Teri and Nan, and Betsy....
We were locked out of our thread, and I am hoping you guys fine this so we can continue on...
Betsy, I would love to talk to you further on your symptoms, and hope that you can find this...
Teri, and Nan and Frand, I hope you guys are still with me....
Cathy
Post Edited By Moderator (Teri16) : 5/7/2005 1:15:17 PM (GMT-6)
We're with you, Cathy!! I'd already started another thread called Pericardiectomy Part 2.
I'm going to eliminate that now and add part 2 to this one, so we don't have too many threads going!-so when you see that your post has been edited, it's just to change the title a bit. :)
Big Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
I'm going to eliminate that now and add part 2 to this one, so we don't have too many threads going!-so when you see that your post has been edited, it's just to change the title a bit. :)
Big 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:
Welcome to HealingWell, Betsy!! 
"Because he is he and I am I."......E. V. Lucas
I read your story on the other thread re Pericardiectomy and what you have gone through and come back from is just awesome!! 
You have a great attitude and what sounds like a very wonderful family! I can't believe your 86 yr. old Mother is coming to help you out?! How great is that??
Thank you so much for sharing your story with us, and please keep posting and keeping us updated on you!
Best Wishes and Big 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:
Cathy, how are doing?? Hope all is well with you today?! Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas
"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:
Hi Everyon, Hope you had a great Mother's Day. Mine was good but sad wheen I had to leave my family. I hope my surgery goes well and I see all of them again. I just wanted to send along this web page address for a little spirit boost fpr you. http://www.theinterviewwithgod.com/home.html
Hi everyone...found you and I'm still here. Betsy, welcome...we will be looking forward to hearing how it went for you! Cathy, I thought of you today...Happy Mothers Day! Good for you to be that much closer to having this OVER! I hear you on the JVD...I swear my neck is 1-2 inches skinnier now! My mothers day was great today...also my son's 2 year old birthday. Anyway, last year on Mother's Day, my daughter sang in church, we were running late...and I could hardly get up the stairs. This year, we were again running late :) but the stairs didn't even faze me. I was so thankful I just sat and cried as they sang. Last year at this time I knew something was really wrong, but didn't know what. Now it is OVER!
Teri..thanks so much for the info on pregnancy...very interesting. I'd love to have more kids but only if I'm healthy enough to take it.
I'll be praying for you Betsy! Take care...
p.s. these threads just go to show you there is a big need for info on this diagnosis out there. It is so hard to find. People say over and over how relieved (as I was) to find this site!
Happy Mothers Day all! Have a good week.
Nan
Teri..thanks so much for the info on pregnancy...very interesting. I'd love to have more kids but only if I'm healthy enough to take it.
I'll be praying for you Betsy! Take care...
p.s. these threads just go to show you there is a big need for info on this diagnosis out there. It is so hard to find. People say over and over how relieved (as I was) to find this site!
Happy Mothers Day all! Have a good week.
Nan
HEY GUYS!
So glad this worked out, I was worried when I was the thread locked out, I am unfamiliar with this, and I had a feeling Te.ri would make sure we didn't lose each other...
YOU ROCK TERI!!!
Nan, I thought of all of you as well yesterday.....it was a tough day, I stared and hugged my boy's all day.....I worried it would be my last Mothers Day. I saw it in their eyes as well.
I contacted this cardiothorasic surgeon that I saw on OPRAH the other day. He operated on Bill Clinton, His Name is Dr. Smith, he is at Columbia University and I emailed him, they wrote back and said he was experienced with pericardiectomies....and was interested in seeing my records. What do I do know? I am all set and scheduled at Cleveland, do I open pandora's box, and make things more complicated, or stick to the program? ACK, I don't know what to do!
Betsy, where are you having your surgery at? DO you have all the symptoms that we have all experienced? HOw many pericardiectomy's has your surgeon performed? You are smart int he sense to have it done right away, I have drug this out so far, I am about beside myself, and can't wait to go now, altho, I end result scares me. I just recently read that it is close to impossible to remove it from the AV groove area. I have A LOT there..so I am worried. Has anyone heard of it coming back once it is removed? The guy that I found in the beginning that had his done, (he went to a VERY inexperienced surgeon) barely got any off, and what they did get off came back). SO, I am wondering if it comes back.
Have any of you heard of nano bacteria? I have been told that this could be the cause of it, and when you unearth the calcification around it, it will grow back faster....
Let me know ifyou have heard any about that..
SO good to have you all back and with me.......you are all my pillars of strength! I am still getting massive shortness of breath....or anxiety..not sure which one it is....and NO ENERGY, I haven't been out of bed in FIVE DAYS>...........arggggg
God bless you all........
Cathy
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
"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:
Hi guys!
Cathy...I have not heard of nano bacteria. I have heard of reoccurance of symptoms and thickening...but in relation to connective tissue disorders. I think that's why they wanted to rule out lupus etc...symptoms can come back with that. Sounds like you and I are both viral in the onset.
As far as the 2nd opinion goes...my feeling is it never hurts to have more expertise look at your case. Yours is unique in many ways...so finding the best specialist possible is worth it. But, I agree not to cancel anything yet. When Bill Clinton went in to have that second procedure...they interviewed my surgeon from Mayo to talk about it. I think he had some scarring in his lung or something. Did you ever find out how many of these surgeries your surgeon does a year? When I went for my 2nd opinion at Mayo, my attitude was I'd feel more at ease having 2-3 people telling me I HAVE to do this than just trusting one. I know you are way beyond the 2-3 mark...so this might not apply. You know you have to have it done...just boils down to experience and specific recommendations for the procedure. I see I'm rambling a bit on this paragraph...but in summary, it might be interesting to hear what he has to say...but don't cancel :)
Hope Betsy is doing well...wasn't her surgery today?
Keep in touch...soon this will be over Cathy! Next Mothers Day will be one heck of a CELEBRATION!!!
Nan
Nan and Teri,
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
Betsy May,
We're all sending you our best wishes and prayers hoping that your surgery goes well today!! I hope that you make a complete recovery and that you are back here real soon and letting others hear of your positive experience!
Much good luck and lots of hugs, (((Betsy May))), Teri
"Because he is he and I am I."......E. V. Lucas
"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:
Cathy, I'm happy you've decided to stick with it! :) If your Dr. was on TV, you'd be even more assured. :)
Big Hugs, Teri xoxoxo
"Because he is he and I am I."......E. V. Lucas
Big Hugs, Teri xoxoxo
"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:
Cathy...You are ready! I've only heard great things about Cleveland...so you are making good decisions. No place is going to be "perfect" as the procedure itself is no picnic....but the hope for a full life that it brings is amazing! I remember saying...I just want that first nurse that talks to me when I'm coming out of it to say "it went well...its' over!" then I knew I could get through anything!
Sounds like you have great support, count me in for cyber-support...and honestly, if you were closer, I think I'd come see you! :) Soon it will be over! Enjoy these days leading up to it...get a pedicure, have great talks with your boys, prepare in peace. Then, let others help you when you go home...I found that hard to let others do my work for me. You can't lift more than 5 lbs for 6 weeks, and a gallon of milk is 8 pounds. Just let others be a blessing to you! We hardly had to cook those first few weeks, meals kept marching through the door. Normally I would feel funny about taking all of that help, but I tell you, it was great! It was amazing to see how good people really are...what a blessing in the whole experience.
I'll be praying for you...
Hope Betsy logs on when she can...
Nan
Sounds like you have great support, count me in for cyber-support...and honestly, if you were closer, I think I'd come see you! :) Soon it will be over! Enjoy these days leading up to it...get a pedicure, have great talks with your boys, prepare in peace. Then, let others help you when you go home...I found that hard to let others do my work for me. You can't lift more than 5 lbs for 6 weeks, and a gallon of milk is 8 pounds. Just let others be a blessing to you! We hardly had to cook those first few weeks, meals kept marching through the door. Normally I would feel funny about taking all of that help, but I tell you, it was great! It was amazing to see how good people really are...what a blessing in the whole experience.
I'll be praying for you...
Hope Betsy logs on when she can...
Nan
Good luck you guys...I am still here reading this...funny our thread was locked down...my landlord is doing very well still...just got a hole in one in his golf game today...never had that before his surgery!! He turns 80 tomorrow!! May 11th.,
Michelle
Home is where the heart is
Michelle
Home is where the heart is
Hi Michelle!!
I was wondering where you were?! No, it's not odd that the thread was locked down-we were all told that on any forum when the thread got too long and hard for others to follow, it would be locked and that we could restart another...don't be surprised as this seems to be a popular thread, if this one gets too long!! lol
I'm really happy to hear Dave is doing so wonderful!! :) Tell him that I send my hugs and best wishes!
How are you doing, Michelle?? Hugs, Teri
"Because he is he and I am I."......E. V. Lucas
"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:
HI Teri - I just told Dave that you were thinking of him...he went...."Oh!! well....thank her" Like I said, he's a man of few words but he understands!
Home is where the heart is
Home is where the heart is
Hey Guys!
Nan you take the words right out of my head...I have thought that so much...the nurse saying, "its over, and it went well", how I pray for that!
I wish I didn't have to wait so much time, its driving me crazy, and I find myself looking at things and wondering if its the last time i will see it....
Things have gone from bad to worse at home, my "husband" is not helping at all, and is being so lazy. He acts like he is the one that is ill, I don't know if I can ever forgive him for not being there for me. I have so much bitterness inside, and after 18 years of marriage, I am just plain burned out. I don't even want him at the surgery. Do I really need him there? I know my son's do, BUT its hard, I want to end it now, and my life is so out of control right now. I know I have to bite my tongue until this is over with, and I am trying not to look at the calender.....I know the 20th will be here fast enough. I worry so much about the pain......I know this will be hard. YOU guys are going to kick my butt, but I am smoking. I am so stressed, I can't quit right now...I wish I could. They told me if I had nicotine in my system, they would cancel surgery. I think the girl who arranges the surgery was just trying to scare me, but how do I quit now.....its like my binky...
Thanks Teri for the words of encouragement........YOu are such a caring person, you missed your calling, you should have been a nurse!
I hope and pray Betsy did well, and am sending good thoughts her way....
Nan, its so good to hear any of your experiences.....please keep em coming...you have no clue how much it helps to hear how you went though it and are okay. Have you ever asked the doctors if the calcification can return?? Let me know..
thanks guys, and GOD BLESS YOU ALL........
your friend,
Cathy
btw........I am sticking with Cleveland..its all set, and famlly members have already bought tickets....I know when this is all over with,
oops...........I know when this is all over with...........I probably wonder why I made such a fuss...
I spoke again with Dr. Lytle and he still wants to go under the left breast...I hope he knows what he is doing........I am pleased with it because the scar will be less visable, but, I only want to have to do this once....
ALSO...nan, do your valves leak, and is your heart enlarged??
I spoke again with Dr. Lytle and he still wants to go under the left breast...I hope he knows what he is doing........I am pleased with it because the scar will be less visable, but, I only want to have to do this once....
ALSO...nan, do your valves leak, and is your heart enlarged??
Hey Cathy....I wish there was something I could do to at least stop you from smoking. Usually they want you to stop smoking 3 weeks prior to surgery...I know it's hard to give up the one thing that makes you feel better...Too bad your husband is being such a boob. Darn. But I think you will have to try to give up the smoking - do it for your sons. No point in having this surgery only to die of lung cancer or another heart problem a few years from now.. But you know this. Do it for your boys if you cannot do it for yourself right now.
And Dave ( my landlord) has leaky valves...2 of them. But they could not do the pericardiectomy and fix the valves at the same time...It would have meant 8 hours in surgery and for a guy who was 79 at the time....they thought it too much. Valves don't seem to be giving him too much trouble right now. Good luck, Cathy....but try , try not to smoke. Easier said than done, I know...sorry.
Michelle
Home is where the heart is
And Dave ( my landlord) has leaky valves...2 of them. But they could not do the pericardiectomy and fix the valves at the same time...It would have meant 8 hours in surgery and for a guy who was 79 at the time....they thought it too much. Valves don't seem to be giving him too much trouble right now. Good luck, Cathy....but try , try not to smoke. Easier said than done, I know...sorry.
Michelle
Home is where the heart is
Hi 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