Pericarditis & Pericardiectomy Part VIII

Hello Everyone Old And New,

Nice to hear that your recoveries are going well.

My visit with Dr Shabetai in San Diego went well as the heart echo did not reveal constriction. However I do feel changes occured in my body since the acute pericarditis attack back in March/April and on going chest pressure particularly I have had a tiresome day. I explained to him that my pain is more prominent with deep inspirations and while standing. Also numbness and pain at times in different areas of the body, almost like a circulation issue from the heart not pumping properly. Has anyone else had these issues?
I am running out of options. I am considering Panax Ginseng, has anyone else tried or know anyone that has experience with this herb treatment?
I have symptoms but thus far my doctors have no treatment for me, very frustrating. My condition maybe too early to detect even with modern equipment. And Western medical doctors can't seem to diagnose based on symptoms anymore. That is why sites like this are a Godsend because there are real people with real symptoms and good information is being shared with each other.

Gerry...
Did you state that you may have had your constriction for 30 years or so without the doctors being able to diagnose you properly? As advanced as the modern detection techniques are, doctors still can't rely on it too much as the real picture is only clear when the surgeeon opens the patient up. I wish you the best in your fight with with CP. I remember reading one of the earliest post back in Part I about an older gentleman whose tenant wrote in and indicated his surgery was successful.

John

Hi everyone!

Fun to see how well the veterans are doing!  Gives the new guys hope!  I'm coming up on 11 months from my surgery now...it's really unbelievable what has changed.  I'm starting to have the "one year ago I couldn't climb the stairs at this event" feelings and now am there a year later and charging up the stairs no problem.  One year ago I was just telling my family that I might need surgery.  Crazy.  I'm so thankful.  I feel great.  I am aware of the fact that I can't feel my heart beating and can't hear my heartbeat in my ear and don't feel like I'm being strangled or my head will explode if I bend over.  So...I look at feeling great from a different perspective and I'm just very thankful.  Going through the fear of surgery and recovery was so worth it.  My kids will have their mom around.  Anyway...I can't believe it's been almost a year. 

Cathy...Your article already helped someone!  Even though they botched some details...the fact that you were willing to put yourself out there helped someone!  What a gift.  Can you imagine being sick and not being able to find info on the dx and then coming across an article like that?  I can...that's what happened when I found this site and some woman, Barb I think early on, posted back and those words "I survived!" were hope to me before my surgery.  You are hope, Cathy.  Way to go! 

I have to admit that I'm jealous of the scar...mine should be pencil thin because the incision was closed beautifully but I healed with some keloid or whatever the word is and had some raising of the scar.  Still a small price to pay to have my life back, and I was not bikini material before my surgery :) But I would like to be able to wear V-neck shirts again. 

Hope everyone is doing well.  I've been busy with my new business...it's going well so far.  Fun to have the energy to do it!

I'll keep checking in...I'm happy to help in any way.  Have we heard from Ernesto yet?  He should be home by now right?

Nan

Gerry,

Sorry to hear that you have suffered with this condition for so long. How frequently did your doctors perform heart echos on you during this time? Do you feel any pain/pressure or heart compression upon deep inspiration? That is my problem along with a weak pulse. And my echos are normal looking. The high resolution scan I took back in July was a bit inconclusive. They won't perform a cath on me because I do not have visible symptoms. Like you said the doctors have a hard time diagnosing this.

John

John,

I had Echocardiograms every year for the past 5-6 years, plus I also had a Nuclear Stress Test done, but no mention was ever made about the pericardium.  These tests were done by the cardio group where I live.  I have no pain although I will get pressure if the diuretics aren't working and I'm full of fluid.  I guess the Dr's figured that if I didn't have any pain that nothing needed to be done.  Also, I was diagnosed last year with congestive heart failure, but that diagnosis was made after I had a chest x-ray and was made by my internist.  I'm in the process now of finding a cardiologist in my area, preferably someone who knows about constrictive pericarditis.  I will need someone close by for treatment after surgery and it would be too far to go to NYC.

Take care,

Gerry

Hi Brent, just wanted to welcome you to this board -- wow, you've been through a lot!  Congratulations on getting through your surgery and feeling relief of most of those symptoms, I'm sure it makes life a lot easier. 

I myself, don't suffer from pericarditis, but this board has been a great help to me as my fiance does.  He has managed to avoid surgery though, and is on medication (which he will hopefully be off soon).

As far as the night sweats, he suffered terribly from those for a while.  Now he is doing really well at night.  I would say, give your body a few weeks or even months to recover.  You've been through a lot!  Others on the board here who have been through surgeries (mostly pericardiectomies though) can probably give you better input!

All the best,

Maya

If anyone else is interested, I believe this is the appropriate link.

http://www.wellnessbooks.com/cgi-bin/search.pl?Operation=ItemSearch&Keywords=David+Spo****&SearchIndex=Books&templates=search

John

Hi everybody,  Sorry I've been a way for a while.  Everything just happened at once.  I think the last time I wrote I was going back to have my sutures checked because I had slight weeping from the top stitch.  It turns out that the top stitch knot didn't dissolve, skin grew over it, and the area beneath the skin became infected. It was an interesting visit. Dr. Kass told me he didn't like the way it looked and then immediately admitted me back into Cedars! I went to an appointment and never came home.  I was referred to Dr. Sokolov, a Infectious Disease specialist that found I had a very mild staph infection.  So, for four days I sat in the hospital and had intervenous antibiotics pumped into me to combat the bacteria.  Luckily, I responed quickly and the infection is gone. Dr. Sokolov, however, insists on aggressive antibiotic therapy.  I'm administering my own IV twice a day for a total of six weeks.  I'm in week four now, so I only have two more weeks to go.  My insurance company was kind enough to set it up so a pharmacy delivers my medication once a week and an in-home nurse checks my wound and runs blood tests once a week as well.

When I got out of the hospital on November 2nd I was finally able to return to work.  It is great to feel productive again.  Sitting around for five weeks was really beginning to get boring!  As far as my symptoms . . they are all completely gone!  And, I mean 100% eliminated.  I feel so fortunate that the surgery was successful.  I met with Dr. Swerdlow, my Cardiologist yesterday and he tells me my echocardiogram is perfect.  I'm also weaning off the Lasix gradually just to make sure the ascities doesn't come back. But, so far, the water has completely disappated and seems to be staying off.  The real problem will be my metabolism, which has returned to it's normal, slow self.  I can tell it'll be easy to put on weight.  I've gained 8 pounds in five weeks!  I'm at 180 now, which is a good weight for me, so I'll start struglling to maintain it using will power now (ugh!).

Brent:  I agree with Maya . . it takes time to completely recover.   I had terrible night sweats for the year and a half before I had a pericardiectomy.  And, for three weeks after I would have night sweats just around my left shoulder and the back of my neck and hair.  It was really odd.  I don't know if you're still on any water pills, but they can contribute to the sweating as well.   Sounds like you're doing great.  Hope the rest of your recovery is speedy and uneventful.

Maya:  How is your fiance doing?   I hope the weaning off of the steroids is going well. 

I hope everyone is doing well.   I promise to return to checking the board daily and be a contributing member of this great community.  Godspeed!

Scott

Post Edited (Scott D.) : 11/17/2005 4:44:05 PM (GMT-7)

Nan and Henk, thank you so much for your kind words.

Nan, I have heard they make a necklace for women that have had open heart surgery, it is stragetically placed so that you can wear a V neck; and no one can view the scar...they were specifically made for the purpose of hiding a sternum scar on women...they sell them on the internet, check it out..

I have been doing good except for one thing.  If I fall asleep and wake up suddenly or even sometimes just upon waking up, my heart will start to pound uncontrollably..it goes away after about ten minutes, but, I was wondering if this is happening to anyone else.  Also, Nan, I have not been able to locate the latest newspaper article they did on me online, I signed on to the site of the paper, and cant even view it there...how did you find it?  If you remember my email address, please write too me and let me know.........I would really appreciate it.  Lytle did an excellent job on me, he graduated cum laude from Harvard Medical School and has since become the Chairman of The Cleveland Clinic Department of Thoracic and Cardiovascular Surgery, he is pretty proud to have such a prestigious position.  At any rate, so good to hear from everyone...Glad to hear everyone is doing so well.  Cath

Hi Cathy,

You have brought up a very good question. I can remember that about 35 years ago I felt feverish for several months. At some time I could not even lift my arms, but there was no pain, so I did not bother to go to a doctor.

The first heart problems started in 1979, but of course nobody could find out what was wrong with me.

My cardiologist thinks tb is a likely cause or I suggested to him an auto-immune disorder. But it is now too late to discover what caused it all.

When I go to bed and I lie on my side my heart also thumps for a few miniutes, it goes away and it does not bother me. I do not know why.

Any way I feel fine. As you know I still have a pacemaker because of the atril fibrillation.

My operation was nearly a year ago, December 2004!!

I am so glad you are doing well

henk

NZ

Cathy...btw..thanks for the cool tip on the necklaces...do you have a link?  I'd love to see them.  Cool idea.

Nan

Hey Nan,

I will do a search and look for them, it was a long time ago I saw them; and I paid attention; because I knew I was going to have to do this in the future; at that time.  When I find it, I will let you know.  I went to the doctor the other day; and he said my scar is keloiding, what ever that means???  I have a tanning bed in my home, and I tried to cover it up, but, I think it may have been affected by the lights..yikers, I wont be doing that again for awhile.

That is really interesting about the FEVERS, so far, three out of three have had major fevers at one time or another.  In my whole life, I have never been ill, other than colds and flu.  But, that one fever hit when I was 19 years old, and I went from such extreme hot to extreme cold, and it lasted for ten days.  The doctors have to believe it occured then.  IF we knew if ALL of us had, had a MAJOR fever at once time or another in our past, we could at least pin point it to "THE FEVER", and then try to figure out what brought it on.  IT would be a step to possibly preventing this somehow.  Boy, that would be great.  The board sure has slowed down...I hope it picks back up again, sure miss everyone........Cathy

Hi everyone, nice to hear everyone is doing well.  Hope Thanksgiving was nice.

For my fiance, everything is proceeding OK.  He is still on the Pred and colchicine, but is also on something called plaquinal (sp?) that apparently makes it easier to wean off the prednisone.  His doctor is following everything very carefully.  We went for a checkup on Friday, the echo looked great, his EKG was excellent, heartrate was good, so all good news!  Just have to enjoy the little victories!

Hope everyone has a great week back to work this week!

Maya