Re: Colonscopy and Transplant list

[Guest guest]

,

It seems your doctor may be a little confused. The old system for listing and transplanting patients did things differently. Then, a patient could be listed whenever a doctor deemed it necessary and the length of time on the list made a big difference -- more, first come, first served. Now, a person must have a certain MELD (for adults) or PELD (for pediatric patients) score. In adults it is a minimum of 6. The patients score has to be updated periodically to keep them on the transplant list. The time between updates depends on what the score is; the higher the MELD/PELD score, the more frequent it has to be updated. The length of time on a list has little to do with how quickly a patient gets transplanted. She can, however, be listed in different regions. Every state belongs to a region, and she cannot be listed twice within the same region. You may want to go to http://www.unos.org/ for additional information.

Has Lynna been diagnosed with UC or Crohn's disease? If so, the doc probably wants to do a colonoscopy to keep an eye on things. If not, he may want to do it to ensure she doesn't have an IBD, since it is so prevalent among PSC patients. If you have more questions for him, please, don't hesitate to call and ask him. You have every right as a parent to have your questions answered.

I'm sorry that your family is having such a difficult time right now. I will be praying that you get some answers and that things calm down soon.

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

,

It seems your doctor may be a little confused. The old system for listing and transplanting patients did things differently. Then, a patient could be listed whenever a doctor deemed it necessary and the length of time on the list made a big difference -- more, first come, first served. Now, a person must have a certain MELD (for adults) or PELD (for pediatric patients) score. In adults it is a minimum of 6. The patients score has to be updated periodically to keep them on the transplant list. The time between updates depends on what the score is; the higher the MELD/PELD score, the more frequent it has to be updated. The length of time on a list has little to do with how quickly a patient gets transplanted. She can, however, be listed in different regions. Every state belongs to a region, and she cannot be listed twice within the same region. You may want to go to http://www.unos.org/ for additional information.

Has Lynna been diagnosed with UC or Crohn's disease? If so, the doc probably wants to do a colonoscopy to keep an eye on things. If not, he may want to do it to ensure she doesn't have an IBD, since it is so prevalent among PSC patients. If you have more questions for him, please, don't hesitate to call and ask him. You have every right as a parent to have your questions answered.

I'm sorry that your family is having such a difficult time right now. I will be praying that you get some answers and that things calm down soon.

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

,

It seems your doctor may be a little confused. The old system for listing and transplanting patients did things differently. Then, a patient could be listed whenever a doctor deemed it necessary and the length of time on the list made a big difference -- more, first come, first served. Now, a person must have a certain MELD (for adults) or PELD (for pediatric patients) score. In adults it is a minimum of 6. The patients score has to be updated periodically to keep them on the transplant list. The time between updates depends on what the score is; the higher the MELD/PELD score, the more frequent it has to be updated. The length of time on a list has little to do with how quickly a patient gets transplanted. She can, however, be listed in different regions. Every state belongs to a region, and she cannot be listed twice within the same region. You may want to go to http://www.unos.org/ for additional information.

Has Lynna been diagnosed with UC or Crohn's disease? If so, the doc probably wants to do a colonoscopy to keep an eye on things. If not, he may want to do it to ensure she doesn't have an IBD, since it is so prevalent among PSC patients. If you have more questions for him, please, don't hesitate to call and ask him. You have every right as a parent to have your questions answered.

I'm sorry that your family is having such a difficult time right now. I will be praying that you get some answers and that things calm down soon.

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

Dear ,

has done a good job of answering your questions, but I

thought I'd let you hear my experiences. My doctor wanted me to get

listed for transplant as soon as possible, too, once I had

cirrhosis. He said that although the new system didn't count waiting

time, having the doctors from the transplant team(s) following you

gives them good background on you and helps them to keep track of

you as things progress. I listed in 2001 at one center after having

PSC for 8-10 years. By 2004, things were deterioriating, and I

listed at two other centers. Listing at the two additional centers

was much more difficult because I was feeling sick - listing when

you're not feeling sick, but have cirrhosis is a piece of cake by

comparison.

I don't know what the status of your daughter's PSC is, but it might

not be a bad idea to consult with one transplant center to get an

idea of where she stands. Secondly, sometimes insurance companies

care who is ordering specific tests like the labs for cancer

surveillance. Some insurance companies won't cover them if they're

requested by a regular GI, but they will if they're requested by a

transplant doctor. So, if she sees the GI you've already met with

consistantly and sees the transplant team once a year, you'll be

well covered to make sure that she's receiving the best care.

I do concur with your doctor wholeheartedly when he says that she

should have a colonoscopy. My doctor did one a year after I was dx

with PSC, and he found that I have ulcerative colitis. I've never

been symptomatic thanks to him finding it early and putting me on

meds for it. 70% or more of all PSC patients have some form of IBD

(not IBS - IBD, which is the worse form). Also, we have a greater

chance of having colon cancer in our lifetimes because of this -

getting colonoscopies started early is essential to keeping up with

the colon and how it is doing.

I know that all of this takes a while getting used to, so you don't

have to jump in with both feet right away. I just wouldn't let the

colonoscopy wait too long because if your daughter is already having

behavioral issues, having potty problems where she's running to the

bathroom more than a " normal " child would not be something to add to

the mix!

Hang in there, things will return to a new " normal " you'll just have

to give it some time.

Take care - and keep asking questions - that'll get you far!

Deb in VA ()

Age 33, PSC 1998, gall bladder removed 1998, UC 1999, birth of son

2000, 11 ERCPs between 1998 & 2005, Listed LTX 2001, LDLTX

5/19/2005, lots of complications 2005-2006, but doing well with only

sinus troubles at the moment - for updates see

www.caringbridge.org/va/deniseb