Hi Helen,
I was reading your post, and thought you might be able to help. I'm up for AVR soon ( my stenosis is critical) and have put off surgery because ...Read more
Hi Helen,
I was reading your post, and thought you might be able to help. I'm up for AVR soon ( my stenosis is critical) and have put off surgery because I can't decide on a valve. I am 43, so of course mechanical would make sense. I have PMDD, and very bad monthly cycles. I am also intolerant to many medications. I am so afraid of Coumadin, but don't know if my fears are rational. On my last visit, my surgeon told me that he thought a tissue valve would last me 15 years. I know there's no way to know this. If that's true, he said I could do TAVR at age 58, and those valves may last longer then. ? I am scared to death, and can't even sleep at night for fear of making the wrong choice. Can you tell me if Coumadin has been an issue for you? I hope you are doing well, and thank you for sharing your experience.
Linda Richards If they could not repair me that's what I would have done. I'm 53.
Helen Roy Hi Julie
I thought I had responded to you but it not appeared for some reason!
I know how you feel a ... Read more
Helen Roy Hi Julie
I thought I had responded to you but it not appeared for some reason!
I know how you feel and it does seem like a huge decision. Sorry you have been worrying so much. I had to have a mechanical valve in the end due to needing a root replacement and also a very small valve. I'm really glad I did! Its very reassuring to know my heart is fixed for life now. I don't need to worry about a gradual decline or further surgery. I really couldn't face it again and my surgeon said I may not survive another one (my third open lot of open heart surgery). The Wafarin (Coumadin) is an inconvenience but nothing more than that. I used to worry a lot about the side effects but I just take supplements and hope for the best. I'm sure in 10 years time they will have come up with another drug that's better, but if not I would still rather take my chance with Warfarin then another lot of surgery. You get use to the ticking noise the valve makes and I find it quite reassuring now (although I really hated it at first). Re monthly cycles, you can talk to your doctor about the possibility of taking Vitamin K2 occasionally if its gets too bad. I have some on hand and some months I do need it, but not that often. Trivial I know, but my skin looks 100 times better since taking Warfarin!
Hope this helps and I hope it all goes well and try not to worry! It will all be over soon and you will so much better once its done :0).
Meredith Bray I don't mind the ticking! I thought it would drive me nutso, but it's reasonable. It's like living ne ... Read more
Meredith Bray I don't mind the ticking! I thought it would drive me nutso, but it's reasonable. It's like living next to the traintracks - at first its aggravating, but then you hardly notice it anymore.
Anyway...talk with a GYN about the possibility of an ablation. I don't have a lot of regrets, but not knowing about ablations and the fact that no one even bothered to discuss menstrual cycles after heart surgery with rank right up there. I don't have PMDD. I have noticed an increase on blood flow since surgery (I'm on warfarin) but am not anemic. I'm also not sure whether the increase is due to surgery, medication, or age.
I'm interested to hear what your outcome is!
-Meredith
Julie Guillaumin Thanks ladies. I find that doctors, especially where I live, have been very dismissive of women's hea ... Read more
Julie Guillaumin Thanks ladies. I find that doctors, especially where I live, have been very dismissive of women's health in general. I am still going back and forth on the decision, and sometimes I change my mind 3 times a day, but this info helps. It is reassuring to know that you can get used to the clicking. I hear every little sound, and am a very light sleeper. My surgery is scheduled for Feb 17, so now it's just preparation and making that call.
Thanks again.
Helen, I found returning to work to be challenging. I went back to work at 6 weeks post surgery. I started working 4 hours a day for the first week. I ...Read more
Helen, I found returning to work to be challenging. I went back to work at 6 weeks post surgery. I started working 4 hours a day for the first week. I thought I would be able to easily work a half day and get things done at home during the rest of the day. Turns out for me 4 hours of work exhausted me and I ended up resting in the afternoons. I am will start working full days this coming week and I am concerned about how I will do. But it is great to be feeling well enough to return to work.
Helen, I am 4 weeks post op and can say that while my memory is. to really changed, the world seems brighter and I feel younger. The aortic valve was bad enough ...Read more
Helen, I am 4 weeks post op and can say that while my memory is. to really changed, the world seems brighter and I feel younger. The aortic valve was bad enough to restrict the blood to the brain and I am starting to feel the difference in a positive way. I hope that this is also what your experiencing and that you continue to see the benefit from the surgery. Keep up the positive attitude and anything is possible.
Helen Roy Glad you have been feeling so much brighter Aubrey, I can't believe how well are doing!
Hi Helen – I loved reading your journals!! I was teary-eyed a few times. I wondered why you were saying things like motor way and cash point?? Then I realized ...Read more
Hi Helen – I loved reading your journals!! I was teary-eyed a few times. I wondered why you were saying things like motor way and cash point?? Then I realized you are in England. Haha Explains the difference in verbiage. I read the comment about your clothes that show your scar. I would not worry about that at all. This is your badge of honor and you should show it with pride. Most people will have no idea what you have been through but they will know you endured something that was tremendously difficult. People stare at me and then look away when I make eye contact. I just smile. I know they are curious as to what happened. It’s natural. I like having this scar because it symbolizes health and strength. I (we) am now healthier then I have been in a long time! I (we) am stronger for having faced this and overcame it. I cannot believe you had to go through this three different times. I bet it doesn’t get any easier either. Hang in there – your brain function will come back soon enough. I heard of a website Luminosity.com. They do brain teasers and games to improve cognitive function. It might be worth looking into. Take care you!!
Helen Roy You are right Renee about our surgery wounds being signs of survival and something we should be proud ... Read more
Helen Roy You are right Renee about our surgery wounds being signs of survival and something we should be proud of :0)
Before surgery, I would jokoingly blame my stupid memory lapses as lack of blood to the brain. Now after surgery, I know if got some left over effects of anesthesia. ...Read more
Before surgery, I would jokoingly blame my stupid memory lapses as lack of blood to the brain. Now after surgery, I know if got some left over effects of anesthesia. I\'m misspelling words all over the place and having even more memory lapses. I\'m pretty confident this will pass. My memeory for people\'s names has ALWAYS sucked, so that\'s nothing new. :)
Don\'t worry Helen things will get..... what was I talking about again? Oh, yeah, BETTER. Things will get better!
Helen Roy I am sure you are right and judging by your very funny journals I wouldn't say there is anything wron ... Read more
Helen Roy I am sure you are right and judging by your very funny journals I wouldn't say there is anything wrong with your cognitive processes :0).
On a more serious note, Helen, I have sometimes wondered (and I am pre-op) whether there are times when I am getting less blood to my brain and that affects ...Read more
On a more serious note, Helen, I have sometimes wondered (and I am pre-op) whether there are times when I am getting less blood to my brain and that affects my thinking and retention. I am real happy to see you are more alert now. Let\'s see what my experience post-surgery will be. I am wondering if I will improve blood flow to my brain and will have better cognition. I will let you know. To your continued healing!
Helen Roy You are right about the internet Jim. I scared myself a lot checking things on-line after surgery and ... Read more
Helen Roy You are right about the internet Jim. I scared myself a lot checking things on-line after surgery and it didn't help at all.....unlike this forum. I think you will notice a big difference in your sense of vitality and alertness.Its like a lot of heart symptoms they happen so gradually you don't notice them until, they are gone. Look forward to hearing how you get on post op...you must just want to get it over with now.
Ok, Helen, step away from the computer! Yes, the Internet can be our best friend or our worst tormentor! You write wonderfully. If it looked like \"|\\~??<>€£%¥\" ...Read more
Ok, Helen, step away from the computer! Yes, the Internet can be our best friend or our worst tormentor! You write wonderfully. If it looked like \"|\\~??<>€£%¥\" I\'d worry but it doesn\'t. In fact, you feeling well enough to research cognitive decline must mean you are recovering! I hope you are feeling good about yourself today. All the best!
Hi Helen,
I had my surgery over 3 years ago and rarely come here anymore, but when I saw your post about memory loss, I had to write. A number of people get ...Read more
Hi Helen,
I had my surgery over 3 years ago and rarely come here anymore, but when I saw your post about memory loss, I had to write. A number of people get what is referred to has \"pump head\" - memory loss from being on the heart-lung bypass machine. But what you are describing sounds like what I had. Before surgery (and when I think about it, probably for a couple of years before surgery) I had pretty severe cognitive issues including memory loss. I could not remember the simplest things. My cardiologist explained that my brain wasn\'t getting enough blood because my stenosis was so severe. The good news is that very soon after surgery, the fog lifted and my memory returned. I\'ve been feeling great, physically and mentally, ever since. I hope you do too!
Ricki Shine
Helen Roy Thanks Ricki I appreciate you sharing that with me and its reassuring to know you did get better with ... Read more
Helen Roy Thanks Ricki I appreciate you sharing that with me and its reassuring to know you did get better with time so hopefully so will I and the damage is not permanent :0)
Great post Helen. I will probably copy your example and post the things I can do at about 4 weeks. It is a very enlightening thing to thingkabout the progress ...Read more
Great post Helen. I will probably copy your example and post the things I can do at about 4 weeks. It is a very enlightening thing to thingkabout the progress that happens so quickly after surgery, even though it feels slow, it is really pretty quick.
Helen, thank you for sharing that. What an extraordinary perspective. Best wishes for continued recovery and let\'s pray that this is your last surgery.
Helen, you are hitting one of the balancing acts that the medical field tries to manage. The large number of pills I am on now from th hospital is their attempt ...Read more
Helen, you are hitting one of the balancing acts that the medical field tries to manage. The large number of pills I am on now from th hospital is their attempt to keep fluid out, heart rat down, etc.... During our recovery. You stated correctly that this is maybe a LASIX, potassium, dehydration balance and then there is he heart rate and blood pressure balance, and then the pain balance, etc...
What we could get better is the regular
calls from the doctors office checking on theses balances and for them to do a better Jon explaining that it is very,likely we will run into something that will need to be adjusted. Because it is not clear up front, it is scarier for us and makes them look like they are shooting from the hip.
Interesting if there was LASIX without a potassium supplement. Tammy and I I went so far as to ask for a lab test in a week to check my potassium since LASIX drives my potassium low very quickly. It was not an issue to get the lab test order, but should we need to request it?
I wonder how much of this is influence from the insurance companies as well.
Keep up the good work
Helen Roy Hi Aubrey, really good to hear from you. Glad you have had your surgery and recovering well.
To be h ... Read more
Helen Roy Hi Aubrey, really good to hear from you. Glad you have had your surgery and recovering well.
To be honest I got sick of the constant blood tests and drips of mineral salts when I in hospital and wasn't very gracious about it. I kept asking that they take the drip out of my arm and putting my tablets in the bin :0)
I can now see they were just doing their job. Ironically since leaving hospital I have had to request these things myself and the only thing my Dr surgery is interested in is my INR levels....but they are not heart care experts. And the UK do things very differently. I have no health insurance and my care is free on the NHS.
Going home for me has all been about reclaiming my body and learning to listen to it again and working out through my diet what I need to get well.
Thank you so much for your journal! You are spot on. I am four weeks post op and your journal has been incredibly helpful. I\'m glad someone else can relate ...Read more
Thank you so much for your journal! You are spot on. I am four weeks post op and your journal has been incredibly helpful. I\'m glad someone else can relate to the sleeplessness I was feeling. It was hard to describe but you said it beautifully. I hated sleep. The nightmares were horrid. Waking up stiff and in pain was the worst so I dreaded sleep. Although I knew that is what my body needed to heal. Thanks for you candid thoughts. Very very helpful!!! Take care.
Helen Roy Thanks for your very encouraging comments Renee. Hope you are sleeping better now :0)
Hmmm.... I wonder, should I get a bra to support my man-boobs so they don\'t pull on the incision?
Helen Roy Hi Ernie, well I'll leave that up to you.... but I think men do have it a little easier than women in ... Read more
Helen Roy Hi Ernie, well I'll leave that up to you.... but I think men do have it a little easier than women in that department :0) Hope your surgery goes well.
Hi Helen,
I will be having an AVR next month for severe AS. Thank you for being specific about chest issues..I had not even considered all that! I wish you ...Read more
Hi Helen,
I will be having an AVR next month for severe AS. Thank you for being specific about chest issues..I had not even considered all that! I wish you well on your way to 100% recovery.
Helen Roy Hi Lynn, thank you for your comments. I hope your surgery and stay in hospital goes very well, and th ... Read more
Helen Roy Hi Lynn, thank you for your comments. I hope your surgery and stay in hospital goes very well, and that you will be back home and feeling better soon after :0)
I admire your strength and positive attitude. Keep pushing yourself and continue to get better every day. Although I now have a pig valve and my heartbeats ...Read more
I admire your strength and positive attitude. Keep pushing yourself and continue to get better every day. Although I now have a pig valve and my heartbeats are more intense, I have come to enjoy listening to it.
Good on ya\' Helen! Take care.
Helen Roy Hi JH, I didn't realise you could hear a pig valve beating. Its strange isn't it having a heart that ... Read more
Helen Roy Hi JH, I didn't realise you could hear a pig valve beating. Its strange isn't it having a heart that works properly... Can't say I actually enjoy listening to mine but I do take my pulse when I'm bored and during the adverts on T.V. I couldn't take my pulse before because I could never find it but now I just put the T.V on silent :0)
Helen: Your advice about the panic attacks is priceless and I will hold onto it and pull it out when I need it. I\'m fairly certain that will happen to me. ...Read more
Helen: Your advice about the panic attacks is priceless and I will hold onto it and pull it out when I need it. I\'m fairly certain that will happen to me. I also worry about the back - had back surgery 4 years ago and it worked out perfectly. My back has been great since, so I\'m worried they RE-break it. I\'m on my way to the store to stock up on gelatin. My prayers are with you as you grow stronger every day.
Helen Roy Hi Cindy
I can understand your concerns about your back. I am sure when you talk to your surgeon bef ... Read more
Helen Roy Hi Cindy
I can understand your concerns about your back. I am sure when you talk to your surgeon before your operation you will be able to discuss your back concerns with him. I saw my surgeon and anaesthetist the day before my surgery and they explained everything to me and I could raise and concerns or specific issues I had. They must have operated on people with past back issues like you before.Looking forward to hearing from you when you are out of hospital and on the mend :0)
Hi Helen,
I have also had two heart repairs, the first at age 7 to correct what they call tetrology of fallot. I was blessed to be able to wait until 31 years ...Read more
Hi Helen,
I have also had two heart repairs, the first at age 7 to correct what they call tetrology of fallot. I was blessed to be able to wait until 31 years later at age 48. My previous repair was hanging in there but my mitral valve was prolapsing and regurgitating to the point of being severe. After more tests I was told that it was critical to have the surgery within the next 2-3 months. So after many prayers and hugs/kisses from the family, I left them all behind to put my trust in Dr Sako on March 20. Then the journey began. I am 5 months out today. I\'ve read all of your questions and concerns I am by no means an expert, but I think if you read my journal postings before/during/after that you just might find something helpful. I wish you all the best.
Helen Roy Thanks Michelle. I read your journal and am glad you are doing so well.
Hello Helen
I am scheduled for my aortic valve replacement in about a week or so. I am an engineer and through my research can actually describe in detail ...Read more
Hello Helen
I am scheduled for my aortic valve replacement in about a week or so. I am an engineer and through my research can actually describe in detail the physics of how and why they do these things, all the way down to the flow characteristics of the valves themselves.
That is not what we deal with as human beings though. It is the fear and the apprehension and the worry about how we will recover and to what level. Statistically we are in a very good position with the technology today. Set your goals and if they need to be modified to take a little longer it is not an issue. It will take whatever it takes.
The real key is to get up everyday and do your best with the positive attitude. Even if you take a few backslides and plateau a few times, it is just part of the journey. Just remember God did not put us here to give up or to be forlorn. We are his children and he loves us dearly and provides what we need when we need it. We just will not always understand the plan until we look back years later.
And yes, I am not looking forward to the pain but it is just part of our total life experiences that we collect along the way.
Helen Roy Hi Aubrey
I really hope your surgery goes well. I think you are very brave to research everything so ... Read more
Helen Roy Hi Aubrey
I really hope your surgery goes well. I think you are very brave to research everything so minutely before hand, but I am sure it will help you feel more in control and less powerless when in hospital. Its true what you say about God's plans and having a positive attitude. Knowing my life is in God's hands got me through my most difficult times in hospital. The night before my surgery I read Psalm 139: 16 'all the days ordained for me were written in your book before one of them came to be' and that was so reassuring. Also verse 13 'you created my inmost being, you knit me together in my mothers womb'. I wasn't a mistake because I was born with a genetic deficiency that caused my heart to fail.
The hospital was so good at looking after my medical needs but I knew that there were others needs that weren't being met...emotional, psychological and spiritual. On one of my lowest days when I felt I would never get better and get out of hospital God dropped 1 Peter 2: 24 into my mind 'by His wounds we are healed'. And I just sat there weeping with gratitude when I realised the enormity of what Jesus had done for me on the cross and what it meant to me in my situation there in hospital.
Hi Helen,
My surgery is next week and I have the same concerns going into it. We are similar in that this is my second, but my first was at 5 so I don\'t remember. ...Read more
Hi Helen,
My surgery is next week and I have the same concerns going into it. We are similar in that this is my second, but my first was at 5 so I don\'t remember. I\'ll be praying for you that it does not take a year to feel better and energized, and I hope you\'ll look back at this list in the Fall and struggle to remember that these were your concerns. Best of luck
Helen Roy Hi Cindy
Thanks for your comments and prayers. I hope I haven't made you feel worse about your surger ... Read more
Helen Roy Hi Cindy
Thanks for your comments and prayers. I hope I haven't made you feel worse about your surgery! At the end of the day we need it and so in the long run we will feel so much better :0) The first few days in hospital are quite bad but it does get better.They told me that although my surgery was the longest and most complicated of the day I was the fastest to recover in intensive care. I think if your body has experienced it before you are stronger and more resilient even if you don't remember it. Just one word of advice.....At first when I tried to sleep after surgery I had nightmares and panic attacks. My sister who is a psychotherapist said something that helped me alot. She said 'Helen last time you fell asleep people did things to you that were terrible. Your inner child needs to be told that its safe to go to sleep and the bad things are over now.' After that I could sleep fine. Praying your surgery will go really well and your recovery is very quick.
I am from: Weston Super Mare, United Kingdom
I thought I had responded to you but it not appeared for some reason!
I know how you feel a ... Read more
I thought I had responded to you but it not appeared for some reason!
I know how you feel and it does seem like a huge decision. Sorry you have been worrying so much. I had to have a mechanical valve in the end due to needing a root replacement and also a very small valve. I'm really glad I did! Its very reassuring to know my heart is fixed for life now. I don't need to worry about a gradual decline or further surgery. I really couldn't face it again and my surgeon said I may not survive another one (my third open lot of open heart surgery). The Wafarin (Coumadin) is an inconvenience but nothing more than that. I used to worry a lot about the side effects but I just take supplements and hope for the best. I'm sure in 10 years time they will have come up with another drug that's better, but if not I would still rather take my chance with Warfarin then another lot of surgery. You get use to the ticking noise the valve makes and I find it quite reassuring now (although I really hated it at first). Re monthly cycles, you can talk to your doctor about the possibility of taking Vitamin K2 occasionally if its gets too bad. I have some on hand and some months I do need it, but not that often. Trivial I know, but my skin looks 100 times better since taking Warfarin!
Hope this helps and I hope it all goes well and try not to worry! It will all be over soon and you will so much better once its done :0).
Anyway...talk with a GYN about the possibility of an ablation. I don't have a lot of regrets, but not knowing about ablations and the fact that no one even bothered to discuss menstrual cycles after heart surgery with rank right up there. I don't have PMDD. I have noticed an increase on blood flow since surgery (I'm on warfarin) but am not anemic. I'm also not sure whether the increase is due to surgery, medication, or age.
I'm interested to hear what your outcome is!
-Meredith
Thanks again.