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Pericarditis & Pericardiectomy Part VIII

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Posted 10/26/2005 5:00 AM (GMT 0)

Hi all...

Ernesto...I'm sending positive waves across the waves to you!  Hope it all goes well...I will be anxious to hear all of the details!

Cathy...Sorry you are not happy with the article...I also read it and thought it was good.  Try to ignore the little misrepresentations and remember the larger gift you are giving to those people out there who are wondering why they feel like crap and those who are waiting for surgery and those who have survived surgery!  There is not enough info out there...we are all too aware of that...and you have sacrificed a great deal to contribute to the knowledge base of the lay people.  I for one really appreciate you doing that...thank you...and it just reaffirms my thinking that you are a hero.  My take on the article was that it was informative and personal.  We can all relate to the personal toll that this wonderful condition can have.  And...if you looked that good BEFORE surgery...life is just not fair :)  Thanks for sharing your story with the world...no doubt you have already encouraged and given hope to many!

Mister...hope you are feeling better.

I've been too busy and am ready to slow down.  I had my recheck with my hematologist this week...some of you may remember that he was the one that finally figured this out for me after ruling out non-Hodgkins lymphoma and liver cancer and lupus...anyway, he had found that I had a vitamin absorption problem that put my protein C way too low...a big clotting risk.  I supplemented with vitamins and all was well.  Anyway, he was saying this week that he thinks that could have been secondary to the constrictive pericarditis...isn't that interesting?  Maybe I don't have a blood disorder after all!  No harm in me taking a multivitamin but I just find it amazing how that body shuts down when a major player is hurting...anyone else have info on this?  Mister...wasn't it you that had also seen a hematologist before your dx?

I better hit the hay...midnight already.  More later, friends...

Nan 

Posted 10/26/2005 5:32 AM (GMT 0)

Hi Mrozek,

I must tell you that the main reason I went to the Cleveland Clinic and Dr. Klein was because of all the positive information that was posted here on this site from all of your experiences. 

My cardiologist in NYC wanted to do another cardio cautherization (I had one done last Oct.) with the thought, I guess, of having the surgery there.  I wanted a second opinion, and after reading all your reports about the Cleveland Clinic, I wanted to go there if I had to have further testing done. 

Dr. Klein was all that you said about him and more.  In fact, one of the tests that I had done--a transesophageal echocardiogram--he did himself, which I think was unusual because of some of the comments the other dr's. and technicians made.  As he was doing the test, he showed me the calcification around my heart. 

He took the time to explain everything to us and what the surgery would be like.  I was impressed.

I'm happy to hear you're doing so well.  Take care.

Gerry

Posted 10/27/2005 3:06 AM (GMT 0)

Hey, Nan.  Yes---it was me who saw a hematologist.  In my case, my red blood cell count was higher than it should have been.  (This was happening b/c my body thought it wasn't getting enough oxygen, and so it started making more RBCs.  Cool, eh?)  My protein was off, too.  Anyhow, everything is back to normal now. 

Scott & Mrozek---onward and upward, brothers!  Very good to hear you're doing well.

Cathy---hey, whatever happens in Vegas, stays in Vegas, right? cool

Bubbe: Man, I can't hardly believe that you were lucid enough to look at stuff during your TE.  I was almost totally out of it, only barely aware enough to know that there was something down my throat...  redface

Anyhow, hope everyone's well!

---Mister S.

Posted 10/27/2005 11:43 PM (GMT 0)
Dear Bubbe,

I went to Cleveland from California. I could have had the surgery here, closer, less expense. The main issue in my mind was that this is a rare surgery, a "once-in-a lifetime" event.... few surgeons have actual experience with it... Cleveland was one of the few places in the US where they still do hundreds of pericardiectomies... (Mayo is another one..)

I thought if something goes wrong during surgery.. I have a better chance at Cleveland than here in CA. In a way, "I was hedging my bets" with Cleveland.... fortunately, my surgery was uneventful and hopefully I will fully recover...

Good Luck... (by the way, I'm somewhat sceptical of the medical profession based on past experiences... I must admit Cleveland impressed me)
Posted 10/28/2005 7:12 AM (GMT 0)

The article was inaccurate from start to finish, except for the journal entries and the ICU incident.

He basically said I was a financial burden to my family, when we told him my insurance covered 100%, he ended it by saying I would need a heart transplant and put the words in my mouth.  HE did it to everyone in the article, and its not just me that is upset, but everyone included in the article, it was POORLY WRITTEN and completely embellished...he said I was WINDED at DINNER< He drunk before I got to the restaurant, and was NODDING OUT at the table, and passed out on the table before his dinner arrived........it was really bad, my family is humliated as are my friends that were misquoted, as well as myself.  When you have something written about you, in your HOMETOWN newspaper, you want it to be accurate, I would not be upset if there were just a few things EMBELLISHED< but almost the entire article was.....I sent a letter to the EDITOR, and we are working on a retraction, they feel horrible that he did this.  The guy was so forgetful, he would call us over and over and ask the same questions, to the point were my friends and family were getting angry at him.  I think Mrozerk, if he wrote an article about you, that was false, you wouldn't be happy either...I spoke with DR. LYTLE< and he is NOT pleased either, and I can't blame him, its like he just wrote his own thoughts, and didn't want any positive in the article, it was COMPLETELY NEGATIVE...I view the surgery as a SUCCESS.......he does not, and that hurts...really hurts...anyway, hopefully the retraction will come out correct, then I will be happy.  GOOD GOD< he said that my husband said, "that keeping his wife alive is a financial burden"....that couldn't be farther from the truth, I had a two thousand dollar deducable, and the rest was paid at 100%, it didn't cost us anything...anyway, I will get past it, but, I do want the truth written.  I don't think its fair for people to read this, that are thinking about having surgery, and thinking everyone dies from the surgery.  I TOLD him about ALL OF YOU; and even wanted the SITE MENTIONED< he wouldnt' do that...that was too positive, he only wanted negative.  AS I SAID< he went with me to my last appt a week and a half ago, and MY DOCTOR gave me an EXCELLENT BILL OF HEALTH and said the surgery was a success...he left that out of course.....UGGGGG....Cathy

MISTER< you are a crackup..........I certainly hope that is true...LOL...I HOPE its stays in vegas........I have been lucky so far, most people I know MISSED IT.......so that is cool....

Posted 10/28/2005 7:14 AM (GMT 0)
Nan, thank you so much, you really made me feel better.  I just hope the article doesn't scare people from having surgery.  I feel like Dr. LYTLE was a fantastic doctor, and the surgery WAS a success, I wish he would have told the truth......BUT, thank YOU for making me feel better, that was very very sweet of you to write!!  your friend, Cathy
Posted 10/28/2005 7:18 AM (GMT 0)

Bubbe,

I also had surgery before Mrozek did at CLEVELAND, and actually encouraged him to go there...Mrozek is correct, if Klein and Lytle feel you need surgery, you really should go, and I have to tell you, you couldn't be in better hands, Dr. LYTLE is one of the most professional and skilled surgeons I have ever seen.  MY LIFE has CHANGED SO MUCH, I was packing 30pds of fluid, my neck vein was HORRIBLE, and I had ATRIAL FIB all the time, I was one of the worst, most challenging cases they had ever seen.  The resident surgeons told me they had NEVER been surprised in surgery, and they could NOT believe how constricted and calcified I was at 11mm's.  I NO longer swell, the weight is GONE, no more rapid heartbeats, my neck vein is normal, and I have had MORE ENERGY now than I have had in three years...BEST GIFT YOU CAN GIVE TO YOURSELF.........I am so happy I did it!!

BEST WISHES!!  Cathy

Posted 10/28/2005 7:30 AM (GMT 0)
SCOTT SCOTT SCOTT>>>>thank you too!!  Your compassion really made me feel good, you are a wonderful person, and I am thankful you understood exactly how I felt.  The last thing I wanted was a negative article that would scare people from surgery.  I knew he would write details about it; and that was fine, it was all the negativity and DRAMA, in a situation that I felt had enough drama, it didn't need to be embellished anymore than it was....Thank you for you kind words and understanding...you all hear are great.......literally from the time I found this site until today, you have all been such a tremendous amount of support.  I wish you all the best, and know, that I am ALWAYS IN YOUR CORNER as WELL>>>>as far as the photo's, being a real girlie girl, the photographer had made a promise to me, that he would be respectful with the photos...he lied to me of course, and I had asked him repeatly, if you have to take photos of me without makeup, or going into surgery or after, please do it from a distance, he promised me, and did the opposite.  ITs not the point of being competely vain, I just feel a promise is a promise.. instead he took the worst photo and BLEW IT UP, it was 16 x 10 on the front page, I don't think you can get a clear view on how horrible it was unless you got the paper, on the internet, you can only blow them up so much..ON THE FRONT PAGE>>>MY FACE WAS THE FRONT PAGE>>>it was horrible, it looked like my lip was deformed, this guy took hundreds and hundreds of photo's, and he picked the worst one, almost like he tried to hurt me.  Between the reporter and the photographer, they both lied; and betrayed me and my family.  what hurts most, is they hurt my children...they are 14 and being 14 and being referred to as a speciman, was the worst, they are humliated, I have tried to hard to make it better, but all their friends saw it.  Its been a difficult week for my entire family and friends.  He took every thing they said and twisted it.  He basically lied throughout.  NOT real smart for a reporter too do...BUT again, I really appreicate your understanding and compassion, it made me feel good that you understood, thank you for that.  your friend, Cathy

Posted 10/29/2005 4:02 AM (GMT 0)
Hi Mister S:

I had never had the TE test before.  Dr. Klein had added it to my schedule and when he explained that they had to go down my esophagus I didn't know what to expect, plus I had the whole weekend to worry about it because it wasn't scheduled until Monday (we had to stay in Cleveland over the weekend).  It wasn't as bad as I expected.  After having so many tests over the years I guess I'm beginning to become immune to them.  It's a wonder I don't glow in the dark!

Gerry

Posted 10/29/2005 4:18 AM (GMT 0)

Dear Mrozek,

Your right about the Cleveland Clinic--I was very impressed how everything was run and how efficient they all were.  The place is like a maze.

I haven't met with Dr. Lytle yet, only Dr. Klein.  Dr. Klein's office called me 2 - 3 weeks ago and said their report was going to Dr. Lytle and that their office would be contacting me in about 3 weeks to schedule my surgery.  They currently were scheduling for mid-December timeframe.

I tried to postpone until May but Dr. Klein said no.  I was hoping to drive to Cleveland as it's only around 6-1/2 hrs. from here, but I don't think we can chance it in the winter.  The mountains can be treacherous in the winter.  I know you came from a distance--were there any restrictions on travel.  Was it okay to fly?

Take care,

Gerry

Posted 10/29/2005 5:24 AM (GMT 0)

Hi Cathy,

Like you, I've had this condition for many years although I was just diagnosed last December.  I wound up with a pacemaker back in 2000 when my heart was racing so fast and then drop so low, which was probably caused by the calcification.  Maybe if I was diagnosed back then I wouldn't of had to have a pacemaker put in.  I'm just really concerned because of my age.  Everyone is so much younger than I and all have seemed to bounce right back.  It might not be so for me--let alone the severity of the operation itself.  I am worried.  I know, my husband keeps telling me to think positive, but it really is hard to do.

I'm so happy that you're doing so well--I've read your posts since before your surgery so I know what you've gone through.

My best to you,

Gerry

Posted 10/29/2005 9:36 PM (GMT 0)

Hey Gerry!

The tests can be annoying!  I refused the test down the throat!  I was too big of a chicken, I heard later its not that bad, I just could not stand the thought of something down my throat while awake...a phobia I have.  I flew from Las Vegas to Cleveland four years ago; and met with Klein, he told me I could wait a year, and I did, went back; and he said that I could have surgery, but, didn't have too.  This last time, it was critical, and I need it badly, as my ventricle was being affected.  The surgery was not that bad, being a women, if you don't want them to go down the sternum, they went under my breast, and in between the ribs, that is something you might want to discuss with Lytle if your interested.  I didn't want that narly scar down the middle of my chest.  My scar is really no worse than a breast augmentation scar, and no cracking of the ribs.  That really helped give me more courage to go forth.  Lytle is the best, no doubt about it.  Klein is as well, he is very know, and the only pericardial expert i could find, and I searched everywhere.  You are in good hands.  I would not worry about your age, i think that its all in the hands of the surgeon, and going with Lytle, is the best bet, he has done 103 of them, and that is by far the largest stat of any surgeon.  You will do good, my prayers are with you!  Cathy

Posted 10/30/2005 1:39 AM (GMT 0)
What do you mean? Where is Teri?
Posted 10/30/2005 2:22 AM (GMT 0)
Yes...Please explain!

Posted 10/30/2005 4:02 AM (GMT 0)
Post removed

Please see Forum Rules HW does not allow advertising

Post Edited By Moderator (~Jennifer~) : 10/29/2005 10:10:37 PM (GMT-6)

Posted 10/30/2005 4:06 AM (GMT 0)
Cathy....I hope she's okay. I noticed that she hadn't posted anything for the past week and that was so unlike her. She was always on top of everything. I know she had a lot of health issues, hopefully nothing is wrong.
Posted 10/31/2005 5:57 AM (GMT 0)

Dear Bubbe,

Well, I had the first night at ICU and 3 extra nights in the hospital... (some stay 4 or 5 nights max.)..

We stayed the weekend - extra 2 nights in Cleveland... and I had no problem flying.. in fact we even changed planes with a 3 hour layover... total travel time was 8 hours... absolutely no problem.

You'll be fine... when they release you, you are ready to fly...!!

Good Luck!!!  (We actually had a "little vacation" in Cleveland before my surgery, we got lucky with wonderful weather in Sep and had a good time)

Posted 11/1/2005 9:36 AM (GMT 0)
thanks jennifer, I think I pretty much get it now.  I didnt understand that we were unable to do that.  I get the picture now; and will be a good girl.  btw, welcome to our site, we are glad to have you; and I am so sorry for the loss of your son.  sincerely, cathy

Posted 11/1/2005 9:41 AM (GMT 0)

Gerry,

I am glad my posts helped you, I know all of the ones prior to me, helped me as well.  I have been meaning to ask you, how thick is your calcification do you know?  Have you decided to go down the sterum or go under the breast?  I wish you all the luck in the world, and as i stated earlier, do not even sweat the age, you are in such good hands with Dr. Lytle, I had gone to Cedar Sinai, Mayo Clinic and to Cleveland and he was by far the most impressive for me, I know that Mayo is incredible too.  The nurse and other surgeons worship dr lytle he has quite a reputation, and he LOOKS like ALBERT EINSTEIN as well...i think as intelligent as well...they told me his whole life is that hospital, and from what I saw.  ITS TRUE...you will be fine, so far, everyone on here that has had this surgery has been a success......YOU ARE NEXT!  Cathy

Posted 11/1/2005 9:45 AM (GMT 0)
one more thing Gerry, you will never find a hospital that does hundreds of pericardiectomys, because the procedure is rare, but I did find out that in Dr. Lytles career he had done 107, which is incredible, Cedar had only done FOUR in the history of their hospital; and when I visited Mayo two years ago, there entire hospital had only done 45.  So, I think between Mayo and Cleveland those are fine numbers on a condition that is considered very rare....Cath

Posted 11/2/2005 7:08 AM (GMT 0)

Hi Cathy,

I don't know how thick my calcification is.  Which test actually measures the thickness?  As I said before, I've had the Transesophogeal Echo, Echocardiagram, and a Cardio Cautherization.  Dr. Klein said that out of 10, I was a 4 - 5 for severity and that I needed surgery.  I did get a copy of his report of all my tests, but I didn't notice anything that listed the thickness.

I don't know which incision their going to use--under the breast or sternum.  I haven't given them a preference as yet, if I have one.

I got a call today from Dr. Klein's office and their going to schedule my surgery for after Christmas or the beginning of January.  No definite date yet.  I might be better off going in right after Christmas and having it done in 2005.  I have to check with my daughter because she will be going with my husband and me.  She may have the week after Christmas off from work.

Thanks for all your support.  I really appreciate it.

Gerry

Posted 11/3/2005 7:27 AM (GMT 0)
Hello everybody,

I have not posted any messages lately. But I have been reading some of the posts. I have tried to put everything behind me a little bit.

I had my pericardium removed just eleven months ago. By the way I live in Christchurch, New Zealand, that is far down in the South Pacific!

I have been doing quite well. I still have a pacemaker of course, because the atrial fibrillation has been chronic. But I no longer have to use a diuretic which is a blessing. Also my weight has come down considerably. No fluids in my lungs any more. My liver is now of a normal size.

In my case the origin of my condition is also not quite clear, the cardiologist suspects TB, but it might also have been an auto-immune response to whatever infection. The specimens collected did not give any clue.

Because I am still in atrial fibrillation my energy level is not great, but I can walk and bike short distances.

By the way, my surgeon had only done a couple of pericardioectomies in his entire career.

I know that anybody who will have this surgery will have some fear and trepidation. But not having the operation will be a life of misery.

I wish everybody much good fortune and much strength.

henk

NZ
Posted 11/3/2005 7:20 PM (GMT 0)
Hi there again,

My heart surgeon cut through the sternum, the recovery was not that painful, but even after almost one year I can still feel it is not the same, but there is no pain of course. I think that going through the sternum is the usual technique, but there may reasons for cutting through the ribs.

The layer around my heart was about 3/4 of an inch, the thinkness could be estimated from the CT-scan pictures but it will only become clear during the procedure.

In my case almost all of the pericardium was removed, the process is difficult and has to be done very carefully. Only some near the top of the heart remained. I was lucky that my heart went on beating, the blood was not shunted through a heart lung machine, I think that had an enormous impact on my speedy recovery.

Best wishes

henk

NZ
Posted 11/4/2005 6:51 AM (GMT 0)

Gerry,

There are two test that can measure thickness, and i believe you have had both, so you can just ask Klein.  The cardiac cath shows thickness and so does the MRI/or Cat Scan.  I would just ask him, as that really tells you where you sit.  Dr. Lytle is out of town right now, and will not be back until the 8th, he just sent me a letter asking me how I was doing, and his office called me a couple weeks ago, so its pretty cool he keeps checking in with me.  i was surprised to see him do that.  If you have a new dedutable at the end of the year, it would be good to do it this year, because you would not have to pay that before you have surgery.  Remember the recovery is fast, everyone I have spoke too, including myself has been released in five days.  Unbelievable.  ANd, I have said this before, and I will say it again, MISTER was 100% on the mark when he said, when they remove the tubes...its all downhill from there....he was so right, so the first night is a bit tough, after that, piece of cake.  I was walking two hours after I was released out of ICU.  Just ask Doctor Lytle when you see him if you can have either the surgery with the sternum or the thoractomy.  He can describe both too you; and then you can make your own decision.  Being a girl, I didn't want a scar down my chest.  Men don't seem to mind as much...I was thankful Lytle did them, and so far, the only surgeon I know that has perfected it.  So, I am sure he will offer either way too you.  Do not worry, you will come out feeling so good, you will wonder why you waited, that is certainly how I feel.  Somedays I am amazed as it hits me that I haven't swelled in three months.  I can't even FEEL my heartbeat........which is amazing, and every day, I have more and more energy.  I traveled to a lot of hospitals, and interviewed a lot of surgeons, and doctors, Lytle and Klein are awesome, you are in good hands!   I just sent a new girl to him with the same disease..Wendy, she contacted me via the newspaper article, she met with Cleveland, and is having surgery in a few weeks...  GOOD LUCK TOO YOU!!  Cathy

Posted 11/4/2005 11:37 PM (GMT 0)
Hi Guys,

I just had my 2 mo post-op review... passed with flying colors...

I still have to clear my throat sometimes... good ol' tube... I'm doing much better. The recovery is truly amazing... feeling better and better every week... starting cardiac rehab soon... hope to be back in shape in a couple of month... I expect full recovery.
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