Friday, May 18, 2007
Off to hospital we go
I'm not feeling so stressed this morning, though I have been awake since 3.30am.
After a 12 hour day John got home last night and having spoken to his specialist and started treatment he is feeling happier.
There are a couple of types of rejection, acute and chronic. The 'good' one to get is acute, and that is what John had. Probably because it is such a fine line getting the balance of drugs right. There needs to be enough drug to prevent rejection without too many side effects.
John has had the 3 main anti-rejection drugs. Cyclosporin was the first he was put on and it didn't work for him. Tacrolimus was the next and the main side effect for him was tremors - looked like he had Parkinson's. About a month ago he was switched to Sirolimus and initially got severe mouth and tongue ulcers, so the dose was reduced. Unfortunately it seems reducing the dose resulted in this episode of rejection.
So given the choice between increasing the dose of Sirolimus and suffering painful mouth ulcers - we are talking entire mouth and tongue - or going back to Tacrolimus and tremors, John chose the tremors. Today he'll start back on Tacrolimus.
We are heading off to the hospital after we drop the boys at school to see his specialist and then John can have his 2nd IV treatment. Saturday we'll have another 'date' to the hospital.
One great piece of news, the researchers have isolated the gene for polycystic kidney disease and a drug developed to halt the growth of the cysts and therefore stop the destruction of the kidneys will be available in about 5 years. If Shane was a few years older he could take part in the drug trial, but he isn't 18 yet. But all going well the drug will be available to him in the near future and he won't need a transplant later in life. Our other 3 boys will have ultrasounds again late this year to check their kidneys. John had no sign of the disease until he was 29, but Shane had multiple cysts at 8 years of age. No telling if or when it could show up in the others, so they have to have regular checks.
So a bit of relief today. but the ride continues.
After a 12 hour day John got home last night and having spoken to his specialist and started treatment he is feeling happier.
There are a couple of types of rejection, acute and chronic. The 'good' one to get is acute, and that is what John had. Probably because it is such a fine line getting the balance of drugs right. There needs to be enough drug to prevent rejection without too many side effects.
John has had the 3 main anti-rejection drugs. Cyclosporin was the first he was put on and it didn't work for him. Tacrolimus was the next and the main side effect for him was tremors - looked like he had Parkinson's. About a month ago he was switched to Sirolimus and initially got severe mouth and tongue ulcers, so the dose was reduced. Unfortunately it seems reducing the dose resulted in this episode of rejection.
So given the choice between increasing the dose of Sirolimus and suffering painful mouth ulcers - we are talking entire mouth and tongue - or going back to Tacrolimus and tremors, John chose the tremors. Today he'll start back on Tacrolimus.
We are heading off to the hospital after we drop the boys at school to see his specialist and then John can have his 2nd IV treatment. Saturday we'll have another 'date' to the hospital.
One great piece of news, the researchers have isolated the gene for polycystic kidney disease and a drug developed to halt the growth of the cysts and therefore stop the destruction of the kidneys will be available in about 5 years. If Shane was a few years older he could take part in the drug trial, but he isn't 18 yet. But all going well the drug will be available to him in the near future and he won't need a transplant later in life. Our other 3 boys will have ultrasounds again late this year to check their kidneys. John had no sign of the disease until he was 29, but Shane had multiple cysts at 8 years of age. No telling if or when it could show up in the others, so they have to have regular checks.
So a bit of relief today. but the ride continues.
# posted by Sandy @ 5:17 AM 
Comments:
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Well speaking as someone who currently has just a small mouth ulcer....OUCH! I can sympathize a bit. Seriously, I guess it is "good" news...but tough that he has to have the side effects. Everything is relative though...I would choose the tremors over these sores too! But seriously, you two need to figure out a better "date"! :-)
Hi Sandy,
Sorry to hear of the rejection, hopefully the doctors can find the perfect dosage and life can go on relatively normally, whatever that is! Remember, "Smile and point your toes!" :-)
Kim
Sorry to hear of the rejection, hopefully the doctors can find the perfect dosage and life can go on relatively normally, whatever that is! Remember, "Smile and point your toes!" :-)
Kim
You have all come so far with this and done so well.
You are a very special woman Sandy.
As kim said Smile and point those toes OR when your REALLY frustrated kick the C#@p out of something with them!
xx Nise xx
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You are a very special woman Sandy.
As kim said Smile and point those toes OR when your REALLY frustrated kick the C#@p out of something with them!
xx Nise xx
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