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Pericarditis & Pericardiectomy- CLOSED THREAD

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Posted 7/31/2009 11:22 PM (GMT 0)
Hi Spangles! I am glad you are feeling better since your surgery! That seems to be the consensus when a pericardectomy is called for! I appreciate the well wishes!

Sometimes I can hardly believe that everybody else doesn't have pain when they breathe, cough, or sneeze. And that they don't feel like they aged 30 years following the surgery. It is mind boggling! But this is the case with most others, right?
Posted 8/1/2009 8:49 AM (GMT 0)
Hi Heartaches,

Yes I do still have discomfort when I cough sneeze or even breath really deeply. However I feel well in myself. Before surgery I felt that my heart had a building brick on top of it and that it could not beat properly which took away all of my energy. What were your symptoms before surgery? The surgery for me has been well worth it.

Spangles x
Posted 8/2/2009 3:38 PM (GMT 0)
Hi Way To Go Spangles, It is SO good to hear that you are feeling better, enjoying life and happy to have got through the op. etc. Keep having fun.  Sherwood X
Posted 8/2/2009 6:12 PM (GMT 0)
Hi Sherwood and thanks for your well wishes as ever. Next on the agenda is an 80's pop festival thats going to be held locally with people like Paul young ,Midge Ure, Toya and oh do you remember Rick Astley Can't wait!

Spangles x
Posted 8/9/2009 2:27 AM (GMT 0)
Hi, I have been reading this forum for the last half year. I have never posted but have learned much. Ive had pericarditis for 2 1/2 years. Went through the prednisone thing, kept coming back. On ibuprofen, colchichine, protonix and sometime lortab. I was doing good for about a year... and one flare-up after another. Its driving me crazy! No evidence of calcification but I do get effusions and have some of the sack stuck together. I have 2 cardiologists. 1 thinks I should stay the course and the other wants to strip the pericardium. (pericardiectomy) Says Ive suffered long enough. I saw the surgeon and he wants to do it. (He does an averg. of 5 a year) Both opinions are so far apart, but I'm sick of this pain all the time. It is a hard decision as I have a wife and 3 year old to think of. Just looking for some input. No one I know can really understand this.

Spugsie.
Posted 8/11/2009 8:03 PM (GMT 0)
Hi Spugsie and a big welcome to the forum.

I understand how it feels when no one else knows how this condition affects you. You can have all the support in the world, but still need to cope with it on your own on a daily basis. You have got to way up if your life is ok to carry on as you are, or wether the quality of your life has deteriorated so much that you decide to make an informed decision to go ahead with the surgery. It won't be an easy decision and with a wife and little one in your life it will be even harder.

I would say to keep re-evaluating your condition and if you decide to go ahead with the surgery it will be the right decision.

It was 3 months ago that I had my surgery. It was scary stuff and during the first few weeks I was weak and tired but now I feel great, I'm going to cardiac rehab which has really boosted my confidence and I've even started horse-riding lessons! not bad for a 50 year old grandma.

Keep in touch Spangles X
Posted 8/12/2009 12:14 PM (GMT 0)
Hi Spugsie, All I can say is I did SO not wantmy husband to have the op. I would have wrapped him up in cotton wool and pushed him round in a wheel chair rather than him have it but he just couldn't carry on a life where he couldn't do all he wanted. I guess it's even worse for you with a young child? I am so glad he was brave enough to go ahead. Within 48 hours he had lost over a stone in fluid accumulated because his heart wasn't working properly and within a week his liver functions were slightly better. If you have found someone who does 5 of these ops a year [with good results obviously] it sounds like you struck very lucky. Read back these threads and see what Nan has to say as she too had a young family. Don't leave it so late that your condition has deteriorated to a stage where recovery will be difficult. Everyone on this site has been in the scary place you are in. Can you live like this? Try not to consider anything else but you and whether you can continue. If the answer is 'No' I think you have to have the surgery. If it's 'Yes' well keep going for another 2 or 3 months and ask it again. Meantime you can always burden your friends here if you do not want to worry family. Chin up X
Posted 8/18/2009 11:33 PM (GMT 0)
Hi spugsie,

 Sorry I haven't checked in for a while.

 I too was told by many Dr's who were considered experts that there were other ways to get cured or live with this , yet none of them realized how I was getting worse & worse & could barely do any normal activities.

It was no picnic having it done but I am SO glad I did it , after the procedure the surgeon said the Pericardium was like a white blanket around my heart & nobdy could see that through many tests before the surgery.

 I am cured for the most part & thank God evry day for helping through my decision to get my life back. If you move forward find the best guy you can but this is not considered the toughest of procedures by the really good surgeons.

 You have a nice young family with lots of living to do. Hopefully you will find the courage to get it done if that is what you are feeling.

 I have been through many Heart & health issues with Me & other Family members but this is one where the experts still scratch their head on how to treat it.

                Keep us informed, Boog

Posted 8/19/2009 2:09 AM (GMT 0)
How does one find 'the best guy'? I'm in Boston, but don't know how to find someone specializing in constrictive pericarditis. My frail mom has other complications, but I'm not convinced that all treatment options have been assessed. Please advise.

Thank you,
Mar
Posted 8/20/2009 1:13 PM (GMT 0)
Hi Mariam,

 I am not a Dr but from what constrctive pericarditus is considered a late stage of this condition as I tried 2 years of various treatments from 2 verey well known Medical Institutions & I was 51 yrs old & pretty health overall. None of the treatment worked & from what I know it is near impossible to reverse the damage.

  They told me I wasn't that  bad until they opened me up & found it much worse than imagined. Hopefully your Mother is strong enough healthwise for the procedure if that is what they suggest.

 I would find the best Heart surgeon within a reasonable distance & consult them. John Hopkins has a specialist who could probably refer some one they know in your area. The older you are & sometimes the longer you wait can make it tougher to do.

       Boog

Posted 10/19/2009 3:38 AM (GMT 0)
Hi there Spugsie....

Checking in after a long absence from this forum...just wanted to send my greetings to you and encouragement.  On Dec 14 it will be 5 (!) years since my pericardiectomy...hard to believe.  I was 35 with an 18 month old and a 5 year old.  Just "celebrated" my 40th birthday and had to really give thanks for being able to do just that.  I don't believe I'd be here had I not had the surgery.

I was wondering if you had been given the actual diagnosis of constrictive pericarditis.  It is different than pericarditis.  Not all pericarditis turns into constrictive as I'm sure you probably know.  My symptoms for pericarditis and constrictive pericarditis were very different.  My advice is to seek the best specialist that you can in your area...and travel if you have to.  I was fortunate to "land" at Minnesota Mayo but that is driving distance for us.  Just by chance, I ended up with one of the country's leading surgeons for my percardiectomy.  I'm thankful for that because I would have gone local if they could have figured my out.  I found this forum a month before my surgery and cried with relief to read stories of other young people that "made it" and felt great. 

If there is anything I can do/add...please let me know.  For some reason, I don't get alerted with new posts even though I select it when I post...so I'll try to check regularly. 

Best of luck to you.  Whatever is your best option, we'll be here to support you!

Nan

Posted 10/22/2009 2:55 AM (GMT 0)
Please see new thread:

https://www.healingwell.com/community/default.aspx?f=42&m=1622252&p=1

 

Nan, I have moved your post to the new thread.

 

This thread is closed.

 

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