Re: A Hillbilly needs our prayers

[Guest guest]

Dear PSC Support,

It is obvious, that so many of our prayers need to be directed towards Kelley

and Laurie and Tom and Kathy as they deal with their difficult ordeals. And I

know that prayers are being said for many more PSCr's including our own loved

ones. I'm hoping we have a little more prayer room for another one of our

friends, Hillbilly Bob.

For those of you that haven't had the chance to chat with Bob, he is one of the

old timers. I was fortunate in that I lived near the hospital Bob went to,

Nebraska Medical Center in Omaha NE. We first met during his back surgery. He

had stenosis and had it repaired. We even got to play golf about a year later.

As Bob's PSC got worse, I got to see him more often as he made the journey from

Branson MO. up to Omaha. I met Bob at the hospital the night he arrived for his

transplant surgery. He came through the transplant with flying colors but within

a week or two complications would occur.

Fast forward three years and I find myself to far away to visit my friend who is

back at Nebraska Medical center awaiting the gift of life. Bob has chronic

rejection, AIH, portal hypertension along with renal failure and bleeding that

they consider part of the kidney problems. Bob is also having the paracentesis

procedure done every week. In my conversation with Bob yesterday, he complained

very little for a man that is much more sick than before his last transplant.

His biggest complaint to me was his encephalopothy.

Tomorrow Bob will have some laproscopic surgery done to see if the doctor;s can

figure out what's going on with the kidneys. His MELD score is 23 but he has to

wait for that donor. The doctors all believe a new liver will correct the

kidneys. Needless to say, Bob needs our prayers.

Bob's room number up at the University of Nebraska Medical Center is 5446. His

last name is Falk.

For those curious about Bob's nickname, he is by no stretch, a hillbilly. Bob

was an engineer in the telecom industry and was, up until recently, still

consulting. Living in the Ozark region of Arkansas/Missouri may have had

something to do with his hillbilly ways.

May all of our prayers fall on all those in need here at PSC support and may God

watch over our friend Hillbilly Bob.

I will keep you up to date on Bob as I check in with him and his family.

Tarheel Tim

[Guest guest]

Dear PSC Support,

It is obvious, that so many of our prayers need to be directed towards Kelley

and Laurie and Tom and Kathy as they deal with their difficult ordeals. And I

know that prayers are being said for many more PSCr's including our own loved

ones. I'm hoping we have a little more prayer room for another one of our

friends, Hillbilly Bob.

For those of you that haven't had the chance to chat with Bob, he is one of the

old timers. I was fortunate in that I lived near the hospital Bob went to,

Nebraska Medical Center in Omaha NE. We first met during his back surgery. He

had stenosis and had it repaired. We even got to play golf about a year later.

As Bob's PSC got worse, I got to see him more often as he made the journey from

Branson MO. up to Omaha. I met Bob at the hospital the night he arrived for his

transplant surgery. He came through the transplant with flying colors but within

a week or two complications would occur.

Fast forward three years and I find myself to far away to visit my friend who is

back at Nebraska Medical center awaiting the gift of life. Bob has chronic

rejection, AIH, portal hypertension along with renal failure and bleeding that

they consider part of the kidney problems. Bob is also having the paracentesis

procedure done every week. In my conversation with Bob yesterday, he complained

very little for a man that is much more sick than before his last transplant.

His biggest complaint to me was his encephalopothy.

Tomorrow Bob will have some laproscopic surgery done to see if the doctor;s can

figure out what's going on with the kidneys. His MELD score is 23 but he has to

wait for that donor. The doctors all believe a new liver will correct the

kidneys. Needless to say, Bob needs our prayers.

Bob's room number up at the University of Nebraska Medical Center is 5446. His

last name is Falk.

For those curious about Bob's nickname, he is by no stretch, a hillbilly. Bob

was an engineer in the telecom industry and was, up until recently, still

consulting. Living in the Ozark region of Arkansas/Missouri may have had

something to do with his hillbilly ways.

May all of our prayers fall on all those in need here at PSC support and may God

watch over our friend Hillbilly Bob.

I will keep you up to date on Bob as I check in with him and his family.

Tarheel Tim

[Guest guest]

Dear Tim,

Thank you for the detailed update on Hillbilly Bob.  He is

fortunate to have such a wonderful friend in you.   We will add him to our

prayer list.  I hope you are doing well and that we will see you in May at the

conference!

Together in the fight, Whatever it takes!

Joanne (mom of Todd, 22, PSC 01, Crohns 02, TX Twice 03, rPSC

05, Diabetes 06, AIH overlap 08, kidney problems and lots of other new issues…but

still doing his best to live life to the fullest 09)

[Guest guest]

Dear Tim,

Thank you for the detailed update on Hillbilly Bob.  He is

fortunate to have such a wonderful friend in you.   We will add him to our

prayer list.  I hope you are doing well and that we will see you in May at the

conference!

Together in the fight, Whatever it takes!

Joanne (mom of Todd, 22, PSC 01, Crohns 02, TX Twice 03, rPSC

05, Diabetes 06, AIH overlap 08, kidney problems and lots of other new issues…but

still doing his best to live life to the fullest 09)

[Guest guest]

-

I am so sorry to read about the people in this group who are having

such dreadful problems. It bring to mind the plan that we had when

the group was founded -- we had an informal buddy system and we were

able to check on each other if anyone went missing for awhile. I

guess the group is way too large to do that now. For example, has

anyone heard from Colleen? She's going through a difficult time now

and she didn't answer my last email.....

Penny

wrote:

>

> Dear PSC Support,

>

> It is obvious, that so many of our prayers need to be directed

towards Kelley and Laurie and Tom and Kathy as they deal with their

difficult ordeals. And I know that prayers are being said for many

more PSCr's including our own loved ones. I'm hoping we have a little

more prayer room for another one of our friends, Hillbilly Bob.

[Guest guest]

The last I heard about colleen she was blogging to her own blog site http://spiffyknits.blogspot.com , but I just checked on that. She last updated on September 21st. Nothing newer on her carepages.

Ian

we had an informal buddy system and we wereable to check on each other if anyone went missing for awhile.>>>

Penny,

I remember this and still informally do this with a local pscer. I appreciate them checking up on me and now that they are getting closer to tx I try to check in with them more too.

Sorry but I like you haven't heard anything from Colleen. Is someone from the Boston area keeping in contact with her?

Blessings,

Barby - KS

-- Ian Cribb P.Eng.

[Guest guest]

The last I heard about colleen she was blogging to her own blog site http://spiffyknits.blogspot.com , but I just checked on that. She last updated on September 21st. Nothing newer on her carepages.

Ian

we had an informal buddy system and we wereable to check on each other if anyone went missing for awhile.>>>

Penny,

I remember this and still informally do this with a local pscer. I appreciate them checking up on me and now that they are getting closer to tx I try to check in with them more too.

Sorry but I like you haven't heard anything from Colleen. Is someone from the Boston area keeping in contact with her?

Blessings,

Barby - KS

-- Ian Cribb P.Eng.

[Guest guest]

The last I heard about colleen she was blogging to her own blog site http://spiffyknits.blogspot.com , but I just checked on that. She last updated on September 21st. Nothing newer on her carepages.

Ian

we had an informal buddy system and we wereable to check on each other if anyone went missing for awhile.>>>

Penny,

I remember this and still informally do this with a local pscer. I appreciate them checking up on me and now that they are getting closer to tx I try to check in with them more too.

Sorry but I like you haven't heard anything from Colleen. Is someone from the Boston area keeping in contact with her?

Blessings,

Barby - KS

-- Ian Cribb P.Eng.

[Guest guest]

Dear PSC Support

I would like to thank Tarheel Tim for his post letting everyone know how I am doing. My Encephalopathy makes it very difficult for me to type, my hands shake too much. My girlfriend is typing this for me now.

I am out of club med and my meld score varies from 22 to 26, which I found out is not high enough on a second transplant. So, I'm just trying to hang on until I sick enough to get a new liver. My thanks also goes out to for calling to check on me.

One of the things I hate the most about waiting is not being able to be at home. My home in northern Arkansas is 8 hours from Omaha and as you know you have to live within 6 hours to get a transplant. I currently receive home health at my mothers home in St. ph, MO. I am thankful to my girlfriend and other friends for taking care of things at home for me, including looking after my rental property.

Another annoyance is my weekly visits to Omaha for perioentesis, where they pull anywhere from 6 to 8 liters, even though i follow a low sodium/restricted fluid diet. I can't take diuretics due to poor kidney function.

Even though I have not been diagnosed with PSC this time, I should be more active in this group, I apologize for not being more active.

Your prayers are appreciated.

Hillbillybob

[Guest guest]

Dear PSC Support

I would like to thank Tarheel Tim for his post letting everyone know how I am doing. My Encephalopathy makes it very difficult for me to type, my hands shake too much. My girlfriend is typing this for me now.

I am out of club med and my meld score varies from 22 to 26, which I found out is not high enough on a second transplant. So, I'm just trying to hang on until I sick enough to get a new liver. My thanks also goes out to for calling to check on me.

One of the things I hate the most about waiting is not being able to be at home. My home in northern Arkansas is 8 hours from Omaha and as you know you have to live within 6 hours to get a transplant. I currently receive home health at my mothers home in St. ph, MO. I am thankful to my girlfriend and other friends for taking care of things at home for me, including looking after my rental property.

Another annoyance is my weekly visits to Omaha for perioentesis, where they pull anywhere from 6 to 8 liters, even though i follow a low sodium/restricted fluid diet. I can't take diuretics due to poor kidney function.

Even though I have not been diagnosed with PSC this time, I should be more active in this group, I apologize for not being more active.

Your prayers are appreciated.

Hillbillybob

[Guest guest]

Dear PSC Support

I would like to thank Tarheel Tim for his post letting everyone know how I am doing. My Encephalopathy makes it very difficult for me to type, my hands shake too much. My girlfriend is typing this for me now.

I am out of club med and my meld score varies from 22 to 26, which I found out is not high enough on a second transplant. So, I'm just trying to hang on until I sick enough to get a new liver. My thanks also goes out to for calling to check on me.

One of the things I hate the most about waiting is not being able to be at home. My home in northern Arkansas is 8 hours from Omaha and as you know you have to live within 6 hours to get a transplant. I currently receive home health at my mothers home in St. ph, MO. I am thankful to my girlfriend and other friends for taking care of things at home for me, including looking after my rental property.

Another annoyance is my weekly visits to Omaha for perioentesis, where they pull anywhere from 6 to 8 liters, even though i follow a low sodium/restricted fluid diet. I can't take diuretics due to poor kidney function.

Even though I have not been diagnosed with PSC this time, I should be more active in this group, I apologize for not being more active.

Your prayers are appreciated.

Hillbillybob

[Guest guest]

Dear Hillbilly Bob (and kind girlfriend),

Thank you so much for the update, but know there is no apology necessary for not being as involved in the group as you once were. All of us who have gotten sick enough for a transplant, I believe, can relate to the illness interfering with normal activities and the NEED to take care of yourself! You are doing what needs to be done, saving your energy to pull from when the need arises - such as weekly trips to relieve the ascites.

I, too, am grateful to Tim and for their updates. Tim is so good about posting on behalf of others, and talk on the phone on a regular basis so I check up on you frequently - knowing that she has contact. She's a real sweetie, too, PSC, and four kids and still takes the time to take care of others. Again, all of you are proof that this is an amazing group!

Well, take care of yourself and I look forward to the news that THE liver has come in - the one with YOUR name on it!

Big hugs from your old time buddy,

(MO)

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[Guest guest]

Dear Hillbilly Bob (and kind girlfriend),

Thank you so much for the update, but know there is no apology necessary for not being as involved in the group as you once were. All of us who have gotten sick enough for a transplant, I believe, can relate to the illness interfering with normal activities and the NEED to take care of yourself! You are doing what needs to be done, saving your energy to pull from when the need arises - such as weekly trips to relieve the ascites.

I, too, am grateful to Tim and for their updates. Tim is so good about posting on behalf of others, and talk on the phone on a regular basis so I check up on you frequently - knowing that she has contact. She's a real sweetie, too, PSC, and four kids and still takes the time to take care of others. Again, all of you are proof that this is an amazing group!

Well, take care of yourself and I look forward to the news that THE liver has come in - the one with YOUR name on it!

Big hugs from your old time buddy,

(MO)

Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar!

[Guest guest]

Dear Hillbilly Bob (and kind girlfriend),

Thank you so much for the update, but know there is no apology necessary for not being as involved in the group as you once were. All of us who have gotten sick enough for a transplant, I believe, can relate to the illness interfering with normal activities and the NEED to take care of yourself! You are doing what needs to be done, saving your energy to pull from when the need arises - such as weekly trips to relieve the ascites.

I, too, am grateful to Tim and for their updates. Tim is so good about posting on behalf of others, and talk on the phone on a regular basis so I check up on you frequently - knowing that she has contact. She's a real sweetie, too, PSC, and four kids and still takes the time to take care of others. Again, all of you are proof that this is an amazing group!

Well, take care of yourself and I look forward to the news that THE liver has come in - the one with YOUR name on it!

Big hugs from your old time buddy,

(MO)

Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar!

[Guest guest]

Hi Hillbilly Bob and wonderful girlfriend:

May you get the new tx soon.

Keep the faith and know that we are with you in spirit and kind, healing

thoughts.

dee wife of bob