Pericarditis & Pericardiectomy Part VIII

One additional note Cathy, I believe the common denominator is not necessarily the fever, but anything that even can cause damage to the pericardium whether it be physical or infective. Because when the pericardium is inflamed for too long of a period it thickens or loses its elasticity and that is when the constrictive symptoms begin to appear.

John

Hi Cathy,

You can add me to your list of ones who had these problems after running a high fever.  I can remember it as if it were yesterday--Feb. 1971.  My dr. prescribed an antibiotic and then after that episode I started retaining fluid.  He then prescribed diuretics and that's what I've been on ever since.  I never had any pain, just the fullness when I filled with fluid.  I never knew my heart was involved at that time.

You have so many questions, but no answers.  One cardiologist said the reason I was retaining fluid and my ankle was swelling was because I had a blockage someplace!  Last year when the dr. finally put a name to what I had--constrictive pericarditis--I tried to find out information about it because I had never heard of it before.  That's how I found this site.  From monitoring this site I've read how different everyone's symptoms are, but as you mentioned, the common cause seems to be those fevers that we all had.

I'm glad you guy's are doing so well after your surgeries.  I'm still waiting to be scheduled--they say the beginning of January.

Gerry

Hello Gerry,

Unfortunately, I think you are right. When I had an ablation to prevent atrial flutter the cardiologist saw that my pericardium was heavily scarred. A CT-scan later on confirmed the constriction, the pericardium had hardened. Because a pericardioectomy was so risky it was decided not do it, that was about five years ago. But the damage had already been done, my atria were enlarged already, after all I must have had this condition for more than thirty years.

The ablation was successful, I was without symptoms for nearly two years after that. Then the atrial fibrillation became uncontrollable and very unpleasant, a pacemaker was the best remedy.

Very likely I would not have needed a pacemaker if the pericardium had been removed much earlier. But an operation was so risky at the time. Anyway I can easily live with a pacemaker, however I still have chronic atrial fibrillation, but I do not notice it that much. Therefore I will never have my full energy back. For instance, I used to cycle long distance to work, but I can no longer do that, by the way work became impossible, I was ill too often.

During the operation the pacemaker presented no problems, it just went on working, so anybody with a pacemaker need not worry, the story is different of course if the lead has been attached to outside of the heart.

Gerry, you are right, I think you will never know. But one thing people like us have in common is that our condition is usually diagnosed by accident or when the condition is already very severe. One cardiologist said to me, 'Why worry, you just have a bit of calcium on your heart'. How wrong he was. Fortunately I asked another cardiologist to be my doctor, he has looked after me ever since.

It seems, Gerry, that your story is somewhat similar to mine. We both had the condition for a long time, and I also got much worse during the last six or seven years.

So I think you need not worry about your pacemaker.

I hope very much that things will go well with you. You have marvellous facilities in the US.

Best wishes

henk

New Zealand

Yes Nan, thanks for your input. You may also find this link interesting regarding Toni Braxton who developed acute pericarditis around the time she was pregnant but the doctors were fortunate enough to recognize and treat her in the acute stage before it could damage her pericardium. http://www.webmd.com/content/pages/23/110391.htm

John

NAN!!  HI YA!  CONGRATS ON your almost one year anniversary, that is so very cool!  Even tho, I was cut under the breasts, it still goes up halfway up to my armpits, so you can surely see it, but, yes, its getting raised a bit too, they said you can have shots of collegen to correct it, but its extremely painful, I think I will just deal with it!!

JOHN, yes, we all know that constrictive pericarditis can be caused by a blow to the chest, I was speaking in terms of the people who had constrictive pericarditis due to mysterious reason, or idiotpathic.  In other words, us who have never had a blow to the chest ever.  When you have not been hit in the chest, you are considered to have idiotpathic, "of unknown orgin".  The only thing the doctors can trace this too in MY life, is this massive fever that I had at age 19, otherwise, I have never been sick in my life.  Its interesting now, that FOUR of us, that have never had a blow to the chest have all had fevers of unknown orgin.  The surgeon's at Cleveland are certain it occured from that, so if it did, then we know that this virus, that is called pericarditis, starts with a fever.  (again, if you have never had a blow to the chest)  If this is the case, it can be controlled by sterioid and the damage can be minimal, if realized in time.  So, if anyone else that has constrictive pericarditis, due to an unknown reason, (no trauma to the chest), I still would be interested on continuing the count. Also, in answer to your question on pain upon inspiration, I had it badly, it got too the point where I would hold my breath as long as possible.  I was put on pain meds, and that helped control it a lot.  I still have pain, but they told me that I have so much scar tissue on and around my heart, I may always have to deal with it.

Gerry, I completely understand your frustration, I certainly went through the same thing.  Strange thing is, almost fifteen years ago, I had a chest xray, and since I have pulled every record from the last 19 years, it had said at the bottom, "possible pericardial calcification", my doctor ignored it, or maybe didn't notice it, and never said a word too me.  Certainly the calcification at that early stage would have been minimal, versus, the 11mms when finally diagnosed correctly.  One thing I find strange as well, is they act like this is SO rare.  I am shocked after this site, on how many people are getting this, I don't think this is as rare as they would like to believe.  DO you have a surgery date scheduled?  You will do fantastic, we all here are proud too say, everyone has done excellent in surgery, and all have gone to experienced centers to have it done, if you do that, your entire life will change after.  Its been five months since I have swelled.  OMG< its wonderful, not to live with that.  !!  Good luck to you Gerry!

Les, thank you for your kind words.  The reporter was completely ignorant, and put words into my friends and families mouths, and everyone was very upset, we all wrote letters to the editor, so that he doesnt do that again.  It was strange, because he didn't want to have a happy ending.  When he added at the end, that I said, "i thought I would be 100% after surgery, guess i was only dreaming, and now a heart transplant is in my future", I almost fell off the chair.  HE came with me to my checkup a week before the article came out, and my doctor told me the surgery was a success, and that I was doing great..the words "heart transplant" have never been mentioned, nor did I think that I would be 100% after this type of surgery, but without a doubt improved! AND AM!!  Now I know why when my doctor said, "she is doing great, we are very happy with the results", and the reportee replied, "what happens if she gets sick again", and my doctor gave him the strangest look; and said, "why would you say that, when I just got done telling you how well she is doing", so its obvious now, that he wanted MORE drama then there was, (as if there wasn't enough) and did not want to end it on a happy note, which is upsetting too me, I hoped that the article would possible give someone that had this hope and inspiration that you can lead a happy normal life after.  But, it doesn't upset me anymore.  WE all know the truth, and 75% of that article was false..I am certainly NOT a financial burden to my family, when my insurance covered 100% of the surgery...sigh!  That reporter was NOT a nice man to make things up in that article.  BUT, the important thing is, I am doing great, and am so thankful to be here, and to wake up every morning!!!   HAPPY HOLIDAYS TOO ALL!!!!!!!!!!  Cathy

Except for the cough which I'm sure hurt like you know what, glad to hear your getting better!  Oh yes, dealing with the insurance company can be such a pain!    Hope they get their act together and that it doesn't delay your rehab!  Hugs, Pat

Greetings from cold but sunny NE England.

Its now 6 weeks since my operation, & I'm sorry not to have replied sooner.

I'll run you through my experiences as briefly as possible.

I was the first patient on the list & my last pre-op memory is being collected for theatre, after a lorazepam aided good nights sleep. The evening had been rounded off nicely by a 2 nurse chest & arm-pit electric shave.

The op took nearly 5 hours & I was on by-pass for the last half hour as my bp was falling.

As we knew from the CT scan most of the pericardium was calcified & there was an interesting double layer at the front.

The surgeon was able to remove about 90% of the pericardium with just a small area remaining at the back.

He then performed another long op, went home & slept for 13 hours.....poor guy!

I spent a day in ITU which I don't remember at all. I spoke to my wife on the phone that night & I evidently sounded like I'd drunk 10 pints (of beer.....Imperial Pt is 20 oz).

Next day I was shifted to HDU & I can remember some of this day. Dressings came off, urinary catheter came out, & I had my first meal. I remember being seen by the surgeon & the physiotherapists.

I then moved again to a mixed medical/surgical cardio-thoracic ward.

My main problem was pain from the thoracotomy, which I had of course anticipated. Coughing & laughing were particularly painful as was getting out of bed. I hate having to sleep on my back like an egyptian mummy. Worst of all was (and is) the sneeze.

I went a bit green after the op with a bilirubin of 82, but gradually all of my old symptoms went away.

Bye-bye oedema, nausea, bad tastes, & yes breathlessness.

I was discharged home on the 7th post-op day,& immediately found that I could walk 2 miles to the river & back with no problem at all. OK, I needed to rest a lot but thats improved too.

Last week the surgeon discharged me to the physicians, & yesterday I joined the twice weekly rehab group.

They are mostly angina & MI patients but several have had open heart surgery as well.

I can walk the 5 mile round trip to town to pick up shopping in a small rucksac. I use a heart rate monitor to encourage me to walk briskly but not too fast.

The surgeon has promised to send me a copy CD or DVD of some intra-operative photos. Is it possible

(or permited) to attach them to the forum?

Regards to all

 

Hi John:

     I'm not sure if my by-passes were done differently but my follow-up appears to have been seriously lacking.  Apparently I had Dressler's Syndrome for months and months and my doctors didn't recognize it.  As a consequence, I have serious scarring that includes the bypasses in the scar tissue.  The doctors say there is too great of a chance that the graphs would be "compromised" when they opened my chest and I would bleed to death or suffer brain insult before they could get new graphs connected.  I would doubt that assessment but it came from what I consider two reliable sources, Emory University and Duke University.  I suspect the Cleveland Clinic performs such surgery but at the present time, after being unable to work for the three years since surgery, I am at the mercy of what the Department of Veteran's Affairs decides to fund or not fund.  They sent me to both Duke and Emory but the decision is pending on Cleveland. and that doesn't look favorable with all the budget cuts.

I hope everyone else is doing fine.  Stay in touch.  It's great following your recovery.

Les   

Les...

Sorry to hear that your decision to visit Cleveland, is subject to budget cuts. In a perfect world this would not be the case. Let's keep our fingers crossed for a favorable decision.


Ernesto...

So happy to hear of your successful surgery, 5 hours is quite long thus understandable that you required a bypass machine. It is impressive that you were able to walk 2 miles on the 7th post-op day. You must be a quick recoverer. Did you have any pain with deep inspiration prior to your surgery and does your doctor know what caused your pericardium damage?



John

Thanks to everyone for your concern.

I think that it was more like 10 days before I went out for a decent walk. Every doctor & nurse seem pleased with my progress but at 56 years I'm one of their younger patients.

I didn't have any preoperative pain to speak of, mostly unpleasant gastro symptoms.

As for what caused the chronic pericarditis, the pathology report just noted the calcification. I had a week or two of night sweats about 5 years ago but apparently thats too short a time for such calcification. I used to play rugby football until my 30's & took several chest falls while learning to ski in the late 1970's. I've also had 2 frozen shoulders & my ESR was elevated at about that time. As the worst of the calcification was at the front maybe it was due to trauma.

Cardiac re-hab has shown to be effective in various studies (Google Search: cardiac rehabilitation evidence). An easy thing for common MI's & angina patients, but for us rare birds it would take forever to get a significant sample to prove its efficacy.

Its funny, my initial rehab appointment was for 2 weeks post-op. The rehab nurse didn't realise that I had been admitted so quickly & was trying it improve my pre-op fitness! I go to the local council sports centre & pay £1.90 per  2 hour session. I could have gone to the local hospital for no charge but the equipment is not so good there.

The National Health Service is a notorious political football. Apparently the UK spends about half as much on health care as the US (adjusted for population & GNP). On average about 25% of pay goes as various income taxes & another 25% on other taxes. I'm straying into politics, keep out!

Have a good weekend!