Repeat Surgery Recovery

[ALCapshaw2]

OK all you multiple OHS patients, here's your chance to tell us how your later recovery or recoveries went.

How did your repeat surgery recovery progress during the first 3 months?
How long before you felt you achieved your full surgical benefit?
Any permanent or perpetual post-surgical 'issues'?
What kind of shape were you in when you had your repeat surgery?

I'm looking at OHS #3 (MVR) in the not too distant future, following CABG and then (later), AVR.

Are there any other Radiation Damaged Patients who have undergone multiple surgeries?

'AL'

 

[geebee]

From a recovery standpoint, the second OHS was better than the first because I never fully recovered from my first. For some reason I built up scar tissue very quickly after my first OHS and it starting causing the valve to stick. I spent almost 2 years trying to convince the doctors that something was very wrong. Then, of course, when the problem was finally diagnosed, I had emergency OHS. It took me about 6 months to fully recover from my second.

After my third OHS, I developed a-fib which became an on again off again kind of problem for 10 years. About 3 years ago, the a-fib came and never went away. The opinion is that the a-fib is due to the trauma the atrium has gone through with the 3 surgeries. A-fib aside, I feel it took a good year to fully recover from my third OHS although I was back to work and doing most things at around 3 months post-op. I was not in great shape before my third OHS because I was battling a lot of TIAs and valve sticking so my activity level was minimal.

I hope this helps some. Obviously, the third surgery was necessary and worked out fine for me as I am still alive. I wish you all the best.

 

[lcwhitney]

In My Second Surgery I Had Big Problems The Homografti Received In My First Surgery Fell Apart In The Doc's Hand. I Also Had To Have 21 Ubits Of Blood After The Valve Fell Apart. Once I Was Finally In A Room I Had A Stroke Caused By A Clot That Had Formed On My Mechanical Valve While I Was Off My Coumadin Before My Surgery. I Collapsed And Stopped Breathing In My Mother's Arms. After All That I Can Say That Repeat Surgeries Are Always Very Risky.


Lettitia

 

[Kathleen]

I have to really think back and am not to sure on some of the answers I can post about. My first surgery was to do a mitral repair which was done and they noted the aortic had insufficiency at the time but did not warrant repair or replacement. Fast forward 5 years and the aortic was ready for replacement as was the mitral. It needed to be done quickly so within a week I was in surgery again. My main issue before surgery was terrific back pain behind the heart. When the surgeon got into the chest he found my heart had grown to my backbone and top of the ribcage. The surgery lasted over 12 hours and was close to being unsuccessful. When they cut the heart away from the scar tissue and bone I bled uncontrolably and they had to cut the main artery in my groin to use the machine to replace the blood loss with my own blood since the transfusions were not fast enough. All in all it was pretty terrible. They brought my family in before they cleaned me up and it is still etched in their minds. I was on the vent for three days after surgery. They worked and worked to get me off and finally flew in a special pulmonologist named Katherine. I only remember her handbag and thinking how very nice it was. She worked on me and finally I could be weaned. That surgery was and extremely difficult to recover from. I doubt that I still have. I had many bouts of pericarditis and still to this day experince those. After that I went on to have two more open heart surgeries neither relating to the valves. I also had lung surgery using and incision on my side and then up my back. That one proved to be the most painful of all. One never knows how repeat surgeries will go. Recovery---not yet and it has been over 21 years.

 

[Lynlw]

See Al this is why you should be glad I post. Now First I know we are blessed and not everyone does as well as Justin, on the other hand I know many kids/young adults that have had 3 or more heart surgeries and doing great, (even if recovery was tricky HI Janet) Justin had his first 2 surgeries before he was 2, his 2nd was tough, but that was only because they pretty much rebuilt his heart, with lots of dacron, gortex and even parts of hiw own heart and pericardial tissue,was home in a week, but then started months of pericardial effusions, which was even tougher when he got RSV on top of it.so was in and out of CHOP for the next 6 months
when he was 10 (98)he had his conduit cut and patched and got a pacemaker because during the cath the day before that showed he need surgery the next day, he went into complete heart block, He was in good shape. just finished soccer season and started basketball, He told his doc he had a band concert next week and he practiced for months and wanted to play in it so they better have him home ) He got home the day before the concert and played his drums, you should have seen the tears in other parents eyes when they saw him. Some one gave us Eagle Tix and we went to the game 10 days post op, his recovery was great, the hardest part for him was waiting to do things until he was allowed, since he felt so good physically
then when he was 15 his pacer that was in his abdomen was malfunctioning so had to come out that was just a tiny surgery we don't really count.
his last (4th)OHS was May 05,he was in really good shape,but after his appt in Jan he was restrictedfrom all activitieis, because the pressure gradient in his pulm artery was in the high 90's, he had a cath but it didn't help so basically could only go to school no gymn, and come home until the surgery, he origonally was schedualled for the conduit (part of pulm artery) replacement and get pulm valve in the beginning of March, but things happend and it wasn't until may, so I wasn't sure if the no activities for 5 months was going to make his recovery harder, but it didn't, He had his surgery on a Monday, they hardest part for the surgeon was opening his chest, because we knew his heart was fused to his sternum w/ scar, but we had picked a very good surgeon, w/ alot of exprience with both children and adults w/ CHDs, IMO surgeons that operate on kids/adults with CHD probably have the most experience on multiple redos, since many of the CHDs need at least a series of 2 or 3 surgeries to start with and then some (like Justin) will continue to need more thruought their lives.
Anyway surgery was on monday was in CCU around 5pm, up sitting in a chair the next morning then moved to the floor around noon on Tuesday (they needed a bed in CCU an he was the closest to going to the floor, so he went a little earlier than planned.) He was home on Friday, he had a small issue of pericardial effusion,and a small infection in his inision, but we caught it very quickly since we recognised the symptons and got on top of it early w/ antibiotics and motrin,(and the docs were also better at treating it than 15 years earlier, i just rechecked his page, (feel free to read the history starting may 2nd 05, if you want to see how he felt when ect)
at one month post op he felt better than he did in years, he didn't even realize just how tired ect he always was until then. that summer by about 2 months he was doig everything including surfing. the first big long thing he did was about 7 weeks post op he went to the live 8 concert in phil, which was very hot, crowded and long and he did great.
Sorry I got a little long here (again lol) Lyn

 

[John & Joann]

I will post for Joann. 15 days in the hospital. At least 3 months to get somewhat back to normal. Probably 1 year for a total recovery.

A few issues that will help you to identify with her situation:
1. 12 hr. surgery
2. 6 hrs. on the pump
3. 3 bypass and 2 valves, allergic to Heaperin
4. Not real strong
5. 60 years old
6. Discouraged

7. Living with me!!!!

Hope that this helps.

 

[Johnny Stephens]

I can see I need to come around more often. Al, I wasn't aware you were up against it again - I am reading the replies with great interest. It seems like the area of focus in your surgeries to date has been in different parts of the heart - intuitively it seems like repeated work on the same valve would be a lot worse, but we all know this radiation thing is a bigger deal than we were expecting 20+ years ago.

Best -

 

[hensylee]

Hey, look, y'all. There's Johnny! I told you he'd be back. Hey there, Johnny. Welcome home and Merry Christmas.

Al, this is a good thread for those in the waiting room.

cabg X 4:

hospitalized 6 days
no problems
in fairly good physical health at time of surgery
took nearly a year for full recovery
I was 66
take meds (atenolol 25mg2/day), bp med(1 tab/day), zetia (one/day)

 

[brd]

Another approach

Another approach

Hi Al, I'm still in the waiting room post radiation with aortic damage. My MV is a little damaged also but my Ma General Surgeon, Dr Vlahakas, has said that he will replace the AV via sternotomy and plan if the MV needs replacing to use a lateral approach. He feels this avoids some of the problems of multiple surgeries in post radiation patients.

Please PM me if you want more details on this or on Dr V.

Barbara

 

[ALCapshaw2]

I can see I need to come around more often. Al, I wasn't aware you were up against it again - I am reading the replies with great interest. It seems like the area of focus in your surgeries to date has been in different parts of the heart - intuitively it seems like repeated work on the same valve would be a lot worse, but we all know this radiation thing is a bigger deal than we were expecting 20+ years ago.

Best -

Johnny - Thanks for the reply Johnny. Good to hear from you again.

I sent you an e-mail through VR.com and also to the last address I have for you but NO response. Did you receive either of them?

Barbara - Thanks for you input also. Interesting topic for discussion...

'AL Capshaw'

 

[Nan]

Hi Al,

Sorry your are looking at OHS #3.

I can't respond to most of your concerns as I am only 2 weeks out from my second OHS. But the one thing I can tell you so far is that I think the recovery is slower than my first. And one other thing....I think I have less "pump head" this time than I did with my first OHS.

Good luck to you. Will be looking forward to your posts.