HealingWell
Search Close Search
☰

Pericarditis & Pericardiectomy- CLOSED THREAD

Support Forums
>
Heart & Cardiovascular Disease
✚ New Topic locked
1 23 4 5 6 7 8 9
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/9/2007 2:11 PM (GMT 0)
Hi everyone. Have not checked in for ages. How selfish is that? All going really well for us and life is back to normal. Only reminder of surgery is a low cholesterol diet and a baby aspirin every day! Sylmar 2007 I would guess that you are in UK? Only because you speak about the G.P. and I don't think they use that term in USA. If so I would recommend you contact either Gt Ormond St Hospital if you live in the South or Broadgreen Hospital in the North and ask advice re cardiologist. We were lucky we got a Dr who had seen constrictive pericarditis before, was v. interested in it and to be frank had no life outside of his work! Even he said that the only way to be certain it was the correct diagnosis was to operate. He wouldn't let my husband even try steroids as he said they were useless unless taken immediately pericarditis infection was diagnosed. If you are UK based let me know and I'll leave my e-mail address open in case you want to go into more detail. This time last year I thought my world was ending but it all came out OK so have faith and chin up.
Posted 10/14/2007 3:31 PM (GMT 0)
Hello everyone. Thanks for the reply sherwood (although I couldn't figure out how to send email to you). My husband is now facing a pericardectomy, and he is wondering how long the recovery period is: how long in the hospital, how long before one feels well enough to resume work, how long until one really feels normal. Any info anyone can share would be very much appreciated. Thanks in advance.

PS: I am in the US; GP is a term that at least used to be used in the US as well, but maybe not any more.

Nanda: I hope you are doing better. It sound like you have pericarditis on top of other heart problems. What an unfortunate combination! We have found that one needs to be quite proactive in making sure that echos get done frequently enough, that things that are seen by one person get carried over to the next, etc. My advice is to write it down whenever one person says something like the right ventricle observation and then bring it up with your cardiologist and anyone else you see until it gets explained or resolved. Best of luck to you.

Post Edited (sylmar2007) : 10/14/2007 9:43:16 AM (GMT-6)

Posted 10/14/2007 7:48 PM (GMT 0)
My husband was in hospital for 6 days including the one day pre-op. He was told to expect 10-14. I think a lot depends on age level of fitness and whether you have other problems, are a smoker etc, Looking back he would have been better staying in another day or so as each nmight we were awake on the hour every hour as he could only sleep sitting up and slipped in his sleep! In hospital he had a bed with electric rise and fall and would have been more comfy. He went for his first walk on day 8 and walked about 20 yds up the road and back but he quickly got up to 2 or 3 miles. He's only just back at work as he had problems with his shoulders post-op but felt well enough otherwise at 6 weeks. Easy for us to say but the sooner it's done the better. It had already begun to send my husband into liver failure because of the 'back-up' from his failing heart. He is back at the gym and we are dancing and playing the fool with our grand-children again. Good luck XRe e-mail if you click on the little envelope under my name on the right it will give you address. I'll leave it on overnight.

Posted 10/14/2007 9:17 PM (GMT 0)
Hi Sylmar,

thanks for the kind encouragement. I have definitely become more proactive and am now seeing another cardiologist as I felt I needed a second opinion. So far I feel like I have found an angel and feel I am in good hands now. He was quite troubled that I was on steroids and is getting me off of them completely (Yay!) and is trying another combo of meds which so far seem to be reducing the symptoms. I wish you the best with your husband and remember to take care of yourself too! It is not easy for those of you that are nearest and dearest to us to deal with all of this.

Posted 10/19/2007 4:27 PM (GMT 0)

Hi Everyone,

I am new here. My husband was told on Oct. 4, 2007 that he would need a pericardiectomy and needless to say we are scared to death. We came straight home and got on the computer to get as much information as we could. As you all know there isn't a lot out there. We feel lucky to have found this forum. You gave us some valuable information and have helped us feel better. We have an appointment at the Mayo Clinic at the end of this month. Thank you all for sharing your experiences.

Posted 10/19/2007 6:03 PM (GMT 0)
Hi Robin,

Sorry for what you and your husband are going through. My husband's surgery is scehduled for next Thursday, 10.26, so we will go through it just before you guys do. I'll be glad to answer any questions you may have. The good news is that the operation seems relatively straightforward and not too risky. Hang in there.
Posted 10/22/2007 12:54 PM (GMT 0)
Hi Sylmar. Thursday will seem the lonliest day of your life but the day after will be just amazing as life starts to get back to normal. Will be thinking of you [you too Robin] Good luck . XXX

Posted 11/1/2007 10:42 PM (GMT 0)
Wow, it has been forever since I've posted on here. My husband has recurring pericarditis. Not constrictive. He was in the ICU 2.5 years ago with cardiac tampenade (so much fluid that it can crush the heart). It was scary and nuts and thank god, he's kept the pericarditis under control since then.

Unfortunately, with the use of steriods, prednisone, to be exact. He's also on colchecine, and plaquenol, and Ibuprofen and a sort of other things. He will get as low as 1 mg of steroids a day, and then boom, inflammation and it's back up to 25 mg. It's just heartbreaking - for him, and for me. He hates being on this stuff, and so do I.

I just wonder, will it ever go away? Sigh. It's frustrating. I wish there were other options.
Posted 11/3/2007 6:57 PM (GMT 0)
Hi Maya G.,

my second cardiologist got me off of the prednisone with the help of Ketorolac and Plaquenol combined.I've been off the prednisone now for two weeks. I'm still taking the Colchicne and some other drugs but it is such a relief to be off the steroids. My heart goes out to your husband as it is such awful stuff.

Posted 11/3/2007 10:02 PM (GMT 0)
Hi everyone,

My husband and I just got back from the Mayo Clinic. The doctors there confirmed my husbands diagnosis that he needs a pericardiectomy. They local doctor we saw told us that they could do a partial pericardiectomy but the doctors at Mayo told  us that they  recommend that the whole pericardium be removed. He said that they have had to do second surgeries on people who have had partial surgeries done. I do not want to put my husband thru that. We were very impressed with everyone at the clinic, now we are just waiting for his surgery to be scheduled.

Sylmar, I hope that your husband is doing well and you are in our thoughts and prayers.

Posted 11/13/2007 1:40 AM (GMT 0)
Hi everyone!

Signing in as one of the "old-timers" :)  Sorry it's been so long since I posted.  On Dec 15th I celebrate 3 years since my surgery.  Welcome Robin...you are in good hands at Mayo, that is where I had my surgery.  It's a big deal, but the recovery goes fast and your husband will feel better each day.  It's so great not to have the symptoms of CP anymore. 

Sylmar...I'm thinking of you and hoping surgery went well.

We just went and had a family picture taken today...the last one was 3 years ago, just before surgery, all puffy on prednisone, thinking "I'd better take a family picture just in case"...well...time to replace the "just in case" picture with a "full of life" picture.  I'm so thankful.  If there is one purpose of this site, it is to give hope to those at the surgery gate...you can get through it and you will feel better!

I'm happy to share my story if it helps anyone...I was 35, two little kids, feeling awful.  My biggest symptoms were feeling strangled when I walked and feeling like my head was going to explode, plus looking 9 months pregnant on occasion.  After 18 months of doctors, they finally referred my to Mayo in Rochester where they figured it out iin 10 minutes, tried prednisone which didn't work, and scheduled surgery.  I woke up and the pressure in my head was gone, everything else got a little better each day.  I had the full zipper, which is unfortunate for v-neck shirts but the scar has faded and is hardly noticeable now.  Developed hypothyroidism which was found at my 6 month check, but it has resolved as far as I know...I'm getting it rechecked in 2 weeks.  At my 18 month check, all heart values were normal and I was discharged with no meds.  It was a life changing experience.  I sometimes feel guilty I'm not doing enough with my second chance but I'm working on that.  I really want another child but have to have faith about that subject. 

That's the short summary.  I found this site a few weeks before my surgery and it helped me so much to read about someone else's experience.  If you want any specific details on surgery/hospital/tubes/recovery...let me know.  I'm happy to help if I can.

I'll be thinking of you guys.

Nan

Posted 1/3/2008 8:57 AM (GMT 0)

Hi,

This is my first post on your forum.  My husband was diagnosed with calcified pericardium disease, (48 years old, physically active - surfer, fisherman)during a Heart Cath procedure last spring.  His Cardiologist had a bet with him that he had at least 2 blocked arteries, he had NONE!  He won that bet, but had this bad news to deal with.  I forced him to do the Heart Cath, since his Cardiologist really thought he needed it.  Brought in the BIG GUNS, and had his Dad call him to make sure he did it!   After the Heart Cath we went into talk with his cardiologist.  She did not seem that well aquainted with this disease. She did prescriped Toprol XL, along with Cholestrol lowering meds, and baby aspirin.  She told us about a Pericardietomy , using minimal invasive procedures.  Then she referred us to a Lung Dr., who sent him for a CT scan (showed extreme calcification) and breathing test- he passed that one with flying colors last June.  Again, this Lung Doc was not very knowledgable in this condition, as well.  But did say it was the worse he ever saw.  That made us feel really good!!!! eyes    He is not all that happy with his Cardiologist' strong personality and manner, and is currently looking for a new one.  He would prefer someone who is knowledgable in the treatment of his pericardium disease.  See below.

He was not having very severe symptoms at that moment in time, so he choice to, "wait it out and see if it gets bad" (not what my choice would have been).   Now it is January and he is worse for the wear.  Has what I would say are times of feeling good, and other times of not feeling so well... well pretty rotten really... all together, hard and bloated -retaining water -swelled stomach, legs, face, feet; hard time breathing, pains in chest and neck,- especially when he bends over.  The same symptoms most of you have descriped on this forum.  We have read the posts, sorry we were lurking...   Also, we have researched online the Cleveland Clinic and Dr. Lytle.  We live in So California, and my husband has his family in Seattle.  I see that the Swedish Medical Center in Seattle has formed an affiliation with the Cleveland Clinic, back in 2006.  They have a  Dr. Joseph Teply (Thorasic Surgeon) specializing in Pericardium related diseases, on staff.  My husband likes the fact that he can have this surgery in Seattle, close to his family.   My question to all of you is: Has anyone heard of Dr. Teply-?  Had this surgery with him?  Also, does anyone know of a Cardiologist in the Southern California area- Orange County area, that specializes in Pericardium diseases- or is at least knowledgable in treatments and monitoring patients.  I really appreciate any help or advice that anyone can give us at this point! 

Thanks! tongue

Posted 1/4/2008 5:59 AM (GMT 0)

Hi LRC,

 Sherwood wrote me today and said I should check in with you. I read your post and I wanted to reply.

 I live in Bay Area and have been through alot with the whole process. I had been told by many experts that I need to ride it out and things will get better. I went to a local Surgeon who has done over 10,000 open heart procedures, my wife was dead set against doing anything. This guy is absolutley amazing. His credentials were confirmed by many top US surgeons around the country I consulted.

 All I can say is I have my life back, running a few miles aday and every other part of my life is normal after 2+ years of pain and terror.  Dr Gaudiani works at 3 Hospitals in the Bay Area and is well worth your travel. When you meet him you will know right away, another local guy 6 weeks in front of me with the same procedure is also in great shape. I had mine done at Sequoia Hospital & they were Awesome as well.

I had a Maze procedure at the same time which is a pretty tough combo and I am doing GREAT!!!

 We leave for our 1st vacation in over 3 years on Saturday, but I would love to help out any way I can. WE will be gone until 1/14

 You can do a Google search for Dr Vincent Gaudiani in Redwood City     I believe it is Pacific Coast Vascular Surgery    They will calm you and fix your Husband and give you your life back.

 You can email me or if you would like to talk to me, send me a message and we can arrange to talk.

 Be confident, Things will get back to normal fast, Its no picnic but I feel great and have no regrets.

                Boog

Posted 1/5/2008 2:43 AM (GMT 0)
Hi LRC,

you might want to check out Dr.  Robert Siegel at Cedars-Sinai Heart Center in Beverly Hills.

Posted 1/5/2008 4:40 AM (GMT 0)
Hi Boog, Sherwood and Nanda,
I cannot thank you enough for responding to my post! Sherwood, Thank you for passing this info on to Boog. Your surgeon sounds wonderful. I will definitely do more research on him. What is a MAZE procedure? I am so glad to hear that you are getting your life back on track! Have a wonderful vacation, you deserve it! We will talk more when you get back! Have a GREAT TIME! I have read many of your recent and old posts since last Spring, when my husband was diagnosed after his Cardiac Cath. His cardiologist had to have it "starring her right in the face" before she diagnosed it, quite literally. He had been going to her since 2003 reporting the same symptoms I see on this board. The rub, shortness of breath sometimes, ect. She never even came close, and she is one of the best in our area, according to others including my Father, one of her patience. The one thing she did do which was good or ... bad ... depending on how you look at it. She broke patient confidentiality and told my Dad that my husband has a serious heart condition and really needs to get in for a Heart Cath. My husband was hemming and hawwing about it, he did not feel he had any blocked arteries (he was right), but she was 110% sure he did. After the diagnose we have had a hard time finding any Doctor that is knowledgeable on CP. We literally spent a month going to Dr after Dr. and at the Imaging center with test after test. Even the Lung specialist our Cardiologist sent us to could not understand why the cardiologist sent us to him. FRUSTRATION IS NOT THE RIGHT WORD FOR HOW WE FELT!!!! So, it is really time for a NEW cardiologist. I am hoping for a miracle and finding a good one somewhat close to our home in South Orange County. That way if he needs treatment quickly he can get it, relatively easily.
Nanda, Thank you for your post! I think I heard of Dr. Robert Siegel at Cedars! Strange enough but a friend at work told me she was going to see him, last summer. It turns out she really liked him. She does not have CP, an altogether- different heart condition. Are you a patient of his? Does he specialize in CP?
Currently this week, my husband has bloated up like a 8 or 9 month pregnant women! He has a slight cold that is going around. He went to his local internist and she prescribed some diuretics, yesterday. They seem to be helping him. She said there was fluid in his lungs, after the chest X-ray she took yesterday, but the diuretics should help with that.
Again, I am so grateful to all of you who have responded. I really appreciate it! The med's you are on are quite different from the ones he is on. I think we need to get on the right program, with the right cardiologist and into a GOOD surgeon- who has plenty of experience performing this surgery with a high mortality rate, so that we can get back on with our life! He is very active and this is driving him crazy! He just wants to feel good, again!
LRC
Posted 1/7/2008 8:45 PM (GMT 0)
Hi all,

I suppose you could call me an old timer since I had the procedure at nine years old. I am now 34!

Didn't think much about it until I had to have an operation on my nose and the surgeon insisted I had an echo to check on my heart before I was put under after seeing my notes.

The guy who was doing the imaging took a look and said 'yup youve had a pericardectomy' without knowing my history. I told him I (my parents!) was told that I would be perfectly fine after the operation. He said 'yes but you may have some trouble as you age, I can already see the heart muscle spreading out since there is no pericardium to keep it all together'

So here I am, slightly worried after not thinking about it for 20 odd years. As I have seen from a few of you guys, I also have a poverty of information. However, I am also a scientist (neuro) with some access to cardiac journals through my uni. So if I find anything out I will inform you all ASAP.

one study I am currently looking for is:

Pericardectomy for chronic constrictive pericarditis: risks and outcome

Just my luck, its in the one journal we dont subscribe to : (

take care all

Nick
Posted 1/8/2008 2:13 PM (GMT 0)
Hi LRC, Have had a message from Boog to say he is having problems accessing site. He's really keen to help and asked me to ask if you knew you could e-mail him direct by clicking on the little envelope under his name over on the left of the page? My husband had diuretics and despite being confined to the house for 2 hours after taking them fluid still built up! He lost over a stone overnight post-op. I know you are in a bleak and scarey place right now. You look at you husband and want to cry for what it's doing to him but all I can say is what we were told. He is young and fit - yes it sounded mad to us as well- and will come through this OK. It won't be long until you can breathe a sigh of relief as it will be over and he will be home under your feet! Find the best surgeon you can [talk to Boog he had a Maze as well] and get it done a.s.a.p.Be brave, chin up, you have a lot of friends here. X
Posted 1/9/2008 9:39 PM (GMT 0)
I am new to this website and postings. Basically I have a question about what happens after a pericardectomy? Is it common to have pain in the chest and around the heart after a pericardectomy? Isn't the pericardial sac needed for smooth lubricated movement of the heart? My brother-in-law had constrictive pericarditis secondary to radiation for Hodgekins Disease. Is he ever going to be pain free? Any advise is welcome.
Posted 1/10/2008 5:28 PM (GMT 0)
Can only speak from experience and say my husband had the sort of pain you would expect post surgery that slowly resolved and now he is totally pain free and back to normal. His surgeon said he could manage quite well without pericardium and really what was his choice? However, since researching it it would seem if you're going to get constrictive pericarditis the sort he got following infection is probably best!

Posted 1/15/2008 5:50 AM (GMT 0)
Hi Guys,

 Back from the most beautiful vacation we have ever had. My appreciation for life was good before all these problems but much more for Quality of Life since I have been through this rough 2 year period. We loved it so much we bought a 4 week a year timeshare in Maui and I can't wait to continue that style of life.

 LRC, I hope you have been able to make some progress with finding someone qualified to handle your Husband's procedure. Please feel free to email me if you wish.

 I still stand strong behind Gaudiani's talents. I had 2 Afib ablations at UCSF where they pretty much destroyed my heart condition by puncturing my heart during the 1st procedure and created stenosis during the 2nd ablation and left me with very poor follow up with the condition they created and continued to feed me bad advice. The final advice they gave me was to just deal with it. Not very professional in my mind.

  In response to your question, A maze procedure is a surgery where they open the heart and cut the nerves that are trnsmitting the odd signals that create the Atrial fibrillation. It is obviously much more complex than an Ablation where they burn the nerves to scar them over. No Afib for 6 + months has been great.

 Animal lover, I feel absolutely great, it was the typical after surgery discomfort but now I have no limtations, I hope you can help find your Brother in law some relief as the pain I experienced was almost constant and as bad if not worse of a pain I ever had including broken bones from previous injuries.\

 Charlyboy, I am sorry they rattled you with the comments about long term problems, I consulted several institutions including Stanford and the Mayo before proceeding with the surgery. Yours is the first anybody ever mentioned potential problems in the future. I noticed that you mentioned the Lab tech made that comment, I was wondering what your Cardiologist said about the Tech's comments. I see my Cardiologist in about 2 weeks and I will ask him again on his thoughts regarding long term problems. The specialist at Stanford and 1 East Coast Specialist ( DR Spodi***) assured me they had not heard of that kind of thing before, they called the Pericardium " The trashbag your heart comes in" when you are born.

 I hope things continue to go well for you as you move on in life. It must have been a tough experience as a young boy to go through all that.

 Best wishes and Prayers to LRC and Animal lover's  loved ones as they go through this tough time, As SHerwood told me before I had the surgery, good times are not far away again, be strong and you will prevail!!!!

               Boog

       

 

Posted 1/17/2008 1:21 AM (GMT 0)

Hi Charlyboy, I wanted to take a moment and welcome you to healing well, we are happy to have you join us here.  :-)

Posted 1/24/2008 4:29 PM (GMT 0)
cool  I have a 26year old daughter that has had open heart surgery where the doctor cleaned with his finger the bacteria around her heart.  She had the jack pratt and another tube in her.  She had a large amout of fluid in the lungs and around the heart.  In the first two years after the surgery she was hospitalized every two weeks for two weeks at a time.  The doctors came up with no reason for the pericariditis.  till this day, no reason. She has had severe chest pain in the first two years, living with percocet,morphine, dilaudid, prednison(up to 75 a day), and colchine.  Now withinn the last year the pain has decreased some, I do not know if it has something to do with the weather, but in the begining it did not matter  about the weather.  Now the doctors are suggesting that she has to have the surgery.  She is always tired, has to take b1 vitamin shots, blood is clotting, and the doctor says that she has a cystologic rub(forgive my spelling).  That the pericardium is like jelly and needs to be removed.  since she had the first surgery and they cut undrneath her left breast, now they will have to go through the breastbone.  I believe that the pain she is going throug now or in the past is nothing compared to what she went through during the first two years.  She also has endometriosis, the doctors are testing her to see if this is affecting her pericardium.  she also has restless legs.  sometimes she gets black and blue marks on her legs for no apparent reasons.  I believe that this pericardium is causing the restless legs and the chest pain (which generate into her left chest and shoulder and neck.  The blood flow is not normal.  Reading this panel calms me a little as to the results of the surgery.  I believe that this is a step towards a normal life for her.  But the doctors also state that she can catch pnumonia by not having her pericardium.  Pls send as much info as possible on her experiences.  Same boat, just a different ship.  Thanks alot.  Look forward to hearing from you.   Thanks
Posted 1/25/2008 3:57 PM (GMT 0)
Hi Brendala, I have 2 daughters just a little older than yours so can imagine what you're going through, Your daughter is lucky to have you to support her. Maybe the bruising etc. is caused by problems with her liver. If her heart is struggling the back-pressure will affect her liver which aids control of clotting. As for pneumonia I wouldn't worry too much. No-one on site seems to have been told that although my husband was told he probably got his pericarditis as a tag-on to pneumonia. Either way I made sure he had the pneumonia vax and flu jab too!! You have found the right place for support. I hope your poor girl gets her life back soon. They are always your babies aren't they? Love Sherwood X
Posted 1/28/2008 11:17 PM (GMT 0)

Hi Brendala,

 Sorry to hear about your Daughter, I would love to help calm you about this. It is a scary thing but as you stated there are many people who have been on this site who can attest to finding proper help & getting her back to a normal life.

 I don't know where you are located but a good set of Surgeon's hands are not far away from anywhere these days.

 Please continue to inform us on how things progress. I will pray for your family, keep the faith!!!

 I also have not heard about incresed chances for pnumonia, I have a couple great Pericardium books I have read & I could send them to you.

            Boog

Posted 2/4/2008 9:39 AM (GMT 0)
Hi there,

This is the first time i have tried this website. Reason i'm here - to share my experience.

Two and a half years ago i had pain in my chest. I ended up in Emergency but the nurses couldn't figure out what was wrong with me and subsequently discharged me with a couple of anti-inflamatories. The bout lasted for a couple of weeks, disappeared and then returned two months later for a period of 3 months. about midway through this period i got diagnosed with Pericarditis. I had all the tests in the world to try and determine a cause - nothing! I was monitored by my cardiologist for a couple of months while i took asprin in the evening. Night sweats were horrendous - i'd wake up with speckled blood on the sheets (apparently coming through my pores), my energy levels were low, my mental state was below par and i could barely exercise. Summer came ('05) and i managed to shake it off. I was fairly well for about 9 months, then had another bout in August '06. It was brief. During all this time its fair to say i wasnt my normal self, especially my energy levels. In summer '06 i developed arthritis in my knee - bizarre, completely out of the blue. Doctors thought it was gout at the start, but after testing my blood and finding a common gene (B27) susceptible to auto immune disease, it appeared that the knee and Pericarditis were linked. My knee was in such a bad shape, that i limped everywhere. If i didnt take either Advil or some other type of AI my leg would literally freeze up. I shook it off in March '07 and then developed another bout of Pericarditis in June '07. It lasted two weeks and then returned in July in a more severe form. I ended up in Emergency twice in 3 days then spent two weeks in hospital having approx 30 doctors reviewing my case (idiopathic diseases cause a lot of excitement with doctors). I was all set to be discharged when suddenly my case got escalated at the "Grand Meet" (lots of doctors giving their views) and 24 hours later i had 3/4 of my pericardium whipped out during a Pericardiectomy. My recovery was extremely fast, the only thing that seems to take time is the repair of your sternum. My operation was last August, its fair to say that from October through to Australia Day Long Weekend (January 25) has been very uplifting. I've felt fantastic, back into my sport, enjoying the summer. On the Friday night before Australia Day i went out with some friends and had a late one. I woke up on Saturday feeling terrible. Its now Monday (10 days) later and i have Pericarditis.

You can't imagine how i feel.

...so its back to AI (i'm continuing my colchicine for 6 months post op) and wondering how only 25% of you pericardium sack can make me feel like this.

I didnt notice anyone else in all my readings of this site who has had only part of their Pericardium removed. I would be interested to hear from you if you had.
✚ New Topic locked
123456789