So my friend has been in the hospital for another two weeks! She keeps getting septic/blood infections. She just had her one year anniversary of her transplant in February. They are now telling her that something is wrong with her bile ducts and that she either has cancer or needs a new liver.
Before her first transplant they had her undergo chemo and radiation as a precautionary measure. Then she had her transplant about after completing those. When they did the transplant they found "cancer" what kind or if they were simply abnormal cells I am learning about here, I don't know. A few days after transplant they went in and removed the "cancer."
Personally, I am not happy with her follow-up care. Unfortunately much of the initial took place in the hospital, where she was six months post transplant.
I know her doctors talked to docs at Mayo before regarding her case, but at what point do you go for a second opinion? And where should she go?
She had UC for years that was minimally treated because of the lack of insurance. Her PSC was quite advanced when they finally found it, also due to lack of insurance.
Thank you!
Hi Melody,
I am sorry, I do not have answers forr you, but I can inform you that there is a support group for people with PSC after transplant
http://health.groups.yahoo.com/group/Livertx-PSC/
Regards,
Chaim
Melody,
Can you get access to your friend's medical records? I think all she has to do is sign a HIPAA consent form allowing this. Then you could schedule a second opinion for her based on her records -- with the doctors at Mayo, perhaps? I don't know where she is, but I'd say she needs a second opinion. She may, as Chaim suggested, have a recurrence of the PSC. But it sounds like she also needs a good advocate who has the legal right to speak for her. That would be you. She definitely needs to have some medical detective work and advocacy to get all this sorted out. Does she qualify for Medicaid at this point?
Best to you,
Dana Bennett
I sure hope your friend gets better.
Mona
Hi Melody - what a good friend you are!! I know your friend would hug you ferociously if she could. I only have a few comments. At this stage of the game information is good. Get the pathology report or directly hold a doctor to the fire and ask /demand answers. Is there cancer and what type. There are 2 types of liver cancer - hepatocarcinoma which is liver cell tissue and is very transplantable. The type PSC patients are vulnerable to because of bile duct disease is cholangiocarcinoma (cca). Cca is commonly known as bilary cancer. Bilary cancer is very controversial for transplant for one simple reason. It is an epithelial cancer. Epithelial tissue is very prevalent all over the body. The concern is that cca spread from another tissue in the body. Survival levels are low with cca and even lower if cancer elsewhere in the body is not detected. Also it is very likely cca pre transplant will return in the transplant. If this is the case the only way she'll get to a transplant is after chemo/rad and some time free of cancer.
It is a very scary situation and I'm sorry if that is what she is going through. There are 2 famous people that died of cca. Walter Peyton a Chicago Bears player developed PSC and then cca. He was not allowed a transplant because of the cca - so even fame and fortune won't get you one in this situation. Chris Ledeaux, a professional bull rider and country western singer, had a transplant and then within a year or 2 died of cca. They suspect he had the cca prior to transplant and should never have had it.
I had cca which was surgically removable, the size of a racquetball and infected. I had surgery and then oncologists & transplant decided not to chemo or radiate. And head of Univ of Colo (Kam) agreed I could be listed if I was free of cancer 6 months. However my case was still voted on every 3 months and it was always split - 3 yes, 2 no, and 1 abstain. I was allow to be listed and after 9 months (15 after the tumor was removed) I had a tranplant.
I have not had cancer return but the PSC has returned as bad as the first time and I'll have a transplant again someday.
I'd recommend getting as much medical info as possible. Ask the transplant surgeon for referral. I always find a question like 'If this were your family or you who would you go to?'. But she has to pull thru the sepsis first. They won't transplant if she is sick. So first things first. Focus on getting medical stability and then go further if necessary.
Best of luck Melody and thanks to people like you who look after people like us. Cheers! Deb
So sorry to hear about your friends decline, praying all works out for her.
My son has Crohn's disease, and had UC until he had a total colectomy when he was 14. He was diagnosed with PSC about 3 or 4 years ago. He is Stage 2 fibrosis and when he reaches stage 3 he will go on the transplant list. His LFT's are 5 times higher than normal. We are watching his bilirubin closely. Thank you for sharing your friends story, he hasn't had an ultrasound on his bile duct in over a year and I'm going to make an appointment today.
Please tell your friend that I applied for Social Security for him and he was approved immediately. When they see transplant and UC, she should be approved. While on SS, after 2 years she will get Medicare (Not Medicaid). This won't help her now but the sooner she applies, the sooner she will get it in the future!
Your friend is blessed, she has you!
I will confirm this info. Apply asap and when you do - dot every i, cross every t. You can do it online and it takes a few hours to do. But take the time and put in all zips, addresses, dates of tests etc. Need for a transplant will definitely get the soc sec. dis. And Margaret is correct - Medicare starts 2 years after disability date. Disability date starts 6 months after first symptoms started. So it is important to get that date determined. SSDI is determined in stages - stage I and II are how long have you worked and how much have you paid into system. Stage III is diagnosis. Stage IV and V get into the SSDI doc's visit etc. Usually someone with your friends level of illness gets approval at Stage III. And if her symptoms started some time ago as soon as the application is approved the SSDI payments will start immediately. Until Medicare starts she may qualify for Medicaid - I don't know much about that system except the states have more input into how they distribute and determine who gets it.
Good for you Deb. You've been through it all and you know the system. You are a GREAT ASSET to the group. LOL Go GREATDANE!~ Thanks for all your help and input. You are a great communicator.
Mona
PSC/Crohn's and loving life! Fake it till I make it! :)