Pericarditis & Pericardiectomy- CLOSED THREAD

Sorry for the delay, i've just got rid of my high temp at nearly 5 weeks post-op ! I feel a lot better generally and I have lost that spaced out feeling. I'm also driving which helps a lot. Went for a good walk today about 4 miles with the dog and actually felt that the walk was beneficial rather than harmful as I did pre-op. Had bloods done today at GP's as I have had low HB 9.1 !! raised inflammitory markers and high platelet count, so will get results Monday. I have been a bit worried as I still have the pulses in my neck and distended jugulars when I lie flat. Reading back I know that Nan had this problem post-op. Can anyone tell me if they had this problem and how long it took to resolve. Anyones account of their post-op recovery would be much appreciated.

Spangle x

Hi Boog thankyou so much for responding. Perhaps I am being impatient,it is only 6 weeks since my surgery and i've probably still got a lot of healing and rehabilitation to do. Thankyou for your encouragement it's just what I needed.
Spangles x

Hi Spangles. Glad you're coming along well even if a bit slow for your liking! Our GP said that it takes a year to eighteen months to really get over heart surgery. This was when my husband was itching to go back to work! He was right beacuse it seemed to take that long for all the aches and niggles to go.

Hi Sherwood and Boog,

I had my post-op appointment yesterday and got to see the Surgeon and the Cardiologist together. My echo showed mild Right ventricular disfunction, mild tricuspid regurgitation and mild septal swing which shows that their is still a bit of constriction there. I also still have a right plural effusion apparently about 3-600 mls. The surgeon thinks that it should disburse itself when I start my cardio rehab, he also said that things were generally good even though I didn't feel a 100%. The cardiologist thinks that there is still time for improvement and that my heart could be 'stiff' and needs to find its contractability again. He also said that I should have my rehab which lasts for about 2 months and then we would talk about me going back to work, reducing my hours would be one option or taking on an office job would be another. Anyway hope this good weather keeps up!

Spangles XX

Hi Spangles, They had my husband on a beta-blocker for about 4 months post-op as he still had a fast heart rate and he was told it takes time for the heart to settle itself down. I hope you are feeling better in yourself. Cardiac rehab in our area was so tame they told him not to go after the first session as he got more excercise in our dance class! Trouble was it wasn't just post-op people. Lots of them had CHD and so it was v. gentle. Sounds like you are itching to get back to work! Enjoy the summer. X

Hi Spangles,

 Try taking about 400 mg of chelated Magnesium, I had Afib & still have up to 2,000 PAC's a day, since my 2 Electrophisiologists put me on Magnesium supplements I am down to about 30 skipped beats a day. Trust me on this one. Magnesium will also loosen you up some in the bathroom so start with 400 & gauge it from there. I am on 1,000 a day & have my heart beating normally but I am a 230 lb man. It is a really big part of the Electrolytes part of this. I am off Beta & Cal Blockers since too.

  Boog

Hello Boog thankyou for your much needed advice about magnesium, I will definitely try it starting from tomorrow. It would be great to get off the tablets as you will know they all have their side effects. Hi Sherwood this man does know what he is talking about.

Spangles xx

Hi Sherwood, Boog, Nan2, Els, and Everyone. It has been along time since I have posted. I have read over most of the posts since then and I am touched by your concern and assistance you willingly give to anyone who posts!

Just a bit of an update, I continue to have pain post op 3 years. Probably due to the inflammation from the surgery, as you said a long while back Sherwood. I have been seen by an endocrinologist who has checked me for everything and is miffed as my inflammation continues to increase. But I truly believe the procedure caused a break down of my body, too much trauma, and stress on my person, along with the surgeon's inexperience. 

I would like to run a few things by you all to see what your thoughts are...ok?

That I went into pulmonary collapse following the surgery. I do not believe plueral drains were placed, my family doesn't remember them either. I was told briefly by the dr. in the hospital that my lung had collapsed, but when I questioned him the next day he denied it. I was never treated for the lung collapsing. Now I find that I have 80% lung loss.

 I noticed that some of you have found that the cath had evidence that you had constriction, so I am wondering if mine would show the opposite? A copy of the cardiac catherization was given to me, although I haven't found anyone who can open it.

I also have discovered that the pulmonary hypertension presented itself following the surgery almost immediantely after and not prior to. Following the surgery I had valve damage, and pulmonic regurgitation also known causes for pulmonary hypertension. Boog, you said you heard bad stories following inexperienced surgerons operating, does this sound familiar?  

Additionally I have been given an anti-body test which came up negative for the 2 most common virus antibodies which pretty much rules out a virus.  

I am uninsurable due to the pulmonary hypertension, and am financially and physically damaged, and yet none of my doctors, aside to an internist will acknowledge that my condition is related to the effects of the surgery for the injury.

I am having to make a decision as far as my future needs and any help anyone can give me that will help me know how to "prove" the etiology for my poor health is appreciated. Thanks! Sorry to take up so much of your time!

I am very glad for the professional surgeons who care to do the proper procedures!

Hi Heartache,
Yes I had 2 botched procedures at UCSF for Afib which caused all kinds of problems. My Pericarditis was due to those procedures & then needed the stripping & a Maze procedure, I went to the Wizard of heart Surgeons on the west coast ( Guadiani) for the 3rd procedure who got it all worked out. I still have & will always have a few small issues but nothing like after the first 2 poorly handled procedures.
I think you might need to go to a "Top Dog" type of Cardiologist, perhaps you can write me directly by clicking on the envelope next to my posts, that should get me a direct email. I now use 2 Cardiologists & I see them a week apart of each visit to make sure they both agree on what I am being told.
There are a few great Doctors spread out throught he Country & we need to get you together with one of these Doc's.
I will ask my 2 Dr's who they would see depending on your region of th Country.
I follow a lot of these things through other support groups & I have never heard of that much interior damage being done from a Pericardiectomy. I agree with Sherwood, you need to get ALL of your records as I had to do & start with some one new.
I have had an inflammation problem & have now started a special nutrition plan that has really helped with inflammation through out my entire body.
I will wait to read an email or your next post to see how & where you are going with this,

Boog

Hi Heartache, Well if you had had chest drains in you would have had a little scar each side, I'm sure you would remember them coming out and you would have needed stitches out of them about 10 days post-op. Even if they 'glued' your main incision the drains would definitely have been stitched in. If you are sure none of this happened this could be why you have lost lung capacity as they never inflated properly. Your best bet is contact Boog. That or move to the UK!!! I can't believe the cost of treatment over there. We moan as there is a wait on our Health Service. We were lucky we had private insurance so my husband was in for his op in a month but even on our National Health he would have only waited 3 months and all our drugs are free for under 16 or over 60. Even if you pay it is only about $9 an no matter what cost the drug is! Good luck. X

Ok I'll try and explain it so don't be cross if I make it too simple I'm not trying to insult your intelligence and don't be cross if I'm too technical [I was a nurse, retired now]. Just below your ribs each side a tube would have been inserted and it goes into a little container with a one way valve on it. The end of the tube goes in the pleural cavity. This is because when they close you up there may be some air there that stops the coating of the lung adhering to the chest wall . Every time you breathe in a deep breath [which is why the cruel physio encourages deep breaths!] Some of the air is pushed down the tube and into the container. It can't go back becvause of the one way valve. Eventually the air is all expelled and the lungs are able to inflate fully. My husband has such faint scars you hardly see them but the tubes have to be stitched in so they don't slip out so you'd remember them coming out. Also they hurt when you cough as the ends poke you. The drain in the main wound is to drain off blood and serous fluid. Did you have visitors immediately after the op, say in the first 48 hrs who can remember? Was it possible all 3 drains came from the same drain site? Hard to know what is normal practice where you were. Carry on getting the info, take Boog's advice and see where you go from there. His surgeon sounds excellent so maybe he could look at the surgeon's notes? I suppose it all costs! I just know that when we saw my husbands surgeon he said the video and pics. of his op had gone all over the country as it is now such a rare operation

HI Sherwood,

I just wanted to see if you knew for sure if it was possible for the pleural drains to come off the median drain. Either way I would have had tubes running to the sides of my bed, which I did not have, as confirmed by family. So, I can know for sure that I did not have the pleural drains put in place. I didn't think so, but as I was told about the median drain, I wasn't sure if maybe that was done. But now I am because I do not have any marks (scars) and did not have any containers or tubes running to the sides of my bed.

Thanks! Sorry, but I just wanted to make sure!