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transplant

pedsrn9999
  • By pedsrn9999
  • Posted October 11, 2008 at 4:41 am · 16 replies
  • Shared with the public
0 Recommendations

Well, after two months of trying everything to save Dimitri's liver it appears we have lost the race. He is decompensating quickly and has been placed on the transplant list. Hopefully it will not be a long wait. He is ready and willing to do this because he is so ill. I can't imagine being 21 years old and having to make this decision. At first I was all for trying everything to avoid the transplant but seeing how quickly he is deteriorating is very scary so now I'm very supportive of his decision. Please pray for him.
Mom Shirley

Explore topics in this journal entry and replies:

Surgery Wilson disease Anemia Bone marrow transplant Dialysis Pain Aplastic anemia Mental health Liver transplant

16 replies

Summicron2

Hello from France,

I remember having read the case of a young wilsonian girl from the USA. Before the transplant she was in a bad condition. 6 months after she played basket ball !

Take heart !

mom2six

My daughter was only 14 when she had a liver transplant after she was near death. Her liver was the greeniest, bumpiest, nastiest thing I ever saw! (yes, they did allow me to see it after the transplant-why I chose to I don't know).
She is now a bright 21 year old who is on the Dean's List in medical school to become a transplant coordinator! She also works full time as a dialysis tech. She had to be on dialysis after her transplant because her kidneys had failed too. She was an extremely sick girl but now she can have first hand knowledge of what her patients are going through.

I wish the best for him--you and him will be amazed how wonderful he will feel again!
All my thoughts and prayers for a speedy new liver and a speedy recovery!
Michelle

McVeggie

Don't know what to say Shirley, except keeping you and Dimitri in my prayer. Pray that a donor will appear soon so Dimitri can be well and again.

Wish you all the best from the bottom of my heart.

pedsrn9999

Hi again...thank you for all the good wishes and prayers. Dimitri is in surgery right now. I am hoping this will be the start of a healthy new life for him.

Shirley

lindy

hi Shirley,
i have you and Dimitri in my thoughts.
have 2 brothers that had liver transplants so i sort of know what you are going through, even though it is alot harder from a mothers view.hope everything goes well.
love to you and your son.
Melinda xx

mom2six

I am praying for Dimitri, for the doctors hands who are performing this life saving miracle, for you! I know it's hard. Keep strong.
Keep us posted!!
Michelle

pedsrn9999

Thank you all again for all the good wishes. The transplant went well. Dimitri is in ICU but progressing quickly. They expect him to go home next week. Thank God for organ donors. Giving someone that second chance is priceless.

mom2six

Ya!! That is such good news about Dimitri and the success of the transplant!! I'm so happy to hear all went well and that he will be home soon!
You are so right when you say "giving someone that second chance is pricelss!" May more people in the world be able to have that chance.

shellymoon

On Oct 21, 2008, at 2:17 PM
Shirley & Dimitri'
Shelly so sorry for not being in touch I'm so sorry that you had too go throught all of that but like the rest of Our Friends I too wish you a speedy recovery and hopefully someday we all can meet in person but for now just keep us posted and know if you need any of us we all are here for you.......

Love your,
Friend Shelly....................

McVeggie

Yaya! for Dimitri!!
Shirley you have to stay strong and healthy too.

big bear hugs for Shirley and Dimitri~

shellymoon

On Nov 8, 2008, at 12:37AM
Dimitri & Shirley'
Shelly again I just read were Our Young Man had his transplant huray........ I so hope that he is doing better
now and will continue too do so please keep me posted as I said earlier I Miss Hearing From All Of My
Friends.... Maybe if he's well enough you two after THE Holidays can come to Baton Rouge, La., as My Mom and I are trying to get a group together to meet in person but that is as far as she can bring me for health as well as work, I posted a notice on the board
but only have gotten three replies so far and many sorries as so many can't come either for money reasons like us or distance or both so so far things aren't going as planned and I just did what one of the others asked about which is to put an Adult Group together as there are many for kids but not one from grown ups, so My Mom and I just need to know how many and if anyone has food restrictions lkie we do or what before we can find the place as we just have the location so far!!!!
Again I'm so Happy To Here About Dimitri!!!!

Love your,
Friend Shelly!!!!

egrl2444

I had liver transplant after Wilson's Disease at 32 - and have never felt healthier. I am now 50 years old - there is hope for long term health and happiness. Best wishes to you and Dimitri. Please keep us posted on how he's doing.

acutedistress

When thinking about my son your son is never far from my mind, and I pray for them both. My son is getting worse (muscle spasms and twitches, odd movements) while we wait for the results of the liver biopsy and DNA test.
The hospital had to restrain him after he pulled out his IV and refused to have the tests. Each time we go to the hospital they must evaluate his ability to give consent and then they temporarily appoint me as his medical decision maker.
At home we do not discuss his condition because it agitates him and he explosively denies that anything is wrong.
My question is this: How did you obtain Medical Power of Attorney for your son? And the Advance Directive? We have an appointment with an attorney next Wednesday but I am trying to get all the information I can.
I am sure my son won't discuss an Advance Directive with me, but I know we must try. I was hoping we really caught this disease early due to his neuro/psych symptoms but after reading for hours again last night I understand it is unrealistic to think his liver is not affected.
Any guidance you can give would be appreciated.
Reading about your son's experience absolutely rips my heart out. I can't imagine his pain or yours. I have never been a person of great faith, but I still pray.
If you don't have time to respond to this request I completely understand. Our sons are so very precious, aren't they? If we didn't need to remain strong for them I don't know what would become of us.

pedsrn9999

I think your situation is a bit different from mine. When D first became so ill and it became apparent he needed a transplant the hospital brought the Advance Directives into his room. Both his dad and I told him that we thought it was a good idea for him to fill them out because our idea of what to do in the event of him not being able to consent might not be the same as what he would wish. We didn't interfere when he filled them out and let him choose what he wanted. In his case the only way I get medical power over his care is if he is incompetent. When he was admitted to the hospital this last time he was already almost comatose. Because he had designated me to make his medical decisions when he couldn't it was up to me to make choices for him. You need to get an attorney and have your son deemed incompetent in the court system and get medical power of attorney. That's what Britney Spear's dad did when she went over the edge. All I can suggest is that you tell your son that if he doesn't fill out the forms then his wishes won't be known or honored in the event he can't verbalize what he wants and that you will ultimately be making the decisions. Remind him that it will be much nicer for him to have designated what he desires ahead of time so that there are no surprises for him. Hopefully he will understand and fill out the forms. Also you might ask the hospital social worker to speak to him about the importance of getting the forms filled out. D and I came home yesterday with no guarantee that we can stay home. They felt his mental health was being affected by the long hospitalization so they sent him home with me under close monitoring. I'm just hoping to get to the day when I can be just his mom and not his nurse too. Good luck with your son. I know how important they are. In the pic you posted he such a gorgeous young man. I will pray for his health.
Shirley

acutedistress

Dear pedsrn9999,
Yes, I too believe that long hospitalization is psychologically damaging. I also believe that if my son is kept in restraints too often, for too long, that it will have extremely negative effects on him.
I will pursue the Medical Power of Attorney in the court. UC Davis has twice deemed him incompetent to make his own medical decisions and I will see if their statements, documentation, etc., will speed this process along.
You sound like a wonderful mother. By now you know that not all parents love their children in the same way, to the same degree, that some of us do. Our sons are lucky - we would walk over hot coals for them - or just about anything else. I am praying for you and your son every day - if it's true about the mustard seed my prayers may reach God's ears.
Your son is young and has a nurse for a mother, I can't imagine a better scenario for a good outcome. I am relieved that your son is not suffering the neuro/psych symptoms. I am glad he can grasp most of what is going on.
Thank you for the information you have provided.
If someone else from the hospital approaches my son with the Advance Directive I believe he would comply - if he is able at the moment they ask. He goes in and out of periods where he can't speak and doesn't seem to hear.
I am pulling for you and your son.
Mickey

pedsrn9999

Hi Mickey...
Today was not a great day. We went back to Cedars for follow up and the hematologist took us aside for a conference. On top of everything else that D has gone through it now appears he has aplastic anemia and will most likely need a bone marrow transplant. They don't know if it's a result of the treatment for WD and the transplant or if a virus "snuck in" and upset the apple cart. Anyhow....it wasn't what we needed to hear. I'll pray for your son and hope everything works out for the best. Remember that sometimes our "best" isn't what God believes is "best". I have to remind myself of that everyday.
Shirley (proud mom of 5)

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