Pericarditis & Pericardiectomy pt. 7

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els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 1/5/2007 7:37 AM (GMT -7)   
Hi everyone! :-)    I am starting a new thread for you all as the other is getting a bit long and hard to manage.  I hope the new year has found everyone well and happy....Take care :-)

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 1/8/2007 8:05 PM (GMT -7)   

Hi Sherwood and all...

I was catching up a bit on the last thread...I haven't posted for a while.  I'm an old-timer...2 years post pericardiectomy...I still feel great and recently qualified for regular old health insurance vs high risk so that was exciting.  I know there are others on this thread from the UK...I'm blanking on the names right now.  Have you read back quite a bit?  My advice is get it done asap...it doesn't go away.  It's risky but so is waiting.  All the best to you.  If my story would be of any help to you, I'm happy to share.  Hope everyone is doing well...would love to hear from the old crew!

Nan


sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 1/13/2007 4:03 PM (GMT -7)   
Soooo pleased to read this. My husband is having op on 25th. We are lucky as we are fairly close to a cardiothoracic centre supposed to be the best in Europe. Feel a bit better having met surgeon and ward staff. We are told is a long fiddly op. and danger of bleeding post-op. His surgeon tells me he is going to keep him 'under' and on a ventilator in ICU until he is sure that danger past so he does not have the stress of going under anaesthetic again if he goes back to theatre-gulp. That will be the worst time of my life. Also says he may need to go on-pump if back is difficult to get to. We're hoping all will go well and he'll be home in a month but when something like this hits out of the blow you start to think 'Well what else will happen' Please tell me how long you were in ICU, in hospital, in real discomfort[tell I'm a nurse-we don't say pain!] Do you still need any medication etc or are you back to normal? We are told beacuse of his age he should do well - I keep thinking a month and it will be over and he'll be home. Thanks again for posting. Because this is so rare nowadays we have felt v. isolated.

Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 1/14/2007 8:07 AM (GMT -7)   
Hi!
 
I was in ICU for 1 day...I woke up and I was still intubated but not for long.  That is a foggy memory.  My surgery lasted about 3 hours.  They went in through the sternum.  I was on bypass for 32 minutes...going in they didn't know if I'd need that but I did.  I was in the hospital for 5 days.  My recovery was great.  I was up walking the day after surgery.  I felt very fragile but no pain unless I sneezed (I was terrified of sneezes).  I stayed on top of my pain meds so the pain wasn't too bad.  The biggest surprise and the worst thing right after surgery was my chest tubes...they stayed in for 4 days...very gross.  Those wounds took a long time to heal too.  Now I call them my bullet holes in my stomach :)
 
I was 36 when I had my surgery...2 little kids at home...I couldn't hold my 18 month old boy for 12 weeks...that was tough.  You can't lift anything over 5 pounds for 6 weeks...you would be surprised at what that limits you for lifting.  My scar healed okay but I pushed myself too much and it broke open in one spot so it is uneven but my own fault.  My 6 month and 18 month followup appointments were totally normal for heart exam...all pressures, size and function was normal...which was a huge relief.  I don't need any heart medication.  I now need thyroid medicine as I became hypothyroid after surgery.  Interestingly, about 7 out of 9 of us on this site became hypothryoid after surgery.  Have you had a chance to look back at some of the old threads.  I can't tell you what a relief it was for me to find this site right before my surgery and read about other young people who "survived!" and "felt great!".  I will say that I have felt great ever since surgery.  I hadn't realized how lousy I felt until I felt well again.  I'm so thankful they figured it out and that surgery was a "fix" for the problem.  How long has your husband had symptoms>  How old is he?  My husband will relate to you during the wait...it was the hardest time for him....much harder for you guys than us patients I think.
 
I hope this is helpful...let me know if you think of anything else.  When is surgery scheduled?  I'll certainly keep both of you in my prayers.  Stay in touch.
 
Nan
 

nyonuk
New Member


Date Joined Sep 2006
Total Posts : 17
   Posted 1/14/2007 8:41 AM (GMT -7)   

Hi Sherwood;

Where is your husband having his op? I'm still waiting for a final decision on mine. They found a congenital abnormality whilst investigating it and I think that threw things a bit. Looks like your husband will be ahead of me! I've been struggling with this for nearly 2 years now and will be glad to get it all over with. I'm currently under the care of the Heart Hospital in London. I wish you and your husband all the very best for the op. and recovery afterwards!


sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 1/15/2007 8:51 AM (GMT -7)   
Hi Nan, I am ready to weep thinking of you not able to lift and cuddle your babes-that must have been the worst. Thing my husband is dreading is the shaving as he is so hairy! He is 57 but thinks he is 27 and to be honest so did I but this has aged us both. I think all we need is a few good nights sleep though, You know how the 'What If' Monster comes out to haunt you at 2 am. With hindsight we know know he got pericarditis in March 2006 and it was misdiagnosed by about 4 doctors and only when he was taken in to hospital waterlogged and with a DVT did investigations find out. We hoped they were wrong about constriction and it would get better but has got worse. The gym and swimming have long gone and our dancing is now limited to waltz and slow foxtrot. Surgeon says could be 7 hours or more in surgery, could be 2-3 days in ICU. It makes me feel much better to read stories like yours and to know other people know what it's like. We have been told he might make it home after 6-7 days and for first 3 nights I have a room on site so will be nearby. We must count our blessings as at least this is something that can be cured. Fascinated re thyroid as can't think of a reason for it. Will post our tale when it's all done. Thanks a lot. X

Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 1/15/2007 1:00 PM (GMT -7)   
Hi Sherwood...

When is surgery scheduled? I'll keep you in my prayers. I was misdiagnosed for over a year as well...very frustrating. He is young, and his good health will help him recover. I bet he won't believe how good he feels when all is said and done. Other than regular recovery/wound/tubes etc...I felt better the minute I woke up...my head did not feel like it was going to explode for the first time in over a year. I had the insomnia too before surgery and was amazed to feel rested. Please keep in touch...we will walk the journey with you! All the best to you.

Nan

jeatonov
New Member


Date Joined Dec 2006
Total Posts : 2
   Posted 1/17/2007 1:52 AM (GMT -7)   
I am very happy to find this page.
I am having a pericardiectomy next week. I had been searching for this type of site for several months. I guess I am one of the lucky ones, because I was diagnosed right away, not much run around. I have visited three different Cardiothoracic surgeons here in Seattle, all had the same diagnosis and all recommended this pericardiectomy. I am 36 year old that had a case of pericarditis 5 years ago, and have felt very worn down over the last few months. Nan - it is great to read that you have had such a good recovery - I guess there is hope!!! My biggest problem with this surgery will be that I will not be able to carry and hold my sons 5 year & 20 months). I am meeting with my anesthesiologist tomorrow to discuss long term pain management... so pain is not my biggest concern. I have been told that I should expect 5 days in hospital and will be taking a minimum of 2 months for recovery. I will let you all know how things go on my journey down this road.

Jeff

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 1/17/2007 8:22 AM (GMT -7)   
Welcome to Healing Well Jeff we are happy to have you join us here.  I hope you find this forum informative and supportive and continue to post often.  Take care :-)

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 1/17/2007 10:33 AM (GMT -7)   

Hi Nan, He is going in on 24th Jan, having surgery p.m. on 25th. Surgeon says could be a long wait but he will come and get me as soon as surgery is over and tell me details and walik me to ICU. He has also been told could only be 5 or 6 days in hospital. Only worry is liver emlargement caused by engorgement. They have rooms on site that relatives can stay in so will be there for the first 3 nights. I don't think I would be fit to drive! I can't tell you how much it means to get some support like this. No sites at all in UK and no groups etc. I'm thinking of setting one up when this is all done. Hopefully in 2 weeks I will be saying 'He's feeling battered but better'. Will let you know as soon as I can get to net access. 

Mant thanks Sherwood. X


Mrozek
Regular Member


Date Joined Mar 2005
Total Posts : 61
   Posted 1/17/2007 10:41 AM (GMT -7)   
 
 
Jeatonov.. 
 
I wouldn't worry about the pain...  that was not my problem..
 
I had pericardiectomy 16 mo ago...  had rehab...  made a remarkable but slow recovery... in my case, recovery (gaining strength) took three-four times longer than I was told...  (unfortunately, I'm 20 years older than you...)
 
At this point, the only thing left is my thyroid problem... after the surgery it dropped and it is still low... I still hope that slowly it will come back... 
 
What happened to Kenneth and Elvira from Hong-Kong?   I'd love to read about her recovery...
 
-mrozek

nyonuk
New Member


Date Joined Sep 2006
Total Posts : 17
   Posted 1/17/2007 2:18 PM (GMT -7)   
Hi Sherwood;
 
Just to let you know, I'll be thinking of you and your husband on the 24th / 25th. Keep positive.
It may well be worth setting up a site  / group for similarly affected people, there is, as you say, very little available in the UK.
 
Regards and best wishes to you both,
 
NyonUK.

sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 1/18/2007 12:19 PM (GMT -7)   

Hi nyonuk, Hope you got my e-mail with all details of hospital etc. Thanks for your good wishes. It helps to know others have gone through it. I'm sitting here tonight wondering if this time next week he'll be out of theatre. Will let you know how we get on.

Cheers


nyonuk
New Member


Date Joined Sep 2006
Total Posts : 17
   Posted 1/18/2007 1:44 PM (GMT -7)   

Hi Sherwood;

No email as yet. I'll keep checking though.

Nyonuk


sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 1/19/2007 3:09 PM (GMT -7)   

Should have been there days ago. Will try again.Probably me as am bit of a luddite!

Only just found out how to go back and find other postings re pericarditis.


Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 1/21/2007 9:05 AM (GMT -7)   
Hi Jeff!
Welcome!  I remember the relief of finding this site right before my surgery as well.  I also have young children and my youngest was 18 months old when I had surgery...you get creative getting on your knees for hugs and holding them on your lap with pillow protection :)  All I can say is the time goes fast and you'll be full strength before you know it.  I was 35 years old when I had my surgery...I'm 2 years out now and like many others on this site, have only a persisting thyroid deficiency which I take meds for...otherwise, no other limitations or medications.  Let me know if I can help in any way...God Bless you next week...I'll be thinking of you and praying for a successful surgery and a speedy recovery!
 
Sherwood!
That same prayer goes for you...It is certainly a scary experience.  I remember looking forward to waking up and just having someone tell me "it went well"...then I didn't care about pain or anything else, I knew I could get through it if the surgery went well...recovery was just a matter of time.  Tell your hubby to make friends with a pillow and squeeze it tight for the first few weeks...I think I slept with my heart pillow for over a year...it was hard to be comfortable, especially laying on my side...anyway...please post when you have a chance...
 
Good luck you guys...we'll be here to hear how it went and to support you through your recovery!
 
Nan

sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 1/21/2007 1:16 PM (GMT -7)   

Thanks Nan, My feelings are once they have him off the ventilator we'll be OK. I just dread seeing him linked up to that. Fuinny thing is I'm also qualified as a midwife and some of my happiest working days were on SCBU where I mainly looked after the really tinies that were all on vents. So different when it's one of your loved ones! Will let you all know asap.

Thanks for caring Sherwood X


jeatonov
New Member


Date Joined Dec 2006
Total Posts : 2
   Posted 1/21/2007 2:35 PM (GMT -7)   
 
Thank-you for your words.  I spoke to the surgical team end of the week - and I was reassured that it is a difficult road to recovery, but that it is worth it long term.  I asked about thyroid issues and was told that I should be fine?  I am going in with a positive attitude.  I understand the need for creativity with my kids. 
 
Thank-you all in advance for all your positive thoughts.
 
Jeatonov

noturningback
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 1/22/2007 5:10 AM (GMT -7)   
Here is my story/experience...
44 year old male, smoker, high fat diet, desk job, no regular exercise program, family history of osme heart disease

Chest pains/shortness of breath around christmas. Went to Emergency room.
Dr sent me for stress test, result led to heart cath monday jan 15.

came out of that and was told 'right side of heart getting no blood from arteries..100% blocked.......left side 70-85% blocked.

Bypass surgery scheduled for Tuesday morning 1/16/07.

Surgery took about 7 hours. Arrived in ICU 2:00 PM....released from ICU after 24 hours Wednesday afternoon. went into s Step down unit

Was told I was in good enough shape to go home on Friday moring 1/19.

I decided for my family's sake to wait and leave Saturday morning which I did and am now home.

Here are some things I think that helped me or could have:

one week before surgery i went on strict low fat diet and drank only water - forget about the BIG last dinner.get your body ready to recover.drink as much water as you can...i did over a gallon a day for a week.i think it helped me.

Biggest challenge is getting up and down...trying to stay alot more up than lying down...... cant pull with arms due to the incision.practice folding arms across chest and sitting up before you go in...need abs in shape.........

I have lots of aches and pain in shoulders/chest...muscle type pain.i have been given some muscle exercises to do twice a day............ woud like to have been doing them 2 weeks before surgery- bet it would have helped

sherwood
Regular Member


Date Joined Dec 2006
Total Posts : 111
   Posted 1/22/2007 9:16 AM (GMT -7)   
Thanks so much for thinking of others when you are only just out of hospital! This is just the sort of thing we need to read to encourage us. Fingers crossed I will be able to log on as quickly as you when my husband has had his surgery. Get well soon.

noturningback
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 1/22/2007 9:42 AM (GMT -7)   
My prayers are with you guys...... I am sure everything will go well.....tell your husband I learned this..."when you are flat on your back the only place to look is up"

llove
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/22/2007 8:16 PM (GMT -7)   
Does anyone know what causes paracarditis to return after ten or so years? I thought I was "healed" after being symptom free for so long.

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 1/23/2007 10:43 AM (GMT -7)   

Hi everyone! :-)   Please welcome our newest member llove to the site.  They have posted a question over on the main board that I am going to copy over here in hopes that someone may have some answers or suggestions for them.  I hope this finds everyone well and happy...Take care

llove said...I'm interested in knowing if anyone has an idea why paracarditis would return after ten years with no symptoms/flare ups. I had my first bout at 23 (I'm now a 41 YO female). At 23 I had a paracardial window. For the first five or so years, I'd have flare-ups every year and I'd have to take Naprosyn and/or steroids to clear it up. I was just wondering if anyone else has ever had it to return after so long.
Thanks

 


Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


noturningback
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 1/24/2007 9:00 AM (GMT -7)   
I would answer bt do not know waht that is you say you have

Mrozek
Regular Member


Date Joined Mar 2005
Total Posts : 61
   Posted 1/25/2007 9:49 PM (GMT -7)   
llove...
 
My understanding is that pericarditis can flare up for decades... no problem as long the pericardium keeps its flexibility... I read somewhere that hokey players often have it...
 
The real problem is when the pericardium starts to calcify.... I also read somewhere that the flare attacks graduallly disappear... you may outgrow it...  it seems, that is what happened with you...
 
That is very lucky...
 
By the way Dr. Ralph Shabetai wrote THE book about pericarditis... even I understood most of it.
 
-mrozek
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