Re: insights requested

[Guest guest]

Brighid,

PSC is not and should not be treated like a death sentence. I was diagnosed with PSC 18 years ago (when I was 33), two of our four sons were conceived and born after my diagnosis (the youngest is now 12). My health continues to be fairly good, but every case is different.

If you should decide to adopt, I would suggest you get involved in a church, a local support for physical needs (the group is great emotional support, but the great distances limit the physical support).

Do you live in Canada? and if so what part? I live in Maple Ridge, B.C., but there are members elsewhere in Canada.

May God bless you and your husband for your decision (what ever it is), since your concern is for others.

Ian Cribb (51) PSC 89

I have been living with a PSC diagnosis for 4 years (I lurk here,sometimes). I have cirrhosis, enlarged spleen, have had onesignificant biliary infection and recently a few esophageal ligaturesto deal with varices. I have mild-to-moderate chronic fatigue -- but

it is chronic. I eat well, exercise and take my meds. I'm in mymid-thirties, and while my spouse and I have ruled out trying to getpregnant -- there's enough problems internally to make this unlikely--

the question of adoption or surrogacy (legal in Canada) is stillbefore us. The specialist stressed that this will get worse, that I'm doing wellenough but it is progressing, and as things stand I can probably

expect to end up needing a transplant. He says other symptoms will getworse. Not all next week, or even in five years, but. Yeah.I have a lot of reservations about the demands of raising kids, abouthow much of a physical toll it would take on me, and how much of the

primary caregiving my spouse would have to assume as time goes on. Iam selfish enough to want to hang on to my health as long as I can,and I'm also unselfish enough to not want to become a parent if I am

going to be the cranky fatigued lady, or worse yet, the in and out ofhospital lady.So. Yeah. Insights appreciated.B -- Ian Cribb P.Eng.

[Guest guest]

I can understand your concerns, but by no means do I mean for the

following to sway your decision. You asked for insight and I just

wanted to give you my story. No two PSC stories are the same. Many

people on here have lived years and years with PSC. My husband and I

were married at 23 (we had dated since we were 17). We are now 30.

Approximately 6 months after we were married, we finally found out

why he had started feeling so bad for months before the wedding. He

was diagnosed with UC and PSC. The PSC wasn't a real concern. He

was basically without symptoms for the next four or five years until

he had his J pouch surgeries in 2004. The UC was never controlled

and finally it was time to have his colon removed.

Our daughter was born August 26, 2004. It was during his first

surgery (September 13th two weeks after Lily was born) that his

colorectal surgeon found just how bad his liver was. He basically

accused us of not telling the truth about how bad he was. We didn't

know, his GI didn't know. The blood work still wasn't all that bad.

We started paying more attention to MELD, and everything else

associated with end stage liver disease at this time. He was in and

out of the hospital, mostly due to ascites and electrolyte imbalances

for the next 2 years while we waited for him to get " sick enough " for

a transplant. During this time, Lily was well taken care of by our

extended family, but I was away from her quite a bit. rarely

felt like helping much. He was so tired most of the time. He was

never able to return to work following his second step of the J

pouch. He went on disability around July 2005.

November 18, 2006 while we were once again in the local hospital for

ascites and other issues, we got the call to come to Vanderbilt for

the transplant. Lily was just over 2 years old at this time. We

were in Nashville during Thanksgiving and up until the week before

Christmas. I did the shopping while he rested in the motel. My

parents brought her down to see us once and I came home (three hour

drive) once to take her for her Christmas photos.

Lily has never known anything other than her daddy being sick. It

has been just over 7 months since his transplant. He is back to

working part time as a 911 dispatcher (different job than before J

pouch surgery, but he enjoys it) and still gets tired. He has had a

couple insidences of rejection, the latest two weeks ago. His

numbers looked better this week. He has only been in the hospital

one time post transplant for a stomach virus that caused him some

problems. Finally, we feel like we are getting to do a few things as

a family that he just didn't feel like doing before.

Now that I have said all that, let me say this. If we hadn't had

Lily exactly when we did, we wouldn't have had the chance. He has

had complications from the j pouch surgery as well as the many

reasons why we wouldn't want to have another one due to the drugs

post transplant. She came along at the perfect time. God gave her

to us to help us have something other than sickness to think about.

I don't think she has suffered from having a daddy that had PSC and a

liver transplant. In ways, she is more outgoing because she has

always been used to staying with different family members.

I hope what I have had to say shows that even though it has been

difficult at times, it has also been amazingly wonderful have a baby

through all of this.

wife of