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Pericarditis & Pericardiectomy pt. 7

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Posted 3/19/2007 8:56 PM (GMT 0)
Hi Trinny...

There are several places nearby and we found many of them to be reasonable. I think we stayed at the Days Inn once and a little hotel across from Gonda building...I'm forgetting the name. We also stayed off campus and took a shuttle on one visit. It's all very user friendly. Which MD are you seeing? I had Dr. Tajik and Dr. Wood...and Dr. Schaff for my surgeon. They were great there. Good luck to you!

Nan
Posted 3/21/2007 10:59 PM (GMT 0)
Hi all, Just to follow up. My husband had an appt with his surgeon today. He is delighted with his progress and says his life can go back to normal now. He' passed us back to cardiologist who will monitor for a while until everything has settled down. Reason I post is to tell you all this. The surgeon took pics during the op to send to cardiologist and says he has had people from all over ringing him because - he did the op on the basis that all else had been ruled out and the cardiologist had a 'gut feeling' BUT all the Xrays, scans etc failed to show any thickening. On operating he found the pericardium was almost 1 cm thick and in places was 1.5 cm thick. The moral is no matter what tests say if you feel that bad go ahead. Thanks so much for all of you who shared your stories and gave us the confidence and support when we needed it. It feels like a bad dream now. Good luck to all of you reading this that are out of your minds with worry.

Posted 4/11/2007 3:55 AM (GMT 0)

 Hi Everyone,

 Trinny I was wondering how your visit to the Mayo went. Hey Nan I hope you are still doing well. I have been in touch with Sherwood & it sounds like her Husband is really rolling along. She has been a real positive force in my battle.

 Eric, I hope all is well with you and I have been praying for you and your Father.

 I am slowly getting a little better but everyday that I do much activity I get real sore at night. I haven't tried steroids yet & the sleeping in a chair is getting old fast.

 I don't know how long I can ride this thing out as the pain only goes away for a short time.

 I am going to consult a very high profile Surgeon locally but it sounds like I should consider Cleveland or the Mayo should I need to go forward.

 It is amazing how many Doctors can disagree on the same MRI. The local Doctors at Stanford and UCSF are supposed to be considered good but I don't know how many of these procedures they have done.

 Any other suggestions are appreciated.

 I will not rush into anything until I do my homework.

 Nan, I would love to ask you a few more questions but I will write more in a few days.

                Thanks to all of you, Boog

Posted 4/12/2007 9:23 PM (GMT 0)
Hi everyone. Well it is now 11 weeks since surgery and I wish I could post a before and after photo of my husband! He looks like he has lost 15 years. His eyes are clear and bright, he is eating like a horse, walking, dancing, cycling - it's like a miracle. He has just seen cardiologist who has stopped all tablets apart from aspirin. How good is that? He wants to do another echo to show normal function as he is using his details for lecture purposes. Still a bit of soreness so he's avoiding heavy lifting etc. but improving all the time. Thanks for all your help folks. We couldn't have done it without you. XXX
Posted 4/14/2007 7:38 PM (GMT 0)

That is wonderful news sherwood!!  Please keep us posted on things are going for you both...Take care :-)

Posted 5/4/2007 1:34 AM (GMT 0)

Hi everyone, It has been with me for 1 year but real bad this spring.

 I have really been battling the past few weeks with the Pericarditis along with Afib. It has been 12 weeks since I was told to continue to try to beat this thing with Motrin and Colchicine. I have been told I have acute Pericarditis or another Doctor said I have recurring Pericarditis. All I know it is very painful especially during or after any real activity which always leads to afib that night.

 I have seen several so called specialists and I recently read a book by Dr Spodick called "The Pericardium"    after reading it I called the Hospital where he works and this wonderful guy called me back and talked for almost 2 hours.

 He said my situation is unique and had some answers and left some things in doubt.

 Has anyone ever had a Pericardiectomy and still had the pain after the procedure?

 He told me that is fairly common. I also told him the local surgeon suggested a Maze procedure while he strips the Pericardium. I saw in a earlier thread that someone asked that and I can't find out how they did or even if they had it done.

 I was also told that the stripping is often done when people have or need a 2nd open heart procedure. This surgeon is very well known, doing over 9,000 open heart procedures and said he has removed a few hundred pericardiums being he has done 2nd procedures on over 1,000 patients in his 30 + years experience. He said the procedure takes about 2 hours and that the Maze will take another hour or so. I will need to be on a bypass machine due to the Maze portion of the surgery.

 Any comments regarding any of this would be greatly appreciated as I am tentatively scheduled for about a month from now. Anybody with similar circumstances that would be willing to correspond by email would also be appreciated.

                            

                         

                Thanks to all, Boog

Posted 5/5/2007 1:47 AM (GMT 0)
Hi everyone, We have a new member who has posted a question on the main forum.  I was hoping that some of you who have been through some of these problems will be able to help with some advice/suggestions for them.  Here is the original link to their post and I have cross posted to them the link to this thread also.  So hopefully they wont have any problems finding this thread.  Thank you so much! :-)

arkienks said...Well to start off back around January or so I started having serious palpitations and a really bad "pressure feeling in my chest" that made me kinda cough. I went to dr and he put me on a holter monitor. for 24 hours. Came back and said "you have pvcs" and its nothing to worry about. So I didnt. Well the feelings I assumed I had to just live with. UNTIL last month I went in to get my breast mri and they saw a "incidental finding" of a cyst between heart and lung. Sent me for a CT SCAN. Then I get to go see the dr. He said it was 3cm by 5cm pericardial cyst in the heart sac and we will just check it again in Sept or so.Do another ct scan then. BUT this feeling is driving me crazy. Is this thing going to grow? Will it have to come out for me to feel comfortable again? Will it shrink? I am 36 years old. Has anyone ever had one of these?

https://www.healingwell.com/community/default.aspx?f=42&m=800294&p=1


Posted 5/8/2007 6:26 PM (GMT 0)
Hello All. Well, I finally have a date for surgery. Monday 21st May 2007. The last echo I had showed no evidence, but I saw the surgeon shortly afterwards and he thinks from the previous evidence this is probably because the fluid is off at present and wants to proceed to surgery. He now sees this as a low-risk procedure and needs to be done sooner rather than later so I can get back on with my life. I'll let you all know how I get on!

Nyonuk

Posted 5/9/2007 7:38 PM (GMT 0)

Hi Nyonuk

I just want to wish you GOOD LUCK, and a speedy recovery.

Hi Boog,

I have recurring pericarditis too, but only when I taper lower than 10 mg of pred. I'm wishing you luck as well and hope someone comes along who can relate to this surgery

I will keep you both in my prayers,

Diane

 

Posted 5/10/2007 1:28 AM (GMT 0)

Hello,

I have SLE - lupus - and I had had recurring bouts of pericaditis for a number of years.  I had a major heart attack 4 years ago, followed by a smaller some 5 months later.  This resulted in me having a triple bypass 3 1/2 years ago.  Whilst they were doing that they had a problem getting to the heart muscle because the pericardium was "sticking together" and thick as they said.  So they cut out a piece of it and "left it swinging like a curtain" - their words again.  I haven't had an attack of pericarditis since - fingers crossed.

I can't quote recovery time or anything like that because as I said I had a triple bypass done at the same time.

I wish everyone who is thinking of having this surgery all the luck in the World.

Take care.

goldenwings  yeah

Posted 5/16/2007 12:59 AM (GMT 0)

Hi Everyone,

 I have just made a decision with the Doctors and will be scheduling my Pericardiectomy along with a Maze procedure probably by the 1st week in June. The surgeon is top shelf and has done about 200+ Maze procedures and has done several Pericardial strippings. I will find out the total he has done tomorrow. He did one about 4 weeks ago on a local 40 year old man who seems to be doing well.

 I am as nervous as a guy could get but I really need to move on with my life. It is purely to relieve pain as every night I get terrible pain although no restrcition yet, just some adhesions.

 Did any one else out there get relief of pain , I have heard that not always does the pain go away.

 Any advice or thoughts will be greatly appreciated.

              Boog

Posted 5/16/2007 12:01 PM (GMT 0)

Hiya Boog,

First thing to say is good luck with your surgery.  Your chap seems to be on top of everything and extremey experienced in what he does. 

Seondly, yes I am free of pericardial pain since my surgery.  My original operation was for a triple bypass and the surgeon noted that the pericardium was "stuck" around the muscle and was preventing him access so that was cut too.  As I had been having extremely painful episodes of pericarditis for years and years, to have this done too was such a bonus.    

I have not had a Maze procedure, so can't personally comment on that.   If you are concerned whether it is the best procedure for you personally, then question the doctor until you are satisfied that it is what you need.  It does sound as though it will do the trick to stop the horrid AF though.

Maybe the cases of not having relief after the surgery are because there were other factors concerning the heart.  I would go for the operation with as open a mind as you can and trust the surgeon.

Best of luck with it all.

Take care.

goldenwings yeah

Post Edited (goldenwings) : 5/16/2007 6:09:55 AM (GMT-6)

Posted 5/21/2007 6:44 AM (GMT 0)

Hi everyone!

I have to remember to check in...I have not been getting emails of new postings...sorry for my absence.  Hope you are all doing well.

I have a bit of news for all of you out there who developed post-surgery hypothyroidism...mine resolved!  I did a little "experiment" and went off my meds for 6 weeks...and my values were still normal...yea!  I have to recheck in another month so I'll keep you posted.

I'll be cheering for those of you having surgery soon...you'll be on the other side of it all soon and feeling like a new person!

Sherwood...great news about your hubby!

Nan

Posted 5/22/2007 12:40 AM (GMT 0)
Hi Nan,

 Thanks for checking in.

 Did you ever hear what happened to the lady whose Husband was considering the Maze with the Pericardial stripping. I believe her screen name was Sava or something like that.

 I can't find any record of anyone having the 2 procedures together.

 I have scheduled for June 13th   and of course now that I have the pain and afib are really lightening up. I think its the mind trying to convince me not to proceed, I have heard it can do that.

 By the way, what are the biggest side effects or issues after the procedure. I have heard bleeding and fluid in the lungs. I wonder if those are very common.

 Thanks to all for helping with their advice.

            Boog

Posted 5/22/2007 2:11 PM (GMT 0)
Hi Boog

My biggest side effect was just feeling fragile in the sternum area...sneezing and coughing were scary at first. Pain was managed pretty easily. I felt so much better right away that the pain was minimal to me. The chest tubes were the most irritating part of the hospital stay but it's only for a couple days. It felt great to get those tubes out one by one! I would have the surgery 10 times over for the improvements in my health. I'm young, it was scary, but I'm so glad I did it.

I would say your body is telling you "yes...this is the right choice!" Good luck...I'll be thinking of you!

I haven't heard back on the Maze procedure...I hadn't heard of that either....

I'll stay in touch!

Nan
Posted 5/23/2007 3:26 AM (GMT 0)

Hey there,

 How does a person search or go back to other threads such as pt IX  or any other previous threads regarding this subject. I must be doing something wrong.

    Thanks,    Boog

Posted 5/25/2007 1:33 PM (GMT 0)
Hi Boog...

I'm not sure...maybe our moderator can help.  I've looked back in the past but not lately.

There are a lot of great stories in the archives.  Hope we can get into them.

Nan

Posted 5/25/2007 1:36 PM (GMT 0)

I just changed it to 100 postings per page and went back page by page...it goes back to 2005 so you should be able to read them...they are all named pericarditis and pericardiectomy with different pages.

Nan

Posted 5/25/2007 4:42 PM (GMT 0)
 

 Nan,

 It worked thank you.

 I don't know if there is a way to contact via email or phone. I have a few questions and I want to spare the others all my writing. I got Sherwoods email and we write often but I forget how we did that.

                 Thanks , Boog

Posted 5/25/2007 5:26 PM (GMT 0)
Boog, if you want to contact other members via e-mail or whatever you can activate your address by going into your profile which is located in the control panel next to Log off on the blue bar.  Once you click on that click on edit profile and you will see where you can add your e-mail address from there.  It will show up under your username and members can then click on it to message you or you them if you want.

I hope this was helpful :-)

Posted 5/25/2007 10:37 PM (GMT 0)
Boog I'd be happy to talk with you anytime...I'll look for your email.

Nan
Posted 5/26/2007 5:49 AM (GMT 0)

Thanks Nan,

 I edited my profile. Look forward to talking with you, or emailing if you prefer

           Boog

Posted 5/28/2007 8:41 PM (GMT 0)
Well, I'm home! and it's all done. Got to say it was a lot less painful / scary than I thought it was going to be. I suspect I may not have had the pericarditis as bad as some on here, as I was only on the table for about 2.5 hours. The surgeon said all went well and an echo performed immediately after the op showed improved heart function. Worst part was and still is the pain with coughing or sneezing though pain relief does help a lot. Drains were slightly painful coming out, I had 3 in but overall I'm suprised how easy it all was and how much better I already feel. Wondering now what I'm going to do with myself for the next 6-8 weeks before I go back to work!

Any of you currently awaiting pericardiectomy need to keep positive, I can genuinely say it was no where near as bad as I expected!!! Let me know if there is anything you want to know about the procedure etc. and I'll help where I can.

Nyonuk.

Posted 5/29/2007 1:41 AM (GMT 0)

Nyonuk,

 Congratulations, you are much stronger than I am. I am waiting for my surgery, and I am to have a Maze procedure at the same time. Did you have constriction and pain or just one? Where did you have it done anyway?

 I left my email address for Nan to write me, didn't know if would be possible to email you as well. I had 2 ablations that both went bad with complications and I am not as calm as I was before those. Glad to hear you are doing well.

        boog

Posted 5/29/2007 7:18 AM (GMT 0)
Hi Boog;

By all means email me. Basically my issues began around 2 years ago with what was thought to be a major chest infection at the time and I was off work for about 5 weeks feeling terrible. Shoulder pain, back pain, chest pain shortness of breath etc. This settled a bit but they picked up on X-Ray that my heart was signifcantly larger than a year previous so referred me to a cardiologist at my local hospital in Bath. As time passed the fluid retention set in and I was getting more and more swollen. Initially they thought I had Pulmonary Hypertension and they did a cardiac catheter which ruled that out. I was the referred to the Royal Free Hospital in London where after CT and yet another ECHO they were suspicious of Constrictive Pericarditis. I was the referred to a surgeon at the Heart Hospital for a pericardiectomy. He wanted to check my suitability for the operation before performing it, so sent me for MRI and more Echos. This showed up a congenital isssue also which then had to be investigated by the GUCH (Grown Up Congenital Heart Disease) team in case it was significant also. Eventually it was decided that this was not significant although it did explain why since I was a child there had been a question mark over my cardiac status. In December of last year I was admitted to the hospital for offloading of fluid and I lost about 3 stone (about 42 pounds) in a week and felt a lot better for it. Then as you know they performed the surgery last monday. So it's been a long journey till now. To be honest since the initial episode two years ago I can honestly say there hasn't been much pain, it's been the fluid etc. that has been more of a problem. Email me if you want to know anything else.

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