Pericardiectomy - Part II

Hi Betsy and Nan and Cathy!!

Whenever a thread gets too long, it automatically gets locked-it's still there, but we just aren't able to post on the thread as it's way too long and a bit hard especially for someone new to follow it all...it this happens again...just start the Pericardiectomy Part III, okay?  Then everyone should find it!

Cathy, I've never walked a minute in your shoes, so to tell you to do something, or not to do something, I'm unable to do.  What I would ask you though, is this a subconscious way of backing out again?  Just wondering :)  -Don't make this harder on yourself than it already is-you can continue to 2nd guess yourself til they are unable to do anything to help you!  Though with that said, if you wanted to send your info to them, I'd see no harm in it, but I can't see you canceling yet again.  I do know this is the scariest and hardest thing you've ever done!!

I've heard of the nanobacteria...but not enough to be able to spout off anything much about it.  I do believe there still is controversy whether it's there or not...Anyone else??

Please take good care of yourself and stay in touch with us, we'll be right here for you!!

With big hugs, Teri xoxoxo

Not in a million!!  I would NEVER cancel surgery, I was just worried that I may have found a better surgeon and since I had been to SO many places I hoped that I picked the right one.  you know Nan, Dr. Lytle would never tell me how many he has done, he would tap dance around the questions, and I would guess the reason being that he has not done many, but that will be the case with everyone I found.  When you have something rare like this, you will never find a surgeon with a ton of experience.  I was like a dog chasing my tail for two years trying to find that "surgeon" that had done a lot of them.  They don't exist, and i realize that now.

When I had my last MRI and they told me my right ventricle is caving in, and that I had the cardiac tamponade, they told me I was at the point of this being a "life saving surgery" , they told me that I would be in the hospital one of two ways, the other being on an emergency basis, and being that I live in Las Vegas, and we have THE WORST doctor's on the planet here, they DO not want me getting into trouble here....I don't know if I told you guys this or not, but I saw about ten heart doctors here..one had the nerve to say, "well, I have done about fifty of them this year, and if need be, we will just roll in the ole heart lung machine", needless to say, we bolted out the door.  HE said he had done FIFTY this year, when CEDAR SINAI had only done fOUR in the history of their hospital!  It was just in the paper the other day how a man when into UMC here, to the ER and they turned him away and he died in the parking lot.  A month ago two girls were hit by a car, and one girl died, and the other girl was hurt badly.  They released her after about two weeks, and she was still feeling really ill, so the father brought her back to the ER one evening, and they sent them back home, she died that night at home in her sleep. All anyone can explain is the medical malpractice insurance sky rocketed here, and we lost all of our good doctors.  Its really bad, there is something about it every other day in the paper, so, I certainly do not want to go into heart failure here, I would be doomed.

I appreciate the concern, and if this would have been the same time last year, you would have heard me back peddle a mile a minute, but honestly, after hearing the stories on this site, it has changed my whole perspective on it, as I had only talked to the one guy, Sammy, and his experience in surgery was not good.  I do not want my kids to find me........so, I know i have to go, and honestly I am so ready.  As I mentioned, there is no way for me to get on with my life until this surgery is behind me, so I can't wait to get it over with, so I can get busy with my life, I am so tired of being tired all the time, I feel like I am 100 years old.

I think I am going to skip sending my records to Columbia, and just stick with Cleveland, I am now familiar with the hospital, I have been there twice, and have gotten to know both the surgeon and the cardiogist, actually Dr. Klein is the only pericardial specialist in the country, so I am impressed with that...

So I am hangin in here guys......Two of my friends, and my brother have already bought the airline tickets, and we have booked the hotel...we are good to go....again, thanks for your support!!  I don't even know how to thank you both enough.......

as ever,

Cathy

I'm what you call an occasionally social smoker...you know, the right friend, the right bottle of wine...we're smoking!  I don't ever buy them or have them at my house but I smoke a few times a year.  I'm just sharing this because I ran a few "experiments" before surgery..."what the heck, I might as well enjoy myself etc"  Anyway, every time, my breathing  was so much tighter after smoking...it often sent me into a flare-up...so I stopped.  So...maybe that will motivate you...you might actually feel better these last weeks for stopping with the whole breathing involvement...smoking actually constricts your blood vessels...and they are working hard already.  Just a thought or two.  Plus, you need to go forward with the surgery, so don't jeapordize that.  Does chocolate work for you?  :)  I was on a red wine kick right before surgery...I know the whole "red wine is good for your heart" theory didn't apply, but I used it anyway.  You can do it...

I hear what you are saying about your husband, but it sounds like he might need some perspective and what better way to get it than the agonizing 5+hour wait with your sons while you are in surgery.  Maybe he will take it more seriously then, regardless of what you do.  I truly think the people waiting have it harder than us those first couple days...we are in la la land.  I know that wait has changed my husband forever.  I had my folks there too, mostly to be with my husband...I do think your boys will need people around them because it is nerve-racking to be in that waiting room.  That's just my opinion.  I hope you don't think I'm too free with my opinions :)  I tend to be on the blunt side at times :) 

About the pain...really, the least of the problems!  Especially if you are getting the "nice" incision...it will be a cinch.  The pain meds are awesome...stay on top of them.  Don't wait til you "need" it...just take them on a schedule and that really helps.  The most annoying thing for me was definitely the chest tubes...they stay in the longest of all the tubes and needles, and took the longest to heal for sure.  They didn't hurt a lot, just annoying.  They put a temp pacemaker in my stomach too...just a little probe with 2 stiches...no biggie.  I also had a big central line in my neck...I was glad to get that out too.  But anyway, try not to worry about the pain...it is definitely tolerable.  Your body well tell you when you are overdoing it.  Rolling over in bed etc was hard at first, pulling doors open and side to side motion...but that is with a sternotomy...so you may have none of that.

I have not heard of the calcification coming back...and I don't think you can have true constrictive pericarditis again, because you won't have a pericardium.  I have heard of the symptoms continuing with connective tissue disease, or elevated right side pressure.  BTW...that takes a while to go down, you will be on some diuretics...are you on some now?  Getting rid of fluid will help, but your case is more unique I think with the extent of the calcification.  Ask your doc...I'd be interested in knowing if it comes back...but I haven't heard of it happening in the little reading I've been able to do.

Hang in there...you are stronger than you know.

Nan

Thank you all for your comments, I took them all to hieart.

As far as the smoking, I smoked as a social smoker as well...went to do the invitro years ago, and STOPPED easily before I even started the invitro.  IF it didn't work, I didn't want to blame anything I did, so, it was a piece of cake.  After the boy's were born, they were premature, we now know due to my heart....Ty who was two pds thirteen oz's...had a IV brain bleed...grade four.  Once I heart that  news, they told me he could be blind, deaf, CP or retardation, OR all four.  That is when I started again, and then it became the "break" after the boy's came home...you know the social thing meeting everyone out in the yard...

I had NO intentions of ever smoking again after surgery.  I had promised my son, as he hates that I do that, and its my only bad habit, and has been tough to quit at this stage, espeically with the stress, I know I am making excuses, but, I am so nervous at this point, this seems like the worst time to quit.  But, I am certainly looking forward to NEVER smoking again once this is over.  I thought the hospital stay would be the perfect opportunity as by the time I get out of the hospital it would be a piece of cake, out of my system.

I just need to figure out how to STOP BEFORE...yikers....

I need your guys opinion.  You know my son's are coming, and have insisted.  Well, my aunt called the other day; and lectured me about it tramatizing them, so now I am worried sick about it, nad I have tried talking them out of it, and they won't have it...they keep saying, "mom you have been there for us our whole lives, now it is our turn to be there for you."  I explained that I am their Mother, and its my job to be there for them, and there is no such thing as a payback...I explained that I just want them to feel safe and secure and not worried.

DO you think it will be too much for them?

Will they be tramatized seeing me in the ICU?

Will they be better off at home while I am in surgery?

What would all of you do if you were me?

They are fourteen...and I am so worried about this right now...I don't know what the right thing to do is...one friend told me locally that she thought it best they go, if the worst should happen, they could miss an opportunity to say goodbye to me. 

I really value all of your opinions, so please let me know what you all think.

I am still having the episodes of shortness of breath, and its getting worse, about five times a day....is it anxiety, or the heart condition?  WHen it happens, I am not necessarily worried at the time or even thinking of anything, but I can't catch a good breath; and it feels like I am suffociating....I am on diuirtics constantly..if not for them, I don't know what i would do...the ascites is SO BAD, honestly within a thirty minute period, I can have a flat stomach, and then bam...it looks like I am eight months pregnant, and my stomach  is hard as a ROCK, and it gets so hard and so big, its unbelievable.  I ended up in the  ER once, as my potassium levels became dangerously low due to them, I became so weak, I could not lift my head off the pillow; and could not pee..nothing was working.  So, we are now careful and check it often, the other strange problem I am having is my platelets keep dropping...I am at 77,000, they are very concerned with that, DID you have that problem NAN???

Nan, thank you so much for insite...any information I can get to prepare is SO APPRECIATED!! Please be as blunt as possible, I hate it when someone beats around the bush, I like to be informed as much as possible!!!  THANK YOU!  Teri, I knew you had to be a nurse at some point, you have so much compassion, and care about people so much, you are a very special person.  Michelle, your landlord is a lucky guy to have YOU!

thanks guys!

your friend,

cathy

Hi Betsy May! 

I hope that your surgery is over and a complete success!!  I'm wishing you the best and hope we hear from you soon-before the worrier starts taking over here!! :)

Hugs, Teri