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Primary Sclerosing Cholangitis (PSC) - Online Support Group

One last phone call

It's been a while since I've been on the site. I hope you all are living to best that you can. Keeping hopeful.

I saw my doctor yesterday. I was told that my chances of getting a Liver from the Donor List is 0%. I'm getting worst but my score is not moving up as fast as my PSC. Also because I'm O positive. He said that even if I moved to a different region it would not help. My MEND as held at 15 for 2 years now.

Anyway moving to another region is not an option for me. I'm living on Disability. I have no money to move, I have no family support.

I have no family support...with that said, I'm going to try a final time. I'm going to call each of my 3 healthy brothers and ask them straight out to help me. I'm going to beg them (yes, I'm crying right now just thinking that it as come to this, begging for my life) .

Please send some prayers my way. I need all the strength I can get.

Kim

Praying for you Kim and hoping one of your brothers comes through for you!

I'm still here. In my past emails I told you that I had 3 healthy brothers. I did not mention the fourth brother because he has Neuromyelitis Optica (Devic's syndrome) and he had cancer about 10 years ago. Two days ago he called me and said that he wanted to donate his liver if he could. Amazing!!!! I'm sure that he can't but he asked me to ask my doctor anyway. He also said that he wanted to call our brothers for me. I never expected that phone call in a million years! God is Awesome! Thank you for your prayers. I'll let you know what happens.

Kim

I'm so glad he reached out to you, Kim. I hope the others follow his compassionate example. Have a beautiful spring weekend!

My brother with Devic's Syndrome can not donate. I never thought that he could so I'm not disappointed or anything. I felt it was really just a good will jester on his part. I tried and tried to pick up the phone and call my other brothers but I couldn't. Actually HEARING them say, "No" would just about break me. Anyway, they have already said no by their actions or should I say their lack of actions. Well...maybe they will be sorry when I win the Lotto and leave all my millions to my cat. A girl can dream.

Thanks for listening.

Hi Detmsh,

Can't get help from my brothers but I have to keep believing that when one door closes a window is opened somewhere.

O Postive blood type. Yes it is the most common and can be given to anyone but O can only receive O. AB, A, B, etc can receive from other blood types.

37% of Caucasians are O, where 4% are type A. - 47% of African Amer. are O, where 2% are type B. So it follows that a large number of people who need livers are type O. There may be a lot of type O out there but as we know, not enough people are donors.

Fatigue! I wish that someone would come up with a new word that really describes it better. Like a Zombie on an over dose of sleeping pills.

The week after I got out of the hospital I was in The Social Sec Office. You are going to need a lot of paperwork including a letter from your doctor. Don't wait. You're going to need to save what money you have now because S.S. really isn't much. First they put you on SSI. At the same time they are submitting your info to S.S. Disability. Disability can take a few months to be approved. With Disability you will get Food Stamps, HEAP ( help with heating bill) and Medicaid. Medicaid only last for 2 years. After that you get Medicaid/Medicare.

When you apply for SSI they are going to want to know how much you have in the bank. You are not allowed to have over $2k. I took all my money out before I applied and put it in a cereal box.

My SS officer was great. He actually put a rush on my application and I received my first Disability check in weeks instead of months.

Let me know how things turn out.

Kim

Hi Kim,

I'm praying for you.

I hope you aren't eating much sugar because it really adds to the fatigue in my opinion. I wish I had money to send you, or a brother to help you.