Back in the hospital :'(

hmw

New member
Re. the autism and transplant... it may not even come down to being their decision. Many centers will disqualify someone from eligibility for transplant if they have other co-existing conditions like this. As wrong as it sounds, there was a recent case where CHOP denied a young girl from being placed on the list for a kidney transplant because she had developmental disabilities in addition to her kidney disease. Due to the enormous PR backlash, they decided to allow a family member donate a kidney (which was what the family wanted in the first place!), but initially they were not going to even allow that.
 

hmw

New member
Re. the autism and transplant... it may not even come down to being their decision. Many centers will disqualify someone from eligibility for transplant if they have other co-existing conditions like this. As wrong as it sounds, there was a recent case where CHOP denied a young girl from being placed on the list for a kidney transplant because she had developmental disabilities in addition to her kidney disease. Due to the enormous PR backlash, they decided to allow a family member donate a kidney (which was what the family wanted in the first place!), but initially they were not going to even allow that.
 

Justinsmom

New member
Hi,
We are new to all of this. We just received our diagnosis about two weeks ago after pneumonia and a second opinion at another large CF clinic. I have questions about liver issues. You mentioned "platelet issues." Could you please explain? My son has off and on lowish platelets for about a year or so (mostly right under 150 but as low as 114.) He is followed monthly for an iron deficiency and these periodic lowish platelets show up.
I am so sorry to hear that both of your children are suffering from liver issues. This all seams so overwhelming.
My thoughts and prayers are with you all.
Josette
 

Justinsmom

New member
Hi,
We are new to all of this. We just received our diagnosis about two weeks ago after pneumonia and a second opinion at another large CF clinic. I have questions about liver issues. You mentioned "platelet issues." Could you please explain? My son has off and on lowish platelets for about a year or so (mostly right under 150 but as low as 114.) He is followed monthly for an iron deficiency and these periodic lowish platelets show up.
I am so sorry to hear that both of your children are suffering from liver issues. This all seams so overwhelming.
My thoughts and prayers are with you all.
Josette
 

MiahsMommy

New member
Update:

After a week and a couple days miah is finally home. Looks like it was something viral. All labs came back normal and her liver enzymes are slowly climbing down. The doctors said if it was cf related her liver enzymes wouldn't be improving. Although I'm thankful it wasn't anything serious, I still have a gut feeling its the cf causing this. Thanks for everyone's responses and stories. God bless
 

MiahsMommy

New member
Update:

After a week and a couple days miah is finally home. Looks like it was something viral. All labs came back normal and her liver enzymes are slowly climbing down. The doctors said if it was cf related her liver enzymes wouldn't be improving. Although I'm thankful it wasn't anything serious, I still have a gut feeling its the cf causing this. Thanks for everyone's responses and stories. God bless
 
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