Who can you count on?

When the doctors first told me that I needed a transplant, I thought, no worries. I have 5 brothers and a twin sister. Over a dozen nieces and nephews. More cousins then I can count.

I sent out several very informative mass Emails. Listing doctors, phone numbers, etc.

After a year, not one person has come forward.

Just 2 weeks ago I got the nerve to ask my twin sister face to face. She said that she didn't have the emotional strength to do it. I was blown away. I was devastated. I cried every day for a week. I know that some people are stronger then others but I'm afraid that I will never feel the same way about my family again.

I am now working on a Facebook page looking for donors. I'm getting several sweat shirts printed up that say, "Donor Wanted" "Ask Me" I'll be wearing one every day I leave the house.

I just saw this post Mary. I’m angry and hurt for you! I have 65+ cousins… I am close to maybe 5 of them. Its a shame. Stay strong. God bless.


I am so sorry that you are going through this. I understand your hurt, anger and frustration.

Mary, we all feel and hurt for you!

There is, however, another option for you. In the Midwest, and many other parts of the country, most transplants are from healthy people who recently died, many from auto accidents. These are called cadaver transplants and you get a whole liver, not just half a liver or less. The success rate is within a few percentage points of the live donors' (who are often related) transplants. You also don't risk your relative's life or health, which are real concerns. I don't know where you live or how urgent your transplant is, but please understand you can be on two transplant waiting lists (in two different regions). The waiting list in the Midwest is much shorter than that on either coast.

I hope this helps and it comes with a wish and prayer for good health for you!



I am so sorry to hear about your "comments, concerns...." or whatever they would like to call it. I am with you I would be really hard pressed to look her in the face, especially a twin I thought that bond was special... well we all love you and I would do it in a heart beat but I am on this sight because I have PSC also...

Was this a Liver Tx you need or have I missed an earlier post. I'm only new on here as of the last couple of days....

As an adult you would require a liver in it's entirety. Partial livers only go to babies and small children her in Australia. Unfortunately a whole liver can only be harvested from someone who has passed as n the case of my daughter December 6th 2010. She was on the Transplant list only 4 days.......we almost lost her because her body was in such a bad place. She remained on life support for a month post Tx and not expected to survive.

She also has a twin sister who unfortunately also has PSC. It had already been determined that she also will require a Liver Tx.

Although we've lived with Liver disease in both of them these last 2 years it was ascertained to be Cryptogenic (Origin unknown). It was only a week before Christmas that they were eventually diagnosed PSC when Lakota presented with Ulcerative Colitis.......I'm gutted to say the very least...

Although it should be some form of relief to finally have a name it's bought with of a whole new scenario of issues. I've been reading much all over the net but have to wait until next Tuesday (Jan 8th) to get some idea of the impact this is going to have on their young lives. They are currently 16....

Just as we got Lakota out of Intensive Care Unit their Dad (my husband of 33 years) was diagnosed with Glioblastoma Multiforme and given 12 months to live. Unfortunately he passed away March 15th 2012. It's been a hard road for my girls and ultimately me.

I sincerely hope the help comes to you as and when you require it. I know exactly where you are on the page and send every blessing......Toni,,,,(Mum to Jo-Dene and Lakota)

Teddy/Toni my heart goes out to you. Keep your spirit up. You’re in my thoughts and prayers.


I have a small family and the surgeon told me I needed a live donor transplant because I would not live long enough to get a cadaver liver. Only my daughter was willing, though testing found her not a match. She put my story on Facebook and a girlfriend from high school that she had not seen for 15 years, replied, was tested and became my donor.

I know the hopelessness you must feel. I felt it, too. Have faith that there is an answer. I never lost hope. My transplant is almost one year old and is doing fine. Expect good. It comes from places you never expect. Northwestern Memorial Hospital in Chicago has just started benevolent donors. These are people willing to donate organ tissue to strangers. It is sponsored by the Northwestern Memorial Hospital Philanthropy Office, directed by Ann Murray. If you are interested, you can reach her by calling (312) ■■■■■■■■ and asking for Ann Murray.

Thank you everyone. Sometimes I get so caught up in my own hurt, pain and anger. The support that you all give is amazing. Your support is so unselfish that it makes me feel very selfish.

The more that I read, the more that I learn. Procedures are so diffrent from east coast to west coast. From country to country. I'm getting emotionly stronger everytime I'm on this site. Again, thank you everyone for being here.

PSC'ers get used to riding the emotional roller coaster. Don't beat up on yourself. A good cry is sometimes the best medicine. As for being selfish, look at it this way: expressing yourself is what this site is all about. I choose to be here expecting to help someone. I certainly have benefited and it's time to give back. Buck up. Cheer up. The future awaits.

First Clinic Day for the New Year and i get some idea of how to knit all the information together I've been researching over Christmas/New Year.

My girls only newly diagnosed since closure for Christmas. Mail in last Friday brings news of 'Admission' at 8am for 'Faranject Infusion' for Lakota as she's Iron deficient and her gut won't absorb injested necessary vitamins & minerals etc.

Sooooooo.....a long day but at the end of it I'm hoping I'll be a little wiser and better armed to keep my girls afloat....

Respect to all...........Toni

I was thirteen when I was diagnosed with my Psc but all you have to do is act like its just another day and talk to your loved ones about it I talked with my dad for four hours straight. Have a nice dinner or a night out. I just think to myself a out all the good things in my life

wow so sorry to hear this mary, i hope someone pulls through for you. please inform me of the facebook fan page i will be sure to like it