damn it

[starburstcoral]

Hi Everyone
Eric has had this dry cough for about 5 weeks now. Some effusion fluid in his chest cavity that they said would resolve. 2 days ago he spiked a fever 101. Last night they did an echo, took blood cultures(not back yet). The echo shows leaking and infection. Eric had the biocore pig valve- of which he has had concerns that he may have had an allergic reaction to since he is allergic to formeldahyde and they transport it in it. I am so frustrated. We were vacationing in Charleston so now we are at a hospital in Charleston. Not sure what to do, but before going back to Cleveland where we had it done I'd like to get another opinion by a reputable dr/surgeon who does a lot of reops on infections. Any one have some advice?
Sad,
Mary

 

[kfay]

Mary, I'm so, so sorry this is happening. Luckily for you guys, I think the hospital there is pretty decent. One of my neighbor's daughter is being treated there for a very rare cancer, and they consulted with Johns Hopkins and they said that Charleston was doing the same that they would do. So far, she has had great results.

I too had a infection scare at 6 weeks post op and was on the phone with the Mayo clinic immediately. I had every intention of going there if my valve (the same one your husband has) showed any sign of infection or problems. They put me in the hospital here in Charlotte and threw every antibiotic they had at me. Luckily, I was looking much better in just 36 hours. My cultures came back ok and my valve was fine. Hopefully, this will be the case with your husband. If not, they will get it under control and then see what if any damage has been done. I have a great ID Dr. here who took care of me if you want his name when you get home. He's here in town so you'd have to drive down from the lake area. As far as surgeon's who have special experience dealing with this, I don't know that I've heard of any. When I checked into the hospital with my infection, I think the local surgeon at Sanger was licking his chops thinking he was going to get to re-do the Mayo's work, but he didn't know that would have never happened! The main thing is to hopefully get the infection completely cleared before any re-op has to be done, but, again, hopefully, this won't be necessary.

Just curious, did he mention his allergy before surgery and what was their response?


Let me know if I can help you in any way.


Kim

 

[Nancy]

Mary-

I am so sorry that this has happened, and sorrier that it happened while you are on vacation. There is nothing worse than being away from your home and familiar doctors and hospitals when illness strikes like this.

I hope they can get things under control so you have some other options, and that it buys enough time to get you all back home and under the care of his regular doctors. And, of course, I certainly hope a reop is not in the picture, ever.

 

[starburstcoral]

is it true that PVE has a 50% mortality rate?

is it true that PVE has a 50% mortality rate?

yes the name would be great in charlotte. They did nothing about the response to his allergy basically ignored it and told us it was not possible. I don't believe that. But we were hopeful. The echo is showing a leak and a growth but we are waiting for the doctors to come back in and give us more information and their treatment plan. Is it true that Prosthetic valve endocarditis has a 50% mortality rate? that is what i just read!

Mary, I'm so, so sorry this is happening. Luckily for you guys, I think the hospital there is pretty decent. One of my neighbor's daughter is being treated there for a very rare cancer, and they consulted with Johns Hopkins and they said that Charleston was doing the same that they would do. So far, she has had great results.

I too had a infection scare at 6 weeks post op and was on the phone with the Mayo clinic immediately. I had every intention of going there if my valve (the same one your husband has) showed any sign of infection or problems. They put me in the hospital here in Charlotte and threw every antibiotic they had at me. Luckily, I was looking much better in just 36 hours. My cultures came back ok and my valve was fine. Hopefully, this will be the case with your husband. If not, they will get it under control and then see what if any damage has been done. I have a great ID Dr. here who took care of me if you want his name when you get home. He's here in town so you'd have to drive down from the lake area. As far as surgeon's who have special experience dealing with this, I don't know that I've heard of any. When I checked into the hospital with my infection, I think the local surgeon at Sanger was licking his chops thinking he was going to get to re-do the Mayo's work, but he didn't know that would have never happened! The main thing is to hopefully get the infection completely cleared before any re-op has to be done, but, again, hopefully, this won't be necessary.

Just curious, did he mention his allergy before surgery and what was their response?


Let me know if I can help you in any way.


Kim

 

[Nancy]

Let me tell you a little story.

My husband had his first valve replacement (aortic) when that operation was not at all popular. It was in its infancy. There were not many choices of valves in those days. He was scheduled for a pig valve replacement, but he was tested for possible allergies, and like your husband, there were allergy problems with the pig valve. So they implanted a Bjork-Shiley mechanical valve, not the earliest model, but not far from it. It was a miracle for him. It was big and clunky by today's standards, but that big old aortic valve and the subsequent St, Jude's mitral valve that he got later were still beating away till the last second of his life, when he passed away at age 75 from multiple organ failure. He did not die of valve failure.

So, if you were told that allergies to pig valves were impossible, that is not the truth.

 

[Lynlw]

Hi, My son(who has had quite a few heart surgeries) had BE when he was 11 and also had a sternal and under sternum around heart infection 10 days after his last surgery (when he was 19) that needed surgery to clean it up/debrise it had 6 weeks of antibiotics. So I know how scarey and frustrating it can be. The FIRST Advice I would give is don't worry about what you read as far as mortality rates, Almost EVERY thing I read about Sternal osteomyelitis and mediastinits (the name of the post of infections) started with the sentence "has a very high mortality rate", I almost made myself sick worrying about it. I think alot of those stats are based on people much older and not as relatively healthy (well at least that is what I told me, and that made me feel somewhat better) I don't know of any surgeons who have alot of experience dealing with infections, actually when Justin needed his infection surgery, his surgeon (that we picked that hospital for) was out of town so we had another surgeon. I also know of some people who travelled far for their surgery and were home when their infection showed up so were treated/had surgery at the local hospital and did well. As Kim said the important thing is to find out what the infection is and get the right antibiotics to get rid of it.

PS I wanted to add when Justin had BE, they put him on 2 IVantibiotics for 6 weeks, luckily he didn't have ny perm damge and didn't need surgery.

 

[vtbecca]

I agree with trying not to worry yourself w/ statistics. They are truly just numbers. I don't know why they are brushing off the allergy thing. Much less minor issue but my dentist had a patient allergic to gold. She told one dentist NOT to put a gold crown on but he said no one was allergic to gold and put it on. Within hours she had swelling and itching, and was very uncomfortable. The new dentist took it out immediately and she got better. Hmm, seems she knew best. You know best in your situation. If it is an allergy the solution will probably be to switch it out with another. Not so simple but it may cause drastic improvement. Remember to trust yourself and if you feel uneasy move on to another doctor or hospital. I hope this can get resolved quickly and they can find some antibiotics that will work fast!

Becca

 

[Nancy]

I hope your husband is under the care of an Infectious Disease specialist. That is vitally important. Joe had a blood bourne nosocomial (caught in the hospital) Klebsiella infection and is was thought he had developed endocarditis. However, it did not get that far. The ID doctor took over his case, put him on the correct antibiotics and he had to stay on them for something like 2-3 months. Then they tested him again to make sure there were no traces of the infection. That man saved Joe's life.

 

[starburstcoral]

I hope your husband is under the care of an Infectious Disease specialist. That is vitally important. Joe had a blood bourne nosocomial (caught in the hospital) Klebsiella infection and is was thought he had developed endocarditis. However, it did not get that far. The ID doctor took over his case, put him on the correct antibiotics and he had to stay on them for something like 2-3 months. Then they tested him again to make sure there were no traces of the infection. That man saved Joe's life.

No he is not but I will make sure we find that person, thanks for the info

 

[starburstcoral]

How did they test for the allergy for the pig valve? Do you remember? They said that the cell genetic id is stripped from the pig or cow valve, and that the cells from Eric's body would eventually form on the valve. If he needs a reop I just want to really put this to rest and be sure. this is the first i have heard of anyone with this allergy, thanks

 

[Nancy]

I don't know how they tested the allergy, it was a very long time ago, 34 or so years ago.

 

[ks1490]

Hi - I wanted to drop a line because I recall corresponding with you just before the surgery, I believe your husband's was 2 days after mine. Anyway, best wishes to you and your husband for his speedy recovery. I had a cough for the first couple of weeks and I did have a bout with pericardial effusion which they drained in week 3. The cough has since gone away and I haven't had any other issues. I can understand your frustration since the pericarial effusion threw me for a loop when it happened. Anyway, you'll both be in my thoughts.

 

[hall]

Sorry to hear this. I agree with Nancy. Get an infectious disease doctor asap. That is awful when you are away from home. Prayers for you all.

 

[Ross]

Never listen to statistics!

It went like this for me, I had a 5% chance of making it through surgery. I had a 0% of making it if they did nothing. When it comes down to it, you do what you have to, to stay alive.

 

[Superbob]

I don't have expertise or experience with this to offer, but I did want to offer my best wishes for resolution of this. So sorry this happened on your vacation. Charleston is a great city so I hope it has the medical help needed until you can get back to your regular doctors.

 

[ARGreenMN]

I echo Superbob - don't know anything about that situation - but send my best wishes. And remember, we live in a great era - they do amazing things these days. My mother-in-law was diagnosed with stage 4 Lymphoma (which we all understood was basically a death sentence) about 15 years ago. She's still here today and doing very well - went into complete remission.

 

[Maryka]

It sounds like you have a good medical situation where you are visiting. The only thing I can add is that, while trying to find a good hospital in NC for my hip replacement, I discovered that Duke Medical Center in Raleigh-Durhan was given one of the highest ratings, overall/nationwide, by US News magazine. (I then went to the the Duke webpage and looked up the orthopedic section and got doctors names that way. You could do that for the cardiology department if you want to see who is part of the faculty. Faculty surgeons are usually the best around.)

 

[Lily]

Wow Mary; I'm sorry to read this and am, like the others, hoping for the best.

 

[starburstcoral]

Great update on Eric. He was released today. The dr who came in misinformed us - he really does not have an infection or at least one that they can find, but he does have a leak. The leak seems OK (trivial) and his heart function is normal. What they thought was a growth is not. The blood cultures have come back negative so far. His fever finally went down and his white blood cell counts are now going down. They think he may have an upper respitory infection. Which is great news and we are glad to hear that. The cough is not any better but that seems like nothing to really worry about, they said when the pleural effusion dissipates the cough should go away- so he is back to doing the spirometer most of the day. We are heading home tomorrow and will follow up w/ cardio in charlotte. I feel like we are on a roller coaster and hopefully the ride is going to stop soon. Thank you for your thoughts, and caring it really means a lot and this is the place that I turn to for the best help in these situations. I'm so appreciative of this site. Mary

 

[Lynlw]

WOW GREAT News> You must be so relieved. Do you have any more vacation to relax and recover or do you have to go home?
Is he on any meds that can cause a dry cough?