Rita's Guestbook

Rita Savelis  My valves are okay but I have chronic pleural effusions so have to take lasix and pee all the time. I also had 2 cancers (unrelated) in 2020- anal cancer and a right breast tumor. Then in 2023 I had a late effect from the anal cancer radiaion - I developed bladder stones and the bladder had calcification on its walls. This all took 6 months to take care of and I felt like one does when one has a bladder infection. I was bleeding from all of my orifices. It's only when they took those bladder stones out (I have a collection that I found myself) and finally allowed me to use some estrogen vaginal suppositories that I felt better, just worried that stones would come back.The urologist had never seen a calcified bladder.That was a year ago. I'm okay but get tired when I travel, when I walk up hill, when I walk too fast. Same old, same old. I'm so sorry that you have this heart bullshit again especially with your complex case

Kate Watson  Oh Rita, you’ve been through so much. That all sounds so so awful. It’s not right that some of us have to fight so hard to stay alive. 😟I just had to have a mammo and ultrasound today for a breast mass they saw on a chest CT.  Thankfully it was nothing cause I wouldn’t have been able to cope with one more thing. But I had my first surgical consultant yesterday and it was just brutal. I feel sick over it and can’t seem to accept this reality. I thought life was going to settle down for a little while after this relocation and a horrible year. Hahaha no suck luck- says the universe. Hugs to you Rita. 

Rita Savelis  Hi Terrie. Thanks for your message. It was nice to see you on the heartvalve site. I will always remember your beautiful soulful posts. I'm not sure that I can text you as my phone number is a French number (as I live in France). I'll give it a try. I'm okay. My 2 mechanical valves are holding up after 10 years. I had my pacemaker changed for a new battery. It's still big and unsightly (I'm too skinny) and part of it is almost poking out of my skin. Yuck! I also suffer from chronic pleural effusions since my heart surgery. These come and go and when they get too important I feel very out of breath and tired. I should be taking diuretics everyday to try to urinate out the extra liquid in my lung linings, but sometimes I don't because it's a drag to have to stay home and pee constantly. Heavy sigh. I'm okay. I was in the bay area not long ago (Oakland/Alameda) and the trip was exhausting for me. I hate being so tired and still having to function. But there was family to deal with. My parents are old. My sisters are difficult. The bay area is still so beautiful so have to enjoy those moments. And you, Terrie?

Rita Savelis  Dearest Sue, It is good to spend some time away from the site! 
I think of you as well and am happy that you are moving on. 
My 10th anniversary of heart valve surgery is this week - April 10th. Maybe time for me to move on. I am getting my pacemaker battery replaced with a new one Wednesday. That should be a much simpler operation than the first one. 
What I still suffer from these days is recurrent pleural effusions which make me out of breath. Even small exertions can wear me out when I have an effusion.
Those effusions come and go and I recognize them and should be taking diuretics (lasilix) more than I do (I hate peeing for hours ). I just got out of a 3 day hospital stay to have intravenous diuretics and get rid of most of the fluid in my lung linings (pleura). This was following a 2 week trip to California to see my family (93 yr old parents, bipolar sister, 2 other sisters who don't get along). I had a slight pleural effusion when I arrived and a bigger one when I left. I was just hoping I could avoid using the American medical system and get back to France where I could email my cardiologist and get hospitalised the same day no charge. 
And I did it. Feeling guilty that I was sick in the US and that I can not resolve all my family problems and live so far away. You caught me at a bad time. Actually I really am okay. The sun is shining in Paris after much cold and rain. It's still chilly, but sunny. 
I still look at the heart valve site fairly regularly but it no longer signals me when someone responds to a conversation thread I'm on (don't know what has changed - I used to get signals) so don't always follow things. The conversations on the site have changed in 10 years - used to be such adamant arguments about valve choices. And a few people with heavy problems, worse than me, and who wrote so eloquently and honestly about them. Those posts were always helpful to me. I never met these souls but I am grateful they were there to say something more than "you've got this". Each person needs something different to make it through. Thank you Sue as well for being there. You are a singular wonderful soul. Much love. Rita

Sue Maize  Dearest Rita,
Thank you for your beautiful and honest update…I so appreciate your perspective and have missed our back and forth. I’m sorry the trip back home wasn’t what you had hoped—at such times we try our best to temper expectations, but there’s always the hope…sigh. And to not feel well while there was horrible timing, poor you. 
I’m glad you’re home again and getting what you need…those first warm, sunny days after a long dreary winter (the seasonal, as well as the soul kinds) can make all the difference. I just returned from 4 days in the beautiful Canadian Rockies—just what I needed. :)
Bless you my friend—regardless of what you decide about the site, I would love to stay in touch. Perhaps through What’s App? 
I’ll email you and we’ll see how it goes. 
Sending you a big hug and lots of love…Sue xo🩷

Rita Savelis  Thank you for your kind note Tammy. Heart surgery is a big deal so worrying is normal. Some of it will end up being better than you expect, and other parts worse. You can't know ahead of time but try to trust your surgeons and take recovery one day at a time and don't compare your recovery with anyone else's. Your body is singular and your experience will be singular. I remember my surgeon telling me I would be tired for a long time afterwards - he didn't define a long time time. I was grateful because then I didn't compare myself with anyone else and just allowed myself the time my body and heart needed to recover without feeling that I wasn't "normal". Take care Tammy.

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.