RE: Husdband's Insurance Denied Transplant

[Guest guest]

I am in full support of the Meld system because it is based on how

sick you are not on a doctors oppinion. Overall it seems to be the

best way to get transplants to those who need it the most. However, I

am fairly sure everyone will agree that PSC is only a liver issue by

default. It is not the liver that is the problem, but it is a

transplant is, for the most part, the solution. It is a catch 22 when

it comes to the timing with a transplant with someone who has psc. Yes

at a melt number of 7 it may be too soon. However if you are being

hospitalized and having an ERCP every other month, and other symptoms

that make living really difficult maybe it is time to consider a

transplant. From the sounds of the OP husbands symptom living his life

is extreamly difficult.

I am sorry if it sounded like I was attacking. I guess I am fairly

sensitive about the whole thing.

Thank you for your honesty and willingness to discuss this.

Litsa

[Guest guest]

-----Original

Message----- On Behalf Of ccctenor

Lonnie was transplanted at a MELD of 5 when he was listed. When

they ran tests the morning of his transplant they said it was closer to 10

That’s amazing….This is the first I’ve

heard of and I stand corrected. Ken is a MELD 12 and still not

listed. If he had gone to the same

hospital, he might have been transplanted back in 99. I’m happy he wasn’t though, it would have been too early for Ken. Did they give you a reason why his MELD

wasn’t higher?

Thanks for telling us Kathy,

Barb in Texas

[Guest guest]

-----Original

Message----- On Behalf Of ccctenor

Lonnie was transplanted at a MELD of 5 when he was listed. When

they ran tests the morning of his transplant they said it was closer to 10

That’s amazing….This is the first I’ve

heard of and I stand corrected. Ken is a MELD 12 and still not

listed. If he had gone to the same

hospital, he might have been transplanted back in 99. I’m happy he wasn’t though, it would have been too early for Ken. Did they give you a reason why his MELD

wasn’t higher?

Thanks for telling us Kathy,

Barb in Texas

[Guest guest]

-----Original

Message----- On Behalf Of ccctenor

Lonnie was transplanted at a MELD of 5 when he was listed. When

they ran tests the morning of his transplant they said it was closer to 10

That’s amazing….This is the first I’ve

heard of and I stand corrected. Ken is a MELD 12 and still not

listed. If he had gone to the same

hospital, he might have been transplanted back in 99. I’m happy he wasn’t though, it would have been too early for Ken. Did they give you a reason why his MELD

wasn’t higher?

Thanks for telling us Kathy,

Barb in Texas

[Guest guest]

I do plan on calling the social worker for some suggestions before I call the insurance company. The biggest concern is the potential risk of cancer. If he happens to develop it, then he will not be able to have a transplant. His brother is going through testing right now for live donor and I just found out I have the same blood type, but not sure about my size compared to him. My husband's quality of life is not great. While he is young (only 40), he tires just from going to the grocery store. Since he is a Mason, there is no way he can go back to work. I would think that since there is no cure for PSC and the only option is a transplant and we are pursuing a live donor that the insurance company would take that into consideration.

It is a catch 22 and very unfortunate. I keep fighting for him, yet we try and not always make it our main focus everyday.

Thanks again for all the comments.

-------------- Original message --------------

..

[Guest guest]

I do plan on calling the social worker for some suggestions before I call the insurance company. The biggest concern is the potential risk of cancer. If he happens to develop it, then he will not be able to have a transplant. His brother is going through testing right now for live donor and I just found out I have the same blood type, but not sure about my size compared to him. My husband's quality of life is not great. While he is young (only 40), he tires just from going to the grocery store. Since he is a Mason, there is no way he can go back to work. I would think that since there is no cure for PSC and the only option is a transplant and we are pursuing a live donor that the insurance company would take that into consideration.

It is a catch 22 and very unfortunate. I keep fighting for him, yet we try and not always make it our main focus everyday.

Thanks again for all the comments.

-------------- Original message --------------

..

[Guest guest]

I do plan on calling the social worker for some suggestions before I call the insurance company. The biggest concern is the potential risk of cancer. If he happens to develop it, then he will not be able to have a transplant. His brother is going through testing right now for live donor and I just found out I have the same blood type, but not sure about my size compared to him. My husband's quality of life is not great. While he is young (only 40), he tires just from going to the grocery store. Since he is a Mason, there is no way he can go back to work. I would think that since there is no cure for PSC and the only option is a transplant and we are pursuing a live donor that the insurance company would take that into consideration.

It is a catch 22 and very unfortunate. I keep fighting for him, yet we try and not always make it our main focus everyday.

Thanks again for all the comments.

-------------- Original message --------------

..

[Guest guest]

It was suggested by my transplant financial coordinator that I contact

my states insurance commissioner. If your state has one you might try

that. I have Blue Cross CA and had my transplant in Florida. The TX

center wasn't sure it would be covered so I had to come up with $100k up

front. As it turned out they covered 100% so I got the deposit back or

should I say my Dad did. I hope this helps.

Re: Re: Husdband's Insurance Denied Transplant

I do plan on calling the social worker for some suggestions before I

call the insurance company. The biggest concern is the potential risk

of cancer. If he happens to develop it, then he will not be able to

have a transplant. His brother is going through testing right now for

live donor and I just found out I have the same blood type, but not sure

about my size compared to him. My husband's quality of life is not

great. While he is young (only 40), he tires just from going to the

grocery store. Since he is a Mason, there is no way he can go back to

work. I would think that since there is no cure for PSC and the only

option is a transplant and we are pursuing a live donor that the

insurance company would take that into consideration.

It is a catch 22 and very unfortunate. I keep fighting for him, yet we

try and not always make it our main focus everyday.

Thanks again for all the comments.

-------------- Original message --------------

.

<http://geo.yahoo.com/serv?s=97359714 & grpId=1243731 & grpspId=1600094696 & m

sgId=86157 & stime=1151349399>

[Guest guest]

It was suggested by my transplant financial coordinator that I contact

my states insurance commissioner. If your state has one you might try

that. I have Blue Cross CA and had my transplant in Florida. The TX

center wasn't sure it would be covered so I had to come up with $100k up

front. As it turned out they covered 100% so I got the deposit back or

should I say my Dad did. I hope this helps.

Re: Re: Husdband's Insurance Denied Transplant

I do plan on calling the social worker for some suggestions before I

call the insurance company. The biggest concern is the potential risk

of cancer. If he happens to develop it, then he will not be able to

have a transplant. His brother is going through testing right now for

live donor and I just found out I have the same blood type, but not sure

about my size compared to him. My husband's quality of life is not

great. While he is young (only 40), he tires just from going to the

grocery store. Since he is a Mason, there is no way he can go back to

work. I would think that since there is no cure for PSC and the only

option is a transplant and we are pursuing a live donor that the

insurance company would take that into consideration.

It is a catch 22 and very unfortunate. I keep fighting for him, yet we

try and not always make it our main focus everyday.

Thanks again for all the comments.

-------------- Original message --------------

.

<http://geo.yahoo.com/serv?s=97359714 & grpId=1243731 & grpspId=1600094696 & m

sgId=86157 & stime=1151349399>

[Guest guest]

No real reason, that I can remember. He had a gall bladder attack

in late January and the discussions began about listing and

transplant while he was recovering from the attack.

We started testing/qualifying in late February and officially listed

in late May. Lonnie was in pretty good health following the gall

bladder attack, in fact, he worked the day he got the call (it came

at 10:30 at night). The basic discussion, as I recall, was that he

might as well get qualified and listed and get the liver

transplanted.

Sorry, I don't remember more details, it's been two years. I'll

read through the CaringBridge site and see if I can get more

information.

Kathy

Did they give you a reason why his MELD wasn't higher?

>

> Thanks for telling us Kathy,

> Barb in Texas

>

[Guest guest]

No real reason, that I can remember. He had a gall bladder attack

in late January and the discussions began about listing and

transplant while he was recovering from the attack.

We started testing/qualifying in late February and officially listed

in late May. Lonnie was in pretty good health following the gall

bladder attack, in fact, he worked the day he got the call (it came

at 10:30 at night). The basic discussion, as I recall, was that he

might as well get qualified and listed and get the liver

transplanted.

Sorry, I don't remember more details, it's been two years. I'll

read through the CaringBridge site and see if I can get more

information.

Kathy

Did they give you a reason why his MELD wasn't higher?

>

> Thanks for telling us Kathy,

> Barb in Texas

>

[Guest guest]

No real reason, that I can remember. He had a gall bladder attack

in late January and the discussions began about listing and

transplant while he was recovering from the attack.

We started testing/qualifying in late February and officially listed

in late May. Lonnie was in pretty good health following the gall

bladder attack, in fact, he worked the day he got the call (it came

at 10:30 at night). The basic discussion, as I recall, was that he

might as well get qualified and listed and get the liver

transplanted.

Sorry, I don't remember more details, it's been two years. I'll

read through the CaringBridge site and see if I can get more

information.

Kathy

Did they give you a reason why his MELD wasn't higher?

>

> Thanks for telling us Kathy,

> Barb in Texas

>

[Guest guest]

I understand what you're saying, as has to have ERCP's every 3 weeks, on average, and is hospitalized for a minimum of 7 days with each one, normally 10 - 14 days. However, because this keeps his score low enough, he'd be on the list for years before he'd get a cadaver liver. Very frustrating. And he's already on immunosuppression, because he had a double lung tx in February. Amidawndeco wrote: I am in full support of the Meld system because it is based on how

sick you are not on a doctors oppinion. Overall it seems to be the best way to get transplants to those who need it the most. However, I am fairly sure everyone will agree that PSC is only a liver issue by default. It is not the liver that is the problem, but it is a transplant is, for the most part, the solution. It is a catch 22 when it comes to the timing with a transplant with someone who has psc. Yes at a melt number of 7 it may be too soon. However if you are being hospitalized and having an ERCP every other month, and other symptoms that make living really difficult maybe it is time to consider a transplant. From the sounds of the OP husbands symptom living his life is extreamly difficult. I am sorry if it sounded like I was attacking. I guess I am fairly sensitive about the whole thing. Thank you for your honesty and willingness to discuss this.Litsa

Ami mom to - 8 yrs old - Double Lung Tx 2/26/2006, PSCholangitis - pre-liver Tx (Aug or Sept, 2006), Central DI, Steroid Induced Diabetes, HypoT, GERD, High Blood Pressure, ADD, Anemia, Malabsorption, Slow Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs old - Migraines, otherwise good & healthy (thankfully) stepmom to - 13 yrs old - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Generosity begins with our recognition of our debt to others. -Master Hsing Yun, Fulfillment of desire is an illusion; desire leads to more desire, not satisfaction.-Kathleen Mc, "How to Meditate"

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