Rita's Guestbook

Rita Savelis  Thank you for your kind words Susan. I had very special circumstances (a stenosed heart and valves due to radiation treatment for cancer as an adolescent) so my story is a bit more complicated than most of the stories on this site. But I wanted to write honestly about my experience. It can be therapeutic to write and there will always be someone out there that can relate. It's hard, and then you get through it. And doubly hard for a mother or caretaker who experiences things differently from the patient. Take care.

Rita Savelis  Oh Suzette. I feel for you. You are trying to go on with your life but instead you have unexplained side effects and confused doctors. Your surgery went well, but you are left with a recovery that is not textbook. And suddenly you have to become an expert on late effects/side effects when you'd just rather move forward. Heavy sigh. Keep writing. It was helpful for me to put my experience down in writing and get it out of my head. Maybe someone could relate. I am glad that I could be there for you and thank you for your note. There were a few people (who I've never met in person) who were helpful to me when I was falling apart 9 years ago. Hugs.

Richard Munson  Just  hearing 6 to a room gave me chills. Thats like a dormitory room in college or maybe not, i only had one roommate. God bless you and hoping your recovery becomes more positive. 

Barbara deLoache  Hi Rita, I am exactly 4 months out. I have not posted in quite a while but your story moved me. I had open aortic valve replacement and a maze procedure to take care of my  A- fib. Like you I had some difficult complications which were actually life threatening. The surgery went great but like you I developed a huge amount of inflammation and had so much swelling all over my body that I was unrecognizable. I stayed in ICU FOR 8 days! I had some fluid in my lungs as well. After 2 more days in the hospital I went for 2 weeks in a rehab facility. I was very weak. I had numerous chest x-rays as I was coughing so much. So my first 2 months were really difficult. Now at 4 months finally feel good! At 2 months like you are now I felt like half myself as well! So take one day at a time knowing this is for some of us a slow process. I am going to a cardiac  exercise program 3 times a week. I still do not have a lot of stamina but I’m working on that. I was discouraged like you but in time things have gotten better. My surgeon who I love said “sometimes you just need the tincture of time.” So very true💕

Richard Munson  Another good doctor quote is “ your heart is angry after surgery” I think it falls into the , we are all different category. Some folks heal quickly, others don’t. Every friend i have has had successful cataract surgery. Mine sucked. Hopefully my next eye this month will be issue free. It better be, i’m running out of time. Like the song says “ time is on your side”. Not at 82 . 

Rita Savelis  Oh Leslie. I hear you. It took me a long time to feel better after surgery. In fact I don't know if I'm better, just different. The surgery had to be done. My heart rate is still high. I had dark days. I was so uncomfortable. I went into depression and it took months to feel joy again. I was jealous of those who felt better right away. Being honest always helped me. I needed to write my story. I went back to doing what I used to do, but I get out of breath easily. I used to run around and get a lot done. Now I am slower. 53 was young to have that big change. It's okay to feel sad, to feel angry. It's okay to be in the moment, which can be a dark moment. One does not have to be positive always. It can be exhausting. I wish I could give you a big hug.

Rita Savelis  Barbara, so glad you are feeling better. It takes time. Your surgeon is a good guy. There are so many hard days. 8 days in ICU is so hard on your mental wellbeing. My surgeon told me I would be tired for a long time. He did not specify what a long time was, because a long time is different for everyone. I was grateful for that. One can not compare one's recovery with anyone else. Take care after what you've been through.

Rita Savelis  Hi Deena. Most Parisians are annoyed by all the construction and street closures. A lot of them have left on vacation so the city feels calm. The weather Is comfortable with regular rainfall every week which is nice. Because when it gets hot there is little relief. My husband has tickets for the basketball semi final and an early track and field event. Tickets are expensive. We live near the Eiffel Tower but the park in front of it (Champ de Mars) is now completely off limits to everyone. A beautiful 10,000 person temporary stadium for beach volleyball has been built there....

Deena Z  Thanks for all the details, Rita!   You live  right where it is all happening.- wow. I can see how one can have mixed emotions or complete annoyance with all the closures and chaotic things happening, but from afar quite amazing:)

Deena Z  Rita, thanks for the photo.! Cool. I read France is supposed to have the most winning Olympics since 1900! And Richard, above the tees there is a sign that says 45 Euros, so around $49.00. A tad expensive , but then you only live once.

Richard Munson  I never saw that so not bad. I just paid that for a shrub. Hope i live long enough for it to reach eye level. 

Sue Maize  Oh la la! C’est magnifique! Amuse-toi bien ma chere ami de coeur! J’ai une vision de te recontrer un jour pres de la tour Eiffel! Imagine! 🥰🇫🇷💕🙏🏻

Grace Mason   How fun to get to experience the Olympics so close to your home, but even more amazing to live close to Eiffel when things are not disrupted by the additional Olympic crowds. I was fortunate to spend one day in Paris while in my 20s and see the Eiffel & see the Seine, but would have loved to see more. Hope you have some fun memories of the Olympics. Thx for sharing your pic

Rita Savelis  Dear Leslie. Thank you for your message from Budapest. When I had my aortic and mitral valves replaced I was in hospital for 3 weeks. Before I went in, I did not know how long I would be there, but then I also needed a pacemaker implanted which extended my stay. I don't remember having sternum pain. In fact I did not really have pain at all, but I had much discomfort. I don't think my bone was compromised - it was the heart that was damaged by radiation. But radiation affects each person differently. It was hard for me to find a comfortable position after surgery, hard to sleep. I also was so very very exhausted. Not sleepy, but exhausted. I went back to work (an office job) about 3 months after surgery. Each person recovers at their own rate and some are ready to go back to work earlier than others. One can't compare oneself to others. Hopefully your employer will be understanding. Wishing you all the best, Leslie, my Hodgkin's friend with no spleen. I will be thinking of you on Monday. Take care.

Leslie Bakos  Thanks Rita. Your posts are very inspiring. I already have been in the hospital for 2 weeks. Driving me bonkers.

Rita Savelis  Terrie, I remember being angry when I got my surprise pacemaker. I hadn't known at all that it was a possibility. One more thing to deal with. Like yours, mine really only comes into use a small percentage of the time. Most of the time my heart does not need it. The rhythmologist can see exactly when it is used as the pacemaker records all the info. It's sort of wild.
I think of you fondly Terrie.  You wrote such lovely warm posts after your first surgery. I realise that one can only write like that when one is feeling okay and there are so many times when one doesn't feel okay and this second surgery has been difficult for you. I hear you. I have been there. We push on and things get better.
As far as how I'm doing since heart surgery nine years ago, I have had no trouble with my valves. But I get tired on stairs and if I walk fast. I don't really feel better than I did before surgery, just different. The surgery had to happen but it was hard on my heart and lungs. The long term side effect that remains is chronic pleural effusions (liquid in the lung lining). Those come and go and make me out of breath and tired because the liquid means I have less lung capacity. I am supposed to take diuretic pills (lasix) in order to keep them in check, but I hate having to pee every 10 minutes so sometimes I don't. I can always tell when a pleural effusion is getting worse because I feel tired and have shortness of breath. A few weeks ago I was hospitalised and had to have lasix injections 3 times a day for 4 days. That did the trick (for now) but was brutal (even more peeing). Heavy sigh. Feeling better now and the sun has come out in Paris (where it rains most of the time!). Take care, Terrie.

Yumiko Ishida  Moira - I am 54 and just got a tissue valve. It took a couple of months of going back and forth before I made that decision. 1st surgeon I interviewed gave me a choice. 2nd one strongly recommended mechanical. In the end, I didn’t want to be dependent on coumadin for the rest of my life. There are people with a mechanical valve that are doing just fine, so I really think it is a personal decision. I can’t remember her name, but someone on this site celebrated 30 years with a mechanical valve. I found this article / video helpful: https://www.heart-valve-surgery.com/learning/tissue-valve-durability-young-patient/

Rita Savelis  I'm glad you're feeling strong. Being in shape and having energy are good things to take into surgery. Valve decisions are hard for everyone. There is really no right way to go, just the way you choose to go. There are pluses and minuses for both. Hopefully your surgeon will give you some input. Tissue valves do not last as long on younger people (I was 53 when I had surgery). But there are also patients who have a tissue valve first and then replace it with a TAVR valve later if and when it fails. I take anticoagulants and it took some getting used to. I still eat whatever I want and do what I want but I have a blood test once a month. Anticoagulant doses are not static and can go up and down until you find the correct dose. The facebook group I mentioned is called Hodgkin's Lymphoma/Disease survival and late effects 1960 - mid 2000s. There are probably about 1000 members on that site discussing their various late effects. It can be overwhelming, but also informative. Take care.

Rita Savelis  Hi Moira. Unfortunately heart valve problems and coronary disease are common late effects of Hodgkin's radiation and chemo (as well as breast cancer and thyroid problems) Especially many years later. And radiated hearts have their own singular types of stenosis. You may want to check out the site www.hodgkinsinternational.com or the facebook group for Hodgkins lymphoma/disease survivors who were treated between the 1960's and the 2000's. I was recommeded mechanical valves as I had 2 valves to be replaced and it was not advised to have more surgery. Hopefully those valves will last. I imagine that your surgeon is familiar with radiation late effects and will be able to advise you for your specific situation.  I'm sorry that you have to through this. I think it is becoming more and more common for surgeons to see damaged radiated hearts as we grow older after our childhood cancers. 

Rita Savelis  Dear Barbara. Thank you for your kind words. I'm sorry that you have to go through this. I think that for someone who works or has worked as a OR nurse, as you have, going into surgery is probably more difficult as you have a different insight into hospitals. Sometimes we consider ourselves fragile but we are actually stronger than it seems. We are realists and we are sensitive and we feel things more than others. I hope that your consultations with an interventionist and cardiac surgeon go well. I know that I trusted my surgeon completely. But at the same time I was wary of the part that I would have to play in recovery. Take care. Please keep sharing how you feel.

Rita Savelis  Dear Sue. Thank you for your lovely message. If I wrote what I wrote it was for people like you, who might read it and understand me. I felt a oneness with a few other people on this site during 2015 to 2017. I've never met any of them but they were so essential to me at that time. I was happy whenever I found a rare kindred spirit! If I wrote what I wrote it was because I needed to express my feelings and get them outside of my head. I wanted to be real. There was a lot of hard stuff, but it was okay to sit with the hard stuff. If one wrote about it, maybe someone else, maybe only one other person, needed to read about it, relate, and take comfort. Everyone is trying so hard to be normal, to be courageous! It's exhausting! I encourage you to write, if even just for yourself, to try to make sense of this crazy situation. And don't let heart surgery define you. You are so much more. And you have a lot on your plate, I know. One day at a time. Take care.

Sue Maize  Thanks for taking the time to write such a lengthy and thoughtful response Rita! I have been in the habit of journaling most days for many years and it has been a real tonic. I also connect with certain authors when I can’t seem to find the “flesh and blood” company I need. A pivotal one I’ll share is Kate Bowler—she’s a prof at Duke and at 35 got a stage 4 cancer diagnosis that, of course, upended her life. She writes like you—frank, honest and with humour too. She also has a great podcast called “Everything Happens”, a follow up to her book “Everything Happens for a Reason, and other lies I’ve loved” and “No Cure for Being Human”. You might find another kindred spirit in her and some of the guests on her podcast. Blessings. 💕🙏🏻

Jill Porter  Thank you Sue! Because of your post I read Rita's journal and found it very comforting. Rita - I appreciate your honest account of your experience. 

Rita Savelis  Thank you Sue for the Kate Bowler recommendation. Like you I also have a real connection with certain authors, and reading constantly and eclectically keeps me going! Take care kindred spirit. Much love.

Rita Savelis  Dear Tryge, Thanks for writing. You've been through a lot. I hear you on the depression. After holding it together physically, we have an emotional release. It's hard. A lot to process.
I am always glad when a department wide meeting is held on my behalf! And having at least one doctor who has your back is all you need. So very happy for you about that. Radiation is never fun but technology has advanced and it's very cool that you'll be on the most modern of machines at the best hospital in the UAE. Lasix is no fun either. Thinking of you and sending good vibes. I'm doing okay. Almost 9 years out from heart surgery. 3 years out from my latest cancers. I get depressed now and then but there are also moments of joy. Take care.

Rita Savelis  Hi Svetlomir. I'm fine. No worries. Valve rings do not activate metal scanners in airports or elsewhere. But because of my pacemaker in airports I ask to be manually checked by security. However today more and more airports have modern security scanners which are fine for pacemaker wearers to pass through.

Svetlomir Ivanov  By the way, your scar is barely visible, may be if you put a weight, same will be for the pacemaker bump

Klara Čičić  No, they are not problem for MRI, I have been in one and no problem. I just showed the card that says I wear one so they could know, but no problem. 

Rita Savelis  I scar really well, don't know why. And I'd love to put on weight Svetlomir, but it just does not happen! I've weighed 52 kilos for so many years - my weight rarely changes. I think my awful bulge will always be visible. I would need a lot of chest fat to cover it!!
Heart valve rings are no problem for an MRI. Either are pacemarkers but they do need to be adjusted before and after an MRI. I have my MRIs done at hospital and there are interns in rhythmology that can adjust my pacemaker before and after the procedure.

Svetlomir Ivanov  Maybe you does not eat enough? I would not like to be a ''smart'', but if you does not have enough weight, it is logical to have less stamina and energy, and the heart to beat slowly, i.e. this to be e reason or at least factor for slow pace

Rita Savelis  My heart beats really fast, Svetlomir. Because of radiation and chemotherapy I had as a child my lungs have much scar tissue and less capacity. The radiation is also what caused the stenosis on my heart valves, 3 of them had to be worked on. Radiation effects never go away, they just continue to work away at your body slowly through the years. I also had 2 cancers in 2020. So most of my lack of stamina comes from that. I actually am moving all day long, despite my low energy. Eating more is as difficult as eating less, alas.  Thank you for your suggestions and your concern. Take care.

Rita Savelis  Hi Inna. I have 2 mechanical valves, which was what my surgeon recommended, as having more surgery is not advisable in a patient who has radiation-induced stenosis. After he saw my heart firsthand (during surgery) he verified that decision. 53 is a young age to have surgery and with 2 tissue valves each one would wear out at a different time. Because of mechanical valves I take anticoagulants, which made me nervous at first but I have had no problems and now it's just what I do. I take blood tests about once a month and adjust my own dose of anticoagulants. 

Rita Savelis  I know Trygve. I also have trouble reading about "fast recoveries"! That wasn't my experience.  Those first weeks after surgery were awful! I hear you about having a hard time with food after surgery. I lost my appetite. It's hard. Sometimes acknowledging that can make one feel a tiny bit better. It's the performance of acting like it's all easy that is harder for me! 
I'm okay. And you'll be okay. But maybe not today or tomorrow. Maybe you need some time. Small steps. Cancer was the last thing you needed now. But you will deal with it. Later. When you've had some time to digest heart surgery. Feeling low and in a funk is so so normal. You'll move forward at your own pace. Take care. 

Klara Čičić  Rita I have tendency to roll eyes when I see those extra quick recoveries! I know we are not all the same, but I just can't....

Rose Madura  My recovery was awful as well but thankfully did not have to deal with any cancers like you, Rita and Trygve.  I'm glad for those who have quick and uneventful recoveries. I look at it this way, God gives the trials to those who can handle it.  Praying for you.

Rita Savelis  Hi Tracy. Almost everyone gets put on a betablocker after heart surgery to slow one's heart down and give it a break. Some stay on longer than others. Some have reactions to betablockers and so their cardiologists change the dose or try other betablockers. Since betablockers slow you down, they can make one feel lethargic and generally unmotivated. I went into a depression about 5 months after valve surgery, and the day I ended metaprolol (7 months later) the depression lifted. That could have been a coincidence but I just felt better. However, my heart rate remained high and my cardiologist eventually put me on another med, ivabadrine. I can't tell you much about it actually - just that it does a similar job as betablockers and in my case was used because I didn't like being on a betablocker. You should discuss how you feel with your cardiologist. Maybe you can stop betablockers or find a different one. Or stop now that it's been a year. You are on a small dose. Everyone has different reactions to meds so you need to be vocal about how they are affecting you. You know your body better than the doctor. Take care.

Tracy Chang  Thanks for sharing your experience with me about the metoprolol. I will bring up my fatigue issue during my next visit to the cardiologist.  Thanks so much.

Rita Savelis  Hello Leslie. So sorry to hear about your stroke. I wish I could advise you on what type of valve to choose. Former Hodgkin's patients get both tissue and mechanical, depending on the state of their heart and valves. Sometimes a surgeon has to advise you according to your specific valve situation. I wish there were a perfect valve choice. How long have you had your pacemaker? I remember being upset when I got mine and it is a very big unsightly bulge on my skinny body. But it is not physically uncomfortable. I forget I have it. You might tell your pacemaker doctor that yours is uncomfortable. Maybe there is something that can be done.  I don't remember if I told you about the website https:// www.hodgkinsinternational.com which is for former Hodgkin's patients. There is also a facebook group called Hodgkin's Lymphoma/Disease Survival and Late Effects 1960 to early 2000's.  Please keep me updated as to what your doctors advise. Take care.

Leslie Bakos  HI RITA, AN UPDATE:I often think about you and feel bad that you had to go through what you have  gone through. I had my Hodgekins about 5 years later than you. I was age 17.  I think you were younger.  I happen to have lived near one of the worlds best hospitals and in the top 3 for heart.  I was lucky enough to get a heart shleld while taking radiation which fried my body) Today things are much different.  So I do not have a pacemaker.  BUt I have a calcified mitral and aorta. So what seems to happen and maybe you can share. Is that when a heart doc first looks at something like that they freak out.  This older lady who was at the admitting hospital yelled at me and told me I need heart surgery now. and could not believe the amount of calcification thought I was eating poorly...etc...so first of all I am doing very well for a person who got hit with a 4cm clot. I was not taking any anticoaguants for five years as I hated them.  I was running working out etc...I can run 5k (not very fast) lol.  So I got a lot of the test done in the hospital which is  a lot better than trying to get an appointment.  I had a halter monitor and found out that I had2 minutes of arrhythmia for 2 minutes and have to take this medicine which Í did not like Eloquis.  I guess I cannot play around...I got lucky once.  Then yesterday I saw the chief heart doctor....very nice kind lady...and she said that my heart is not bad because of something I did it was all from the radiation and it has mutated over time.   Many cardios have not seen our thing to often.  So this is the second doctor that freaked out on me.  So chief asked me about my exercise tolerance and then after I told her what I did she said you are doing great and said maybe you got 10 years to get surgery....much better than the hospital cardiologist said that I need immediate surgery...Just wanted to share this so you can help someone else that has gone through this...I just wonder sometimes..if we have had this cancer in the 90s would we have to go through that nasty surgery to take our spleen which is not done anymore...etc...I always have you in the back of my mind as a super strong person who has suffered a lot...you are my French inspiration) I just hope I can tolerate this Eloquis better...than last time takin my first dose after breakfast and pray they get nicer medicines....outt there than this crap.  Are your valves holding up well and how are you feeling...the new pacemakers are getting smaller and smaller.  that is good news)  SmileÍ! Les

Rita Savelis  Thanks for your long update Les. I personally have never had a cardiologist/surgeon who did not recognise immediately what radiation-induced heart disease looks like! So sorry you had to have that experience. And a pulmonologist who looks at a chest xray will see the same thing in your lungs. If you've had a stroke and arrythmia they will want to put you on an anticoagulant (like eloquis). I'm sorry that I misunderstool and thought you had a pacemaker. There are tiny pacemakers (some as small as a dime that go directly on the heart) but alas none of those work for my condition. I have to have the big bulky double chamber one.  My valves are holding up and I am doing okay. Hope that you will not need surgery until far into the future. Keep working out, moving and staying in shape. That is really the best you can do for your body. Don't let your health condition define you. Live your life.  Take care.

Leslie Bakos  Glad you are well! You should write a book my journey after Hodgekins....I hope I have no side effects from Eloquis...I thought I did the first time I took it...I took no meds in 2017 and then suddenly they pump you full of crap...and it kicks your butt..at least at this point I was doing okay with the beta blocker and ace inhibitor.  Now I have a statin and Eloquis...I hope to cut the statin out...my cholesterol is not super high and I have a lot of HDL as well. Let's keep in touch if you are ever feelin bad let me know...

Rita Savelis  I'm fine Klara, nice of you to ask. How about you? Your surgery was so recent. I remember it took me several months to feel better after OHS, and then months after that when I was physically okay I began to feel very low, as if after making it through all the physical stuff I suddenly had to deal with the mental anguish. I think this is common. But since then I've been okay, despite having had to deal with other non-heart related health problems in 2020-2021. It was easier for me as my children were already young adults. I feel for women like you who have to take care of their young children and perhaps feel guilty that they are not as energetic and strong for a few months. Women are superheroes! Take care.

Klara Čičić  I am very glad you are okay. I have no time to recover the way I should, but that is just the way it is. I feel ok, living day by day, trying to enjoy every moment and think positive . We are currently concentrated on getting kids to sleep through the night cause it is causing a lot of strain on my body. I hope you stay well. 


Keep on double ticking, you heart gladiator! :)