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Posted 2/17/2005 10:58 PM (GMT 0)

Hey everyone,

Just want to tell everyone that the long term prognosis for a pericardiectomy can be very good.

I had mine in 1985 and I seem to be still here and fairly healthy(I am now 56).  The need for mine was caused by radiation treatment to the thorax to treat Non Hodgkins Lymphoma (yes I am still here even after that and chemo)

About a year after the radiation, it apparently caused the pericardium to turn leather-like and

cause contrictive heart failure. I won't get into all the details, but I ended up in Johns Hopkins, and was the life of the party for all the med students, because I was kind of a rare case for them to learn on. I had massive amounts of fluid in the pleural area and could hardly breathe, legs were badly swelled also.  

Had the operation, in one day my weight went from 237 to 219 and even though it really hurt, (until the sternum healed)  I could breathe again. 

Been pretty healthy until three years ago when I got atrial flutter, probably a resiual effect from the radiation treatment way back. The flutter was finally fixed with a catheter ablation procedure.

So here I still am.  Still walk 3 miles a day....

Good luck every one...you should be fine....

Phil  

Posted 2/18/2005 2:45 AM (GMT 0)
Phil,
Thanks for your post. It helps alot to hear from people who have had good results even with a bump or 2. Your experience will prove very helpful to others here. So, welcome and hope to hear from you often.
Vinny
Posted 2/20/2005 1:42 PM (GMT 0)

Thanks Eric and others for all the info.  It has been great hearing from others who actually went through this.  For my husband, the next step is a PET scan.  When my husband had a chest cat scan with contrast, some lymph nodes were enlarged.  The radiologist didnot feel that this was significant, but one of the cardiologists want to do further testing to rule out malignancy.  The cardiologist form PA.  feels that the chances are low that this would be the case since the thickening around his heart was first diagnosed around 10 years ago. ( it only this year has affected his activities.).  He should be having the PET scan next week.  I'll keep you posted.

Thanks for all your support.  I need it. 

Diane

Posted 2/26/2005 7:34 AM (GMT 0)
Hello everyone,

I am a new member to this list, and I have a story to share as well.   My mother-in-law had a small stroke from a blod clot which formed in her lung.  The clot was formed because of constrictive pericarditis and she is going to have the pericardiectomy at Johns Hopkins as soon as it can be scheduled.  What makes her case a little more complex she has a limited pulmonary capacity because of a previous surgery to remove one lung, and the scar tissue on her remaining lung.

I am an Pediatric ER nurse by profession and my wife is a Speech Language Pathologist who is specialized in oral motor feeding so we have quite the medical background in our household.  We have many questions for people who have actually undergone the proceedure.

1) She has a decreased appetite as a result of the lung removal, does the proceedure cause a decrease in appetite and if it does, what do the docs/therapists do in order to restimulate the appetite?

2) Did anyone go on a regimen of antidepressants prior to the surgery in aid with the post surgical depression?

3) DId anyone do therapy with speech therapy/occupational therapy for feeding problems?  WHat kinds of therapy did the physical therapists do to build strength after the operation? And do they recommend any kind of therapy before the surgery?

I am sure I will have plenty of more questions before her surgery

Thanks for all your help

Tim

Posted 2/28/2005 6:07 PM (GMT 0)
Hi Tim!

I can't answer as well as the others who've already been through this procedure, but I did want to say Hello and offer my best wishes to your Mom!

Re depression in general. Anyone who has any major illness, especially involving a previous stroke and heart disease is subject to depression. I qualify under both accounts and have been taking Lexapro for over 2 years now since I was diagnosed with Heart Failure. Does your Mom suffer from this now?, from the stroke? Loss of appetite goes along with depression as well in some people.

As to starting a regimen of antidepressants preop, I, personally have not heard of this? Anyone?

I'll let the others who have been there try to answer the rest for you.

Good Luck and best wishes to your Mom and all of you! Teri
Posted 3/2/2005 6:46 PM (GMT 0)
SO glad to have found eveyone's success stories on this site.  Thank you so much.  I am a 40 year old female.  I had a pericardial window in September and they removed 900cc's of fluid from the pericardium from a viral infection.  Unfortunately, the fluid has come back.  Now they are talking about a pericardiectomy.  Here's the catch, because I already had a pericardial window, they can't go through the sternum.  They have to go under my left breast.  Has anyone heard of this?  They are reluctant and are waiting for more fluid to build up.  I feel like a time bomb.  Any help would be grateful.
Posted 3/3/2005 1:35 AM (GMT 0)
Hi and Welcome to HealingWell, Frand1118!!

 

I'm so sorry to hear of your current health problems, and I'm hoping that some of the others that have been through this are able to help answer some of your questions!

 

Take care and keep us updated.  Teri

Posted 3/3/2005 3:34 PM (GMT 0)
Hi Frand,

My husband's doctors ar now suggesting the pericardial window as opposed to the full blown pericardectomy.  Can you please tell us what your recovery time was?  How long you were in the hospital etc. I am concerned because first they wanted to do the pericardectomy and just last week they said lets try the window.  It seems like a guessing game.  But now that I hear your story, I am wondering if this happens frequently.  I do know how you feel about being a time bomb.  I feel that way for my husband and things move so slow.  Thanks for you answers.

Diane

Posted 3/3/2005 4:25 PM (GMT 0)
Hi and Welcome to HealingWell Diane!

 

I hope that your husband will get through this procedure with no problems and be feeling better real soon!

 

Best Wishes!

 

 Teri

Posted 3/4/2005 2:05 PM (GMT 0)
Hello to all of you.  I can't believe I've found you after being so alone for the past year.  It's been a year since I've been short of breath.  I'm only 28 years old and I have two toddler girls who were 2yrs and 3yrs so I think I noticed my symptoms right away which proved to be too early.  I've had countless normal echos, 2 normal chest x-rays and one MRI saying my pericardium was thickened in some areas but only to 2mm which does not qualify for constrictive pericarditis.  I had a right heart catheters with Baird(exercising) tests which showed either constrictive pericarditis or restrictive cardiomyopathy.  At first they told me I probably had pulmonary hypertension(fatal) then probably restrictive cardiomyopathy(fatal), then probably constrictive cardiomyopathy.  We were thrilled after the prior two diagnosis.  I wanted on with the surgery but then the MRI ruled it out and we're back to square one?????  One of my Drs and myself are still leaning to constrictive pericarditis.  My symptoms are shortness of breath with little exertion, can't lie back or I feel like I can't breathe, swollen hands and feet.  I'm also having joint pain and Irritable Bowel but they think that it may all be part of a connective tissue disease which can also cause pericarditis.  I've had chest pain/pressure on and off but the past few weeks have been real bad.  I can't lean back at all , have to lean forward or I get this crushing pain not just pressure but pain in my chest.  Anyone have this problem or similar one? Sometimes it's so bad I feel it go through to my back.  I don't know if this is active inflammation or if this is the new phase of whatever this disease is but I can't handle it.  It's disabling me emotionally and physically.  Although, nothing comapres to the horror of thinking I was going to die and be ripped from my beautiful little girls and amazing husband.    I would really like to know how long all of you had symptoms before a diagnosis.  And what symptoms you had.  You're information is great for the pericardiectomy.  I just need help to know if my DRs are on the right track or not.  I also lost 30lbs in a month and a half but my jeans got tighter around the waist.  I'm thin and they tell my my liver doesnt'  seem swollen but why'd I go up in paint size after losing all that weight.  And no I'm not pregnant!!   This is where I wanted to enter a little happy face guy but I don't know how to do that either.  I obviously need some help from you wonderful people.
Posted 3/4/2005 3:11 PM (GMT 0)

Dear Have Faith!  That says it all!  You sound like a pretty tough cookie going through all you have already.  I'm not a Dr. so I can't really comment too much further on your condition.  I do want you to know that you are so welcomed here and if there is anything that I can find to help you out, I will try.  Perhaps one of the others can comment further on this.

Re the funny smilies.  Just click on the board where you want them placed and then click on the smilie! yeah

Hang in there HaveFaith and please keep us posted as to how you are feeling and what's happening with you!!

 

Teri

Posted 3/4/2005 3:19 PM (GMT 0)
Here is a site that I found that really gives the A-Z on constrictive pericarditis. I hope this helps you out, HaveFaith!

http://health.yahoo.com/ency/adam/001103/0

Teri
Posted 3/5/2005 3:42 PM (GMT 0)

To Diane S

I just wanted to let you know that I have ultimate trust in my Dr and she made a lot of sense when she said to me that it's better to do the full pericardiectomy.  It would be awful to have to go through the window only to need  a full pericardectomy afterward.  Although if

I have constrictive pericarditis, it is from a connective tissue disease which means reoccurrance would be likely.  I thought you sounded as if you wanted an opinion so I gave you mind.  Good luck in whatever you and your husband decide.  My father used the analogy of a mythology story about a man with a sword over his head waiting for it to drop.  I shuddered when he said it-SO RIGHT!!! 

Post Edited (havefaith) : 3/5/2005 1:26:20 PM (GMT-7)

Posted 3/6/2005 1:22 AM (GMT 0)
Hi havefaith, we're glad you found us too. Your gonna love it here! There's a wealth of experience and support here. The people are great and we all try to help when we can. Welcome!
Posted 3/8/2005 3:19 PM (GMT 0)
Diane S, HAve Faith has it right.  Why not do the pericardectomy rather than the window?  I had a window.   Recovery was easy.  about 2-3weeks.  What you need to ask the Dr. is this.  If they do a window and the fluid comes back..how would they get the fluid.  They can't go back through the sternum..thats what my problem is.  I had the window and the fluid came back.  Supposedly, they have to go under my left breast and it is much more difficult and dangerous.  longer recovery as well.  If anyone on this board has heard of this situation, please let us know.

Posted 3/8/2005 5:42 PM (GMT 0)
Thanks for your thoughts, Fran.  If any others have had this situation, as Fran has already asked, please give us your thoughts!

 

Teri

Posted 3/9/2005 4:00 AM (GMT 0)
Hello Kurtiss,

Your story is identical to mine. During an ablation for atrial flutter the constriction and the scarring of the heart was discovered. A CT scan showed the calcified pericardium very clearly!! That was about five years ago I think. When I developed atrial fibrillation I had to have a pacemaker. By the way betablockers made me very ill. I have read somewhere that they are wrong for people with a constriction. The amiodarone I could not continue with, my liver and thyroid gland were badly affected.

On the scan the pericardium showed up white, that means it was as hard as a bone.

Anyway my pericardium was successfully removed last year in December. The procedure went very well, although the risk is high. At the moment I am still doing very well. I stayed in hospital for only five days!! I know I have been very lucky. My condition was very rare, it is rarely seen in NZ these days.

By the way I live in Christchurch, New Zealand.

Ask away!!!!!!!!!!!

Please keep well.

henk

NZ
Posted 3/9/2005 5:40 AM (GMT 0)
Welcome to Healing Well, Dancing_Water! yeah

 

Thank you for the information, I've been learning so much everyday about constrictive pericarditis.  It sounds like you've already had a lot done.  Are you feeling okay now, or do you still have a lot of problems?

 

You are right when you mentioned that with constrictive pericarditis that Beta Blockers are not recommended.

 

How is the Atrial Flutter now?

 

It is so nice to meet you~come on back and let us know how you're getting along!  It's so nice to have such diversity amongst our members.

 

Take care and best wishes.

 

Teri

Posted 3/10/2005 1:29 AM (GMT 0)

Hi everyone!  I've been off for a while and keep forgetting to check this site.  I was surprised to see all the entries!  I'm doing great and now back to work and able to finally pick up my son (30 lbs).  I had my pericardectomy Dec 15 and I've been feeling great.  In fact, looking back, I haven't felt this good in years.  I think I forgot what feeling good felt like...what normal was.  Have Faith...they also looked for over a year for me and gave me some terrible options.  I was relieved to have this as my final diagnosis.  I'm 35 years old.  I also was very short of breath with lots of chest and neck pressure.  My stomach was also distended...ascites? I think it may have been.  My liver was enlarged too.  Anyway, that has all resolved.  My MD's at Mayo said they rarely do the window anymore because the outcome is not as good. 

I'll keep checking the site.  Let me know if I can help in any way!

Nan

Posted 3/10/2005 2:14 AM (GMT 0)
Hiya Nan!

 

Glad to see you here and am very happy to know that you seem to be doing so well now~Congratulations!!

 

Please keep checking in with us, as we/I can always use the help from someone who's already been there!

 

Best wishes, Teri   tongue

Posted 3/10/2005 3:03 PM (GMT 0)
Tim...hope your mother-in-law's recovery is going well. I'm also an SLP so I tuned into your questions about the feeding. My appetite did not decrease significantly after surgery...some, but I was able to eat some at every meal. Are they able to remove the scar tissue on her lung at all? I also did not deal with depression but I know that is common. I had the opposite effect, almost euphoric, I was so happy to be feeling better and have hope to be around for my kids. Let me know if I can help in any other way. I did not have any therapies but looking back I think I should have had some cardiac rehab to increase activity under supervision...I don't go back for a checkup for 6 months which seems kind of long.

Nan
Posted 3/10/2005 8:17 PM (GMT 0)
Its good to hear from you Nan and that your feeling so well!  Yippie!  Hugs, Pat
Posted 3/11/2005 3:26 AM (GMT 0)
Thanks Pat! It is a relief for sure. I'm so glad this site exists because there really isn't a lot out there about this surgery. It was such a relief to find this site and hear from people that had gone through the surgery...gave me hope. I'm happy to share my experience if it does the same for anyone else.

Nan
Posted 3/14/2005 6:21 AM (GMT 0)

Barb,

I am a 42 year old female, and I too am about to have a pericardietomy for constrictive pericarditis...I am going to the CLEVELAND HEART CLINIC, I have been to hosptials all over the world before I decided upon this one, I have learned quite alot, if you want to contact me, please do at [email protected]

thanks!

Posted 3/14/2005 6:33 AM (GMT 0)
Wow, I am so surprised to see so much about this, I was diagnosed three years ago with constrictive pericarditis and have 16mm of calcification encased around my heart. They recently found that my right ventricle is caving in due to the weight of the calcification and i am set to finally have surgery June 6th. I have had three newspaper atricles written about me, as the condition is so rare, and they continue to write about my progress. IT is good to hear that someone else has had the surgery and survived, I had only found the stats at one hosptial and they had four patients, only two had survived the surgery. I have been to THE MAYO CLINIC...CEDAR SINAI and THE CLEVELAND CLINIC and finally decided upon Dr. Bruce Lytle at the Cleveland Clinic, because the condition is so rare, it is difficult to find anyone with much experience with a pericardiectomy. I have two young sons and it has been difficult picking a date to go and have this done. Anyone that has any advice or has been though this, please email me, I would love to hear from [email protected]
thanks!
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