Pericarditis and Pericardiectomy; Part III

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Teri16
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Date Joined Dec 2003
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   Posted 6/7/2005 4:46 PM (GMT -7)   
Hi Everyone and Welcome to the new Pericarditis and Pericardiectomy Thread Part III! tongue
 
The forums are only allowed to get so lengthy and then they are locked.  They're still here, so if anyone wants to check further back on this forum, we do have a Pericarditis I and II.
 
They're very informative and many current and past members have literally shared their lives with us here at HealingWell both before and after their surgeries.
 
Best Wishes to All!!   Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Nan2
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Date Joined Nov 2004
Total Posts : 175
   Posted 6/8/2005 8:25 AM (GMT -7)   
Hi...found it. I'll be checking in!

Nan

Teri16
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Total Posts : 5230
   Posted 6/8/2005 9:25 AM (GMT -7)   
Hi Nan! I'm glad you found it, now we need to make sure, that Cathy, Mister, Mrozek, Les, Betsy and all the others find it! :)

Mister, still waiting to hear how your are doing!?

Cathy, I know the count down is in progress for you, please let us know how you are doing!!

Big Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Andrea1
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Date Joined Jun 2004
Total Posts : 51
   Posted 6/9/2005 12:37 PM (GMT -7)   
Hi I like to know for sure if the pericarduim can or can not be completely removed. I was told they can't remove it all. But, after reading the previous posts I'm beginning to wonder if that might be my problem. I feel almost as bad as I did before I had surgery. Now I know I have an underlying illness but I should at least feel better as far as my hearts goes. At least have some energy and not short of breath...If anyone has an answer I'd love to hear it. Thanks, Andrea
"Life is too short"


Storri
Regular Member


Date Joined Mar 2005
Total Posts : 191
   Posted 6/9/2005 4:39 PM (GMT -7)   
Hey guys...
sorry to have filled up the other thread, it seemed like their was so much information that week.
I am preparing to go; so I am up to my ears in appts, and do not know how I will get it all done.
I spoke with the cardiothorasic surgeon Andrea at Cleveland, and they do both....partial pericardiectomys, and the other is called a radical pericardiectomy.  He said if for some reason in the AV groove area the calcification is adhered to the myocardium, it makes it difficult to remove, so that makes it unable for them to remove it there, but, he said in most cases they remove the entire pericardium.  In my case, since I have so much calcification, I am having a radical, they are going to strip it all off.  yee haw...
 
Nan, I spoke with your surgeon, they are incredible about returning phone calls...I called once, and they have called my house five times in two days.  They are really pursuing me about having surgery there.  I would love to go there, but, I am still liking the idea of not having the insistion down the middle, and instead under the left breast, from what I have found out, Dr. Lytle is the only cardiothorasic surgeon that has perfected that technique.  They say it is uncomfertable wearing a bra for some time because that is exactly where they cut, but, they said a loose sports bra works well.  Have we not heard from Mister yet??  I hope all is well.  I won't be able to post much, as the next week is so crazy, but, I will be sure to post one more time before I leave.  The anxiety is in full force, but, I am ready to face it head on.  I have been a tad bit moody, I hope that passes.  Ter, thanks for asking about me, and I am grateful for all of your support, you are a kind compassiate person.  Thanks for everything..OH, and btw..lol, the day I wrote Teri-bear....it was surpossed to be Ter-bear...I am horrible about giving people pet names...it happened once I had twins...lolol..take care all...Cathy

Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 6/9/2005 4:53 PM (GMT -7)   

Hi! 

Cathy...the sternotomy is nothing to be afraid of...have you asked Schaff about it?  He told me that it gets the best results...but maybe that is because he doesn't do the other regularly...he does do them though...we asked about it before surgery.  Please don't let the incision site be your deciding factor!  Did you get good info from Dr. Schaff?  I'm sure he knows Dr. Lytle...did you ask him about him?

I'm pretty sure my discharge note said total pericardiectomy...and they described it as removal from the front between the phrenic nerves.

I'll be thinking of you these countdown week.  I'll be in Rochester June 21st if you do change your mind :)  I'd come visit you :)

SOON...you will feel like a new woman!  But...don't be afraid of a sternotomy please...my first C-section was much worse than this...and he stitches from underneath so the scar should be pretty small...

Please keep in touch as often as you can...we'll all be thinking of you...

Hope Mister finds this site to let us know how he is doing...Teri...is there anyway to add an extra note on II to let him know to look for III?

Take care all...

Nan


Andrea1
Regular Member


Date Joined Jun 2004
Total Posts : 51
   Posted 6/9/2005 5:08 PM (GMT -7)   
Hi thanks for the info. I was told it was hard to remove from the Av area and thats considered partial for that reason. Otherwise it is complete. I was told in the beginning I would have the incision under the breast as well...but they cut right down the middle...believe it or not I was more worried about that scar than anything else...as it turns out it's not bad at all...in fact I think in time it might be completely invisible. Right now i(t wasn't straight I should have asked to draw a line myself when your laying down and they do it I think your body isn't straight and it can be crooked) it is a little red and very slightly raised but looks great. I bought silicone strips from the drug store and wore them for about 10 weeks...I should have kept it on longer...but it helped hide aswell as keep flat...I started wearing them about 2-3 weeks after surgery...a little pricey but good....also the sports bra worked great...I wore it all day and night give good support to the breasts while healing...I can't believe they want to go in under your breast since your so sever you would think they'd want a full veiw...anyway good luck and thanks
Andrea
"Life is too short"


Andrea1
Regular Member


Date Joined Jun 2004
Total Posts : 51
   Posted 6/9/2005 5:26 PM (GMT -7)   
Yes Storrie it's true what Nan says...there are no visible stitches it is done from inside and the scare is barely noticable. I wear v-necks all the time clevage also helps hide and I'm not a large women...no one as said anything yet.
Andrea
"Life is too short"


Nino Malo
Regular Member


Date Joined May 2005
Total Posts : 30
   Posted 6/9/2005 6:15 PM (GMT -7)   

Hi gang:

I found this new thread too, so I presume my brain hasn't completely calcified along with everything else.

I do have a question.  Do any of you know anything about "Occult Constrictive Pericarditis?"  I have researched the internet and have the written material on it but would like some first hand information if any of you have some.  My understanding is that it usually occurs several years after radiation therapy.

The reason I asked is that one of my (newly assigned) VA doctor's is suggesting they do a rapid saline infusion during a right-side heart cath and I've discovered (no thanks to him) that it is a procedure they use when occult constrictive pericarditis is suspected.  I'm not sure why they would suspect it since I've never had radiation therapy but maybe some of you know something about it that I don't.

Thanks and my best to all of you.  If anyone hears anything from Mister, please let all of us know.

Les


Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 6/9/2005 9:45 PM (GMT -7)   
I will see about adding a note to the other thread for Mister, I wish him the best and hope he'll come back and post soon!!...

Les, I will research your question!
VA? Retired military, hey? So is my hubby! They're always busy, but I did some training there as well, and they really are some of the best!! I have read where constrictive pericarditis can occur after heart surgery...

I had open heart surgery and I can tell you, from what I've seen and heard, that women tend to get the best jobs done on their suturing! :) Sorry guys...guess they think ya'll like that rugged look. :)

One thing that someone recommended to me was to forget bras, and wear comfy t-shirts - if you need to wear a tank top and a t-shirt over it!-though for the life of me with the suturing being under the breast I would guess you'd want something to lift any pressure off-well the nurses I bet can give you some answers Cathy!! Please know that you'll be in our thoughts and have been from the first meeting! :) I wish you the very best and will expect to hear from you just as soon as possible, or one of your sons!! Do you have my email?? Just click on my name here on the board and it will take you to my bio page. Whatever makes you more comfortable.

Hugs, Teri xoxoxo :)
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 6/9/2005 10:01 PM (GMT -7)   

Les, I don't have first hand knowledge, nor have I heard anyone with this particular diagnosis of Occult Constrictive Pericarditis, but I did find an article that you may be interested in~if you haven't seen or read it before?  I noticed that it came up more often in connection with a diagnosis in infants.See the following...Hugs, Teri tongue

http://circ.ahajournals.org/cgi/content/abstract/circulationaha;56/6/924


"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Betsy May
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Date Joined Apr 2005
Total Posts : 13
   Posted 6/9/2005 10:58 PM (GMT -7)   
Hi everyone, Just checking in. I,m recovering very well but still have to remember I,m only one month out of surgery and still tire out easily. The question of partial or total removal of the pericardia has been asked a few times so here is what I was told. Only the front is removed unless there is growth in the rear that could cause future problems. My doctor said this is because he would avoid having to do excess handling of the heart. He said to remove the rear portion the heart must be lifted and turned over and adds risk. As for the scar issue, mine is disappearing a little more each week. You shouldn't worry about it when the illness is much worse. I had a double mastectomy 8 yrs ago and my scar is invisable. Hope you are all doing OK and I'm praying for Cathy because the waiting is scaring me and I know it ia worse for you. Betsy

Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 6/9/2005 11:28 PM (GMT -7)   
Betsy, Welcome back once again!! yeah
 
You have been a real trouper and I hope your recovery continues to go well!  Please don't be a stranger here, we all love to hear from you!
 
Best Wishes and Gentle Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Storri
Regular Member


Date Joined Mar 2005
Total Posts : 191
   Posted 6/10/2005 3:54 AM (GMT -7)   
Hey guys,
thanks for the info on scarring....it's been a good thing for me to kinda focus on the scar, as the surgery is oviously on my mind 24/7, and its a much better diversion than thinking or focusing on the high risk factors that are involved in pericardiectomys, so it's been healthy for me to try to think about the trivial factors, and plus, I am a girlie girl, and the thought of this hidious looking frankenstein type scar had me concerned, as the only one I had viewed before was from an older man whom had two open heart surgeries, and it went up so high, and was bumpy and red.  So, hearing your comments without a doubt put my mind at ease, and I agree with you Teri I believe they possibly try hardier to not to go as high, and do a better job on females.  It was true with the guy that showed me his "battle scar", he was quite proud of it...so men do think it can be a manly kinda thing.  If I were to married for the this next lifetime, I wouldn't mind so much I imagine.  Andrea, how soon can you use the strips, and what are they called, and do you need a prescription to get them?  I do not wear low cut shirts, but, I would like to wear a vneck, and love tank tops.. and dont want a scar that comes out of the shirt.  Don't mind as much the scar's that are not visable without removing your clothes..living in las vegas, it is quite warm in the summer, so tank tops are essential!  Betsy, nice to hear from you, glad to hear you are doing well, I think good thoughts of you often!
 
But without a doubt this last week has been the hardiest.  I am having episodes of shortness of breath, and I don't know if I am having anxiety attacks,  or if its a symptom from the constricted heart.  Nan, Dr. Lytle told me he would go in that way; and he will have the same access to the heart as if he went down the middle, how or why, I don't know, but he told me not to worry about it, that he will have full access, as I expressed my concerns, and do not want to sacrifice having to go in again later just for cosmetic reasons..so, he assured me that he is the "expert" at going in that way, and it would be great, and told me not to worry...ha, easy for him to say, he is always on the other side of the knife. Dr. Oh said they have done them at Mayo, but, they have not done many of them.  That was in no way the deciding factor, as everything was booked, hotels/airline, along with everyone I know coming had booked their tickets, and it is just too difficult and expensive to change now, or I probably would, everything was non refundable, even the hotel because I booked it on the internet. That would have been awesome, as we would have both been at MAYO at the same time Nan, I would have loved to have met you.  And rest assure if at anytime, I feel uncomfertable about anything at Cleveland, i will not hesitate to LEAVE that week before and jet over to Mayo, I am there seven days prior to surgery with testing daily, so I will get a good taste of what is to come before I actually go in, and there was an incident with Cleveland when we were there last, I won't get into it, but, we are hoping it was just the nurse having a bad day.  Klein STILL has not returned my call, to find out how many they have done, and I had some other questions as well, it worries me a bit, as Mayo has been incredible, they wont stop calling!  Lytle is cool about returning calls, I guess klein is too busy for me, I don't know.   How many days has it been now for Mister?  Seems like forever and ever, I will be very happy when we hear from him...:::pacing:::  Peace!  Cathy

Andrea1
Regular Member


Date Joined Jun 2004
Total Posts : 51
   Posted 6/10/2005 7:52 AM (GMT -7)   
Hi Cathy they are called "Neosporin" Scar Solution...28 strips about 1.5" to 4" in size cost about $30.00...I used 3 strips for the scar. They can be washed and used for up to three days. I started when the area was dry and scabed. That was about 2-3 weeks. I had done alot of internet research and found silicone works for scars but to order them it was very expensive...then like magic one day in the drug store I found these silicone sheets for 1/2 the price and I bought them. One box is a 12 week supply but if you wear them longer the better 24 weeks or longer until you feel comfortable. I don't wear low-cut either but I do wear v-neck and you can't see a thing...but sometimes I use a concelling stick to cover that little red that is still there. My huband had two open heart surgeries when he was in his 30's for valve replacement all within 4 months of each other...he has a 2" wide 12" long scar so I was worried...it doesn't even compare.....I remember now why they didn't go in under the breast it was because they found they had to do a by-pass...as it turned out they did two. Anyway, good luck again and get the strips before you go in...and I liked the sports bra too because gravity is with me all the time now and 3-4 weeks without one scared me lol...Andrea
"Life is too short"


Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 6/10/2005 11:06 AM (GMT -7)   
Please make sure to talk to your Dr. first about applying anything to your wound.
 
After my bypass surgery, I was told by my heart surgeon Not to put anything on it...and boy am I glad that I listened and didn't do a thing!! 
 
My scar is extremely small and healed beautifully!
 
Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Andrea1
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Date Joined Jun 2004
Total Posts : 51
   Posted 6/10/2005 11:54 AM (GMT -7)   
Hi I also talked to my doctor and the surgeon before hand and was told to go for it if that's what I wanted to do. And I'm glad I did as well...the scare...what's left of it is a thin pencil line...but it's all a matter of personal prefrence...they do a good job no matter how you take care of it afterwards.

Andrea
"Life is too short"


Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 6/10/2005 7:07 PM (GMT -7)   
The problem is the not the scar.  The concern is infection and it's safety they are worried about
 
I still recommend, to just ask your own Dr. for your own personal advice.  It is not up to us, we're not Dr.'s. 
 
Hugs, Teri   tongue
 
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Storri
Regular Member


Date Joined Mar 2005
Total Posts : 191
   Posted 6/12/2005 8:57 AM (GMT -7)   
Thanks Andrea and Teri,
I will be sure to consult with the doctor first, but will buy them before I leave, so if I can use them, I have them.  When you remove them Andrea to put a new one on, does it pull off the scab?  And how long is your scar Teri and Andrea and Nan...how many inches long?  I guess bikini's are out of the question????  Spoke to Dr. Lytle, he said he will not know if he can go under until he gets the  catscan, mri and  cardiac catherization results back.  He told me he does the most difficult cases in the United States, and that even Mayo has sent heart patients to him, he says he does the most complex cases....the cases no one else will do.  SO i have my confidence back with him.
well guys, I leave next Monday...::::shutter::: I have had a tough week, panic, fear, moody, and feeling so vunerable.  All I keep thinking is, altho HELL is next week, its the beginning of my recovery as well.  I almost feel like I have to go through hell, before I can have happiness, and if that is the price I must pay to get that, then I will pay it.  I have to tell you all that have been through open heart surgery that you are all the most courageous people I have ever met..I have always looked at three things the most scariest things to go through...oviously one being open heart surgery, two, brain surgery, and three...amputation of any kind...I always thought if I could get though this lifetime and not have to endure these three...I would have it made.  I have a cousin that lost both of her legs, and one arm at age 18, she is the strongest person I have ever known, she has had a little girl; and finished college.  I don't know if I could have done what she has.
 
SO, I look to all of you as my hero's, and hope to come out the other end in the OHSC (open heart surgery club)  lol!....alive, happy and relieved it is over with!!!   This site has almost become like therapy for me, better than a shrink; because you have all walked in my shoes and beyond.  Catherine

Texrose
Regular Member


Date Joined May 2005
Total Posts : 30
   Posted 6/12/2005 9:15 AM (GMT -7)   

Good Morningt To All. 

I have been reading this thread like the Bible this morning. :-)

Reading notes on my recent A-Fib/Stent 10 days ago, I noticed the words CP posted also on the top of my CATH report.  Now, CP may stand for Contrictive Periocarditis?? If this is the case, no one mentioned this to me.

Is there help/hope for CP? 

I have read that many of you had surgery and was this for CP and does one need to go to Cleveland Clinic to get the best surgeon for this?  I am close to Texas Heart Institute.  I see my doc on Tuesday and will ask about this "CP" listed on the Cath Report.

Thirsty for more info here.. yeah


Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 6/12/2005 9:30 AM (GMT -7)   
Cathy,
 
I wish you all the best in the world and I will be praying and hoping for the best for you!!!  Please let us know, or your sons or someone as soon as you can, how you are doing!!
 
You've been a wonderful influence here for others, sharing your thoughts, your fears, your life!!  You've been a positive influence and I hope when you come back here, you will continue to help others as well!!
 
With Love and 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:


Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 6/12/2005 10:05 AM (GMT -7)   

TexRose,

CP can stand for other things as well;  Chest Pain, Cardiopulmonary, Chronic Pain...Your best bet would be to definitely ask your Dr.'s! 

Hugs, Teri tongue


"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:


Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 6/12/2005 10:14 AM (GMT -7)   
My scar is 5 inches long and like a thick pencil line. I'm just coming up to my 10 month anniversary...in the beginning it was sort of ugly and reddened. With healing it gets smaller. :) xoxoxo 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:


Andrea1
Regular Member


Date Joined Jun 2004
Total Posts : 51
   Posted 6/12/2005 11:21 AM (GMT -7)   
Hi Cathy The stips come off very easy and they stay on very well. You won't see the stitches their inside. My scare is about 6 inches and it really heals very well. It will be a year for me on the 24th. I really don't think bikini's are out but I'd wait before I got any sun on it...at least until you feel comfortable about it. And a nice soft stretchy sports bra will feel good...soft with no contruction...when you feel ready. And loose clothing for going home...I wore my hospital gown home because I couldn't fit in anything...I developed Nephritis and gain about 10 pounds of fluid from kidney demage because of the Lupus. But, thats just a little tip from me that I did I'm sure you'll have your own little comforts as you go alone. Good luck and keep smiling.
Andrea
"Life is too short"


Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 6/12/2005 8:48 PM (GMT -7)   
Cathy...you are making the right decision going to Cleveland...you put a lot of research and thought into choosing them in the first place...I'm glad your surgeon called you and I'm glad he was able to put your mind at ease with his expertise....a relief for sure that he is experienced with the challenging cases.

As far as my scar...it is as long as my thumb to my pinky...it is wider at the bottom than the top. It is raised up a bit on the top...not flat like the bottom. I think I pushed myself to early so it would have been smaller. I remember reaching for the light one night and tore it open just a little...so keep that in mind when you are healing...take it easy! That was hard for me to do with a one year old who wanted to be on my lap all the time. It still looks nice. I was not a bikini candidate before surgery so I can't blame that on my scar :)

Also...I wore an underwire bra home from the hospital and it felt fine...

Teri...congratulations on 10 months!!!!! What a victory!

I'll be thinking of you Cathy...like you said...it is the beginning of your HEALING!!!!!

Hope we hear from Mister soon!
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