what do we think of this?

[katie1234]

Hi there,

I haven't posted in a long time, mainly because my mom has been doing pretty well and I have just been checking in now and then. She has hit another bump though, and I am wondering what people think of this:

So my mom (background: radiated heart disease, had AVR, MVR, a CABG, and a PFO closure on 7/30/08) had a pretty tough early recovery, but since around Thanksgiving she has been doing really really well. She wnet back to work in January and has been loving it.

The thing is, she has been battling fluid build-up in her abdomen, legs, pleura, and I think her pericardium ever since the surgery, and lately it has been building up at a much higher rate. She has been on prednisone for the past 5 months to battle Dressler's syndrome, which the docs said was the likely cause of all this fluid. She has also been on daily or every-other-day doses of Demedex (diuretic). With all of that, the fluid is still crazy. So crazy, in fact, that she has been having really bad SOB and a feeling of drowning. She has been getting chest x-rays every couple of weeks, and the last one showed that her effusions are creeping up to the half-lung mark. Her doc ruled out an infection, her cardio has ordered a ton of tests (inlcuing a full pulmonary work-up). The pulmonologist wants to do a tap on Tues, which, although it stinks to have to have a procedure, I am kind of glad of because I have read from a lot of you that it really does provide relief from that awful drowning feeling.

I guess my question is, what is this? Is it CHF? The cardio and everyone said her valves are working perfectly. They are doing another echo on Monday, so maybe that will tell us. I secretly fear that she has chronic constrictive pericarditis.

Thanks for listening you wonderful valve kids,
Katie

 

[Ross]

Hon I don't think that's CHF though it could be a part. Prednisone makes a person huge. The things going on with her very much rival whats going on with me. Pulmonary Hemosiderosis. It's not very common, but they're learning more and more. To me, it sounds like more of a lung issue causing other problems as well. She needs the Doctors on this for sure.

 

[katie1234]

Ross- are there any kinds of tests for Pulmonary Hemosiderosis? I think her cardio is sort of hinting that she may have restrictive pericarditis. All of her symptoms seem to fit with it- the pleural effusions, the dry cough, the SOB, fatigue, fluid retention. But I don't know- from what I have read, those symptoms could be lots of things. At the same time, it's hard to know what's "normal" recovery and what isn't, especially since she has so much radiation damage from her cancer treatment in the 1970s and her surgery was 8.5 months ago. Oh, and I was wondering, why has she not been placed on a strict sodium-restricted diet since she is retaining so much fluid? I hate to think that the docs aren't on top of this, since I know she's a tricky case. Thanks for listening guys.

 

[ALCapshaw2]

Does she have a Primary Care Physician?

I've not seen any mention of a PCP.
It is the responsibility of a PCP to manage all the specialists, etc.
A good INTERNIST could be helpful.

'AL Capshaw'

 

[Ross]

For all I know it could be restrictive pericarditis. As you said, there are so many things it might be. I'm jut saying what you described is very much the samething I go through with the Hemosideosis. Another reason I hate pains in the chest, you can't tell what's what.

 

[Curtsmum]

Hi Katie, sending hugs and prayers to you and your mum, hope you get the answers from the echo on Monday. Best wishes.

 

[katie1234]

Thanks guys. She has the echo today and the thoracentesis tomorrow morning, and then she goes to the cardio next monday (I'm going to go too, with my list of questions). Al- her PCP is involved and is in good communication with her cardio and pulmonologist- he just seems to sort of leave it to them in terms of her heart and lungs. He pretty much rules out infections and stuff, but other than that, the specialists seem to be more in charge these days. Ross- I will definitely ask about pulmonary hemosiderosis tomorrow when she gets the pleural tap. And yes, she has gained about 15 lbs on the prednisone (for her, it's a big amount, since she is tiny (5'2) and normally about 105). It doesn't seem to be doing much in terms of helping, so maybe they can get her off of it after they figure out what's wrong.
Thanks again,
Katie

 

[katie1234]

Just wanted to let you know that my mom's thoracentesis went well this morning. She's is back home grading papers (she's a teacher) and resting. The doc was kind of disappointed that he only got about 3/4 of a liter out, because he said there is a good amount of fluid still in there, but it just wasn't coming out. He said she should feel an improvement in her breathing by tomorrow, he just wasn't sure how much of an improvement. He feels this is all related to her heart. I asked about constrictive pericarditis, and he said that he and the cardio are looking into it, but are hoping that this is a flare-up of her Dressler's syndrome. We should know more when we go to the cardio on monday and get the results of the echo from yesterday.
Guess I should go back to work now,
Katie

 

[Superbob]

Katie,

Glad to hear the procedure went well -- hope the docs are headed toward finding the problem and clearing it up. Sending best wishes/prayers for your mom. Sounds like she is a dedicated teacher, to be back so quickly to grading papers.

 

[WayneGM]

Glad to hear it went well this morning. Best wishes to your Mom. I hope you get the answers you need on Monday, and then all is resolved soon.

 

[katie1234]

went to cardio yesterday

went to cardio yesterday

I went with my mom to the cardio yesterday, and I think overall it was a good visit. The deal seems to be that my mom has a really bad case of Dressler's syndrome (postcardiotomy pericarditis) and that she may be steroid-hooked. The fluid from her thoracentesis showed a lot of inflammatory cells, and her SED rate was in the 30s.

In addition, she has radiated lung disease and radiated heart disease and a radiated lymphatic system, and this is making it extra-hard for her body to deal with the abnormal immune response she is having to the surgery.

She has mild pulmonary hypertension now (the number he gave was 40, but I'm not totally sure what that refers to) and this is likely a result of the combo of her radiation damage, her Dressler's, and the fact that her remaining native valves (pulmonary and tricuspid) are not totally normal, but not in the range where anyone thinks they need replacement. I am reminding myself now that before the surgery, they told us that it might not fix everything that was wrong with her, and so it is really becoming apparent now that this is the way it turned out. The good news is that with very vigilant management of her Dressler's and her PH, she should be able to have a very good quality of life. She is going to the pulmonologist tomorrow, and he is an expert in PH.

I asked about the status of her pericardium, as my concern is that it is restrictively thickened/fibrotic, and he said that he is convinced that right now, she doesn't have constrictive pericarditis. He did say that she has pretty much every risk factor for it, and her echo did show some thickening of the pericardium, so he is going to be extremely vigilant in making sure that if it does develop, they can take steps to deal with it. I was really glad that he seemed to be so knowledgeable about it and what to look for (I understand it is an extremely difficult thing to diagnose).

Her liver and her kidneys are all functioning perfectly, so that was great news. I guess basically she just isn't going to get a clean bill of health ever, and I feel really bad about that. BUT, I am focusing on the positive, and more importantly, so is she. I give her, and all of you who have to deal with this stuff, so much credit for being so strong in the face of these health problems.

Thanks,
Katie