RE: Establishing Relationships with Transplant Centers

[Guest guest]

I was in the same situation. As soon as I found out I had PSC my Dr. Sent me to a transplant center and I went through the evaluation process right away. Even though my MELD is only an 8, I see my hep doc on a 6 month basis and have an ultrasound and labs done to update my MELD every 6 months. I didn't realize it wasn't the same for everyone. Serbrina in CASent via BlackBerry by AT&TFrom: Sandi Pearlman Date: Fri, 27 Feb 2009 18:42:11 -0800 (PST)To: < >Subject: Establishing Relationships with Transplant Centers Hi! There's been some talk on the boards about when to establish a relationship with a transplant center. As soon as I was diagnosed with PSC, I started to be seen in a transplant center. In fact, I wasn't even given a choice, that's where I was directed. Is this not the case for everybody? If it's not, why would somebody not want to start a relationship with a transplant center? Isn't it sort of like the life insurance/wearing clean/nice underwear principle, it's good to have because you never know when you're going to need it? Sandi in VA

[Guest guest]

Hi All,

When I was diagnosed my Gastro Doc. I was seeing for UC actually did the ERCP which helped immensely (he's a very skilled physician), but he also directed me to see a Hep Doc. at town U Hospital. Dr. Shetty is the head of the Liver Tx and transplant center, but thought it was premature for me to be even evaluated and therefore I have no MELD score.

I guess my main question is this: I remember talk on the message board about choosing the best Transplant center and building a relationship with them. I am going to see my current hep doctor and therefore by default have a relationship with town based on convenience. Do people think we should shop around or just stick with what's close? If we should shop around, when should we start - early like me or when there's more progress in the disease?

Don't want to beat a dead horse, but I'm sure my doctor won't give me a completely unbiased response if I ask her.

Thanks!

Berry

Washington, DC

UC'94/PSC'05

[Guest guest]

Hi All,

When I was diagnosed my Gastro Doc. I was seeing for UC actually did the ERCP which helped immensely (he's a very skilled physician), but he also directed me to see a Hep Doc. at town U Hospital. Dr. Shetty is the head of the Liver Tx and transplant center, but thought it was premature for me to be even evaluated and therefore I have no MELD score.

I guess my main question is this: I remember talk on the message board about choosing the best Transplant center and building a relationship with them. I am going to see my current hep doctor and therefore by default have a relationship with town based on convenience. Do people think we should shop around or just stick with what's close? If we should shop around, when should we start - early like me or when there's more progress in the disease?

Don't want to beat a dead horse, but I'm sure my doctor won't give me a completely unbiased response if I ask her.

Thanks!

Berry

Washington, DC

UC'94/PSC'05

[Guest guest]

Darcy,

Nita said it well. I agree and urge

you to reconsider.

From:

[mailto: ] On Behalf Of Anita Oakley

Sent: Saturday, February 28, 2009

9:24 AM

To:

Subject: RE:

Establishing Relationships with Transplant Centers

Darcy – if you have had 4 bouts of cholangitis in 3 months

and are on daily antibiotics – it’s time NOW!

My hep dr said that any one of those infections

could be the one that “gets me.”

Her partner said that if you get resistant to the antibiotics

the transplant surgeons won’t touch you.

I fought the whole transplant idea, too, but please

don’t play Russian Roulette with your life!

Nita