Troy's Journal

Troy Ainsworth  A small percentage of us it will be toxic to our lungs. It gave me essentially pneumonia like symptoms and can linger for quite some time hampering lung capacity. I’m having a hard time getting rid of it, along with some other factors. Make sure they’re monitoring that, many docs don’t seem that educated on it

Claire Kreger-Boaz  Yes! I had to go off of it bc I was so sick & couldn’t eat. It also caused my liver numbers to be elevated. Thankfully I was only on it for a few weeks before my cardiologist stopped it.

Barbara Wood  I was on amiodorone for 5 months after surgery & was very glad to be taken off it! Mara, you should have a pulmonary function test before starting it & should be monitored the entire time you're on it - it can be toxic to nearly every organ in your body. Troy, so sorry for what you're going through...best wishes.

Rita Savelis  Thanks for your honest update. I also had a few months of fluid in the lungs and had draining and rehospitalisation. It's a drag when aftereffects slow down recovery. Hope things continue to get better for you now. It takes time. Over a year for me till I began to feel better. Take care.

Marie Myers  I had fast and irregular beats , but just for short periods of time. These episodes gradually decreased and eventually disappeared. The cardiologist had me on 12.5 mg metoprolol twice a days since the surgery, and I think that helped control it for me. Hope your beat normalizes soon-It is a scary feeling indeed...

Nancy Surprenant Takahashi  Had OHS on 4/10 and am in Afib for about 5 days now. it is an awful feeling, but most scary that it will stay this way. All that i read and see if that it's only temporary in about 95 percentage of the cases.

Jim Harvey   Went into high heartbeat count 4 days after OHS, treated in telemetry unit by amiodarone. Home for 5 days then went into AF, but official prognosis was a "cocktail of events" - taking drugs that increased and kept my glucose high (I'm diabetic), dehydration, and keytoacidosis. They did a cardioversion and it put me back in normal rythym.

Debbie Chatzky  I am also diabetic and having mitral valve replacement and maze surgery 5/31z which drugs increases blood glucose?

Peggy Whitecotton  very common, my surgeon told me that the heart actually has to do some remodeling after surgery and has to adjust to a new working valve. He said the recovery from surgery may heal in a few weeks but the heart itself can take 9 months to a year to recover and return to normal size after a AVR.

Lilly Black  Troy, I had it twice during my 1 week hospital stay....no fun. But there was some fluid remaining when I left the hospital. I had weekly lung X-rays for about a month. Luckily my body absorbed the remaining fluid. Why what is going on with you?

Marie Myers  I had one done on day 4. The rest of my fluid was absorbed like Lilly's did. I did not feel like my lungs were fully expanded for several weeks. Keep deep breathing and coughing up the crud in your lungs. It will get better!

Troy Ainsworth  I had one done a week ago Monday, right before I left the hospital. The fluid has built back up again so I need another tomorrow. I had to stop the Coumadin for a couple days before they scheduled it

Paul Jenkins  I had major pulmonary effusion problems shortly after valve surgery documented in detail in my journal. After a long hospital stay the problem was finally resolved with a thoroscopy. So far the problem looks like its fixed. Best wishes for a complete recovery.

Barbara Wood  I also had one done on day 4. I developed another p. effusion after I got home, about a week or 2 later, but lasix & a lot of coughing got rid of it. I didn't have any more problems after that.

Troy Ainsworth  They drained almost 2 liters of liquid from my right lung area yesterday I finally slept the night through and it was wonderful!

Jim Harvey   Troy, I haven't had my surgery yet, but one of the best pieces of advice came from a retired doc -- you don't have to break any records with your recovery!

Gina Fiorentino  Troy, it is wonderful to get your update. I was surprised to feel the energy returning a little each day, especially as I continued increasing the time a little bit during each of the short walks. My body got immediately fatigued when I did too much, so trust your body- there's time for everything!

Josh LaSov  Good stuff! Dr. Caffarelli is the man! Your story is quite similar to mine in that you got different opinions from different hospitals and so did I. Caffarelli told me my need for immediate surgery was serious because I was at risk of stroke, yet Cedars said I wasn't. Good thing I stayed at Hoag and with Caffarelli, my stroke risk was in the red zone after seeing the vegetation on my valve. I'm about 2 weeks ahead of you in terms of recovery. Definitely gets easier! Don't push it.

Michael Neverisky  I rented a powered recliner and found it quite helpful. I was able to lay on my back in my bed about a week after surgery, but the recliner was perfect for the many naps!

Bonnie Stone-Hope  Hello Troy,
I guess everyone has a different experience but I can honestly say there is no way to sleep lying on my back when first home. Had rented a hospital bed so could easily sit upright whenever. Also have a lazy boy recliner for being comfortable when downstairs.
After about 3 weeks?? I slept in my own bed, but had a couple of good firm pillows to keep my head elevated.

Troy Ainsworth  Thanks, I bought a bed wedge to keep me angled up a bit but think I should rent something I can move around mechanically

Bob Fessler  I bought an electric recliner and returned it after one night because it was not comfortable. I found out my regular recliner worked fine for me. Slept here for about a week. Three pillows strategically located worked after that. Definitely need a few weeks not being flat in bed.

Rita Savelis  You'll need to find a way to not have to lie flat for a few weeks, because that can feel very uncomfortable Pillows will work, or a wedge...
Take care.

Marie Myers  I rented an electric recliner for a month and really liked it. It made it easy for me to get up and down myself, and mine was pretty comfortable for sleeping.

Elaine Phares  I rented mine for two weeks. It was a lifesaver. I napped and slept in it at least part of the night. So worth it.

Bonnie Stone-Hope  Now you have your date for surgery, you have your surgeon chosen, so you can focus on recovery stuff, like prepared meals, loose clothing items, shoes easy to get on, etc.
Time will fly by.
Best wishes

Michael Neverisky  Troy, if my experience with MVR is common, that "crappy, low energy light headed" stuff will be completely gone immediately. I didn't realize it until I was in recovery and could get out of my hospital bed. I stood up and someone asked "are you feeling light headed?" It then dawned on me... wow!

Best wishes, you are on your way to feeling so much better!

Julie Copeland  I was the same way, but used my waiting time to prepare- recruit friends and family to help, fix some meals for the freezer, take care of bills and any paperwork, get ahead at work if you can, figure out childcare/carpools etc if you need that, get a grocery delivery subscription and try it out, look into a housekeeper/maid if needed, get a really great haircut that could last a month, etc. you’ll be amazed how time will pass and you’ll be at that date in no time!

Marie Myers  Sounds like a dilemma. I guess I would get another opinion from a surgeon in a totally different group. All the best to you in your decision. Please keep us posted

Gerald Poulton  Good advise Marie and I second it. You could also ask them both why tge would or wouldnt. If in doubt or if the artery could present a priblem in the future, I would get both done to avoid foture surgery.

Gina Fiorentino  Understood. Can totally relate. We are close in age and I, too... am new to this community. This seems to be a very safe and supportive place. Wishing you well.

Pat Bluemel  Hey Troy - I too had this struggle, you will settle on the choice right for you, and you'll likely change your mind several times before you land. Do your research, ask a lot of questions, and once you decide (I did just 2 days before surgery), don't look back or second guess. I went in hoping for a valve repair but not so lucky, I woke up with a St Judes Trifecta bio valve, and a brand new aortic arch made of Dacron (tm). My body is not good with medicine (nor am I responsible enough to maintain it ;-), I'm also terribly accident prone so I chose bio as the back up - full well knowing that I will likely have another go at the operating suite in the years to come. At that time I will likely go with an artificial valve and whatever blood thinners are needed as life will have slowed down (maybe?). I'm also gambling on the future for two things - Valve in Valve replacement (ask your surgeon for thoughts on this) and also kinder and easier medications to take to help w/ an artificial valve. Happy to talk more to calm your nerves. It's scary for all of us. Hang in there.

Troy Ainsworth  Thanks Pat, I’ve discussed TAVR with my docs and valve in valve etc.. I take their point that at my age a few valve in valves and you start creating your own stenosis. Especially if you have a valve that wears out prematurely. The newest mechanicals require less anticoagulants and maybe they continue to make advances in that area as well.

Pat Bluemel  Yep, points taken. I'm optimistic about advancements, but know that 2 surgeries will be enough in this life (HOPEFUlLY). I just helped a friend get through her 3rd! Going w/ an artificial valve doesn't completely absolve us from reoperation. There are folks in this group that have had to go another round with mechanical due to various reasons, though the occurrence STATs are considerably lower for sure. I pictured myself hitting the unlucky lottery there and that helped with my decision as well. It's agonizing, you'll get many - many different viewpoints and opinions, but one day you will wake up in the morning and say 'this is it, my decision, let's do this.'

Rita Savelis  Hi Troy, Sorry about your childhood cancer radiation. I had double valve replacement with mechanical valves 3 years ago due to childhood cancer radiation as well, so I feel for you. Your case is a special one because of the radiation you had, and I imagine that your doctors are familiar with your kind of stenosis.
Multiple surgeries in these cases are usually avoided if possible.
Take care.

Annie Tyndall  Well Troy... I’m 47 too, and have no desire to have another surgery down the road so I’ll take my chances with the blood thinners. I’m super active, have horses and the works... so I guess I’m just going to have to be careful and roll the dice. I meet with my surgeon for a final consult on the 19th, and have surgery scheduled on March 14th. Do you have a surgery date yet?

Gerald Poulton  There are a couple of good articles on my journal that deal with valve choices, mechanical vs tissue in middle age persons. They are well worth the read and basically state that tissue can be a good choice for middle aged, the reasons are helpful. They wanted to put a mechanical in me at a healthy active 65 but I opted for the Edwards bovine valve and am glad I did even if I have to face a second operation. My lifestyle is not condusive to warfarin and I take no medicines at all. I can also tell you that the surgery in my case was 1/10th the issue that I thought it would be, if that, and recovery was pretty smooth and quick, in the scheme of things. Some people do okay on warfarin and some dont at all, I did not want to take the chance of affecting the rest of my life in a negative way. Everyones case is different, so do the research and make an informed decision because it is your choice and you are the one that has to live with ut. All the best to you all awaiting surgery, 6 1/2 months post op aortic valce replacement and artery repair and life is great.👍