Welcome to Part VIII of the Pericarditis and Pericardiectomy Thread!! Wow! This thread has been through a lot. It continues to grow with both new and old members and has become a place where sharing is at it's best!
Here's a place to share your experiences, learn from others who have 'been there before' and offer your support to members who have questions or concerns re Pericarditis and it's effects on the body.
Thanks to all of you!
Best Wishes & Hugs, Teri
PS As you can see this is a very popular thread, so if you'd like to read the previous threads, they are found on other pages of the Cardiovascular Forum here, starting with Part I.
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Hey, Teri! Thanks for helping to hold this whole thing together.
I'm interested to hear from Cathy, too....
As for me, I'm doing fine. Have been working out again. Occasional SOB, such as when going up stairs. (It also seems like I get hot really easily.) Went to see the pulmonary guy today, who ordered up a CT scan. He suspects that there may be some pleural scarring, which would come as no surprise to me. No one---including me---seems to think that it is anything worth losing sleep over.
Hi Nan, Mister S., Teri, Cathy, John99 and everybody.
My appointments went well today . . . I saw my surgeon, Dr. Kass and my cardiologist, Dr. Swerdlow. Both felt I looked great and thought my recovery time was better than expected. ANd, Cathy, you were right: Dr. Kass completely removed the front of the pericardium and left a portion of the back in tact. He has not heard back from pathology yet, but still doubts my pericardium will reveal anything about the origin of whatever attacked it. Dr. Swerdlow was amazed at how much my ascites had gone down and we both feel that I probably have very little fluid left in my abdomen. He also commented on my skin color and how much it had improved (I used to be grayish, now it looks like my normal skintone). I told him about my SOB worries and he told me that a small portion of my lower left lung was still collapsed as an after effect of the ascites and effusions. He feels that diligent use of the tri-flow will eventually seperate the area that's stuck together. I also have a rather weird night sweat problem. In the past, when I got night sweats, it involved pretty much 100% of my body. I never had a fever, I would just wake up soaked in the middle of the night. about two months before my surgery, this sypmtom went away one night and never returned. Now, ever since the operation, a very small area around my left shoulder running up the back of my neck and head are experiencing night sweats. It's the oddest thing how localized and precise the area is. Dr. Swerdlow told me not to worry about it, that it's probably a side effect from the water pills and will eventually go away. I should only become concerned if I develop a fever.
He scheduled me to return in a month for an echo and office visit, and thinks I can return to work by the end of this month. The only problem with that is he doesn't want me driving until mid-November. I'm hoping I can convince him otherwise in a couple of weeks, but he seems pretty intent on keeping me from behind the wheel. My argument is that I only need to drive 18 miles, all travel will be during rush hour, and my freeway speed will never exceed 12 miles per hour! His argument isn't that he's afraid I will get into an accident (although he said that would be very dangerous if I did), he says the turning of the head and upper torso to check behind me before changing lanes is brutal on the sternum.
Out of curiosity: Has anyone out there been cleared to drive before six weeks after their surgery?
Well, that's about it for me! I hope all of you are doing well . . .Chat with you soon!
It is good news to hear that everyone is doing well. These surgeries are clearly major "events", so of course there are going to be some challenges afterwards.
Scott, I thought of you yesterday! I met a friend for dinner on La Cienega, and I picked up a copy of that weekly publication, "Beverly Hills 213" (back when the area code was 213, eons ago!). On the cover is Dr. Shah with Kirk Douglas and his wife. He is one of your doctors, right?
I'm happy to hear from everyone! - cept where's Cathy?! I'm getting worried?
John where are you?-hoping all is well?!
John, you said you didn't realize getting a tube out was that difficult - I don't suppose it would be, but I guess for such a small short little thing? I don't know - I know it sort of scared me at first. lol
Scott, I've never heard of anyone being cleared to drive before 6 weeks. There are usually reasons they make these limitations and no one generally heals that fast. Listen to your Dr.'s. If you were to get into an accident and it's against Dr.'s advice for you to drive - watch your insurance drop you or raise your cost! And of course they'll say it's your fault cuz you shouldn't have been driving. Do not take that chance.-I care. (I got chewed out just for trying to leave a day early from the hospital lol!)
Maya, how is your fiance doing?? Okay with the prednisone dosages? How are the wedding plans going?
Nan, it is always great to hear from you!! How is your new business coming along?!
Hi Mister!! You are working out already - you are doing wonderfully! You and Scott talking about being hot? hmmm Some type of nerve thing?...it's almost like a woman who's going through perimenopause and gets night sweats. I'll see what I can find out.
You all take care!! Bunches of Hugs always, Teri "Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Hey Everyone, thank you so much for your warm thoughts and concerns!
This is the deal, first, the four page article comes out Sunday, if you want, I can post the link here, but, most of you have been down the rode with me, and it might be a bit redudent, but, their are about six doctors quotes/interviews that may be interesting. SAW my cardiologist...totally normal for my EF to drop, he said this is one of the most tramatic surgeries a body can endure, he said that my heart has taken such a beating, that it is still healing, and like a muscle, it will continue to get stronger as time goes by. I asked him why my results were not as good as all of yours right off the bat, and he replied, "i doubt anyone had close to 11mms of calcificaion Cathy, that is without a doubt a record". The reason calcification was left on my heart, was because those were the area's it was actually adhered to my heart, the only way to remove it would be to remove a chunk of my heart. We wouldn't want to do that. The reporter was with me for the appt, and he said, cathys ef has went down, what happens if it continues, and he said, why talk about that now, so far, no swelling, i look like a different person, i think you will all note that when you see the article, the before photos and after, i was so bloated. So all is good in my world today...just a whole lotta trauma, and he said that it takes a year to completely heal from this, the sharp pains I am experiencing are from scar tissue on the heart..he said I have a whole lot of it. So all in all it was good news. Dr Lytle returned a few days ago, he is calling me tomorrow. A new girl found me named Wendy, she is 36 with two kids...she found my email address on the cleveland clinic forum, she is having surgery at cleveland clinic in november, boy, I am shocked at how many of us their are...the list just keeps growing. But one thing is certain, we are showing that the mortality rate is NOT high on this surgery, and that is something to be so proud of! Cathy
Scott..your doing great...my prayers are always with you!
Hi Cathy! I'm so glad to hear from you! And yes, please put up the newspaper link here for us to read! I'd really appreciate it and so will the many others who stroll this way wondering what it is like, right after they've been diagnosed with it.
Please take care of You, Cathy!!
Bunches of Hugs, Teri xoxoxo
"Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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After doing some reading on this subject, re you feeling hot, or sweating more, it may come from different things, however since you mentioned that there could be some pulmonary scarring? I think that's probably why your Dr. was leaning more toward's that then perhaps another cause. Hopefully, the CAT scan will tell all! Plus keep blowing into that breathing aparatus!!
Please let us know what happens!!
Big Hugs, Teri "Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Your questions re the sweating are probably a little different just due to the difference in how you are saying it's been occuring.
In the beginning, it , too may have been possibly from a pulmonary source, but since that seems to be resolved and now what you have left is such a precise spot where you seem to have this occurring...your Dr. is probably right on the mark.
Sweating comes from spicey foods, thyroid problems, medications, infections, anxiety, pulmonary edema, withdrawal from drugs and many other things.
Hopefully, this is temporary and you will pass through this phase quickly!!
Hi Maya, I think it was Cathy that met with Dr. Shah. He was an utmost professional who told Cathy that she should use another surgeon as he was not comfortable performing the operation. Thank you for thinking of me. I'm doing wonderful now.
Hey Teri, OK, OK I'll stop pushing to get back behind the wheel. I'm just starting to get so bored. (Of course, the minute I get wrapped up back in work I'll be longing for the days I could sleep and just do whatever I wanted!). As far as the overheating . . I think I am passing thorugh that stage rather quickly. it seems to have greatly diminished for now. Hopefully it's going away for good. I still have trouble sleeping though the night, but that's because these dang water pills make me get up every three or four hours. I do sleep so much better though overall.
Cathy, I can't wait to read your article. Sharing your story in that way is so important. Just as you pointed out, it can really help people that have suffered through all of our symptoms without a diagnosis. It gives them one more place to look. I'm also happy you received good news from your doctor. It makes perfect sense that, with the severity of your condition, your heart needs considerable time to heal. Stay strong!
Thankfully, my biggest problem now is a very minor one: My incisions hurt and itch quite a bit. Everything else, including my breathing depth/lung capacity is getting better by the day. I feel like my normal old self again. Something I've missed for the last year and a half.
Thanks, Teri, for looking that stuff up for me. I figure that the feeling hot thing has got to do with the pleural effusion/scarring thing. Or the fact that I am on lasix. Or some thing like that. Who knows!? In any case, thanks for checking things out. You rule. Sidenote: My wife pitched that breathing thing months ago, after the CT people told me I didn't need it. (The spirometer, right? The thing you suck on, in order to get that disc to rise?)
Scott---so glad to hear that you're healing up. You will probably have various & sundry annoying little healing-related issues clear up into the fourth or fifth month. You may even have some kind of fun thing like I do! That itching, as far as I know, is definitely a good thing. RE: your question about driving, I *was* actually cleared to drive after four weeks---provided, of course, that I wasn't taking any of the hydrocodone pills. I think I drove at the fifth or sixth week, though. I still was feeling pretty loopy and prob. shouldn't have been driving. Oh, well.
And Cathy---so good to hear things are on the up-and-up. I will look forward to the article, too.
Can you tell me the best website to research this subject? I have to admit that I have not been reading this thread as I wasn't interested! Things change! Recent echo thrilled me with an increase in EF to 45% but a new item was fluid in the pericardium (SP?) Has this anything to do with cardiomyopathy or is it something unconnected? I don't have any new symptons in fact my cardiomyopathy symptons have improved! Is this fluid anything to be concerned about? I see the doc in two weeks unless I have pain. Thanks for any info.
Usually there is a small amt. of fluid there, it's when it becomes too much that would cause some concern. Have you had any tests done so far? Have they suggested anything as the cause? I believe this may be something you should ask your physician about, as the cause varies.
I wish you all the best!
Hugs, Teri "Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
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Cough is gone... still a touch of sore throat... that good ol' tube must have scratched something..
Started to drive and bike! Post surgery checkup is coming up in 2 weeks... hope everything will be OK... and after that... I hope I can start a serious workout and get myself back to shape...
Scott... I feel the same way...I slowly feel like my normal old self again. Something I've missed for the last 2 years or so..
Cathy.. where is the link to your article?? I hope you were nice to the "boys" in Cleveland... I think they did a fantastic job on both of us...
You are doing fantastic! I do hope that they can resolve this sore throat stuff...but sounds like you are off and running, oops, biking! (I'm bad with my jokes lol)
Bunches of Hugs, Teri "Because he is he and I am I."......E. V. Lucas
"I Hope You Dance".............LeeAnn Womack
Please allow HealingWell to continue helping others by donating:
I have been monitoring this site for several months. I happened upon it on my research for information on constrictive pericarditis, which I was diagnosed with last December.
As quite a few have mentioned, their symptons started after a bout of high temperatures, as was my case. Unlike the rest of you, my symptoms started back in 1971 with temperatures and then the retaining of fluid (I was 33 at the time) and the feeling of fullness in my chest. My GP gave me diuretics to take. Several years later I had another bout of high temperatures, which happended to occur on the weekend and we were unable to reach my GP so my husband took me to the E.R. The DR there thought I had hepatitis because he said my liver and spleen were enlarged. He also performed an EKG, which he said was abnormal. From that point on I had all kinds of tests--all inconclusive of what was making me retain fluid.
I had no pain or any other symptoms at that time. I worked full time and kept busy raising three children, and participated in various sports.
My problems started in 2000 with episodes of dizziness and my heart kept racing. My husband took me to the ER and after EPS testing it was decided that I needed a pacemaker, which was then implanted. After that I had shortness of breath and difficulty climbing stairs. Needless to say I had gained weight as I got older and I was attributing the shortness of breath to that until my daughter noticed that my lips turned blue when I walked or exerted myself. She subsequently made an appointment for me with a cardiologist in NYC (although I had been seeing a heart doctor here in PA but all they did was tell me to continue the water pills and Toprol). I'm currently on 80 mgs Lasix and 25 mgs Aldactone.
The doctor in NYC diagnosed constrictive pericarditis after having a cardio cautherization, echo cardiagram and CT scan. He stated that my pericardium was calcified and I would need an operation. That is when I started researching and came upon the HealingWell site and all your accounts of your problems and successes. I have been to the Cleveland Clinic and Dr. Klein confirmed my NYC Dr's. diagnosis (after 3 days of testing) and stated that my heart indeed was calcified and I would need an operation. I am currently waiting for a date for the operation. They stated they're scheduling for the mid-Dec. timeframe now.
I've had this problem a long time, but I don't know when the calcification started. Will the removal of my pericardium stop the retention of fluid, especially the ascites in my abdomen--I look 8 months pregnant? I've read so many positive accounts of your surgeries, but you all appear to be so much younger and active than me. Your thoughts please.
Mister S. - Good job on getting a hold of a spirometer. Using it religiously will make a big difference in your recovery. It's also nice once you feel you're breathing correctly again to use it just to test how things are. Several times I've thought I was fine and found I had slipped a little on lung capacity. I wouldn't have known without the device. Great news as well that you were back driving after four weeks. I'm not on anything other than lasix, aldactone, potassium and baby aspirin. So, there wouldn't be an impairment issue if I were cleared to drive again.
However, I did something really stupid on Friday night. A friend's dog tried to run out the door and, as a reflex, I lunged and grabbed it's collar. This is a really small dog, but the quick jump and overextention ripped a little piece of skin around the very top stitch. It hurt like heck! It bled just a little bit at the time, but stopped right away. Today, however, I noticed it had swollen up into a little bump. When I pressed on it, it drained for a little bit, but it appears to be better now. If it doesn't look like it's improving by tomorrow morning, I guess I'll go back and have the pros look at it. It's just the skin, though, my sternum still feels solid. I could kick myself for not thinking! But, sometimes we have to do something stupid to increase our awareness level. Everytime I do anything now it is with that top stitch in mind.
Mrozek - Glad to hear you're on the same path . . It's a great feeling isn't it? A month ago it would have been difficult to convince me that so many appearingly unrelated symptoms could disappear with one operation. Everyday I remind myself how lucky we are.
Welcome Gerry - You really need to hear from Storri/Cathy, she is the queen of all things calcified. I remember reading that she had a similar amount of ascites as a condition or her constriction. And, most of it has gone away since her pericardiectomy. I'll let her speak for herself, however, because I also know she has been on water pills for a long time as well.
Speaking from my experience, I was carrying about four liters of ascites when I went in for my operation two and a half weeks ago. It is all gone now. Have you ever had a paracenthesis (sp?) performed? Over the course of the past year and a half, I had my abdomen drained twice. One time they removed two liters, the next time they got out four liters. From a morale standpoint, it is great to live a couple of weeks with a "normal" stomach again, it shows you that your body is not in as bad a shape as you think it is. From another perspective, it lets you know how long it takes for the ascites to come back. In my case, it would return in two to three weeks, even with the water pills. But, boy, I sure felt better the week after it was drained off! And, the amount of time it took to return was helpful to my doctors who could better gauge the effectiveness of my medication dosages. One time after a procedure he doubled my prescription which really did a much better job controlling the fluid accumulation.
Please keep in touch with us and let us know how things progress at the Cleveland Clinic. You can bet we'll all be rooting for you. If past history is any indication . . .you will come through this in much better shape and with no regrets about having the surgery performed.
Teri - As always, thank you for moderating. I don't know how you find the time!
Scott
Post Edited (Scott D.) : 10/23/2005 10:18:11 PM (GMT-6)
I am embarrased to even put the link up for the article, as the reporter was so inaccurate in every aspect of the article it is borderline humliating. He was so negative, when he just went with me to my last appointment and my cardiologist gave me RAVE REVIEWS, and said I was doing great, he basically ended it saying I would need a heart transplant, he put words into my families mouth, twisted everything i said, and its the most inaccurate article I have ever seen, he said that MOST people DIE in the surgery, ( i had told him about all the SURVIVORS ON THIS SITE A MONTH AGO!!) I don't know if he did it for drama, but, it was horrible. I ask the reporter to be respectful, and if he photographed me in the hospital without makeup to please do it from a distance, I was on the front page, in the LARGEST PICTURE i have ever seen in my life, and he could not have found a worse picture of me if he tried, he said that our family is struggling financially to keep me alive, when, we just built a million dollar house, and we have insurance, and it paid for the entire surgery, we were out of pocket..ZERO. and worst part is, he put a quote in my friends mouth she did not say, and basically made it sound like she coaxed me into having surgery, when in fact, the reason i had surgery, was i had my six month MRI, and the ventricle was having trouble, and the doctors decided it was time, up until then, they said I was not symptomatic enough. They advised me to wait, up until that point, never at any time, did I go against any doctors advice and NOT have surgery, when I should have. This reporter is so bad, we had a going away dinner a week before we left, and he joined us, and he wrote that I was winded and could barely walk across the room, when the reporter drank so much, he PASSED OUT on the table, and after that, my friends and I went to the STERLING CLUB and danced, and after that to the WYNN hotel and gambled until four in the morning, as we had a room there for the night. Hardly a person that is so winded, they can't walk. BOY, that is the last time, I let a reporter in MY life again. The only accurate part was the ICU unit incident. TERI>>>It is MORTIFYING!! AS if my son's have't been through enough, now they are so embarrased over this!!! Cathy
Wow! This thread has been through a lot. It continues to grow with both new and old members and has become a place where sharing is at it's best!
I'm just starting to get so bored. (Of course, the minute I get wrapped up back in work I'll be longing for the days I could sleep and just do whatever I wanted!). As far as the overheating . . I think I am passing thorugh that stage rather quickly. it seems to have greatly diminished for now. Hopefully it's going away for good. I still have trouble sleeping though the night, but that's because these dang water pills make me get up every three or four hours. I do sleep so much better though overall.