Pericardiectomy for 16 year old daughter?

Hello,

I am a mom of a 16 year old girl who has suffered for five years with pericarditis.  We are considering a pericardiectomy for her.  I have been told that this will help her by doctors and I have been told it will not.  Does anyone have any support or information that would benefit us to help us make this huge decision? 

Thank you all so much! 

 

Hi Kitt,

I will read the thread, I think I have read several on here specifically about pericardiectomy, so it's been helpful already. 

My daughter had her first attack with pericarditis in the summer of 2009 and it went away after about six days.  Of course doctors didn't have a clue what it was.  She got it again in November 2009 and it hasn't gone away since then.  Of course she has had a few weeks here and there without feeling badly, mostly we count days though.  By the time I found a doctor who actually figured it out (I had found pericarditis via a web search of symptoms for chest pain, it sure fit her but I just thought doctors would know that, how I was wrong), she had quite a lot of fluid and was in heart failure.  She was referred to a pediatric cardiologist at OU Children's in early 2010 and has had it fairly nonstop, even meds don't keep it away for long.  Now she is either getting lots of side effects from the medications she's been on for so long, or her doctor thinks maybe it's a connective tissue disease, but there's no proof, everything shows more or less normal.  Her last attack was in February, it was a really bad one and she was in the hospital for 4 days, was feeling better and was discharged and it came back just as bad about a week later.  Her cardiologist, the attending cardiologist, and her rheumatologist all recommended at that time that surgery would have to be considered.  They all stated that it can be held at bay by medications for as long as I want, but medications are tearing up her stomach and causing other side effects, hair loss, nausea, etc. 

We scheduled a meeting with the new surgeon, who had just came here from Mayo Clinic in Rochester.  He stated that if what she had was strictly pericarditis, and not related to another disease (who knows?), that he felt very positive that she would do great on the surgery and not have any additional problems and be able to be off medications.  I learned fast in the beginning and learned to say no to any steroids as much as possible, so she is not steroid dependent. 

Sorry, this is rambling.  As of now her cardiologist and rheumatologist and another cardiologist at OU have all recommended surgery in the future.  Her adolescent internist doctor, along with a few of the leading researchers in Italy, have recommended not doing a surgery, they are concerned that it will just cause other problems.  There is no proof either way on her tests she has had done.

Thank you so much for the sweet words and prayers. 

Post Edited (KattOK) : 3/21/2014 9:47:01 AM (GMT-6)

KattOK,

I have not abandoned you - my own hubby was admitted to the hospital yesterday with dx of congestive heart failure and renal failure so I am spinning my wheels. He is 67 years old.

I understand your fears and I will email one of our members that is wise in the ways of the workings of the heart.  I want you to feel more support from HealingWell.  I will be online as much as I can.

Prayer to you my friend,

Kitt.

I'm sorry to hear of your continued problems. It must be quite frustrating.

Some links and thoughts.

my.clevelandclinic.org/heart/services/procedures/pericardiectomy.aspx

I started to ponder imaging techniques, just as an inquisitive type, not from any professional background, which I don't have.

Nevertheless, this article addresses causes of pericarditis, briefly, and imaging techniques used for diagnosing same.

m.circimaging.ahajournals.org/content/3/3/333.full

I'm curious if they have used advanced imaging techniques. Please read this article if you have not yet done so, you may glean additional information.

Another on imaging and again info on pericarditis.

imaging.onlinejacc.org/article.aspx?articleid=1109614

Another, more focused on imaging techniques.

emedicine.medscape.com/article/349447-overview

And another, very comprehensive discussion of the images and findings.

www.jcmr-online.com/content/11/1/14

I hope these are of some assistance. You have decisions to weigh, I have been there before as well. My son was born without a muscle group on one side of his chest. The original pediatricians told us that my son would be fine without the group, another doctor told us that without surgery and procedures he would be deformed. We elected not to have the procedures, he's in his 30's now, he's just fine.

Myself, not being fully aware of all the factors and not having the education to understand them, would probably be careful, I'd want to be sure of the cause of the pericarditis, rule-out inflammatory processes by testing (if possible), and would want to be sure the heart and pericardium are clearly imaged to preclude any surprises.

Best wishes for health for your family.

Katt,

I am back and my hubby is home and doing well.  He will see a cardiologist next week.

I found this thread:

https://www.healingwell.com/community/default.aspx?f=42&m=1622252 that may provide you with more info.

I also found this link which I hope we have not already posted here for you and it does speak to recovery time.

http://my.clevelandclinic.org/heart/webchat/1275_pericarditis.aspx

I know how worried you must be about your daughter as  a pericardiectomy is usually regarded as a last resort, as the surgery is relatively risky.  However, now days we are fortunate to have great hospitals and surgeons who have experience in performing this surgery.

If it is the one thing that can give her back a full life so she may enjoy her younger years than making the decision may be hard but know you have much support here in the forum.

Also, we have a super Anxiety and Panic forum so do feel comfortable posting in that forum as you are surely experiencing high anxiety while making all these decisions. 

My prayers are with you,

Kitt

Less than two weeks away from my daughter's surgery (pericardiectomy).  I hope we are making the right decision.  I guess everyone wonder's these things.  I hope and pray that this makes her better, that her surgery goes great, that she is not in too much pain and that her recovery goes great.  I hope this helps make her better, so she can start living again like she used to before this horrible disease.  So many worries, so many hopes as a mom.  Just thinking out loud. 

Thanks for listening.  :)  Blessings to all.

Kitt,

Thank you so much for the encouraging words and support.  That means so much.  I will let you know how things go.  I may not be online much for the next few weeks.  I think she will do good, just worry as a mom and not wanting to see your "baby" go through so much. 

Thank you for caring and for the prayers and support!! 

Many blessings to you and yours.

 

Thank you so very much. And I agree totally, I'm always watching for the butterflies. Which reminds me, I got a tattoo a year ago for my birthday, it has my daughter's name and she picked out a butterfly and the colors. :)
KattOK

KattOK Awesome news and tell your daughter many people were praying for her procedure to be successful.  Now you and your "daughter" can do fun things together without so much fear. After 5 long years of being sick may she have 95 years of being well.  Again you have to be proud of both you and your daughter as the long wait was very difficult for both of you. 'And my heart will go on and on..... ღ ♫ ღ ♫ ღ ♫ ღ ♫ ღ ♫ ღ ♫ ' Blessings, Kitt

Today has been exactly 5 weeks since my daughter's pericardiectomy.  She is doing amazing!!!  She is able to breathe again, and do some light exercises.  She is very "out of shape", it's been a whole 5 years of nonstop inflammation from pericarditis sometimes with some fluid build up, so she has not been very active the past 5 years.  That will take some time, but at least now she can do things and can breathe!  :) 

Her chest scar looks great and has healed well.  Tube holes finally are healing.  She is off all meds other than a small dose of ibuprofen for pain (just pain from the surgery, I hear that lasts a while). 

Blessings everyone!