Pericarditis & Pericardiectomy...Part VI

Hi Teri ,
thank you for your welcome i have not found a surgeron or Dr. that can do this with out insurance. any siggestions where to have it done or who can do it i would really be appriated thanks.
Hi Nan,
i'm glad that your percedure went well i have been looking at the university mn or mayo to do it if any one has any information what kind of surgery or recvery systems i may have ,i had shortness of breath tightness in the chest,dizzyness , fluied in my lungs like i had broncitius,you know what i mean? thanks Shay

Hi Shay,

I myself do not suffer from pericarditis but my boyfriend does. And in his case it is recurrent pericarditis, not constrictive (though recurrent can develop into constrictive in some cases). Whatever the flavor, pericarditis is a frustrating condition, and doctors don't always have the answers we are looking for. Add to that, insurance is a serious issue. I'm not sure what programs are available, but I would assume that there are programs you qualify for. I'd take Teri's suggestion and contact Mayo, and then there is also the Cleveland Clinic (those two hospitals seem to be the winners for all the constrictive sufferers in this forum). Additionally, I'm not sure where you live, but if you are near some very big universities with well-known heart centers, it couldn't hurt to try and find someone there. I am in Los Angeles and we visited with UCLA, for instance.

Please do your best to get the help you need! You sound like a very nice person and we don't want you suffering any more than you already have!

Keep us posted on your progress...

All the best, Maya

Shay,

I'm very sorry to hear that you've been afflicted with this nasty syndrome, but I'm glad that you found us.  Teri is entirely right re: age and heart trouble.  I had a pericardiectomy (or "Heart Peel" as you call it---a classic, by the way) on May 31st of this year, and I've got Nan beat, because I am 26 years old.

about your earlier question regarding what to expect....  Well, everybody is a little different.  I'm assuming you're asking about the surgery itself?  Some of us have had sternotomies (i.e., we were split down the middle and opened up like oysters), and some of us have had (I think) thoracotomies, which involves an incision below the breast(s).  The healing, depending on obvious things, such as your general health and age, also is different depending on the cut.  I've heard that the thoracotomie is more painful, but you recover from it more quickly, and the scarring is less extensive...  But don't quote me on that!

In any case, a few of us have written 'play-by-play' accounts of our recoveries.  Pay particular attention to the ones written by Nan and Storri (aka Cathy).  Nan holds a special place on this board (and in my heart---no pun intended!) because she was the first one to write a detailed, specific account about this procedure.  (I.e., she discussed how many tubes and lines she had coming out of her body when she woke up, etc.)

So, I guess this is just a rough sketch...  Do you have some more specific questions?  Doubtless it would be reassuring and helpful for you to read the old threads...

And again, glad you found us, best of wishes to you, and I hope you feel better soon!

Regards,

Mister S.

Hi Maya,
Thank you sooo much on the information on the Mayo clinic this will be helpful,
Rodchestor i hear is a great place to have surgery and Cleveland i hear is a good place to have it as well...
I live in Durango Colorado about 700 miles from Denver...I guess i could check into it in Denver as well i wonder if the Dr.s are good there? Never hurts to check it out right ....
I heared Arizona is a great place i guess i have lots of opitions huh he he he...
Lets all keep in touch and god bless you all!!...Thank you Shaylynn.


Hi Mister S.
Yes i am sorry to get this Terrible syndrove since i got it from Radiation when i was 12 i am 44 now going on 45 in dec.23rd...It makes you wanta ask the dr. what were you thinking back then? Maybe they did not know?
I guess i have to deal with it now i needed the radiation to live back then...
I wants thank everyone on me reading the old threads this really does help alot to ease my thought and not just wondering what to expect...
Like i had said before i am scared but like others have said its only natural with everyones pryers will make it easier ...Thank you so much for your insites and suggestions lets all keep in touch..Shaylynn




Hi Nan Thank you for your information on the Cleveland Mayo as well i will check in to this as well.
I did look at the thtreads I-VI,
They are very comforting to read now i feel much better ,so when i come out of surgery i won't freak out...
And i will understand the hurts and Teri thanks for being such a caring person and all your help it seems everone speaks very highly of you!!! God bless you and everyone else Shaylynn

PS Mister, yes, you beat Nan in age! ROFL Big Hugs, Teri :)

Cathy, it's been a whole page of a thread and I haven't heard from you - I do hope it's cuz you're feeling wonderful and out enjoying life!

 

Hugs, Teri

(((Cathy))), I am so sorry that you are still feeling so badly!!  Are they telling you to stay in bed yet!?  Are you able to move around some?  You have to keep moving, sweetie!  What are you being told?

 

Please take care and I wish you all my best!!

 

Love and Hugs, Teri

Hey, Cathy.

Good to hear from you, even if you're not feeling so well.  RE: your question about the scar, I know that some people try vitamin E, and then of course there are all those scar-specific creams and ointments, like Mederma.  I guess you could try that...  When I was discharged from the hospital, one of the surgeons had me taking vitamin A and zinc, which he said was a "trick used by plastic surgeons" to help with the healing of scars.  In any case, my scar looks fine.  Sort of reddish/purplish.  Some of the ketoidal action going on.  So it goes.

about the breathing---I'm about to hit my 13-week mark, and I will still get a little short of breath going up stairs and so forth, but overall I feel almost 100%.  At eight weeks, just like you, I was having some difficulty breathing.  I was having intense palpitations too, so I went to the doc, where they took and x-ray and an EKG.  With me, I for some reason had a problem with water accumulating in my body.  My shortness of breath was caused by pleural effusion, and so my cardiologist put me back on Lasix.  In any case, I feel better now.  My CT people told me that I needed to give myself anywhere from 3-4 months to heal completely.  So, unless I'm in excruciating pain or something like that, my impression is that I'm supposed to just take it easy and not worry too much.  (Worrying is bad for one's health after all, right?) 

I don't know if going through all of this makes us more mature...  In fact, I sort of doubt it.  It changes us---there's no doubt about that.  But how / why/ and in what ways, I can't really say.  Nan has said that she feels like she's got a new, energized outlook on life, but I can't really say that I feel the same.  What I can say is this:  I am grateful for my health, and I'm glad to be alive. 

Best wishes, and feel better soon!

--Mister S.

Teri!!!  SO nice to hear from you.  I am not staying in bed around the clock, and do get up, infact, I went to the Mall last week for the first time in FOUR years, I was like a kid in a candy store...but, I did tire easily. I think Mister is right, in his comment about taking three to four months to heal completely.  That makes me feel better, I think I was in to big of rush to get better.  {{{{{Ter}}}}}

SHAYSHAY...I honestly did postpone that long, I felt so alone, and scared to death I would lose my life in surgery.  Finding all these guys here literally gave me the courage to go forth with surgery; and it was almost like they were all with me, talking to them let my mind know that I can survive this surgery. AND I did!  As far as fixing two valves during this surgery.  Cleveland and Mayo CAN do that.  They talked about doing it with me, I have a moderately leaky mitral valve; and tricuspid valve.  I am not sure how severe your calcification is, but mine was the worst they had ever seen at 12mm's thick.  They told me the mortality rate was high in surgery, so they chose not to repair the valves, but only because my case was so bad, it had grown into my heart muscle; and was the worst case they had ever seen.  leave it to me to have the record on something bad!    YOU will do great.. keep the faith, you are already smart, and know to go to an experienced center, and you will end up like all of us...with it behind you, and living life, without that black cloud hanging over your head< i used to say I was eeor..from Winnie the Pooh..with the rain cloud... MISTER..I was told cocco butter?  have you heard anything about that?  And what is ketoidal action?  I am not having so much trouble going up stairs, but, taking a deep breathe, I get this sharp pain under my left ribs, do you think that is normal?  ALso, they did an epidural cathertor in my back, and there is a bump there, and when my son goes to rub my back, if he touches that area, I am like a cat, and almost hit the ceiling.  It worries me some.  When I go to yawn, which you take a deep breath when you do..this pain hits and I can feel its my ribs, did you all have physical pain in your rib area when you yawned or took DEEP breaths to the point where you grab your ribs and hold on for dear life?  I think you hit the nail right on the head...this does change you.  Facing death as we all have will change anyone I guess, I think we all appreciate life a lot better than most, and I believe we change the lives around us, I had friends and family that used to whine about everything, and when they saw what I was facing, they all changed themselves, and understood the little things do not count.  I still say you speak like you are so much older.  I know guys your age, and you do not sound like them, you are extremely educated and grounded and VERY mature.  You have been an inspiration, as well as my girls, Teri and NAN!     are all survivors, and no one and nothing can take that away, being wheeled into that operating room is something that will never leave any of us. Cathy

Hi everyone! 

Cathy...good to hear from you again...I was starting to worry about you!  I agree with Teri...you should see a doc about that pain...or at least call your doc and ask.  You had different nerves etc cut than I did.  I had tightness yawning but not in my ribs...more down the middle.  Coughing was also a treat.  I have heard pure aloe and vitamin E help with redness of scarring...I have not been great about putting it on...I have not heard about a specific procedure to rub it out yet but may look into it someday just for the top part so I can wear V-neck shirts again.  My scar at that point is red and quite raised up.

Mister...13 weeks!  Congrats!  I've heard not to try to analyze yourself too much til 6 months.  I felt a lot better at 6 months than I did at 3...that's for sure.  Keep on healing!  I agree with you about appreciating health...and maybe that's what I mean about my new outlook.  My husband and I walked around Chicago about 5 miles a day a few weeks ago...and I can still get all teary just thinking how glad I am to be able to do that!  I couldn't go a block without feeling strangled for the longest time.  Just makes me so thankful...

Shay...there is a Mayo in Phoenix...that may be closer to you...???  My surgeon was Hartzell V. Schaff...he was great...I'm positive he could do the valves and the pericardiectomy...make sure you ask about experience and get specific..."how many of these procedures did you do last year?"  Very important.  Welcome to our support group here....a good place to be.  We'll get you through it!

Better hit the hay...always nice to check in with you all...

Nan

 Mrozek, I'm continuing my positive thoughts and wishing you all the best!!

 

Hugs, Teri

xoxoxo

Hi Shay!

It's great to hear from you again! Sounds like you had a nice weekend, I'm glad that you are able to get out and enjoy things!

 

You take care and keep us posted!

 

Hugs, Teri