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]

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]

I used the phrase "establish a relationship with a transplant center" in my post earlier this week because that's the words my dr used with me. He was using the words "evaluated by a transplant center" for awhile but he changed his phrasing to humor me. I have been arguing with him since Nov about going to a transplant center. He wants me to go because I had 4 bouts of cholangitis in 3 months, had to be placed on daily antibiotics, have had a stent for over 2 years and my ERCP's have each shown disease progression.I didn't want to go for a few reasons. First, because I go to enough darn dr appts. I have 4 stent changes every year plus visits to my gastro, rheumatologist, family dr and pain mgmt along with my annual at the gynecologist. My rheumie even made me go to occ therapy for awhile. I just feel like enough is enough. Another dr means another day or 2 or 3 as a patient. Second, I argued that I wasn't sick enough. I'm sure when I'm sick enough that I'll be willing to go. Thankfully, I don't have half the problems some of the people in this group have so it just feels premature to me to go. I don't think I'm anywhere near needing a transplant. Finally, he wanted me to go to the Cleveland Clinic. I would rather take my chances at my dog's animal hospital (which just successfully treated her for pancreatitis) before I would voluntarily set foot inside that place again. I hate them so much I wouldn't even take free itunes gift cards from them at the US figure skating nationals. So yes I'm sure its a good and logical step to have a relationship with a transplant center but I'm stubborn and just don't want to do it. DarcySent from my Verizon Wireless BlackBerryFrom: 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]

I used the phrase "establish a relationship with a transplant center" in my post earlier this week because that's the words my dr used with me. He was using the words "evaluated by a transplant center" for awhile but he changed his phrasing to humor me. I have been arguing with him since Nov about going to a transplant center. He wants me to go because I had 4 bouts of cholangitis in 3 months, had to be placed on daily antibiotics, have had a stent for over 2 years and my ERCP's have each shown disease progression.I didn't want to go for a few reasons. First, because I go to enough darn dr appts. I have 4 stent changes every year plus visits to my gastro, rheumatologist, family dr and pain mgmt along with my annual at the gynecologist. My rheumie even made me go to occ therapy for awhile. I just feel like enough is enough. Another dr means another day or 2 or 3 as a patient. Second, I argued that I wasn't sick enough. I'm sure when I'm sick enough that I'll be willing to go. Thankfully, I don't have half the problems some of the people in this group have so it just feels premature to me to go. I don't think I'm anywhere near needing a transplant. Finally, he wanted me to go to the Cleveland Clinic. I would rather take my chances at my dog's animal hospital (which just successfully treated her for pancreatitis) before I would voluntarily set foot inside that place again. I hate them so much I wouldn't even take free itunes gift cards from them at the US figure skating nationals. So yes I'm sure its a good and logical step to have a relationship with a transplant center but I'm stubborn and just don't want to do it. DarcySent from my Verizon Wireless BlackBerryFrom: 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]

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

[Guest guest]

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

[Guest guest]

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

[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