Am I done yet? Questions I yr after AVR

[Michellemar]

Hi guys
I'm coming up on my one year anniversary and Im not sure WHERE I'm at in my recuperation. It seems everybody just about is off on their 5mile walk before their 8hr workday so they can go home, wash the dog and put all their kids in bed, hope to walk ten miles TOMORROW before work. Ok, it seems that way to this former very athletic person. I'm not on any heart meds...but. Yes on a loop diuretic, 10 mg torsemide (like furosemide but has a generic name dia-something I think). Anyhow, I'm 63... Went from a .08cm to St. Jude Bovine 2.3cm.
My Cardiologist says my tricuspid valve is regurgitating, my liver is - or gets enlarged and the simplest test to whatever one would call my condition ...is that rather conspicuous pulse on the right side of my neck...and it's not an artery, it's backed up portal(?) blood. I posted months ago about did anybody know their BNP and got zero answers...(?!) reading till I'm bleary-eyed about everybody calls it a standard for CHF. Now my Cardiologist says, no...and the number HAS been improving-690 in the hospital to 195 last month. Can anybody relate to this?
By evening my heart starts to feel like a fat ballerina filled with helium trying to spin and dance on the stage. Well, that's what it feels like. I'm in a Chorale-evening rehearsals-but I have to miss more than half of them because I JUST have to get horizontal. And can I sleep !!! At least 10 hours or forget it!
I feel so weary! My get up and go in fact got up and left. Does this get better?? I don't get what's
going on.... And I CAN (I'm slender) walk a half hour every day... And then, horizontal please! Hope someone out there gets this, or at least some of it! Michelle

 

[Julian]

Having a tough time trying to figure out what your saying but I gather you dont feel the way you expected after one year? Basically you sleep more and still dont feel like you have enough energy to make it through the day? Everyone else is zipping along in life and you feel like your zipped out? Your worried you may be experiencing symptoms of heart failure?

Well im 8 months post op 29 years old and I feel great sometimes and crappy sometimes but mostly somewhere in between both. Congratulations on your first year and next year you should feel even better. The first year is the rookie year. The next 12 to 24 months is where you will really become adjusted to the new you.

Continue to ask your doctors questions and dont be afraid to get a 2nd or 3rd perspective. We truly can only take it day at a time. Studies have proven that the heart continues to restructure itself for 3 to 5 years after these types of surgery. In fact some members here have personally experienced this.

 

[epstns]

Micheele - I apologize for not remembering, but did you do any cardiac rehab after surgery? If so, how were things then? Do you feel that your condition has deteriorated, or that it just is not progressing any more? These answers may help us to help you decide what to do next.

Also, what do your docs say when you tell them that you just are not satisfied with your quality of life?

 

[Duffey]

I'm not sure that I can help, but I am almost 7 years post-avr, and it seems like I didn't put ALL issues behind me for 3-5 of them. Is there any chance that you're iron level is low? Has anyone mentioned high pulmonary measurements? The right side of my heart developed problems post-op . . . . enlarged atrium and noticeablely enlarged vena cavae. I'm also on a daily diuretic. It was a rather large dose at the start but has now been reduced to 40mg in the mornin. I also had the enlarged neck veins before getting my fluid levels under control.
From what you've written, I think your recovery might be slower than most. I know it's difficult, but from my own experience, it will get better.

 

[Michellemar]

Steve, you are ever spot on. As for quality of life, my cardiac Dr. And I have a sparring contest over that. I've been with him for-20(?) years, referred by my Arthritis Dr. Because I have ankylosing spondylitis, full blown and they were watching my A valve because of THAT, totally forgetting that I'd been treated in 1970 at Stanford at the Kaplan Institute for Hodgkins stage 1A (if you're going to have Hodgkin,have THAT stage. I just finished a book on Henry Kaplan and the Hodgkin's he worldwide fathered the cure for. Now I know, by Chance (as it were) as I was in his clinical trials, that I was randomly selected for rads alone and not chemotherapy too. They radiated mid sternum up, and I then refused the second round to the rest of the lymph nodes lower down, because I thought it was overdoing it. Turns out I was so not alone on that call; having had a splenectomy for staging purposes alone, many criticized his zealousness and said we were his living cadaver specimens or words to that effect. BUT-40 years out, and only then a new valve-the RC had closed off 91-93% and "by accident" (prayer!) that got found and stented in''05.,35 years post-rad. Now when my cardiac surgeon went in (min invasive) he said the heart muscle was pliable, not the shoe leather rads do to the aortic valve... So, still maybe scattered rads damaged the heart muscle a Bit. That my tricuspid is backwashing...??

Knowing I am a jangling mess, my heart Dr. Put me on an anti-depressant, bring ing arterial pressures down and shunting to the veins. Not really heart med but worked that way. Because of my "bamboo spine" ( they've tried lumbar punctures for my double hip replacements but can't get the needle in! ( well, with a scope they could if they had to).
Soo...as my spine, ribs are frozen in place any stretching I do is hyper flexion...but I have been on oxycontin (10 mg) for years now, I went from being unable to get onto the floor for 7(?) years to buying a ranch and stocking it with $10k of trees at least, working right along side my crew. Pain management works.! However I do believe the lifting huge trees and dragging and planting them did my hips in slightly earlier than if I'd been a little LESS active! (born with hip dysplasia, not found till I was 8 mos old, cast for 7 mos). Oh, right, my point.(?) the oxy lowered my bp so low (I felt fine!) that while I did cardio, the effort to meet their bp standards (90/whatever), was very trying-my first day I walked in, my bp was76/50(?), once it was 76/45....now that one even scared me. But eating potato chips from the hall machine, drinking lots of water just got too hard on me and the staff...not to mention my hip replacements began to complain, and according to the card. Nurse, it wasn't going to be my heart that stopped me from walking the Appalachian Trail (think big-why not?????).! hip x-rays show patent hip replacements(yay!!!) so next it's to physical therapy. But in the meantime, the disapptment of missing my targets for Chorale, my walking messed up by unbalanced muscle groups, I do my oxygen everyday, and the readings have slipped a point to 97% from 98% and I can feel it and so I'm just bummed out, next cardio is in 2 mos. It's just such a LONG HAUL and I get so tired missing my marks.
WhatREALLY surprises me is that none of y'all have mentioned BNP numbers. Yes, we remodel and remodel. But no one has a BNP they follow...????? Quality of life-YEAH, doing what they can short of ordering up a pound of chocolate bars for me a day!!! STILL... Guts?? Stamina??? How do you guys all do it??? Thank you, Steve, for teeing to get me out of this hole-it's not the first time you've done this for me (milk of magnesia became part of my vitamin regimen for.. Well less now(!). Thank you Duffy, that helped a bunch. Julian, your thoughtfulness has put a little breeze beneath my wings, as well.
Any more wild ideas, I'm here...reading my book-a-day on my kindle (60 on walking)... Kinda like watching grass grow-really soothing sort of .... ...... Hugs to you all. Michelle

 

[Ovie]

Your Fat dancing ballerina is single handily the craziest analogy explanation of something I've come across....that being said I'm sorry things aren't moving as fast as you thought. I'm 8 weeks post op on Thursday and I feel more fatigued and tired than I did before surgery, so I'm kind of in the same boat mentally, however 1 year compared to 8 weeks is quite the difference. I hope things start moving along for you. Best of wishes!

 

[Bina]

Many of us improve during the second year, and I hope you do too.

 

[Michellemar]

Thank you for your input! It's nice to know I still app have a sense of humor and also that ..most umportNtly...I'm not alone. Thank you, Bina, you've helped me before and I appreciate having "better" to look forward to. Ovie, if you're 8weeks out you're way early, I was hiding under my bed at eight weeks (not really but I DID fall on my head a bunch (why my head?) and BARELY had the strength to get up. if it weren't for my hip replacements when I finally DID get into cardio rehab (definitely do it!) I'd have been pretty darn good by now...but, unbalanced my muscles by not stretching enough and so my Spo2 (blood oxygen saturation) (I have one of those finger things, they're really cool and also will count your heartbeat) has gone done from 98% to 97%...but I started cardio at 95%, so exercise is the elixir...and SO healthy food. You've got aLOT of good stuff waiting for you...awesome for speaking out at 8 weeks!!! Thank you so much! just STAY with the group here, there's NO WAY this been there done that group won't be there for you. They are AWESOME!!! I didn't even have a person or home nurse helping me when I got home from the hospital. Guess who kept me going!!? Y'all!!! Blessings and thank you!!! Michelle

 

[Eva]

Michelle,

Recuperation may be slooooooooooooow for some of us, yet it does definitely get better.

 

[neil]

agree recuperation can be slow, and it does get better

 

[Boston Tiger]

It was more than a year and a half until I finally got to the point where I could forget that I had OHS for a number of days in a row. It seems as if everybody has their own post-operative issues and their body heals at its own pace. As others have said, things do get better in time.

 

[Michellemar]

Thank you for your replies. My GP figured that rearranging the antidepressant would help. Don't you know, it DID. I journal my bp, meds, etc...and wrote last night- Finally!!! I feel okay again! Hooray!!!!!!
I called my Cardio Dr. To apprise him of my meds (left a message for him) and when he called this morning, I tried to ask him what was wrong that I was needing a diuretic and he said I was thinking too much. That alot of women had it worse. I just wanted to know what mechanically was slowing down my recovery-does not sound like an irrational question! he just said (changing the subject) that if I was depressed my GP should not be prescribing and I should see a psychiatrist, that I was hyper and he had patients, we hung up. For a year he has not told me what side of the heart gets affected with AV stenosis - now these are simple questions, I was years ago studying for my Doctorate in Chinese medicine, did human dissection in my college phisio classes- and I can't be told why I need diuretics or what is remodeling in my heart.... He for a year has pretty much waved me off on answers... So Guess who wanted to go back and hide under the bed again, ONCE again being knocked back in my recovery, as apparently Depression is alleviated by Ignorance of one's condition ...and knowledge is not for a pretty head like mine (get comments like that). This happen to anyone else???? Instead of answers, he makes smiley faces on my reports and says "Be Happy". Like I'm not trying?
Michelle

 

[epstns]

Michelle - If my cardio treated me that way, my next cardio would not. I would probably fire that doctor and find one I can feel comfortable with.

Just my $.02 -- not trying to make things any worse than they are.

 

[karla]

Wow. I agree with Steve...I would NOT put up with that kind of condescending treatment. You deserve better.

 

[Michellemar]

You guys are so darned cool. Wow is all I can say to your responses. My only (only???) problem is that Ive been with him for almost 20 years; I had never openly criticized his judgement but with two prominent USC surgeons saying new aortic valve- now! (my systolic-I had asked to lay down when waiting to meet my proper surgeon) turned out to be 87, normally 110. It seemed kind of intuitive what that was. When the Surgeon came in, and saw the systolic he said first it's the systolic, then then diastolic. Certainly seemed to me we were speaking about heart failure. Post surgery my Cardiologist said he had wanted me to wait because he didn't want this pain and suffering for me. Sounds good, but he said if we just waited a less invasive method could be up for doing. Fair enough with the new femoral AVR or between ribs into aorta similar to stenting which is in fact as far as I know producing pretty darned good results. But with a dropping systolic??
The idea of changing horses midstream ... With a systolic that I think still sometimes drops ... And I really need the pressure, too (meant the emotional!!)... Is it my tricuspid backwashing that is causing a drop in the systolic and prevents me from going to Chorale practice which is-depressing!- is the venous easily noted pulse on my neck sometimes an indication of systolic drop which i need to know i need to lie down if it is dropping -I don't know when to
push a little as they wanted me to in cardio rehab, and the water is coming from- tricuspid regurgitation venous
backup? What?

I just still am kind of in shock. Almost 20 years and never an argument to this. There Could have been things he missed he shouldn't have but I don't know for sure, could have been classified anomalous and something hardly anyone would check or think to. So maybe I'm afraid of his judgement now.? I think that's it. Yeah it was #%€>? to speak to me that way, to talk down to me. But I haven't been trusting him and he knows it so he probably wonders why I HAVENT gotten a new Cardio yet. But if I asked him if the thing he missed should have been in my workups considering my history, he'll think I want to sue him. Which I don't and wouldn't because I ended up 100% and I know it was a simple prayer to Our Lady and trusting I was in safe hands (heavenly ones!) that caught it and saved my life. So is that weird or what? I know Dr.s are scared to death of lawsuits and I guess there ARE sue-happy people out there.
I suppose the answer is to ask another Dr. if checking for x is a standard operating procedure for my history or not. If so, I'm outtathere. If not... Maybe now that I'm actively involved in my own health care, I'll have to go anyway. Maybe you can't take back words once they're said. Steve- thank you AGAIN ...Karla, your words meant one whole lot, too.
What on earth would we do without you all probably literally saving our lives. Happy late anniversary, Steve. I'm up in2 days. Go class of 2011! Michelle

 

[Gail in Ca]

My gosh, you have so many questions that I have no idea how to answer and I've been through 3 surgeries! I looked back to '00 and have never had a BNP test, had to look it up as I didn't know what it measured.
I do feel even though you've been through tough illness, that you should feel better a yr after surgery. I went back to orchestra rehearsals 6 mos after my last surgery and just had a bit of stinging in the sternum from breathing deeply(woodwind). My 1st surgeon, Dr P Michael McFadden is at USC. Maybe he would recommend another cardio for you? I feel from your post that something isn't right with your cardiovascular system and it seems you need all the tests that will tell your docs what the heck is going on before it gets really bad for you.

 

[karla]

A BNP is usually used to measure how well treatment is working for heart failure. If it comes down with treatment, that indicates the treatment is working. That said, there are a few other things that will elevate a BNP level but you might have to ask your doc just what condition he is monitoring with the serial BNPs - and hope you can get a straight answer from him
My guess why most folks here are not having a BNP followed is because they do not have heart failure.
What are you taking the diuretic for? Diuretics are a mainstay for heart failure but they are usually used in combinationn with other heart meds, too, for heart failure...