My not-so-great recovery.....

[Mike From Michigan]

Although my family gave you some brief updates on my recovery, I am finally home and only now able and ready to tell you what my often hellish recovery has been like ? the real story. Thanks to everyone who sent their well wishes.

Quick review:
Date of AVR surgery: 6/18
Procedures used: Medtronic Mosaic Porcine Valve, Dacron graft to fix ascending aortic aneurysm.
Days in ICU: 6
Days in ?step-down? unit: 5

The surgery itself went well but my recovery was a little more complicated and painful than I anticipated - being a very healthy 43 y/o guy I kept being told that I should ?fly-through? it.. Recall also that I ended up in the hospital overnight on 6/15 from a bad hematoma from the cardiac cath. test - I still have a huge black/blue/purple (almost a foot in diameter).

Main problems why I was in ICU so long:
1. Low BP
2. Poor blood oxygen levels/ fluid in lungs
3. Periods of A-fib

Those day/nights in ICU were not fun at all ? the minutes seemed like hours and I was also usually in some pretty acute pain. I had possibly the lowest time in my life on the Monday night in ICU. I remember I couldn?t find the nurse call button (needed water) so I tried calling him by yelling, which was also painful - it seemed like hours before I caught the attention of someone who happened to be walking by. I was still all tubed up, oxygen mask on (too tight), a little disoriented, nauseous and was making zero progress in my recovery. I slept maybe 1 hour in that night that seemed to last for 36 hours? Luckily that memory will fade with time (I hope) ? it was the worst and I could see how some people would just want to end it all if those bad nights continued?

Anyway, I finally improved enough to be moved to a regular room but some new problems developed:
1. Afternoon/evening nausea
2. Thrush ? MAJOR tongue discomfort
3. More fluid in lungs

The nausea went away after a few days, but the thrush made it very hard to sleep and eat, 2 pretty important things! In fact I am still suffering from it even though I?ve been on antibiotics for it for 6 days. My tongue feels like someone poured hot sauce on it if anything but water touches it.. At night I've had to wake up every 10 minutes for a drink to wet my parched and burning mouth. What is REM sleep again?

They also ended up having to draw 1 liter of fluid from my left lung - that gave me some relief but I had some very painful moments later that day as the lung readjusted itself.. Luckily the sternum pain is now within reason ? it was very bad up until yesterday; drugs were only somewhat helpful.

Finally, my latest problem is coughing spasms ? not deep productive coughs but a series of smaller, rapid coughs that make it hard to breath. Any exertion (even talking) usually brings.it on which makes going on walks a little hard. A prescription cough medicine that I just took for the 1st time seems to be helping this problem; I am also on oxygen as required (about 1/2 the time).

Just goes to show you that you never know what to expect. I did 100?s of hours of research, conducted surveys on various topics on this very website and felt very comfortable that I knew what to expect. On the bright side I am still alive but these 1st 12 days have been very rough. Hopefully tomorrow will be the start of some good luck?

Mike


P.S.: For those still on the pre-surgery side, bear in mind that my case is luckily not typical. Most stories are MUCH better!

 

[Rich]

Hi Mike,
I'm so sorry to hear you had(and still have) a lot of problems.
I guess this shows us that we don't live in a perfect world.
Hopefully things will improve over time.
You are only a year older than my son and I can only imagine how I would feel if it was him in your shoes.
Again if I can be of any assistance just give me a call, I'm right around the corner.
Rich

 

[McCln]

Mike

Mike

I am so sorry about your rough start in recovery. It is true that not scenerios are documented, as they are unusual surprises and no two people recover the same way. You will feel better soon enough, just get through the rough patches and share your concerns with your doctor and with us, we will help the best we can. Take care and keep hanging in there. You will feel better.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Ross]

Mike it sounds like what I went through only I spent 50 days in CSICU, never saw step down and 10 days in rehab learning to walk and take care of myself again. No offense meant to the physically fit people, but pumping yourself up with additional excercise may not mean a thing. These things happen to some of us.

Sounds like you and I could swap stories about the hell we experienced.

 

[ALCapshaw2]

Hello Mike,

Sorry to hear of your post op 'bumps in the road'.
What hospital were you in? Beaumont? U of M? other?

I find it strange that they gave you anti-biotics for Thrush. Isn't that caused by a Yeast infection? See if you can find a copy of "The Yeast Connection" by Dr. Wm. Crook. Nystatin is typically used for low level yeast infections. There are some high power anti-fungal medications (I forgot the names) but be careful of drug interactions with those.

Do you work at the Auburn Hills 'palace'?

'AL'

 

[Abbanabba]

Sorry to hear how horrible your recovery was, but it sounds like you're slowly getting better..... and I guess it still beats the alternative..!! I'm sure in your own time you'll be feeling and appreciating the benefits from it all.

Sending best wishes your way....
Anna : )

 

[Lois Lane]

Mike -
Hopefully the worst is behind you and the opportunity to recuperate in the nice summer weather will help....
Thrush for c patients is treated with plain yogurt (unless it is systemic then you get probiotic acedophelis -spelling incorrect) - the taste is disgusting but it is soothing to the tongue. As I understand it pretty much anything that is given to a patient to suppress their immune system will allow thrush to flourish - a nasty side effect.
Here's hoping that your only memories of this are how it extended your life.....
LL

 

[JimL]

Mike, I too am sorry you had such a difficult time. Beaumont in Royal Oak is an excellent hospital. It's good to hear that you are home, even after spending so much of your life in ICU. I too am not that far away, if you need any help.

 

[tiggerangelgirl]

i know how you felt

i know how you felt

sorry things didnt go so great but I thought I was reading my own expierence . I had ohs on may 18th and it was a real bad time,all except the thrush it went pretty much the same but I could not talk about it right away because it was so fresh in my mind. I did not have one day of pain relief and even talking hurt real bad. I also had the problems with my lung but not until 3 weeks after surgery. I was having alot of left shoulder back pain and short of breath and i felt this gurggling kinda feeling every time i breathed in,then it got so bad i almost passed out from walking. I have had my lung drained a few times since and i know that pain its like a bad jab and gas everytime i tried to breath deep i got a bad pain so all i did was shallow breathing falling asleep was the worst because i would get that stabbing pain every time i dose off. well anyways enough of the bad stuff I wanted to say that it does get better, im still having probles with the wheezing and coughing,that was the worst it like you cant stop coughing and it feels like you gurggle each time you breathe . I also drank the cough med. they put me on tussionex but it really didnt help. remember if you are still coughing bad let your dr know for me it was a sign that my lung filled up again,iam getting weekly xrays make sure you dont go long if you are in that pain because it can be relieved.
I know all this heart surgery stuff is pretty scary im only 28 and live on my own,no husband or kids and it has been a long road but things are looking up and i know they will for you ,just dont mark your progress in days ,do it in weeks. Many prayers of a speedy recovery sent your way.

 

[tobagotwo]

Mike, you must've done something very bad in a previous life. Either that, or you have good Yin luck in all the little things, and the Yang got you on the big ones.

It did seem like you would be likely to swim right through this. You have all of the right qualifications. Sometimes, it just doesn't happen. I'm grateful that at least you're still here to correspond with. Eventually, you may feel that way again, too. Right now, I guess you would have a right to feel pretty cheated.

This has been a tough season at VR, with the realities of statistics rearing their ugly heads, and people having much-too-difficult recoveries. I guess the Yang was on vacation for a while, rested up, and came back full of vigor. It will balance again soon, but I regret that you have suffered so much of it.

The joker in the deck is the thrush. Things seemed really just about as bad as they could be, and then the thrush was thrown into the mix.

The fact that you're posting, and are starting to speak in past tense about these things is a good sign. We look forward to you beating each of the demons you have faced in the last few weeks.

Wishing you well on your recovery,

 

[Debrinha GT]

Sorry to hear that!

Sorry to hear that!

Hello Mike, I've been away for a while due to problems with my computer and although we tried to get the old one fixed, we ended up having to buy a new one which was delivered this morning. I've really missed all of you and hope I don't have any more problems from now on. I guess I'll have some catching up to do before I find out how everybody's getting on and you are the first one in my list. I'm very sorry to hear about all the trouble you've had recovering from your surgery but by what I've read, it seems that the worst has been overcome, am I right? Anyway, I also recall trying to get the nurse's attention on one occasion while I was in ICU, I can't remember clearly why though. Well, I was nearly in tears when I decided to take a deep breath and start all over again. I remember saying to myself that if I kept on getting anxious my heart rate would go up and they would end up keeping me there longer. I hope that you're getting better by the minute now and by the way, I should be back in the chat room again this Sunday if it's still going. Hope to hear from you soon.

Debora from Brazil

 

[Georgia]

Mike, I'm so sorry you've had such a divil of a time. I do hope you're walking, breathing and napping so you can beat this.

You're pretty much over the roughest patches now. We'll be watching for more posts from you as you feel better and better.

 

[Marge]

I've been away for a while, so just got around to reading your report. My goodness, Mike, you've been through an AWFUL LOT.

I hope things get better. I am afraid that I may have been one of the ones who told you you would probably breeze through this.

PS -- I realize more & more how lucky I was with my surgery and recovery. I was particularly shocked to read that it was so hard for you to get attention in ICU. Where I was, they had a nurse present IN THE CUBICLE with me continuously.