Re: Whitfield Bio

[Guest guest]

I'll add a bit to Barb's response by saying that facing a liver transplant is hard but it gives us a reason to hope. You are going through the difficult times now, and it will probably get worse in the months to come. However, after a transplant, life improves greatly.

I received a new liver 4 1/2 years ago and live a fairly normal life. I feel good. I take 7 different drugs a day and now it is habit. I don't have any real problems with being immunosuppresed. I had ulcerative colitis, most of us do, and had my colon removed 2 years ago. I went 21 years between dx and tx, most of that time the UC was active so my colon had to go before cancer developed. I also developed diabetes, that is not uncommon in tx patients. The steroids cause it, and even though many people get over it, I had a genetic predisposition to it so I'm on insulin. Again, that is something I have gotten used to and it doesn't really bother me.

You should expect to live well and enjoy life with a job, family and all the things that make your days good. All the information you want should be readily available through this site, and your medical team. Having PSC is tough, but it shouldn't ruin your life.

Keep in touch and take care

MizKitSee what's free at AOL.com.

[Guest guest]

Hi

,

Welcome to the group! Lots of people will answer any questions

you may have. Don’t be afraid

to ask anything. Please tell us

where you live – we probably have a member that lives there too. Your girl friend sounds like a keeper!

I’ll answer your

questions (I am my son’s caretaker) and I know other’s will too.

1. I am allergic to milk. I have been told

that it comes along with the PSC, does anyone have the

same issue?

Not that I’ve heard of. Many people have allergies,

I don’t think you can blame that on PSC though.

2. I have a big problem with my weight, is this a PSC

thing or what?

I don’t think you can blame the weight gain on PSC

either. Once a person’s liver

is sick enough (cirrhosis) they usually loose both weight and muscle tone.

3. Those of you who

have seen a transplant team, what are some of the things that I need to prepare

for. ( ie. tests, procedures, etc)

During the evaluation, you’ll see

lots of doctors and have a bunch of tests run (none painful.)

They usually do a lot of blood work, take X-rays,

do an MRI, Ultra

Sound, CT scan, pulmonary function tests (if they think you need it) and an

electrocardiogram. They will also check

your kidneys. You’ll have

consults with specialists from the transplant team, surgeons, Hepatologist

cardiologist, psychologist, nurses and social workers. You’ll probably meet with a dietitian

or nutritionists too.

5. I have also been told that UC and PSC come together, is there anyone

here that has both also?

Most PSCer’s have either UC or Crohn’s. Some do, a few don’t, some

develop problems after transplant.

HTH, you’ll find lots of support and

knowledge here. Once you get to

know us, you’ll feel like a member of the family and will understand why

you can always count on us to help in any way we can. Welcome.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

Barb,

Thanks for the insight. My girlfriend is a keeper. She is there when

I need to talk. She was the one that told me about this sight. I am

sure that this will help me in answering any questions I have.

Barb Henshaw wrote:

Hi

,

Welcome to the group! Lots

of people will answer any questions

you may have. Don’t be afraid

to ask anything. Please tell us

where you live – we probably have a member that lives there too.

Your girl friend sounds like a keeper!

I’ll answer your

questions (I am my son’s caretaker) and I know other’s will too.

1. I am allergic to milk.

I have been told

that it comes along with the PSC, does

anyone have the

same issue?

Not that

I’ve heard of. Many people have allergies,

I don’t think you can blame that on PSC though.

2. I have a big problem with my weight, is this a

PSC

thing or what?

I don’t

think you can blame the weight gain on PSC

either. Once a person’s liver

is sick enough (cirrhosis) they usually loose both weight and muscle

tone.

3. Those

of you who

have seen a transplant team, what are some of the things that I need to

prepare

for. ( ie. tests, procedures, etc)

During the

evaluation, you’ll see

lots of doctors and have a bunch of tests run (none painful.)

They usually do a lot of blood work,

take X-rays,

do an MRI, Ultra Sound, CT scan,

pulmonary function tests (if they think you need it) and an

electrocardiogram. They will also check

your kidneys. You’ll have

consults with specialists from the transplant team, surgeons,

Hepatologist

cardiologist, psychologist, nurses and

social workers. You’ll probably meet with a dietitian

or nutritionists too.

5. I have also been told that UC and PSC come

together, is there anyone

here that has both also?

Most

PSCer’s have either UC or Crohn’s. Some do,

a few don’t, some

develop problems after transplant.

HTH,

you’ll find lots of support and

knowledge here. Once you get to

know us, you’ll feel like a member of the family and will understand

why

you can always count on us to help in any way we can. Welcome.

Barb in Texas

- Together in the Fight, Whatever it Takes!

Son Ken (33) UC

91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

Whitfield wrote:

> 4. For those of you who have had a liver transplant, what are some of

> the side effects, and what is the recovery time?

Recovery from transplant can vary a lot. I just had a transplant about

a month ago, and I'm doing pretty well. I'm back home and already

starting to pick up a lot of the projects I was working on before the

transplant. I'm hoping to get some corn planted in the garden today,

and I'm planning on starting to put down ceramic tile in the back room

this week. I'm still a little slower than before the transplant due to

the incision, but I have more energy than I did before, and I don't feel

sick. Even the UC is better.

I know recovery is much harder for some people. My doctors seem to

think that my recovery has gone just about as well as it possibly can so

far. Before the transplant I prepared myself to endure the worst, but

planned to do my best to have a quick and easy recovery. I also really

feel that I was very blessed. I had so many people praying for me, and

just knowing that helped me to keep a positive attitude.

athan

[Guest guest]

> > 4. For those of you who have had a liver transplant, what are

some of the side effects, and what is the recovery time?

......I just had a transplant about a month ago..... I'm planning on

starting to put down ceramic tile in the back room this week.

> athan

EEEECH - I'm being a nag, but ceramic tile - please don't risk an

incisional hernia with a project involving lifting, etc. (Unless they

are small tiles and minimal lifting of any equipment to cut, prep,

etc.) I'm just sounding like a mom, but with care!

Joanne

(, Ca., mom of , 16, UC/PSC (2-06); daughter of Pat, UC

(8-06; new onset seizure last week, plus multiple other chronic issues

- so I get to talk like a true nagging mom/daughter/sandwich today!)

[Guest guest]

jmhatch39 wrote:

> please don't risk an

> incisional hernia with a project involving lifting, etc. (Unless they

> are small tiles and minimal lifting of any equipment to cut, prep,

> etc.)

Well, they're 13 " x13 " tiles, but each one is under my 5lb weight

limit. I'll have my wife lift the bags of mortar and grout etc... They

definitely are over my weight limit!

I am trying to be careful, but it's kind of hard. I've had to use all

my fortitude to resist the temptation to take the tiller out to the

garden so I can plant my corn! I really want my sweet corn this year...

I was too sick to plant any last year, and I was determined to get some

in this year. I got about 1/3 of the garden tilled this spring before I

got too sick to work on it any more. Now I feel up to planting it, but

I'm not supposed to do the tilling. Maybe I can get my wife to do that too!

Thanks for your concern! I will take it to heart!

athan

[Guest guest]

Hi my name is Sandi and like you I am 28yrs old and live with my

parents due to my condition. This past year has been an absolute

roller coaster for me, and now I am being refered by my hepatologist

to the transplant team at MCV here in VA.

I have not been diagnosised with UC or Crohn's yet thankfully but I

do have colitis.

The only thing that I can say about the weight is that I have lost

weight over the past year and a half about 130lbs. So I would not

say that weight is due to PSC but it could be due to some medications

so you may want to check the side effects on them.

The people in this group are absolutly wonderful dont hesistate to

ask anything I think the questions have run the gamet. Look forward

to chatting with you in the future.

Many Blessings To You

Sandi