Pericardiectomy

Thank you so much for your warm thoughts and wisdom, I can't even begin to tell you how wonderful it is to talk to someone that KNOWS about this and is educated, it has been so difficult going though this alone, I felt like I had the plaque, no one knew anything or knew how it felt.

i spoke to my local cardiothorasic surgeon and he said I am without a doubt in the early stages of cardiac tamponade, he said that is why I am experiencing the bi-atrial fib so often now.  I had chest pains all night long last night, and I am really getting tired.  I never knew I could be this young and feel this tired...

I almost have the boys journals done, I have worked on them for three years, and did two to each of them........one is a story of their life, and the other was a day to day chronicle from the day I was diagnosed.  Telling them what happened that day, something funny they said, etc.  Hopefully NO one will be passing them out!

ALSO, spoke to CLEVELAND this morning........they scheduled surgery for JUNE 8th.  CLose to sixty days away............why does 60 days sound so FAST????  Believe it or not, I started building a house three years ago, right after I was diagnosed, I thought it would be a great diversion; and boy was it....if that didn't KILL me nothing will!  instead of being in after eight months, it took the entire three years, and we just moved in three weeks ago.  I can't even believe what I have done...! 

The pulse in my neck is more intense, and when I lay on my back on the floor, I get this two large veins that pop out of my forehead...it looked like a V.......its so gross, well, now it looks like another ONE popped uP, and it LOOKs like a PEACE SIGN!!  Between the creepin crud on my heart, and the ugly veins, i am so ready to get this over with.  ALSO, I have weighted 115pds for the last 20 years.........I am 150 and I can't fit in my clothes, I feel BLOATED all the time, and MY stomach gets so rock hard it is freaky.  The doctor said my liver is swollen three breadths..and my mital and tri-cuspid valve are leaking...along with the bi-atrial enlargement.  They told me the right ventricle is CAVING in due to the weight of the calcification, he does not know how it will react when they lift it, but if my heart fails, they can put me on a heart pump and hopefully get me on a heart transplant list, I just PRAY it does not come to that...I am ready to go; get it off, and come home to my BABY BOYS!  I have twin son's, that I had to fight to have.  They are invitro twins, and now we KNOW why they came so early.  So much makes sense now.

THANK you so much for YOUR advice......if you guys know of a GOOD SURGEON in the California area......please let me know...Cleveland is SO far away......hugs, Cathy

Dear Teri,

thank you for your warm thoughts and prayers, they are so appreciated.  I was terrified to have surgery; and now after reading from this forum, I have found the courage to go ahead with surgery; and Cleveland has booked it the first week of June.  So, I am finally going forth.

I will keep you posted on the week to weeks...trying to stay off my feet, and spend as much time as possible with my children...my faith is now in Gods Hands....

God Bless you!

Cathy

Kurtiss, Welcome to HealingWell!!

Thank you so much for sharing your surgery and recovery with us!  I know it will help many others getting ready for their own surgery like this, so thank you again!!

I'm happy that you are feeling better and your story will give others hope!

Best Wishes, Teri

nearer!!

Teri

well Nan, they are pretty sure on the bypass machine, with between 16 to 18mm's of calcification, they mentioned concern with scraping that much off...also, it is adhered to the myocardium, so he said they have to try to get between the calcified pericardium and the myocardium without puncturing the heart...

They did not mention the robot.  I have heard of that though.

I really have faith in Dr. Lytle, and after traveling too so many doctors around the country, he seemed to be the best.  I also went to Texas and saw Dr. Delgotto, he was well informed as well.  Everyone thought it best that I go to Cleveland, if my heart fails becuase of the collapsed right ventricle, and I have to go on a heart pump, I think my best chances for a heart transplant would be Cleveland.

The cardiac tamponade has me a bit concerened right now as well.  I never dreamed I would wake up at the age of 42 and be going through this.  So much to swallow.  I hate putting my teenage sons though this, and worry so much about them....

The local newspaper that wrote the three articles on me will be traveling with me for the surgery.  I was a bit abrehensive about that, but since the condition is rare, I thought it might help someone that is going though the same thing, and it might help to educate them.  That was one of the hardest things...living in las Vegas, no doctors here were familar with it, and it was so frustrating..

I am so thankful to have found you guys....and you have all been a pillar of support....Nan, thank you so much for the information....do you think I should check into San Fran and the doctor there?  Living in las Vegas, it would make life so much easier to have the surgery in san fran versus cleveland.

Teri, your warm thoughts and wishes have meant so much to me, you are such a caring person...

Time is a ticking, and I have been working on the boys journals daily...it won't be long now, and this will all be behind me..

God bless all of you.....I am so THANKFUL to have found all of you....before this, I felt so all alone...

the only story I knew, was the guy that had a bad experience and is not doing well.  YOU have all given me inspiration and courage to go forth....

your friend,

Cathy

I would love to read the article on you as well...as this condition was only brought to my attention a few months ago, I virtually knew nothing about it.  It has been through people such as yourself and some of the others here that has brought this into the limelight, if you can call it that and I think it's wonderful that you are allowing us to question you as well as ask us for support and answer our questions.   

I think you are a very brave woman, facing a very awesome procedure.  It would seem that you've done your research and that you are in very good hands at this point!  I can understand the questioning and wondering on your part, but if as you say, you've been all over the country and found a safety net at Cleveland Hosp. then I think you've found yourself a place to call your temporary home.    May not be the one you envisioned many years ago, but it seems that you found it to your liking.

You and your sons are so lucky to have this time to be able to share with each other and when you come through all this surgery you all will be able to sit back and just enjoy one another's company in peace and solitude for a while and perhaps put life a bit more into perspective for all of you!

You know we're here in our own little cheering section, wishing only the best for you, Cathy!!   Be well.

Hugs from Texas, Teri

Teri and Nan,

THANK you both so much for caring, honestly, had I not found this site, I may have postponed surgery again...Nan, seeing YOu go through it and coming out the other side has certainly helped me so much I can't even express....when I was first diagnosed with this, I typed pericardietomy and did a search and found nothing.  SO, I had not tried again in over two years.  Late one night, I decided to try again, and low and behold here you all are...........what a GOD SEND you have been.  PLEASE know this......your words and stories are what I needed to give me the courage to go though with it, and in a sense will save my life.  The only story I had known was from one, that did NOT do well after surgery, and the stats Cedar Sinai had given me..that they had done four...two lived and two died...so needless to say I was shaking in my boots. Teri, you are such a caring soul.... SO this site and all of you are an INSPIRATION!!  GOD BLESS YOU ALL....your angels indeed!

love you!

Cathy

We had another member several months ago, that had a landlord that had pericarditis with calcification and I believe he was about 70ish.  He also needed some valves repaired as well.  I know from following his story before, during and after his surgery, that even at his age he did very well!  They had to scrape the calcification from his heart, too.  I've gotten in touch with them and hopefully she'll return and let us know how her landlord is doing now!  I just wanted you to know that there are others out there that have had positive experiences with this procedure.

Big Hugs, Teri

Anyway, he was under for around 6 hours because the calcium was so bad..and they fixed a hernia at the same time!!   He does not get dizzy anymore when walking up the stairs, he does not get short of breath anymore and he can walk!!   Although Dave has been a bit lazy in the last little while, we were very religious about getting out and walking every day.  Very important to walk.  Now he is out playing golf sometimes 2 rounds a day...(par 3 course).

I figure that if a 79 year old man can go throught this surgery, anyone can!  My brother used to work at the Cleveland Clinic - couldn't ask for a better place....so good luck and do not worry.   Dave also had thata weird fluid between the calcium and the heart...strange stuff!!   I will keep a close eye on this site...in case you have any questions.

Michelle