Re: Re-introductions-Young Adult Issues

April 1, 2009

Hi ,

Welcome back. I am so sorry to hear that Suzanne is now having to deal with PSC problems after such a battle with her UC issues. It is SO unfair that our young adults have to go through these challenges at such a critical time in their lives. Suzanne is in great hands with Dr. Shneider and Dr. Slivka...both are experts when it comes to PSC. You are correct...Dr. Slivka did present at the PSC Conference in Pittsburgh. I still remember his presentation showing a visual ERCP. I found it fascinating. When Suzanne is ready to make the change to adult care, there are great hepatologists at UPMC, Center for Liver Disease...Dr. Chopra is our favorite and highly qualified in PSC care.

The battle of managing the symptoms can be overwhelming. It seems as though when you get one symptom under control another decides to appear. And trying to do all this while trying to get through college at times make it unmanageable. My heart aches that Suzanne had to quit school because of this damn disease. After Todd went off to college 6 months after transplant things were great for his freshman year. I saw my son who struggled to get through his last 2 years of high school emerge into an A/B student, who was focused and determined to succeed. This quickly changed his sophomore year...as LFT's began to rise and symptoms started to reappear (itching and fatigue). It was very difficult for him to jump back into his studies when he would miss a couple of weeks at a time for procedures, hospital stays, etc. We took things one semester at a time. He did have to drop an entire semester because there was just no way he could catch up...there were semesters he had to take light class loads and make up a class during the summer. He will be graduating in May.

Now I am a nervous wreck about him finding a job that will have healthcare benefits that don't exclude pre-existing conditions. I also don't know how he will be able to handle a full time job if he is fortunate enough to find one now during these economic times. What do you do for Suzanne for healthcare insurance if she is not enrolled in college? This has always been a fear that I hoped would never come, but unfortunately we are 6 weeks away from Todd not having insurance. I loose sleep over this every night. I am looking into options, but unfortunately there arent many. He doesn't qualify for an individual policy...our company is too small to qualify for Cobra. I loose sleep over this every night and I am scared.

Together in the fight...Whatever it takes!

Joanne (mom of Todd, psc 01, crohns 02, tx twice 03, rPSC 05, diabetes 06, AIH overlap 08, living life to the fullest 09)

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April 1, 2009

He's graduating! Hooray!!! Wow! That is so wonderful, this news really

brightened my day!

Now, the other stuff. Suzanne is on cobra for now - Also, as long as I am at

Duquesne if she would ever qualify as having a disability she can go back on my

insurance as a dependent. The doctors are looking into whether she qualifies now

but I doubt she does. Dr Shneider thought that since she has the two chronic

conditions she might. I am not sure how long we can keep her on Cobra, I think

right now I am just so relieved that we could get her on Cobra that I don't want

to spoil the relief I felt (she just started on. Cobra in March). Have you

looked into the options of whether he would qualify as having a disability? It

is a scary thought - I wish you luck. I understand our new administration is

very -interested in the issues of the disability community, maybe there's some

help on the way.

I knew about Dr Chopra from previous conversations, so I have him in mind when

we need to make the move. I do feel blessed to have such experts so close

Congratulations to Todd! Are both boys graduating this May?

Its good to reconnect.

LINDA

Sent via BlackBerry from T-Mobile

April 1, 2009