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Wanted to say Thank you

kitcat629
0 Recommendations

Just wanted to say thank you for your responses. My son got his new liver last week on wed. Everything was looking good and then he passed away on thursday due to a heart attack from high potassium.

Explore topics in this discussion:

Surgery Wilson disease Cirrhosis Heart attack Hepatitis Liver transplant

8 replies

Summicron2

Deep sadness. My thoughts are with you.

But : why a transplant ?

kitcat629

Because his was failing due to very bad cerrosis.

mom2six

KitCat:

I haven't read your situation but when I caught the "my son got his new liver" I was all smiles since my daughter also has a new liver, until I read the next part, of his passing. I am so sorry! My heart goes out to you!!!! How old was your son? Did he have Wilson's disease?

lindy

I am very sad to hear that your son has passed, please know that my thoughts and prayers are with you and your family.
Melinda xx

mgraper1

I am always very sad to hear of a death from WD. My deepest sympathies. How old was your son? Please let me know if there is anything we can do to help.

Mary G.
WDA

kitcat629

I guess I better explain the situation.
My son was diagnosed with Wilson's disease and within a week he had a new liver. the day of his surgery everything was going well. He was stable they were slowly lowering his oxygen intake and the sedative. He squeezed my fingers and opened his eyes and looked at me. I was sleeping at the ronald mcdonald house downsatirs in the hospital. At 4:00 am they called me and told me they were doing chest compressions, and I need to get to his room.
They said they hung a bag of blood at 1:00 am and somewhere between then and 3:00 am something went wrong. By 3:45 am my son was in full cardiac arrest, and his potassium level was 8. he didn't die from Wilson's and he didn't die because of the liver. He died because of his potassium. We are going to have it checked out because this is something we feel should have been caught and all it would have taken is one shot to lower his potassium level.
Bobby was 14 years old.

mom2six

My daughter was the same age as Bobby when she got her liver. Once gain, I am so sorry for your loss. And, I agree, that seems like something that they should have been able to catch in time.

Summicron2

Problem of monitoring.

Our son too did a cardiac arrest because of a lack of potassium ( luckily a few seconds) when doctors had the strange idea to operate him in order to fix a catheter in the stomach instead to put simply a GEP.

I was furious and i remember i did a scandal because i was reluctant to do that.

Now he has a GEP...and now i listen to doctors with only half of ear...

Liver transplant : strangely too, french doctors wanted to do that, though our son had (and has) no cirrhosis...We refuse because i read in the literature (i'm not a doctor but a scientific) that a LT allows to cure WD with a probability of 50 % only X prob. of 85 % (failure of the transplant : 15%) = 42.5 % success.

Even with a cirrhosis we would have refused because a huge amount of trientine can improve the situation.

LT yes, but as a last resort (fulminent hepatitis)

In my humble opinion.

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