Rita's Guestbook

Rita Savelis  Hello Miriam. I'm sorry that you have to go through this, but it sounds like you have a stong surgical team at the Cleveland Clinic, and you can put your trust in them. Recovery from OHS can be long. Your heart needs time to heal. I remember my surgeon told me that I would feel exhausted for a long time. I was glad for that warning because then I didn't feel bad when i took longer than others to recover. I had 3 pleural effusions after surgery, one after another. Fluid in your lung lining makes you tired because your lungs don't have 100% capacity. Each time my lung lining was drained I had energy again. But then another effusion would develop. I also had to have a pacemaker installed about 2 weeks after OHS. This only happens in about 3% of cases, but caught me offguard. Sometimes after extensive surgery the heart's electrical lines don't work as before and the pacemaker solves that. I was in hospital for 3 weeks (resting!). Then I was offered the possibility of going to  a live-in cardiac rehab for another 3 weeks. That gave me more time to rest and to be under medical supervision and begin to exercise. I took naps every afternoon. When I got home, I was ready to be home but grateful for the time I had had to heal. A few days later I ended up having a 4th pleural effusion and going back into hospital to have it drained.  I went back to work about 3 months after surgery. OHS for me was a big deal, and not easy. The week following OHS I thought I might never get my strength back and was so exhausted I couldn't even watch TV! So when I look at the heart valve site I am amazed by those (many) who bounce right back. That was not my case. But long term effects of radiation create a different kind of stenosis and working on 3 valves is not like working on one. I am glad to hear that you are in good shape because that is important. If the Cleveland clinic thinks you are a good candidate , then you are. Wishing you the best. And do not hesitate to ask me any more questions. You can also read my old posts from 2015 on because I did try to describe my experience, even the hard parts. It was healing for me to be honest. Take care.

Miriam St.Clair  Thank you so much, Rita! I was advised that pleural effusions could be a problem and that a pacemaker might also be needed. You've been so helpful with what to expect and I really appreciate it. I will probably have more questions and will reach out to you again. Thank you!

Rita Savelis  Hi Jay. I had 2 valves replaced 7 years ago with mechanical valves. I remember that at first I would sometimes be aware of my heart beating or my valves ticking. If the room was very very quiet - perhaps if I was reading on the couch. I felt very vulnerable after surgery and sometimes put a pillow on my chest as a barrier between me and the world. It also muffled any sound. Honestly it was rare that I was aware of the sound. Now, many years later it doesn't bother me at all. I rarely hear it. This heart surgery experience is different for each patient. Each patient is anxious about something. It's hard. It's the unknown. But I can honestly say that the sound of my heart was the least of my worries. Getting over surgery was a long hard tiring process. I was exhausted for so long. Other patients bounce back right away. But the sound of my heart or valves has never been something that bothered me. Take care.

Rita Savelis  Thank you for your kind words Lisa. I'm sorry you have to go through this. It's hard, and then you get better, slowly, at your own pace. I don't think I'm strong, I think I just got through OHS like one does. Being very open and honest helped me. I had to write it out to make sense of it. I also felt like I needed to speak honstly so that those who weren't having such an easy time could still feel it was "normal" and that I could certainly relate to them. Wishing you the best. Feel free to contact me anytime. I don't go on the heart valve site that often anymore but have fond memories of some of the people whose stories moved me, people who I've never met, but feel strongly about. Take care.

Rita Savelis  Hello dear Terrie! So lovely to read your words. You always know what to say in the most beautiful way. I'm doing okay. Moving forward. The need to put words on experiences is always there. So I do it and move on. Wishing love, peace, hope and joy to you as well, my dearest heart sister. ❤

Rita Savelis  I live in Paris and there are labs everywhere. There are several within walking distance.I can go as often as I like at no cost, so I go to a lab. But I should look into a home test machine. I think that in the U.S. that would be useful as it is so much more difficult to get a lab test.

Marshall Rader  Yes, in the US one has to make an appointment to get a lab test. If you can have your blood check here in the US at any lab for free, I would be all over that.

Rita Savelis  I'm fine Enrique. It's been almost 4 years since OHS. It really is the past now, isn't is? Although of course every time my heart pounds quickly, I think of it. Always nice to hear from you and my heart surgery friends from vintage 2015, 2016 and 2017. Take care.

Rita Savelis  I eat everything in moderation. I eat greens. My doctors told me i could eat what i wanted and organise my med dose around that. It took me (my body) awhile to get used to coumadin so it was months before my INR was stable. This is common. Today taking coumadin is just what i do and i have a blood test once a month. But for the first months it was every week.

Rita Savelis  I can hear my valves ticking if the room is very quiet. But many patients no matter what their valve tyoe hear their heart beats much more strongly. It can be disconcerting and then one gets used to it. On this site if u search under "the sound of a mechanical valve" there is a youtube example of the sound. It does vary. I had no choice about getting mechanical valves but the sound is really the smallest concern for me.

Rita Savelis  Sommer, I had had my children and was menopausal when i had OHS, female considerations for anticoagulants that male patients don't have. Everything is doable, but something to consider. It sounds like you really trust your cardiologist and hopefully your surgeon too. They should guide u because you are a specific patient with your own medical condition and your own story. Some patients, even young, decide to buy time with a tissue valve and see what happens 10 years down the line. There are trends and protocols and statistics and we fall in there somewhere as patients but protocols change every decade. Valves are a big industry. As I said before i didn't have choices as my tissues, lungs, etc have radiation damage so a one shot deal was better for me. Surgeons here in France (where many new OHS and valve trends were developed) still did not want to trust an unknown medical future in my case. Again, I feel for you being so young in the cardiac world. It's in your favor because you should bounce back quickly after surgery as long as you don't have other medical problems. But the difficult valve decision remains. Wishing you peace in whatever choice you make. Take care.

Sommer Russell  Rita, thank you so much for sharing all this with me. In preparation for everything, I had a uterine ablation 2 months ago. My really large concern about Coumadin is a brain bleed. I have a strong stroke history in my family, but not by brain aneurysm. So, Coumadin would actually help in protecting me from the type of Strokes that occur in my family. I am not a risk taker at all. I don't want to put my family through more surgeries if I can help it. My cardiologist said that they are close (meaning in 5-10 years) of making Coumadin obsolete and they are trialing the newer anticoagulants for Mechanical Valve. Do you have any insight or thoughts on this?

Rita Savelis  I'm sorry but I don't know much about newer anticoagulants or the end of coumadin. I do know that there are mechanical valves (such as the onyx) that require only a very low INR. Many patients on this site say good things about those valves. Don't know if your cardiologist has mentioned them.

Sommer Russell  I go tomorrow to meet with the surgeon. I have put the Onyx on my list. My surgeon has said that he only shoots for an INR of around 2 on the aortic valve anyway. What is you goal for INR?

Diane Maher  Rita....I have always found your posts to be so thoughtful, insightful, and helpful.....they are so appreciated!!!!! You are a very valued member of the community and I too am so thankful for your continued involvement❣️

Anna Jones  Rita, I agree. I am very glad you are on this site and giving us your wisdom, experience, common sense, and straight talk. It has helped to pull me through the fear on a number of occasions.

Sue Tom  Rita, I am so grateful for all your informative posts and look forward to them. I am still in the planning stages of having OHS soon for ascending aortic aneurysm. Very scared, but reading your posts helps calm me down. Thank you!

Rita Savelis  Helllo Barbara. It is very hot in Paris!
I do sometimes wonder why I am STILL looking at the site 3 years later. Force of habit, I guess...(boredom at work) and the enjoyment of seeing occasional posts from past buddies.
I do feel also that there are a few people out there who need humor and/or someone who validates that OHS is hard, and that if you don't train for a marathon a month afterwards, it's okay too, and you're normal...
These are the kind of posts I needed to see, so I try to give a little back when I can.
And your story (valve repaired at age 49....and replacement needed 18 years later) is interesting and valid and should be shared.... even if I'm sorry that mitral replacement couldn't last another 30 years... Those darn mitral valves!!
Wishing you a smooth surgery and an easy recovery and a respite from the English heat.

Debbie Chatzky  Hello Barbara. I had my mitral valve repaired when I was 39 and 21 years later May 31st , had it replaced with a bovine valve. It’s hard not to wonder how long it will last.