Rita's Guestbook

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 ... Read more

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 ... Read more

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.

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 ... Read more

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 ... Read more

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 ... Read more

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, ... Read more

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 ... Read more

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 ... Read more

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.

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 ... Read more

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❣️

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. ... Read more

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) ... Read more

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.

Rita Savelis  Suzanne, It could have been your recent travels that changed your INR. This happens to me. Travel can be worse on INR than anything you eat. In fact I just ... Read more

Rita Savelis  Suzanne, It could have been your recent travels that changed your INR. This happens to me. Travel can be worse on INR than anything you eat. In fact I just got back from California and have decided to wait at least a week before testing again, hoping my level will get back to normal...I'd rather spend a week not thinking about it...
INR can wait. Travel is what is important! Glad you had a good trip!

Rita Savelis  When you have a mechanical valve (I have two) you have to take an anticoagulant to avoid clotting. There are all kinds of valve models out there, some of which ... Read more

Rita Savelis  When you have a mechanical valve (I have two) you have to take an anticoagulant to avoid clotting. There are all kinds of valve models out there, some of which require a fairly low INR level.
I didn't like the idea of having to take coumadin, and my INR levels fluctuate (which is the nature of INR) but now I have gotten used to the meds and am more stable. I test only about once a month now, because no matter how often you test your levels will be naturally varying slightly (even within the same day).
The side effects I got from coumadin were an itchy scalp (for a few months, but that passed). I also fart a lot in the morning (loud but not smelly). I don't have many other side effects.
None of it is fun, but it is manageable. And eventually one gets on with it.

This site is not set up easily (like a facebook) where you can communicate directly with someone, but you can use guestbook, which is then visible. On your journal entries, there will be a thread of responses, but you can't direct a response to someone in particular - they are for everyone.
You can use the search box above to search for mitral valve re-repair and see if old threads appear.
I feel for you. The mitral valve is tricky (more so than the aortic) and repairs are not always possible, even with the best of surgeons.
Wishing you the best.

Rita Savelis  Happy New Year Leslie! Yes, my spleen has been gone for about 40 yrs. My spine is okay. Radiation has left some scarring on my lungs...and I was told once by ... Read more

Rita Savelis  Happy New Year Leslie! Yes, my spleen has been gone for about 40 yrs. My spine is okay. Radiation has left some scarring on my lungs...and I was told once by a doctor that I couldn't run a marathon (never wanted to!), but I can't really say I have lung issues... My lungs do look terrible on chest xrays (it looks like tuberculosis - because of the scarring).
Hope your results come out okay. Take care.

Rita Savelis  Thankyou for your message Leslie. Yes, Hodgkin's is the gift that keeps on giving. I had terrible MOPP chemo and radiation in the 70's....
My thyroid had "nodules" ... Read more

Rita Savelis  Thankyou for your message Leslie. Yes, Hodgkin's is the gift that keeps on giving. I had terrible MOPP chemo and radiation in the 70's....
My thyroid had "nodules" and had to be removed (no cancer there though) but I had breast cancer and fertility issues and depression and decreased lung capacity.
No spine problems that I know of (so sorry to hear about your spine issues..)
Sometimes I think that by now I have gotten most everything that one could get post Hodgkin's cancer treatment, so maybe that's a relief....
The first time I googled "adult survivors of Hodgkin's" was a revelation.
It's easy to get angry and sad and frustrated...
But we carry on.
Wishing you some relief. Take care.

Leslie Bakos  Rita how was the thyroid surgery....I am very frail....I have lost a lot of weight in my shoulders and back. I go to the osteopath today. Were your nodules ... Read more

Leslie Bakos  Rita how was the thyroid surgery....I am very frail....I have lost a lot of weight in my shoulders and back. I go to the osteopath today. Were your nodules precancer or cancer. It is strange my bloodwork is good....I had a CT scan without contrast in August for the chest region. Just got an ultrasound for stomach and thyroid. So Sorry you had breast cancer. Well you are lucky you don't have an incisional umbilical hernia (DUCH) I can't even fix it because I am so skinny and think I have cancer. Well I guess I will know real soon. And BTW...you are a real survivor. I think I am not going to make it much longer. I am really falling a part. I really hope thyroid removal is not tooo painful with my really skinny neck... BTW you are a very pretty woman and look great for your age,,,take care Rita.

Rita Savelis  From what I understand thyroid cancer grows very very slowly, so usually surgery is not something that has to be done fast. I didn't have cancer or pre-cancer, ... Read more

Rita Savelis  From what I understand thyroid cancer grows very very slowly, so usually surgery is not something that has to be done fast. I didn't have cancer or pre-cancer, and my thyroid was working fine - it just had "nodules" which were growing and I kept getting the advice to take it out....I waited and then finally did when I trusted my surgeon. I really would have preferred to hang on to that thyroid. Surgery was not that big a deal (after some other things i've been through) from what I remember. But past events do fade. Now I have to take levothyrox once a day and have a blood test every 3 months or so to make sure my dose is correct. I also have a very skinny long neck! I don't remember a lot of pain. Just a neck drain for a few days, and then a scar, which faded eventually...
Wishing you the best.

Rita Savelis  Oh, Becky, I am so sorry you have to go through this and glad that I could offer even a tiny bit of support. How we go through something as big as OHS is so ... Read more

Rita Savelis  Oh, Becky, I am so sorry you have to go through this and glad that I could offer even a tiny bit of support. How we go through something as big as OHS is so very very personal. Everyone is different. This is about you and your husband and your family. I feel for you. Being the supporting spouse can be even more difficult than going through OHS. You are expected to keep it all together, and that can be a more difficult job. Everyone is offering their advice, but it doesn't necessarily apply to you and what you need to get through this.
Continuing work and taking care of family as you manage your husband's OHS is a hard enough job without having friends and family give you anything but support. Suppporting you in however you want/need to manage this.

I have been in hospital several times throughout my life and visitors stress me! I am very private. I needed to use all my strength to recover. The exhaustion I felt after OHS was extreme and doctors had told me it would be that way. I was glad I was forewarned. Weeks/months later when I felt stronger I found it therapeutic to write out all that had happened. For me. To get it out of my head.
On the heart valve site, I try to post realistically. And to be compassionate about how hard it can be. Sometimes just being understood can help a lot.
Take care Becky. Breathe. One day at a time. You'll get through this. And you don't have to be superwoman or have a handle on it all.

Rita Savelis  Hi Leslie. I had Hodgkin's at age 15 and heart valve surgery at age 53...
There are several former Hodgkin's patients on this site. Alas, heart disease is a ... Read more

Rita Savelis  Hi Leslie. I had Hodgkin's at age 15 and heart valve surgery at age 53...
There are several former Hodgkin's patients on this site. Alas, heart disease is a side effect of chest radiation, given enough time passes...
You can email me at ritasb@noos.fr
Take care.

Leslie Bakos  Hi Rita. Sorry you had to go to mechanical valves. They could not fix your mitral valve? It seems in Europe Replacement is more popular. How was your breathing. ... Read more

Leslie Bakos  Hi Rita. Sorry you had to go to mechanical valves. They could not fix your mitral valve? It seems in Europe Replacement is more popular. How was your breathing. I have some lung scars and COPD. I am also on Concor 10 Mg. Killing me physically. I am eating heart healthy but I have lost so much weight ina month. around 10 kilos. I hope nothing else is wrong. You are very strong.

Rita Savelis  I think my valves were pretty messed up. Surgeons almost always go in trying for a repair, but it's not always possible. Doing more surgery in the future was ... Read more

Rita Savelis  I think my valves were pretty messed up. Surgeons almost always go in trying for a repair, but it's not always possible. Doing more surgery in the future was not really advised for me either, especially with multiple valves needing replacement.
I'm sure that whoever is operating on you will have experience with post-Hodgkin's patients, their valve damage is not the same as in other cases. It is comforting to have a surgeon who has treated cases like ours.
In the USA patients are given more choices because it is a litiginous medical system and so better for doctors to have patients make choices, no matter what their choices might be.
I have lung scarring from radiation and probably got more fibrosis from the 4 pleural effusions I had after OHS that had to be drained.
My stenosis was discovered about 6 years before I had surgery, and then I was watched every 6 months or so with ultrasounds. I had no outward symptoms till about a year before OHS. Then I got out of breath on hills and stairs. After surgery I still get out of breath on hills and stairs, perhaps a bit less.... Doctors say my heart is fine. I wasn't on any heart medications before OHS and now am just on anticoagulants. My blood pressure has always been low and remains low. I've always been underweight and surgery made me possibly even skinnier for awhile. My surgeon said that being so thin was what let my heart keep going with bad valves for such a long time. The heart's job was easier with no extra weight.
No matter what you do, lots of stuff happens outside of your control.
Chemotherapy was hard. OHS was hard.
I wouldn't say I'm strong. I'm weak, really, and complain a lot and breakdown and then move forward. It's all one can do. It's easy to get down about one's lot in life and early Hodgkin's has meant a slew of later effects: thyroid problems, breast tumors, early menopause, OHS, anticoagulants, etc....
But you deal with each thing, you get anxious, you get mad, you get sad, you get upset....and then you move forward.
I'm sorry you have to go through with this, you've been through enough.
But you need faith in your surgeons. And you have to ask questions and understand your situation. And then you have to give up some control. There is no perfect way to handle it, no pefect surgeon, no perfect recovery. Just you and your very singular particular situation.
This site is helpful because at least you can talk about it all. But you can also get jealous of those who seemingly have a spectacular quick recovery.
For me real life is not like that. There are some hard times , and recovery can be long and slow. Being realistic is helpful to me.
Each person deals with this in a way that is helpful to him.
You can read through my old posts from 2015 to see my experience. Again, very singular to me. Everyone has a different experience.
Take care. I wish you the best.

Rita Savelis  Oh, Kate, I think of you all the time....
After the "microcalcifications" were taken out of my left breast in a simple surgery (but for which I spent THREE ... Read more

Rita Savelis  Oh, Kate, I think of you all the time....
After the "microcalcifications" were taken out of my left breast in a simple surgery (but for which I spent THREE weeks in hospital getting my anticoagulants back on track...Geez...), I pretty much wanted to put it all behind me. When I saw the surgeon again he said "the committee" had decided that radiation was not an option (part of standard protocol for removal of anything even slightly cancerous) - because of my pacemaker and already weakened heart from too much past radiation. So he said I should have a mastectomy. I decided not to because for me, at this time , that is only a protocol manoeuver for anything that might be left or might develop in the future. I'd rather wait. I've had cancer before, I'm not afraid of it. This was my second small thing removed from a breast...(the last one was 12 yrs ago). I just wanted to say NO to a doctor for once and have a breather. My gynecologist and GP (both women) said it was okay to make my own choice and that I would just have close followup mammograms.
To be really honest, I have forgotten about it. Whereas, my heart I can never forget.
I have also had a depression free year, which is a big improvement for me. My psychologist put me on a very small dose of a bipolar drug and it seems to be working for now.
So I'm not complaining. Well, I do complain. But I'm okay. Trying to enjoy little things and be less anxious. It's hard. But I'm okay.
Take care Kate. xoxox

Kate Watson  I'm glad to hear you are doing ok. That is a very tough choice, but it sounds like you've made the best one for you. I'm sure I'd do the same. I totally ... Read more

Kate Watson  I'm glad to hear you are doing ok. That is a very tough choice, but it sounds like you've made the best one for you. I'm sure I'd do the same. I totally understand that sentiment of saying "no" to a doctor for a change. I'm so glad to hear that you have had a depression free year! I am still working on finding the right meds for myself but am really feeling better than I was even a few months ago. The sun has been coming out more, it's been getting warmer outside, and I've been able to do some gardening so all of that helps too. Hugs to you, Rita. Keep in touch.

Rita Savelis  Hi Enrique. Thank you for your kind note. It's nice to see those who had heart surgery in 2015 still on the site, cheering everyone else on. Your positive attitude ... Read more

Rita Savelis  Hi Enrique. Thank you for your kind note. It's nice to see those who had heart surgery in 2015 still on the site, cheering everyone else on. Your positive attitude is lovely to behold. I am doing fine, heartwise, but have other health issues on my mind.... Because of the radiation and chemotherapy I had so many years ago as an adolescent, various "long term side effects" keep turning up....and I get annoyed each time I have to face another one. But all I can do is take the next steps. I feel attached to all my "virtual" heart buddies out there and checking in regularly feels right. It's never really over, this heart surgery experience that marks one forever.
Take care, Enrique, and enjoy the warmth of Miami!

Enrique K  Dear Rita, so sorry you are going through issues and I hope your long term effects slowly go away. You helped me through my journey and wanted to thank you ... Read more

Enrique K  Dear Rita, so sorry you are going through issues and I hope your long term effects slowly go away. You helped me through my journey and wanted to thank you from the bottom of my heart. I truly care about our new and old community and will continue to lend my support, encouragement and suggestions. I have a positive view in life after I had heart valve surgery and also suffered one of the biggest tragedies in my life this year. My 37 year old brother was shot dead and my father was shot but survived by the miracle of god. He has been suffering for 8 months in and out of the hospital and he lost his wife last year as well to cancer. Life throws punches at us and you never know why this things happen so let's enjoy life to the fullest because we only have one. Take Care Rita, good luck and big hugs coming your way❤️.

Rita Savelis  Dear Terrie, Thank you for your lovely note! I write for myself, to get it all out there and to try to make sense of it and am always happy if someone else ... Read more

Rita Savelis  Dear Terrie, Thank you for your lovely note! I write for myself, to get it all out there and to try to make sense of it and am always happy if someone else can relate to any of it. I know I was helped a lot by certain posts back in 2015 by people who probably didn't know how important they were to me. They tended to be a bit more offbeat.... I know not everyone wants brutal honesty, but it's what helps me get by. I wish you a smooth experience on April 24th. One can only move forward, and that's what you're doing. Lots of love, Rita

Rita Savelis  Thank you Terrie.... In fact, my biopsy was put off until Thursday (tomorrow). I've been in hospital for a few days now, getting my anticoagulants lowered with ... Read more

Rita Savelis  Thank you Terrie.... In fact, my biopsy was put off until Thursday (tomorrow). I've been in hospital for a few days now, getting my anticoagulants lowered with heperin... I'm on another floor of the hospital, and find myself missing the heart floor....
I'll keep you posted. This simple procedure should go fine... but then I'll see if I need more procedures...

Terrie Syvertsen  Thanks Rita, for the update and I hope this procedure is successful for you and that you won't need more. If you do, remember this community is out here thinking ... Read more

Terrie Syvertsen  Thanks Rita, for the update and I hope this procedure is successful for you and that you won't need more. If you do, remember this community is out here thinking of you and wishing you their/our all for good health and happiness! Later Heart Sister! Terrie

Terrie Syvertsen  Rita-Pardon my seemingly upbeat "American "positive attitude at what I know is not an easy going time you are having while continuing to find your way through ... Read more

Terrie Syvertsen  Rita-Pardon my seemingly upbeat "American "positive attitude at what I know is not an easy going time you are having while continuing to find your way through this procedure you will have tomorrow. I really do know(like many of us here in the community that have other issues than heart) that these tests and procedures are necessary but not always easy with the continued efforts to work at getting our bodies to their fullest health.
So I sincerely wish you that this procedure tomorrow does bring with it a good outcome for you. I wish Paris, France were not so far away for I should like to visit and bring with me a vase of beautiful, colorful flowers to set beside your table while you wait for this procedure to be done and over........would love to see a fellow heart Sister able to know she is well thought of and a smile to your face along with the feelings that this outcome will go well. Later Sister. Terrie

Rita Savelis  You are so sweet Terrie, and I can visualise your colorful flowers (here in grey Paris). The biopsy went well yesterday, and now I am just waiting for my anticoagulants ... Read more

Rita Savelis  You are so sweet Terrie, and I can visualise your colorful flowers (here in grey Paris). The biopsy went well yesterday, and now I am just waiting for my anticoagulants to get stablised (a few days?) so that I can go home. I am now enjoying a rest and bad French daytime TV....
Take care.

Terrie Syvertsen  Good news on the biopsy going well Rita! What hospital are you "waiting" in the next few days? It is grey here in Manteca so far today and I am headed out for ... Read more

Terrie Syvertsen  Good news on the biopsy going well Rita! What hospital are you "waiting" in the next few days? It is grey here in Manteca so far today and I am headed out for my "eye exam" to see if my cataracts are ready to be "worked" on so that I can get better into my art work and be ready for the beautiful spring flowers soon to follow our recent blossoms of the cherry, almond and other trees in our area. Picture soft pinks, white trees as far as the eyes can see as that is what lines many of the properties near where I live. I will post a photo on my journal site so you can actually see
them when you get round to the HVS site(maybe this afternoon). Enjoy the rest and TV. I had been stationary biking to the English program "As Time Goes by with Judi Dench! Have a good day and great to read your post! Terrie

Rita Savelis  I'm in the same hospital where I was for heart surgery, Hôpital Européen Georges Pompidou. No one seems in a hurry to get me out of here, typically French. ... Read more

Rita Savelis  I'm in the same hospital where I was for heart surgery, Hôpital Européen Georges Pompidou. No one seems in a hurry to get me out of here, typically French. It's the opposite of the U.S.. There has got to be a middle ground somewhere! Still on an IV of heparin....! (By the way, I'm from Oakland, but have never been to Manteca...)

Terrie Syvertsen  Rita, Rita, Rita! I was Born and raised in Oakland, California! NOW HOW is this for some fun news! I had never been across the Mountains to the San Joaquin ... Read more

Terrie Syvertsen  Rita, Rita, Rita! I was Born and raised in Oakland, California! NOW HOW is this for some fun news! I had never been across the Mountains to the San Joaquin Valley until Now! Moved here just before surgery due to a job change. Many years living in the Bay Area though!
I am hoping the time in Hospital gives you a chance to get your numbers to a good level as you gain your strength for when you can get out! Take care and lets have you looking forward to when they spring you! Terrie

Rita Savelis  Thank you so much for your nice comment, Julie.
I had depression after OHS, but I think it was more linked to me, to the event (!!), and to betablockers. Alas, ... Read more

Rita Savelis  Thank you so much for your nice comment, Julie.
I had depression after OHS, but I think it was more linked to me, to the event (!!), and to betablockers. Alas, depression is common. At least I was aware that it happens so even if it was hard, I faced it (with help). I couldn't be positive about what was not positive. But I knew that depression has an end.

I've been on coumadin for almost 2 years and I don't feel like it has contributed to (my) depression. Anticoagulants take a while to get used to (as the dose you need can go up and down - at some point you accept that, after a few months, and you go on). Everything gets easier with time.

It's hard to know whether to believe a surgeon, and to understand why he/she advocates for a certain kind of valve. It would be nice to have complete trust in someone, and especially that a surgeon is making a good choice for you. You are young for a tissue valve but so many people in the US seem to be having them (especially for aortic replacement). It does seem like the trend is toward acceptance of possible more surgeries and the hope for TAVR in the future.
The heated debates did not help my anxiety and depression! I hear you on that! After OHS I felt bad, and jealous of others who maybe had made a "better" decision or had more choices.
I had to get off the site sometimes because of the heated debates.
But there are also some wonderful sweet people out there with mechanical valves! I love them! I love people who know choices are not black and white. It's all very grey.
Ultimately there are truly no perfect choices, and it is so very very hard to have the medical field talk to one about the future and other procedures one will need to have...... after OHS.
We all hope that after OHS it will all be over and we will put heart problems behind us.. But we need to take it one day at a time. Who knows at all what the future will bring?
I don't know much about PMDD, but I was menopausal when I had OHS (I had a very early menopause due to cancer treatment). Sometimes I am relieved that I dont have to have periods while on anticoagulants. But again, many women, deal with that and are alright as well.
There is so much to think about. In many ways you can't be prepared.
Maybe the preparation is accepting that things will happen and you will deal with each one when it does. You can only take the next steps. You can't be ready for everything.
So I realise my post has not helped you with your decision. Everyone has a story.
But you are singular with your own story.
Take care, and I wish you the best.

Steve Wykstra  Yeah, it is kind of an obscure place, an exhibit in the BnF, which I can't even spell right...Bibliotheque Nationale de France (I cheated and googled). Anne ... Read more

Steve Wykstra  Yeah, it is kind of an obscure place, an exhibit in the BnF, which I can't even spell right...Bibliotheque Nationale de France (I cheated and googled). Anne and I have an little apartment near the Bastille we rent most summers for a couple weeks--I love Paris!

Rita Savelis  Thank you for your post Kate. I'm American but I live in Paris (my husband is French) and since there is a state-run medical system here, there is more equality ... Read more

Rita Savelis  Thank you for your post Kate. I'm American but I live in Paris (my husband is French) and since there is a state-run medical system here, there is more equality in care, and yes, one can stay in hospital longer. I have had several operations in the past and NEVER wanted to stay in hospital more than a few days. I always checked out early, etc.... but OHS was a whole other experience!! I feel so sorry for American patients who go home so soon after surgery and sleep on recliners.... with unanswered fears and questions.
In my case, it might have been that I ended up needing a pacemaker 2 weeks after OHS. The hospital cardiologist was waiting for my heart's electrical impulses to come back but they did not. She gave me the time in hopes that they would. I was in a fog for 2 weeks - there was NO WAY for me to be at home, I was also hooked up to machines and IV's... Then I had to get over the pacemaker surgery and get my INR stable. I really did NOT want to be at home cooking dinner and faced with a dirty apartment and my husband and (young adult) son who mean well, but.... Afterwards French patients can go to an optional "cardiac rehab" hospital and live-in but come home on weekends if one feels like it. I NEVER thought beforehand that I would take that option. I had planned to take live-out, but I was STILL so TIRED. It was a good solution for me because at the rehab hospital one can go to talks by nurses about anticoagulants and other boring stuff and one can go outside and sit in a café but there is still the hospital staff handy for all those questions one has. When I went home, I was ready to go home, but there was still liquid in my lung lining and I had to return to hospital (in an emergency situation) to have my lung lining drained for a 4th time. That time they kept me in the hospital TOO long and I was ready to go home. Anyway, all that care was free of cost to me, and my meds and doctors visits and lab tests are free. No money changes hands so the financial stress that many have in the U.S. is just not there. I had great care in the USA years ago when I had cancer, and great care here as well. The medical "culture" is different but I think the doctors are good in both countries. However the costs in the U.S. mean that only some people get good care.
I think American patients are amazing because they leave hospital so soon, but in fact they are amazing because they have to be. One acclimates to one's health system and they have acclimated to theirs. The system praises those who are strong and tough and get on with it and run marathons soon after!

Kate Watson  I've heard about the medical system there, makes so much more sense to me. Pretty amazing that it was all free. You are right that here when we get discharged, ... Read more

Kate Watson  I've heard about the medical system there, makes so much more sense to me. Pretty amazing that it was all free. You are right that here when we get discharged, we go home with these fears and anxieties. It's hard to feel ok and safe, especially after having complications. I'm sorry you ended up needing a pacemaker, sounds like a rough time altogether. They just stopped my a fib drug and are hopeful it will resolve but I am definitely scared the a-fib will come back. So many things come up during this recovery and I wonder if they are "normal." And yes you are right, it seems the system praises the super hero patients. I sure won't be running any marathons any time soon!

Rita Savelis  Yeah, no one told me about the various things that could/would come up after surgery. I think for a surgeon those are "small inconveniences", but for us each ... Read more

Rita Savelis  Yeah, no one told me about the various things that could/would come up after surgery. I think for a surgeon those are "small inconveniences", but for us each one has to be dealt with. Having had long term side effects from cancer treatment makes me realise also that long term effects may or may not come up from the intense procedures involved in OHS. Can't think about that, but I do.

Kate Watson  I can't even imagine having survived cancer and then having to go through this. It doesn't seem fair. You are so strong and brave! I agree, can't help but to ... Read more

Kate Watson  I can't even imagine having survived cancer and then having to go through this. It doesn't seem fair. You are so strong and brave! I agree, can't help but to think about what the long term effects of this may be. I developed chronic pain after my first surgery, ( fibromyalgia). They say it often develops after a trauma so it makes sense that it happened after OHS. I can't imagine people on here who have had 4,5 and more OHS, I never want to go through this again if I can help it! I guess some of us have much harder recoveries than others though.
Ps I always have wanted to visit Paris. My husband lived there for a period of time when he was young and we swear we are going to get there together someday!

Rita Savelis  Hi Jean.
I have been avoiding this site for awhile as I have been feeling quite down. Didn't have the energy to empathise and some of the posts got me down. ... Read more

Rita Savelis  Hi Jean.
I have been avoiding this site for awhile as I have been feeling quite down. Didn't have the energy to empathise and some of the posts got me down.
Now I go on from time to time.
I would love to feel motivated and energetic and joyful but it is not the case right now.
I'm going on a trip to see my family in California soon and hoping that a change of scenery may do me good....
Hope you are well.

Rita Savelis  I waited until I had "symptoms" (my cardiologist's advice). Usually doctors monitor you and see how your cardiac ultrasounds compare with your symptoms. If ... Read more

Rita Savelis  I waited until I had "symptoms" (my cardiologist's advice). Usually doctors monitor you and see how your cardiac ultrasounds compare with your symptoms. If symptoms get worse, surgery is recommended. For me, it really was my decision. I could have waited longer. The decision is really hard to make and oh, so stressful. The waiting is possibly worse than just going through with it...

Rita Savelis  I had surgery in April 2015. You can look at my old posts. I'm rarely on this site these days. It just got too hard to keep empathising with everyone. The "complications" ... Read more

Rita Savelis  I had surgery in April 2015. You can look at my old posts. I'm rarely on this site these days. It just got too hard to keep empathising with everyone. The "complications" I had were developing fluid around the lining of my lungs that had to be drained 4 times . Draining was no problem but the fluid made me feel short of breath. But my sking seemed to be fine despite all that radiation.