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Susan X
Member
Username: Susanx

Post Number: 2
Registered: 09-2013
Posted on Monday, September 16, 2013 - 05:02 pm:   Edit Post Delete Post Print Post

Background info (forgive me if it gets a little long)... My son (now 14 months old) was diagnosed with dilated cardiomyopathy when he was 4 months old and spent almost 2 months in the hospital before the doctors decided that he wasn't going to recover and needed a heart transplant. He was put on the urgent transplant list on January 1 and put on an LVAD (Berlin Heart) on January 2. After suffering 3 strokes in one week, he was switched over to a Levetronix circuit and put in the Pediatric ICU where he remained for the next 5 weeks while waiting for his new heart. In that time, he required many circuit changes due to blood clots forming and (in my mind) narrowly missed having a stroke that would have killed him. After transplant he was placed on an ECMO machine to give the new heart time to recover, and to top it all off, ended up needing another surgery to "fix" a paralyzed left diaphragm - a by-product of the ice used during transplant. It took another month after that for him to recover enough for us to take him home. And through it all, my husband and I never left his side except when we needed to eat or sleep. So needless to say, we have been through a lot and our son (our first born) is now more precious to us than ever. The problem is, because we have been through so much and because we still don't know what caused the cardiomyopathy other than the vague "a virus" answer the doctors give us (my mom guilt has me convinced that it was something I did or didn't do, or somewhere I took him) and because I know how lucky we are that he survived all this, I found myself too terrified to take him anywhere up until maybe two weeks ago. And of course, once I decided it was ok to take him to the park or to a store first thing in the morning when no one is there, he ended up getting sick (fever of 102) and we had to take him to the hospital... so now I'm afraid again. I also find myself too focused on the fact that he has had a heart transplant (wondering what this means for him in terms of quality of life and life span) to focus on enjoying him at times.

So... I guess I'm hoping there are other parents out there that might have advice on how to cope with this all or advice on how careful we really need to be. The doctors have said that most kids go back to school or daycare after 3 months so I have to imagine it is ok to take my son grocery shopping, but I just can't bring myself to do it comfortably.

I'm also wondering about airplane travel / travel abroad and getting through cold and flu season. We are currently living in England and would really love to fly back to the US to visit our families for Christmas, but I just don't know how safe that would be... especially before the 1 year mark. I mean, if I feel that grocery shopping with him is a risk, how am I supposed to get myself to take him on an airplane...during cold and flu season...during what I imagine is the heaviest travel season of the year.

Honestly, any advice would be appreciated.
DAP1122
Forum Leader
Username: Dap1122

Post Number: 3473
Registered: 05-2008


Posted on Tuesday, September 17, 2013 - 07:45 am:   Edit Post Delete Post Print Post

Susan,

Hello and welcome to TransplantBuddies!!

You have been through the ultimate ordeal in my opinion. I am an adult heart recipient, and I know there is a big difference between adult/pediatric. My suggestion is to listen to your son's transplant team and follow their advice.

In my opinion, leave your guilt at the door ..... things happen in life, good and not so good ..... blaming yourself does not help your son or your family.

There is a lady who belongs here and/or TransplantFriends.com (our sister web site)by the name of Susan May, who has a son that is about 21 years out from a pediatric transplant - her web site is here and she might be able to answer some of your questions ~ http://www.susancmay.com/

I wish you the best!! God Bless!!

~ Don
New blog/web page -
My2ndHeartBeat
Dap's Email

Heart Tx - 5/11/2007
DAP
Ohio, USA

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Susan X
Member
Username: Susanx

Post Number: 3
Registered: 09-2013
Posted on Wednesday, September 18, 2013 - 04:03 pm:   Edit Post Delete Post Print Post

Don,

Thanks for pointing me to Susan May! I think her book (which I have just purchased on Kindle) will be a big help as will talking to her about her experiences.

We did ask my son's transplant team about holiday travel pre the one year mark and were told to "go for it", but I am still nervous about it. They even said that the risks of him getting sick from the plane ride are the same around Christmastime as they are at any other time of the year...which I am not sure I believe. Anyone have any experience with this?

Also, I guess one of the things that I still don't understand is how bad it is if he does get sick. Is this just bad because it might take him a while to recover and might require a stay in the hospital for observation? Or is this bad because it could weaken his new heart or shorten its lifespan or cause a rejection episode? Clearly being sick for a long time is nothing that I would strive for, but if there is no effect on his long term outcome, then I would be more willing to treat him like a normal 14 month old in terms of outings and such. I do plan on asking the doctors about all of his at his next clinic appointment, but figured I would ask in case anyone out there has some insight.

Thanks!
Susan
DAP1122
Forum Leader
Username: Dap1122

Post Number: 3474
Registered: 05-2008


Posted on Thursday, September 19, 2013 - 07:09 am:   Edit Post Delete Post Print Post

Susan,

My additional recommendation for traveling would be for him to a wear a mask, if at all possible. Knowing little ones as I do, I know this may not be entirely possible.

Even when adults recipients get sick, we all suffer different symptoms and severities. I do know that if I get a cold today, it's usually no worse than before transplant, but it will take me a bit longer to heal.

I did a quick search on search our sister site, www.TransplantFriends.com and saw these 2 ladies, who might help you ~

http://www.transplantfriends.com/profile/laurengrace

http://www.transplantfriends.com/profile/MelissaMcQueen

I wish you and your special little guy the best!!

God Bless!!
New blog/web page -
My2ndHeartBeat
Dap's Email

Heart Tx - 5/11/2007
DAP
Ohio, USA

Join our Transplant Buddies Calendar

Don's TransplantBuddies Blog

Google+ ..... gplus.to/NewHeart
QT13
Member
Username: Qt13

Post Number: 2
Registered: 12-2013
Posted on Tuesday, December 03, 2013 - 12:22 pm:   Edit Post Delete Post Print Post

Hi Susan,
As I read your story, I started to cry as mine is very similar. My daughter was 3 months old when she was diagnosed with dialated cardiomyopathy. I too received the same "virus" explanation. Like you, I struggled with that and constantly asked myself, "What did I do wrong" and "What could I have done to prevent this?". I quickly learned that there is no answers when it comes to dialated cardiomyopathy and the research is just not there so you must get over that and focus on the long road ahead.
My daughter was placed on the Berlin Heart and she too suffered a stroke. She has her transplant at 7 months old and will turn 9 years old next month.
How you are feeling is completely normal. You can't keep your child in a bubble and you have to try and find some kind of normalcy for your life. But remember that your new normal is compeltely different from most. Our kids our TOUGH. I mean tough! Your son is young and all of this will be what is normal for him. Take baby steps but keep taking them. Its very scary to take your immunesuppressed child out but you have to expose him slowly. Try the supermarket and make sure you keep hand sanitizer and a mask. If it makes you feel better, get those seat things that you can put him in to protect him from the dirty cart. I used to carry around sanitizer wipes and wipe down the cart and the handle.
I promise you that life will get easier. And not because the challenges disappear but because you find a way to cope with your new life.
Good luck with everything and please feel free to reach out if you have any questions. I will leave you with the following poem that I read when my daughter had her transplant. It definitely helped me cope:

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley
Hostess Risé
Board Administrator
Username: Rise

Post Number: 17954
Registered: 05-2003


Posted on Tuesday, December 03, 2013 - 12:25 pm:   Edit Post Delete Post Print Post

Welcome QT13 to Transplant Buddies

Thank you so much for sharing your story about your precious little girl.

Your beautiful story "Welcome to Holland"
Is quite Amazing. What a wonderful Analogy.

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Rebecca )
Member
Username: Rebecca_jayne

Post Number: 1
Registered: 12-2013
Posted on Thursday, December 05, 2013 - 05:55 pm:   Edit Post Delete Post Print Post

Hi Susan!

My name is Rebecca and I received a heart transplant almost two years ago now, aged fifteen. I had had a heart condition since I was born and I couldn't keep up with other children, do P.E or any other physical exercise and I would turn really blue when it got cold.

When I got my transplant, my parents said they were shocked at how my colour had changed so fast! I spent four days in Cardiac Intensive Care Unit and then went down to the ward. I had visits from the physio, then about a week later mum could take me out to a coffee shop or for a walk and then after a total of eleven days in hospital I went home. Already I felt better, I could walk fast and run (!) without getting breathless (obviously it takes time to build up stamina, especially for me having never been able to do much in terms of physical activity), I actually found myself getting a bit too hot instead of cold too! I have been to various adventure camps and trips with my hospital (being able to climb the big climbing wall was a great achievement!) and I managed to at least have a go at everything. I had a whole term off of school and we were told a year before going abroad (we still haven't been yet but there is nothing to stop us).

I hope this helps a little bit with what you are asking.

Rebecca x
papillonbleu
Forum Leader
Username: Papillonbleu

Post Number: 2298
Registered: 10-2007


Posted on Friday, December 06, 2013 - 08:57 am:   Edit Post Delete Post Print Post

Dear Rebecca,
Welcome! Thank you for sharing your story and congratulations on your heart transplant! I am a multivisceral transplant recipient who is always blessed to hear the good news of others. I hope you may continue to do well. Many hugs and best of wishes.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital

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