Pericarditis & Pericardiectomy pt. 6

nyonuk said...

Hi Folks;

I've recently been diagnosed with constrictive pericarditis and am due to have a pericardiectomy (pending another Echo and Cardiac MRI) here in the UK within the next 3 months at the Heart Hospital in London. I have to be honest, from reading previous posts my symptoms seem a lot less than others. I do get SOB with any exercise etc. and have quite a lot of fluid retention particularly in my legs and ankles. It would be interesting to hear from others as to what to expect from the op. I would especially like to hear from anyone with a UK perspective on the treatment etc. I've been told I'm going to a world class hospital with some of the most experienced staff in the world.

Regards,

Al.

 

Hi everyone! we have a new member who posted under the thread "New Member".  I have copied his post here in hopes that you all may have some advice and suggestions for him.  Thank you all so much  Take care !~ Elisha

Thanks Nan;

Sorry forgot to add the personal bits. I'm 38 years old, have 3 daughters 8,5 and 2 years old. I have a pre-op day on the 26th Sept. They say it will be up to six weeks after that I will be having surgery. My surgeon told me that up until 5 years ago it was 50/50 as to the survivability of the operation, but better case selection has led to him not 'losing' a patient in the last 5 years. He's confident at present that I will be able to have the op. Although I do still need to have the tests to check my suitability. To be honest, I don't want to think about the prospects if they decide they cannot operate. Hopefully I'll be on the mend by Christmas!

Al.

Thanks. I have no idea how many pericardiectomies my surgeon has done. From the way he spoke last time I saw him, quite a few I think. I've got my pre-admission day this Tuesday, although no date has yet been set for the op. I still have an MRI scan to attend on the 6th of October. They will decide when once they have the results from that. How long were you in hospital for? Where was the op carried out? Why do you think your surgeon said sometimes he wished he hadn't bothered? Thanks for your reply.

Regards,

Al.

Thanks for that. I guess the less you remember of ITU etc. the better. I've had two major operations as a child and spent time in ITU both times. That was around 25 years ago now though. They took us round ITU on Tuesday. A bit daunting, but I guess better to know what you are headed for. They seem extremely competent where I'm going, can't complain about the staff. Very knowledgeable and aware of the anxiety we must go through. I live in Wiltshire and was referred to the Royal Free Hampstead initially from the Royal United Hospital in Bath as they thought I may have Pulmonary Hypertension initially. They then referred me to UCLH and finally onto The Heart Hospital. Cost a bomb so far in travelling / overnight expenses. Thankfully my employer is very understanding and I'm still getting sick pay. It feels like it's taken forever to get to this point and I'll be glad when I'm on the other side and recovering. I'll remember your point about the cushion. I have dim memories of Physio-terrorists from my ops as a child. I have to be honest I do get a lot of gastro type problems and have had for some time. Occasional bouts of vomiting and flipping between being v. loose to constipation from one day to the next. I'm guessing it's all related! I'll keep you posted!

Hi Al...Ernesto...good to catch up on you both

Al...good luck to you as you decide and prepare for upcoming surgery.  I agree with Ernesto...a few weeks of pain is totally worth it to be free from heart failure related problems.  I was in the hospital 5 days...was excited to leave on that 5th day.  We had to stay overnight in Rochester that night because of an ice storm but went home the next day.  I couldn't fasten my own seatbelt for a week.  It all goes so fast.  I'm still so thankful that the surgery took away the symptoms.  I'll be thinking of you...best wishes!

Kenneth and Elvina...how are things going?

How are the rest of the group doing?

Later..Nan

Ken...

I've been thinking of you two. So happy she is home. I will pray that the recovery gets better every day! Stay in touch!

Nan

Hi Mike

I did not have shoulder pain but I did have the night sweats.  Relief from the steroids would make you think of inflammation of some kind.  Can you get back in to your Cardiologist? 

Nan

Hello everyone.  I have a question I hope someone can help me with.  Does anyone get strong back pains when they attempt to taper from prednisone.  Everytime I get to 5mg, my upper back and neck really start to hurt and it becomes unbareable.  I've gone to the ER 3 times in the last month for it, but everytime I go the doctors can't explain it so they classify it as recurrent pericarditis.  I developed pericarditis last April and was put on a 3 month treatment of prednisone for it.  I am now trying to taper, but this back pain is a major stumbling block.  When I first tried tapering without colchicine, the pain was strong in the chest and my echoes would show fluid in the pericardium.  Now, every since I was put on colchicine, when I get the pain in the back and they echo my heart, there is not enough fluid to warrant such pains.  So, good news is that my heart is fine.   Bad news is tht my back pain is getting worse. 

I've been check for compression fractures caused by being on prednisone for too long, but the test said my bones are just fine.  I am a 25 year old male, and have no history of prior illness.  If anyone could offer some guidance, I would greatly appreciate it.

-Ben

To April74:

I am sorry to hear about your husband's condition.  I've been told the same thing about the EKG.  I am a pilot for the military, and I am fighting very hard to keep my flight status.  Like him, I will have an abnormal EKG the rest of my life.

When I had my first episode of pericarditis, my doctors put me on prednsione.  7 months later, every time I go below 10mg, I have the same pain of pericarditis but no fluid.  My doctors have run all kinds of tests, looking for lupus, cancer, etc.  You name it, they looked for it.  My flight surgeon believes I have recurrent pericarditis, but my cardiologist believes I am suffering from prednisone withdrawal.  I am telling you this because make sure that your husband is checked for all possible diseases, if possible.  There may be an underlying reason for the pain, but there may not be.  But it is important to check all possible scenarios.  Also, there is a lot of research about pericarditis and how to treat it.  Make sure that you and your husband know as much as possible.  I once went to the ER for a relapse of pericarditis and when I told the ER doctor my cardiologist was thinking about using colchicine for me, the ER doctor looked at me as if I was crazy and figured I didn't know what I was talking about.  Not everyone is an expert on pericarditis.   

For your husband, I know the pain sucks.  Colchicine takes time, and only in the last couple of years has it come onto the scene for his condition.  Prednisone would probably help with the pain, but trust me, it is not worth it.  This stuff has probably sacked my flight career and maybe my military career as well.  If he can tough it out and doesn't get any fluid on his heart, I would try it. 

If it is any help, I sometimes like the read the book of Job from the Bible when I get into some tough times with the pain.  It helps to put things in perspective.  I will pray for your husband and you.  Good luck.

April74:

Rotorheads rule! 

Your husband is entitled to a second opinion, no matter what your flight surgeon thinks.  Tricare is set up to provide second opinions on request.  If your flight surgeon is giving your husband a hard time or is not helping, I would highly suggest your husband going to his department head or the XO and raising a red flag.  Further testing will not jeopardize your husband's flying career unless they find something seriously wrong.  And besides, there are waivers out there for pericarditis.

I was tested specifically for most forms of lupus, cancer, and HIV.  My blood tests demonstrated I had developed Epstein-Barr antibodies, which my doctors theorize caused my viral pericarditis.  What do they think caused your husbands?  Believe it or not, pericarditis has a higher rate of occurence in the avaition community than any other community in the Navy.  Weird huh?

From experience, your flight surgeon will not be able to help you deal with pericarditis.  Even though it is not rare, it is not common, and therefore most flight surgeons have little, if any real experience with the condition.  Don't get me wrong though - some flight surgeons are really awesome.  But its hard to find the ones that know when to be a doctor and when to be an administrator.  I would rely on the opinions of the cardiologist, if possible.  You can request a second opinion, however.  If you do this, try to see not just a cardiologist but also other specialists as well.

I would like to say more about this but I think it would be disrespectful to those who have done a good job with my treatment.  I can't imagine how I would have dealt with this outside the Navy.  There is no way I could have handled the costs.  However, I know how your husband feels, and I know it sucks to be not only in serious pain, but also feel like no one can help you.  If your husband would like to talk to me, my email address is [email protected].  I would be very happy to provide any details on pericarditis I have researched or how to deal with flight surgeons who are not exactly helpful. 

-Ben

Eukard:

Thanks for the info.  I found those articles and did the same thing you did with my doctors.  Most of the them were pretty open-minded, but I had a few who didn't really pay attention.  More than likely because I'm a pilot, not a doctor.  A lot of the research I've found has only come out in the last couple of years, so a lot of doctors are not up-to-date on the lastest findings and research. 

There is one issue though I cannot find an answer to.  How can you tell the difference between recurrent pericarditis and prednisone withdrawal pain? A few times in the past, when I was tapering from prednisone (below 10mg), I started having similiar pain to pericarditis but no other evidence to support pericarditis (EKG, echo, etc).  However, my flight surgeon has labeled as recurrent pericarditis.  

If anyone has any ideas about this or has had similiar problems tapering off prednisone please let me know. 

-Ben  

Ben, Raul,

My pericarditis was probably caused by a virus. One theory I've read is that even after the body fights off the virus, our immune system can be fooled into thinking that the virus is still present in the pericardium and continues to try to battle a non-existent virus which produces inflammation of the tissue and the symptoms which result from the inflammation.

I had initial symptoms of discomfort and pressure in my chest rather than sharp pain. I also had swelling in my abdomen and legs. An echo found fluid in my pericardum. The fluid went away but my symptoms stayed. I was treated with a series of NSAIDs - indomethacin, ibuprofen, sulindac, relafen, disalcid. None of these helped. I also took colchicine for about 2 years. My cardiologist referred me to a rheumatologist who tried methotrexate and then azathioprine which are powerful immunosuppressant drugs. The only thing which relieved my symptoms was high dose prednisone - 60 mg a day. But when I tried to taper off prednisone, my symptoms came back which makes sense since what prednisone does is suppress inflammation. The trouble is that long term use of prednisnoe can produce really bad side effects.

I had a series of the usual tests - EKG, echo, CT, MRI. Some of these showed pericardial constriction, some didn't. I think one of the things that makes treating pericarditis so challenging to doctors is that these tests can be imprecise. I finally had a right heart catheterization which confirmed that I had constrictive pericarditis and I had a pericardiectomy last summer. I did not look forward to surgery but everything went well and I feel great again.

The reason I mentioned the articles on IV immunoglobulin is that the researchers reported that they were able to cure several patients with recurrent pericarditis who were "steroid dependent" as I was. I had several courses of IV immunoglobulin which unfortunately didn't help me. I think that at the point I had that therapy, my pericardium had already become thickened irreversibly.

I read about TB pericarditis in the Maisch article. I would guess the primary thing would be for your doctors to determine if a TB infection was active and then treat that. The risk with pericarditis which becomes chronic is that the pericardium can eventually become scarred and inflexible and constrictive as in my case.


eukard