Rita!!!! After reading your journals, all I can say is WOW!!!! You've been going through a lot. I will be praying for you my heart sister!!!!! Please read my latest journal.
Not quite 2 years after OHS (in January) I had a mammogram showing « microcalcifications » in my left breast which required simple surgery in March (and staying ...Read more
Not quite 2 years after OHS (in January) I had a mammogram showing « microcalcifications » in my left breast which required simple surgery in March (and staying in hospital for way too long on a heparin IV to readjust my anticoagulants (due to 2 mechanical valves).
Yesterday I found out that radiation is standard procedure after microcalcification (DCIS ?) removal.
However I have a pacemaker on my left side (thank you OHS) which would have to be surgically removed and replanted into my right side. Not only that but radiation to the left side (heart side) has unknown effects on the heart (I certainly know that well, having had cancer radiation treatment as a teenager and consequently 3 damaged valves years later), so radiation is not recommended either. A « preventive » mastectomy is what they want to do.
My first reaction is to choose to live with « increased surveillance » despite the risk of recurrence of a (more invasive) cancer.
No one is mentioning this third option (except me).
I just can’t (don’t want to) have more surgery on my chest at the moment.
Just had to throw that out there, although it’s probably time to find the breast cancer facebook, and leave the heart valve facebook (as I call this site).
Marie Myers Oh Rita! I wish you could get a break from medical attention. I can understand why you would just wan ... Read more
Marie Myers Oh Rita! I wish you could get a break from medical attention. I can understand why you would just want surveillance at this time.I am so sorry you have to deal with all of this.
Henry Brouwer So sorry to hear about this Rita on top of everything else you have gone thru. Keep the faith.
Barbara Wood Oh no Rita!! Have you had the oncotype dx ( I think that's the name) test to find out your percentage ... Read more
Barbara Wood Oh no Rita!! Have you had the oncotype dx ( I think that's the name) test to find out your percentage of recurrence? If they do the mastectomy, is the radiation necessary? Do you have a cardio- oncology center you can go to? How quickly do they want you to move on this? What a nightmare! I feel so much for you, no one wants to think of recurrence, that's scary indeed. I found very little on the BC groups on long term side effects from treatment, particularly pertaining to heart disease. But my surgeon seemed very aware of the effects on the heart. It's something of a dirty little secret imo.
I do wish you clarity & wish that you didn't have to deal with this - I would be leaning towards surveillance too & that is a viable option I would think. Do keep us posted on this please. All my positive thoughts & prayers sent to you.
Barbara Wood Rita, what about the targeted seed method of radiation, could that be an option?
Lilly Black Rita I am so sorry! I don't blame you. I wouldn't want more surgery either. Keep hope in your heart! ... Read more
Lilly Black Rita I am so sorry! I don't blame you. I wouldn't want more surgery either. Keep hope in your heart! I wish you the best!
Terrie Hodges Rita...I am sad and angry about this....I agree that watching and waiting instead of rushing to more ... Read more
Terrie Hodges Rita...I am sad and angry about this....I agree that watching and waiting instead of rushing to more medical cures is tempting💟I hope you don't leave this site...you are helpful here...
Catie B Ohhh. Rita, I'm sad for you. What a tough situation. I can imagine what you're going through emotiona ... Read more
Catie B Ohhh. Rita, I'm sad for you. What a tough situation. I can imagine what you're going through emotionally. Praying for you. Hoping you'll keep in touch here.
Ellen Leng Rita, you are clearly a survivor. I really think that getting this cared for early is the way to go. ... Read more
Ellen Leng Rita, you are clearly a survivor. I really think that getting this cared for early is the way to go. I have no idea on the details of what's better in terms of protecting your heart and you in general as you have had radiation in the past. I agree with Barbara about getting some genetic info to better clarify options. Seems you've had a biopsy, so there should be some clarity about recurrence risk without further treatment.
You should definitely talk to Oncology about your idea for increased surveillance, but getting it fixed early, even with moving the pacer, and being free of the worry might be better in the long run.
You are clearly a strong woman!
Rita Savelis
Thank you all for your care and comments!
Barbara, the last time I had a breast tumor (on my right ... Read more
Rita Savelis
Thank you all for your care and comments!
Barbara, the last time I had a breast tumor (on my right side, 12 years ago) I had surgery and then very localised radiation done using "curietherapy" because I didn't want standard radiation. 12 years later that side is fine, but the radiologist now says that type of radiation was essentially doing nothing...
There are definitely long term effects from radiation but long term is more manageable as an idea at 55 rather than 15.
I guess I would love that one magic doctor who was a specialist in it all : cancer, cardiology and the emotional concerns of a patient...!
Shannon Gray Rita...I am truly so sorry. Many prayers for you for good health.
Barbara Wood Didn't mean to bombard you with a million questions Rita:). One magic doctor would be nice indeed! Pl ... Read more
Barbara Wood Didn't mean to bombard you with a million questions Rita:). One magic doctor would be nice indeed! Please do keep us in the loop here- you contribute so much to all of us, do a little ( or a lot) leaning on us!
Tammy Pilcher Rita, I'm so sorry you're having to go through this after everything else you've been through. I'm k ... Read more
Tammy Pilcher Rita, I'm so sorry you're having to go through this after everything else you've been through. I'm keeping you in my prayers for the very best. God bless you!
Alina FH Rita, my heart goes out to you! What a choice to make! I am sure whichever you choose, you will come ... Read more
Alina FH Rita, my heart goes out to you! What a choice to make! I am sure whichever you choose, you will come out stronger in the end. You are a fighter, there is no doubt about it. Praying for you always, and for your spirit to always win every battle. Hugs. ❤️💕❤️
Petey Bello Rita I am so sorry you are going through all these medical problems. I don't blame you for not wantin ... Read more
Petey Bello Rita I am so sorry you are going through all these medical problems. I don't blame you for not wanting surgery again. Praying for you to give you the strength you need to make the right choices! Sending God's Blessings to you!
Today is my 2 year OHS anniversary (two valves replaced and a third valve repaired)
(One good valve out of four isn’t bad, is it ?)
I wouldn’t remember ...Read more
Today is my 2 year OHS anniversary (two valves replaced and a third valve repaired)
(One good valve out of four isn’t bad, is it ?)
I wouldn’t remember the exact day of my OHS in April 2015 if it wasn’t written on my agenda.
And I already wrote my 2 year post in March, a month early.
Today I am thinking about patients like me who have choices – Which doctor ? Which hospital ? What kind of valve ? What size scar ? What to bring along to hospital ?
And I am thinking about those who don’t have health insurance, or jobs, or finances, and who don’t have choices. For whom having surgery is not a possibility.
I’m American and live in a country (France) with its own problems, but we do have a universal health care system for everyone. We carry each other.
This is extremely comforting when something big (OHS) happens, and it has made my ride smoother.
So I’m okay with paying taxes. And with being in a public hospital. And with bringing my own towel along to hospital.
Which doesn’t mean I don’t complain, I do, but today I’m feeling grateful.
Terrie Hodges Universal Health Care is not perfect but ever SO much better than feeding our greedy insurance indus ... Read more
Terrie Hodges Universal Health Care is not perfect but ever SO much better than feeding our greedy insurance industry...Congrats, Rita...I read all your comments😊
Lilly Black Rita, congratulations on your 2 year anniversary! And I totally agree with you on the health insuranc ... Read more
Lilly Black Rita, congratulations on your 2 year anniversary! And I totally agree with you on the health insurance. I am Canadian and when I lived in Canada health coverage was free. My dad still lives in Quebec and receives great care for free. It took some getting used to when I first moved here and although I love USA, I wish we could learn from other countries about health care coverage. Thanks for your wisdom and all the best on your continued progress! Bonne chance!
Tina Maroon Congrats on your two year anniversary. My two year anniversary will be June 15,2017
Catie B Congratulations on your journey and recovery, Rita. It's always good to hear from you.
Kate Watson Congratulations on your 2 year anniversary! I know it's been a tough journey for you, Rita and I hav ... Read more
Kate Watson Congratulations on your 2 year anniversary! I know it's been a tough journey for you, Rita and I have always related to you. You've helped me more than you can know. You posted recently about having another biopsy- I hope that everything is ok? I can't imagine having to think about any other health worries after having gone through OHS.
Universal health care sounds like a dream but the US is nowhere near having such a thing. I often think about people who have huge medical bills from some health crisis. My surgery cost $450K, but I was only responsible for a few thousand because we have great coverage through my husband's employer. Before he got this job, we were on Obamacare and we would have been screwed due to the high deductible and poor coverage it came with. I think about how people's lives can be ruined because of crappy insurance, how so many people become burdened by massive medical bills. So I too feel grateful. Hugs to you and I wish you many more healthy years ahead.
Anyone out there have mutliple mechanical valves (or at least a mechanical mitral valve) and then gone through another surgery (not heart related) where they ...Read more
Anyone out there have mutliple mechanical valves (or at least a mechanical mitral valve) and then gone through another surgery (not heart related) where they were back on intravenous heparin and then had to slowly reintroduce anticoagulants while still on IV? How long did it take? I'm getting bored from many days in hospital.... and was curious as to how common this kind of reintroduction is. Is it more specific to French procedures? Is it only used with multiple valves? How does one work anticoagulant bridging in America?
Barbara Laurie Hi Rita, you know I don't have a mechanical valve, but I do know, back last year, a couple of folks ... Read more
Barbara Laurie Hi Rita, you know I don't have a mechanical valve, but I do know, back last year, a couple of folks wrote about this same issue. When your numbers are where they want them.. and, of course, everyone's different! Yikes! As I recall, one lady was in there several days. But, it's for the best, because they can't very well go in there with a bottle brush and clean the mechanical leaflets off😄😄 I hope you can cheer up and find something to keep you busy! It's the same in the US as you've described, oh Rita, I hope all goes well. And the fact you get bored is endearing since you are such a wonderful writer and thinker! Best wishes for a fast and successful procedure.
Clare Auten I had a heparin IV bridge when my INR dipped too low. It took about 3 nights in the hospital to get m ... Read more
Clare Auten I had a heparin IV bridge when my INR dipped too low. It took about 3 nights in the hospital to get my INR back in range. I do only have one mechanical valve and did not have additional surgery.
Alina FH Thinking of you, Rita. The BEST of luck onward!
Rita Savelis It's been 14 days since my simple surgery and I am still in hospital and can't get my INR up to speed ... Read more
Rita Savelis It's been 14 days since my simple surgery and I am still in hospital and can't get my INR up to speed in order to get off a heparin IV. Isn't that disheartening?!? I've decided I'm a special difficult case, because this can't be a normal situation. So I'm bored in hosital and attached to an IV, but carrying on with netflix, books, and looking at my work emails...
Barbara Laurie Rita, I've heard of many people not having that bridge work very quickly. Many hospitals use heparin ... Read more
Barbara Laurie Rita, I've heard of many people not having that bridge work very quickly. Many hospitals use heparin still, but don't bridge with lavonox (sp?) then to warfarin. So, don't get down kiddo, they want to do this correctly!🌿🦋🌿 When we feel like we've been put on the shelf it's not a bad thing, just another thing. Why do we get the bounty of "things"?? Well, if I knew that answer everyone would be calling, texting!! Yikes! 🤣 Hugs. ❤🎀❤
Rita Savelis After days of increasing coumadin, my INR finally shot up dramatically yesterday (this happens in my ... Read more
Rita Savelis After days of increasing coumadin, my INR finally shot up dramatically yesterday (this happens in my "regular" life too, which is why I use tiny tiny increments of change). It looks like the French may let me go today!
I certainly have learned a lot throughout this episode. Mainly learned that I shouldn't assume things (like I'll get out in a few days), but that sometimes things don't go as planned (this has happened before, why didn't I learn, silly me?!?). There will be up days and down days but have to keep moving forward. Getting mad at the system tends to not work.
Especially since they do have your back.
In the wise words of dear dear Barb, this is "just another thing".
You know, Barb, how much your simple words of insight always mean to me.
I plan to make some wise words from Barb t-shirts some day.... !!
I keep thinking about Tafang Kuo's words in her post of a few days ago, and how she captures that one year after OHS feeling so well:
"Still feel unreal ...Read more
I keep thinking about Tafang Kuo's words in her post of a few days ago, and how she captures that one year after OHS feeling so well:
"Still feel unreal that it has been a year. Never spent this much time to be there for my body. Was so used to the idea that the body should be there for me.
Physically it feels like it has recovered 80%.
A year ago, an imagination of being a super woman after 3 month of surgery was the expectation.
Looking back, there is a sense of bowing down to this one year process of recovery.
And secretly feel impatience and exciting of wanting to hurry and catch up with life before the next corner comes up."
Thank you Tafang.
In April 2017 two years will have passed since I had OHS.
A wise friend on this site once wrote : « Recovery happens with or without you. »
Time flies, ...Read more
In April 2017 two years will have passed since I had OHS.
A wise friend on this site once wrote : « Recovery happens with or without you. »
Time flies, and it also drags.
There were long days, and short, sleepless, uncomfortable nights when morning began at 3AM.
Pre-op anxiety was not serenely replaced with post-op gratitude. Sorry. Couldn’t do that.
Post-op brought its own anxieties and challenges and many more difficult days.
I didn’t wake up in ICU after OHS with the wish to post a selfie, raise a thumb or text a friend. I wanted to go back under.
Another wise heart valve pal said : « Having valve replacement surgery is like getting hit by a cruise missile. » That friend from 2015 no longer posts and I hope he’s okay. I needed and still need his dark humor.
When I was ready to write, this site was a place where I could put words down in order to get them out of my head. Maybe someone would respond, maybe no one would, but I could write.
It was for me.
In the heart valve world, as elsewhere, I often felt like an alien, experiencing differently. But if I wrote what I felt, perhaps it would touch one other person who felt similarly, or was wondering what was « normal »…
As I read posts, some spoke intensely to me and I would think « yes , that’s how it was, that’s how it is. I’m not completely alone. »
Some writers I wanted to take into my arms and say « I know, I’m sorry, it’s unfair, it’s awful. »
Pre-surgery anxiety is universal, but it lasts a finite time.
Post-surgery anxiety can be more indefinite.
Many friends and colleagues consider that once surgery is over and a success, you are fine.
Who can you talk to about post-surgical problems when your heart surgery itself was a « success » ?
There can be a pressure to present as « okay » as quickly as you can. For others, for yourself.
As you linger in recovery mode, others get uncomfortable. You have second thoughts.
I wasn’t really prepared for : a pacemaker, pleural effusions, months of stabilising INR, emergency return to hospital 8 weeks later, vascular headaches, depression, complete exhaustion that lingered, continuing breathlessness, how fast and loud my heart would beat, how scary my first long airplane ride and vacation would feel, that I would feel my sternum forever.
This site was a place where I could mention post-surgery and hope that no one would object to my continued talking about OHS.
I felt humbled by :
-those who had bypasses
-those who had multiple surgeries
-those who worried about finances and insurance claims in a country without universal health coverage…
-those struggling with multiple health concerns other than OHS.
-those more wise and patient and positive than me.
But I also couldn’t help but feel jealous of :
-those who had repairs rather than replacements
-those who had surgery on only one valve
-those who didn’t get unexpected pacemakers
-those who got free heart pillows
-those who left hospital after 3 days.
The humor on this site was much needed.
Thank you to those who can laugh in the face of absurdity.
Certain « female » posts : having your period in the ICU, do I need a surgical bra, what if I have dirty hair… and the wish for the invention of a padded t-shirt that would muffle loud mechanical valve sounds (thank you Kate !) were all necessary and vital for me, if only because they were real.
Cruise missile analogies were and are always necessary to me.
Everyone is singular, everyone is unique, everyone grieves and recovers in their own way.
Nothing is normal. Everything is normal.
Your heart breaks down in many ways and for many reasons and many of them have nothing to do with you or anything you did. Lousy things happen to wonderful people.
Procedures that save your life cause future problems.
Grieving the former you is necessary. Then you move on. Sort of. Slowly. Maybe not today. But next week.
After OHS you may feel better quickly, or slowly.
Side effects come and go.
You may never be the person you once were, but instead a new version that will take time to get used to.
This new version might run marathons, or dance flamenco, or ride roller coasters.
Maybe you never even wanted to do these things and maybe never will.
Maybe you’ll go back to an even better than the former you.
Maybe the new you will look at life differently. Not better, not worse, just different.
It’s okay, despite American ideals of being always positive, to be in the moment, and the present moment might be hard, it might be awful.
You take the next steps and suddenly two years have gone by and there are other things that are central, aside from your heart valves. You dare to feel safe.
You don’t constantly google your specific situation to find out what awaits you statistically in the future. You don’t second guess your choices and wonder how it might have been.
Maybe you let a week go by without looking at the heart valve site.
OHS is over.
I don’t feel better, only different.
I am aware that anything could happen, at any time, with my new valves, but the fast loud pounding of my bionic heart is my new reality, and one I have accepted.
I am aware that other post aggressive-radiation-for-cancer-in-adolescence after effects are waiting to happen to me.
I try to avoid googling.
(post-script : moving onward, I have a surgical biopsy for a possible new cancer scheduled for Monday….)
I feel my sternum, a bone I never thought about before 2015. My sternum carries a « body memory » of being cut and stretched apart. This body memory remains, like an old knee injury that flares up at certain times. Not painful, only present. Always present.
My body carries physical memories - a pacemaker bulge and one more scar. Other physical markers are hidden inside and only show up in x-rays or scans or surgical reports.
Emotional scars aren’t outwardly visible.
Recovery happened both with and without me.
(special thanks to Alina, and many others, who set the example for how healing writing can be)
Barbara Wood I second that!! Hoping that your biopsy comes back negative- keep us posted please & thanks for this ... Read more
Barbara Wood I second that!! Hoping that your biopsy comes back negative- keep us posted please & thanks for this awesome post.
Cathy Zuber Thank you....thank you..I'm a breast cancer mastectomy survivor now facing OHS ( even then I had the ... Read more
Cathy Zuber Thank you....thank you..I'm a breast cancer mastectomy survivor now facing OHS ( even then I had the Mitral valve prolapse that is now a severe leak) . I wonder some nites how many more seam lines will be on the quilt that is my chest. You captured the thoughts of so many of us "pink ladies and men" ..cancer survivors..I have been mentally going back to the days after my surgery to help me prepare for this OHS. if I may, I'll try to print your post to help me during the up and down days of my recovery. Hugs to you..prayers for you. Cathy
Cathy Burgess thank you rita for this wonderfull post. there is no way you could know how i needed it right now.
Cathy Burgess thank you rita for this wonderfull post. there is no way you could know how i needed it right now.
Steven A Husted love your post sometimes i wonder how many more scars i will have before the end of my life i have a ... Read more
Steven A Husted love your post sometimes i wonder how many more scars i will have before the end of my life i have a right hand scar where they operated on my right kidney about 8 inches and a 8 inch scar on my left side where they operated on my left kidney then 2 years ago a 8 inch scar down the middle of my chest for ohs wow modern medicine is great but how many times can they cut you open hopefully they will come up with a way to not leave a scar
Shannon Gray Rita...thank you! Your support, understanding, and beautiful words mean so much to me. You have such ... Read more
Shannon Gray Rita...thank you! Your support, understanding, and beautiful words mean so much to me. You have such courage!
Catie B I pray things go well for you Monday. I'm so sorry you're facing that anxiety now.
I relate to many ... Read more
Catie B I pray things go well for you Monday. I'm so sorry you're facing that anxiety now.
I relate to many elements of your post, Rita. I appreciate how real and candid you are and your willingness to share your journey with us. I've hesitated to write updates, because the struggles kept coming and it has been daunting. I was ready to heal and get stronger after surgery. But I wasn't mentally prepared for the numerous complications. Your heartfelt comments speak to me.
Meredith Bray <3 this post, thank you. The part that touched me was grieving for the old you. I think that really n ... Read more
Meredith Bray <3 this post, thank you. The part that touched me was grieving for the old you. I think that really needs to be acknowledged, really any mental health issues seem to be overlooked in the hospital. Not one time did anyone question my outlook, mental state, tendency toward depression. And yes, this site saved me too, from oversharing with my coworkers and family. That's what this site is for, I think, a sense of community and belonging and understanding. Like how when you sit down with your best friend or favorite cousin after being apart, and you can just lean into them and be.....you.
Many strong prayers for Monday, I just went through that myself and that's a whole other story for a different place.
Like you've heard over and over on this forum, You've got this. And if you think you don't, it's ok, because we've got your back!
-Meredith
Alina FH You ALWAYS touch my heart, Rita. I am constantly thinking about and praying for you. May the future m ... Read more
Alina FH You ALWAYS touch my heart, Rita. I am constantly thinking about and praying for you. May the future medical news be positive and may you always find words to strengthen you. Hugs.
Kate Watson Rita, I am not on here much lately but I came on here today to see how you are. Reading this post, I ... Read more
Kate Watson Rita, I am not on here much lately but I came on here today to see how you are. Reading this post, I resonate so closely with you and it breaks my heart a little. I am moved and teary eyed as I read it. I couldn't have predicted the emotional toll this surgery would take on me. One of my good friends pushed me away during my recovery process and when I recently confronted her, she said she couldn't deal with my depression and she couldn't understand how I could be anything but grateful for being alive. It was really hurtful and made me feel more alone and as though no one understands because we are supposed to be grateful and positive all the time apparently. Thank you for writing this. You are in my thoughts often and you have been an important part of my recovery process. I hope everything goes ok with your testing. Please keep us posted. Hugs to you, heart sister.
Rita Savelis Oh, Kate, I hear you, and I feel for you.... You are sensitive and wonderful and you feel everything ... Read more
Rita Savelis Oh, Kate, I hear you, and I feel for you.... You are sensitive and wonderful and you feel everything 300% more than most. This is what makes you special. I think of you often and your story, and your presence on this site has meant and means a lot to me. Hugs. Hugs. Hugs.
I dream of having an OHS party with all my buddies.....
Yesterday I was at the Hôpital Européenne Georges Pompidou (HEGP), Paris.
Everytime I’m there (for an appointment) I feel so much emotion : not positive, ...Read more
Yesterday I was at the Hôpital Européenne Georges Pompidou (HEGP), Paris.
Everytime I’m there (for an appointment) I feel so much emotion : not positive, not negative, just emotion.
I spent 4 weeks at the HEGP in April 2015 after having OHS : 28 nights and 84 meals…. !
There is a café in the lobby that is filled with doctors, interns and patients, some of them in hospital gowns, pushing their IV holders.
The IV bags are filled with liquids of varying colors and I once asked a nurse to tell me what each color liquid was for (I personally only ever had clear liquid in my IV bag). I remember that she said « Yellow is for the liver,….).
There is something wonderful about the mix of people, both healthy, sick and recovering all jumbled together in this café, in a public hospital. I feel better just being amongst them.
Rita what an interesting point of observation. I will think of you from now on when I go to my Cardio ... Read more
Rita what an interesting point of observation. I will think of you from now on when I go to my Cardio Docs offices. They are in the Hospital directly across from the cafeteria.
Catie B I can understand your feeling emotional. Stepping into any hospital now brings up a lot of feelings, ... Read more
Catie B I can understand your feeling emotional. Stepping into any hospital now brings up a lot of feelings, compassion and some je ne sais quois. I don't know--a mix of amazement, concern, memory, kinship...
Marie Myers Prior to my aneurysm diagnosis, I never minded doctor visits ... Now, Doctor visits and hospitals in ... Read more
Marie Myers Prior to my aneurysm diagnosis, I never minded doctor visits ... Now, Doctor visits and hospitals increase my anxiety... But I have to say, I do feel a lot more compassion for the other patients I see; you never know what their stories are, and what those patients have been through.
Bummed out because 22 months after OHS, I had a "bad" mammogram a few weeks ago. I already had a tumor removed in 2004 and don't feel like being cut in the ...Read more
Bummed out because 22 months after OHS, I had a "bad" mammogram a few weeks ago. I already had a tumor removed in 2004 and don't feel like being cut in the chest anymore! Plus the surgeon described me as "complicated" because of my pacemaker, radiation past, OHS, yada, yada, yada...
Sorry, just wanted to vent.
Charlene Lanigan Oh so sorry Rita! Besides going for OHS on Tuesday, I had breast cancer in 2012. I went through lump ... Read more
Charlene Lanigan Oh so sorry Rita! Besides going for OHS on Tuesday, I had breast cancer in 2012. I went through lumpectomy, chemo & radiation. Have to tell you it wasn't that bad, but I caught the cancer in stage one. I did not have my pacemaker at the time but don't see why that should hinder the surgery in any way. The only days that were a little uncomfortable was the day after chemo, and mostly because it gave me a slight headache. I didn't let it stop me from anything else... even fished in alaska for a week in between! Good luck Rita! Any info you might want to ask me, please don't hesitate. I was a Sloan Kettering patient...
Clare Auten So sorry to hear this. Prayers for you.
Catie B Oh Rita, my heart goes out to you very much! Vent and write all you want. It's a lot to deal with--e ... Read more
Catie B Oh Rita, my heart goes out to you very much! Vent and write all you want. It's a lot to deal with--especially after you've already been through so much.
Rita Savelis Oh Charlene, wishing you good things as you approach OHS surgery!
Take care.
Rita Savelis Oh Charlene, wishing you good things as you approach OHS surgery!
Take care.
My heart is fine 22 months later after triple valve surgery.
The problem with a pacemaker is that I can't have an MRI and I can't have radiation therapy. I've had major cancer as an adolescent and another smaller cancer as an adult so I know the ropes and it's all just a bother, really.
In the same way that OHS was a bother.
But radical cancer treatment is what has caused many of my more recent problems (thyroid, heart valve damage, recurring cancers, lung scarring, etc... so it's a bummer.
Gotta spend a day feeling sorry for myself.
Then move on.
Thank you all for your comments.
I'll try to stick to positive heart posts!
Barbara Wood So sorry Rita. It seems so unfair. Do you have to go through chemo again? I've had 2 friends go throu ... Read more
Barbara Wood So sorry Rita. It seems so unfair. Do you have to go through chemo again? I've had 2 friends go through cancer treatment in the last year & it seems to be more streamlined & targeted now- targeted radiation "seeds" inserted at the lumpectomy surgery. My valve problem is likely caused by cancer treatment as well, a bummer but it happens. Best wishes to you- keep us informed...
Rita Savelis Last time I had a breast tumor, 12 yrs ago, I only had very localised radiation (Curie-therapie) whic ... Read more
Rita Savelis Last time I had a breast tumor, 12 yrs ago, I only had very localised radiation (Curie-therapie) which consisted of a steel rod stuck through my skin in which plutonium flowed for a few minutes (or something like that!)
This special very localised radiation was done because of my radiation history.
I had the most terrible chemo (MOPP) 35 years ago and lots of intense radiation.
I know treatment has changed, ... but sadly it's become the norm to have cancer. It's way too common.
I'm really sorry you had to go through cancer treatment Barbara and Charlene. I'm sorry for everyone. It's no fun, no matter how common it is.
I do hope that your mitral valve can be repaired, Barbara, rather than replaced. That would be great.
At this point, I haven't even had a biopsy for my "calcifications" but the professor who heads the dept is speaking about my case with his team of guys next week to see how to proceed (just for the biopsy... geez!)....
I had hoped to have a local anasthetic, but he didn't think that was possible..
Immediately after that appt I treated myself to a really nice lunch before heading back to work! Gotta be good to yourself.
Anyway, my treatment is at the same hospital where I had OHS so all the professors who treated me for other things are at least nearby!
Best wishes for those with upcoming OHS surgeries.
Barbara Wood You've been through more than enough Rita. It sounds like you have a good team around you. Hope your ... Read more
Barbara Wood You've been through more than enough Rita. It sounds like you have a good team around you. Hope your biopsy goes well ( & is not too painful:() Keep being good to yourself & keep us posted on how things progress...keeping you in my thoughts.
Phyllis Petersen Oh Rita, you have every right to vent with all you've been through. My heart goes out to you with thi ... Read more
Phyllis Petersen Oh Rita, you have every right to vent with all you've been through. My heart goes out to you with this latest bad news. You have a great spirit and I hope that you can keep that. I also hope that they can treat this with minimal pain and suffering for you. I'll definitely keep you in my prayers.
Linda Richards That is why we are here ... to vent. I am sorry you are going through this ...
Sophia Ridley Rita, I'm sorry to hear that you have to face this now too after all you've been through. You have su ... Read more
Sophia Ridley Rita, I'm sorry to hear that you have to face this now too after all you've been through. You have such a wonderful spirit and a beacon for us all when we're facing more minor trials. Very best wishes and please let us know you get on.
Alina FH Rita, I am so sorry to hear that! I can feel the frustration you feel as well! 😡 Not fair! Be stro ... Read more
Alina FH Rita, I am so sorry to hear that! I can feel the frustration you feel as well! 😡 Not fair! Be strong and your fighting spirit will prevail! Hugs and the best of luck. ❤ Keep us posted!
Lilly Black Rita, so sorry! e-hug going out to you.....hang in there.
Shannon Gray Rita....I'm so glad you are able to vent and let out all this frustration....I'm so sorry you're havi ... Read more
Shannon Gray Rita....I'm so glad you are able to vent and let out all this frustration....I'm so sorry you're having to go through this...it really isn't fair. You've faced so many difficulties....enough, right? Thinking of you!
Marie Myers You vent all you want. This is the perfect place to say what you feel. I hope you catch a break soon ... Read more
Marie Myers You vent all you want. This is the perfect place to say what you feel. I hope you catch a break soon from all your trials!
I feel very aware that every emotion, good or bad, makes my resting heart race. I can hear/feel it thumping away.
I sometimes wonder if OHS (April 2015), ...Read more
I feel very aware that every emotion, good or bad, makes my resting heart race. I can hear/feel it thumping away.
I sometimes wonder if OHS (April 2015), by giving me the ability to hear more clearly, increased my awareness of the thumping that was always there.
Perhaps my heart always reacted that way, but I didn't focus on it.
Now I'm trying to adjust to this new norm.
Lilly Black Same here, Rita. I am very aware of my heart just as you had described. Could be a blessing! I'm al ... Read more
Lilly Black Same here, Rita. I am very aware of my heart just as you had described. Could be a blessing! I'm also very lucky that I had symptoms, which caused me to go and check on it.....some people have no symptoms until it's too late. Happy Holidays!
Steven A Husted yes i feel the same way i notice my heart beat a lot more now after my surgery i never did before my ... Read more
Steven A Husted yes i feel the same way i notice my heart beat a lot more now after my surgery i never did before my surgery