Pericardiectomy for 16 year old daughter?

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KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 3/19/2014 10:09 AM (GMT -6)   
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! 
 

stkitt
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Date Joined Apr 2007
Total Posts : 32602
   Posted 3/19/2014 10:57 AM (GMT -6)   
KattOK,
 
Hi, this is Kitt.  The first thing I have done is pulled up a really old thread just fyi and you will probably want to start on page one.  This thread has lots of interaction between the members which often helps you find the  info your seeking:
 
 
If you would like to share a bit more info on who told you your daughter should have the surgery and who has advised against it and why we may be able to help out better.
 
I cannot imagine the fear you are feeling at the thought of your daughter having heart surgery.
 
Stick with us and I will be praying for you and your daughter. 
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 3/19/2014 11:42 AM (GMT -6)   
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
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 3/20/2014 6:46 AM (GMT -6)   
Just a question, has anyone went ahead with this surgery even though you weren't diagnosed with anything other than recurrent pericarditis? I have read other posts that when they had the surgery, the condition was worse than what was showing up in tests. My daughter has been sick for 5 years almost, the medications she takes are causing other problems and we are highly considering surgery for her. I see lots of posts where people have been diagnosed with constrictive issues or other problems that my daughter has not been diagnosed with. She has problems with fluid building up around her heart, it's not a lot of fluid, but more than should be there, and during inflammation the fluid is more than when she's not having a flare. It seems she's always got a little more fluid than "normal" even when she feels okay. She gets tired a lot, but then has days where she feels "hyper" for about an hour then is tired again. I don't know, so many doctors saying yes and so many saying no. So frustrating, and I get so tired of hearing "it's in her head" or that we are just "living in the disease" and don't need to be focused so much on it and instead concentrate on life more than illness. What they don't seem to understand is that is not the case, when she feels good, we live like normal, we nor she can control how she feels, she wants to feel good, it's not a choice and it's not in her head.
Thanks all. have a great day!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/20/2014 10:57 AM (GMT -6)   
 
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.
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 3/20/2014 11:19 AM (GMT -6)   
Kitt,
I am so very sorry, I hope he gets well soon! My prayers are with you both!! Please do not worry about getting back to me until you have the time. I think I have my decision, but I still want to ask questions to see what everyone else has done, gone through, etc.
Thank you so very much, take care and many blessings.

KattOK

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 3/20/2014 6:30 PM (GMT -6)   
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.

KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 3/21/2014 5:58 AM (GMT -6)   
Hi JungRulz,

Thank you for all of that detailed information. I have saved those articles. She has had two cardiac MRI's in the past 5 years and unfortunately hold the record at the Children's hospital for the most echocardiograms. She has a very rare disease that does not affect very many adults and even less, children under 18. I have sent electronic files and labs to Cleveland Heart Clinic for a 2nd opinion so we will see what they say. I have been told by 2 cardiologist and one rheumatologist that medical management can continue with medications, but the side effects are just building and building from medications. She has been tested 3 or more times for everything possible as far as tests go, all negative.
The information you have provided is very informative and I appreciate it very much. I'm glad to hear your son is doing so well, it just comes down to making the right decision for your child as much as anything else.
Best wishes, thank you again!
KattOK

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/24/2014 12:27 PM (GMT -6)   
Katt,
 
I am back and my hubby is home and doing well.  He will see a cardiologist next week.
 
I found this thread:
 
 
I also found this link which I hope we have not already posted here for you and it does speak to recovery time.
 
 
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
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 3/24/2014 2:40 PM (GMT -6)   
Hi Kitt,
So glad to hear your husband is out of the hospital. I hope he can get more help next week in whatever he needs.
Thank you so much for the information. Maybe I need to add my daughter to this chat, as well as the anxiety and panic forum.
I am worried about her that's for sure, but you are so right, we do have some great places and surgeons. I know most of the studies don't even include the past 5-10 years for pericarditis and pericardiectomy surgery.
Thank you so much for the support and for being there for us, and especially for the prayers!
I hope you have a wonderful evening, many blessings!
KattOK

KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 6/11/2014 1:14 PM (GMT -6)   
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.
KattOK

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/14/2014 3:00 PM (GMT -6)   
 
I am sure you have done your homework well, looked at the options and together with your daughter chose the procedure which will give her back as normal of lifestyle  as possible. I am here to support you and will keep you in my prayers.
 
I know you are going to find this a stressful time so do look for those cubby holes where you can curl up and catch some down time.
 
When my sister was in the hospital for 10 months with cancer, I would sneak into the chapel at night with my blanket and curl up  on the floor.  My niece would be in the only recliner in my sisters hospital room.
 
I read this comment on Cleveland Clinic's site, "In patients who are otherwise healthy, pericardiectomy can be very safe. In the literature, the risk has been described as 5 - 10%. In our experience it is closer to 2% in patients who are otherwise healthy."
 
Keep talking with us and know we care.
 
Gentle Hugs,
Kitt
 
 <Edit for spelling>
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.


"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

Post Edited (stkitt) : 6/16/2014 7:13:58 AM (GMT-6)


KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 6/16/2014 6:02 AM (GMT -6)   
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.
 
KattOK

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/16/2014 7:18 AM (GMT -6)   
KattOK,
 
Go and do what you need to do remembering to never give up hope and believe your daughter will do well. :-)
 
Just because you will be away from the forum does not mean we will not be thinking of you and praying for the best outcome for your daughter.
 
"Happiness is a butterfly, which when pursued is always just beyond
your grasp, but which, if you sit down quietly, may alight upon you."
 
Watch for the butterflies in life.
 
Many gentle hugs to you,
 
Kitt 
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.


"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 6/16/2014 7:26 AM (GMT -6)   
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

KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 7/21/2014 12:01 PM (GMT -6)   
Hello!
This Wednesday will be 4 weeks since my daughter's surgery.  Her surgeon is incredible and amazing!  She is doing fantastic!  She went into surgery with a flare up because of being off her meds to prepare for surgery.  Another reason why we decided for her to have the surgery, five years on major doses of medications without much help was a big decision factor. 
She had her surgery on a Wednesday and was sent home on Friday late afternoon.  Her flare pain is gone and she is doing incredible. 
 
Just had to do a quick update.  Thank you all so much, finding the posts from others and hearing positive outcomes really helped us to go ahead with the surgery as well as the fact that medications were not working. 
 
Many blessings! 
 
KattOK

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 7/21/2014 12:37 PM (GMT -6)   
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.....♫ '
Blessings,
Kitt

~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.


"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 7/21/2014 12:45 PM (GMT -6)   
Kitt,
I promise all of those prayers were felt, beyond a shadow of a doubt. THANK YOU!!! Thank you all so much! I was so very afraid!
We are looking forward to being able to live again, especially for her.
I will keep updating, because I know everyone else's story sure helped calm my fears of the "unknown". Thank you again so very much! I hope you and yours are doing well!
:)
KattOK

KattOK
Regular Member


Date Joined Mar 2014
Total Posts : 23
   Posted 7/30/2014 8:03 AM (GMT -6)   
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!
 
KattOK
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