Re: Rendall (Rendall back in Hospital...CMV?)

[Guest guest]

Dear Bill,

I am so sorry to hear about Rendall's return to the hospital. My

son Todd was treated a few times after transplant for CMV. The

diagnosis always showed up in the blood work for him. His symptoms

were nausea, fever - sometimes very high, and dehydration caused by

loss of appetite. The first couple of times he was very very sick

and was treated with IV ganciclovir first in the hospital and

continued at home through his pic line. He seems to have built up an

immunity since he hasn't had it for a year now. That is the good

news. I hope Rendall will have the same outcome if it is indeed

CMV. Could Rendall's kidney failure be caused by the very high

Prograf level? Wow, his level must have been extremely high to be

off of the med for 4 days.

I hope and pray you have some answers soon and Rendall will be on

the road to recovery soon. He has been through so much...he

deserves a MAJOR break.

Joanne

(mom of Todd, psc 12/01, crohns 1/02, tx twice, 12/03 and living

life to the fullest in 05)

Bill wrote:

My son Rendall was flown to Salt Lake last Tuesday night with severe

dehydration and kidney failure due to severe nausea, diareha, etc.

(no fever), low BP. He was in ICU till Thurs. night on heavy IV

drip. Doc's were certain that it was CMV Virus, but after

colonoscopy, cultures, blood panels, etc. have no evidence of that.

His prograf leveel was very high also, but LFT's look good even

after four days w/o prograf to bring the level down.

Any thoughts would be welcomed.

[Guest guest]

Dear Bill,

Best wishes to you and Rendall. My son doesn't know what is is to go

less than 5 or 6 times a day and is somehow used to it being liquid. He

has PSC and UC . He obviously has different problems than your son

since he has not had a transplant. Still since he was in the ICU in

Feb. and medvac-ed home and in the hospital again in April, I can

relate to what you are going through. I'll keep sending good thoughts

and hope for a turn around out to you.

Lee

> Dear all,

>  

> Have been pretty much in the lurk mode for the last couple of weeks. I

> see Deb got the great news she was looking for, and wish her and her

> husband all the best. She has alwasys been there for us, and I can

> only hope to somehow partially return the favor.

>  

> My son Rendall was flown to Salt Lake last Tuesday night with severe

> dehydration and kidney failure due to severe nausea, diareha, etc. (no

> fever), low BP. He was in ICU till Thurs. night on heavy IV drip.

> Doc's were certain that it was CMV Virus, but after colonoscopy,

> cultures, blood panels, etc. have no evidence of that. He is still on

> IV and pedialyte by mouth, and making 6-10 trips to the bathroom each

> day. They are continuing to treat like it is CMV, but say it could be

> any one of a number of undetectable viruses. He won't be released

> until the bathroom visits are once or twice a day with much more solid

> " results " . He is also on a regular diet, but everything just turns to

> liquid. Has anyone else been through anything similar to this post

> transplant? I see Jim is going through a similar experience, but has

> high fever. Rendall has been lucky enough to have never had UC or IBD

> accompany his PSC. His prograf leveel was very high also, but LFT's

> look good even after four days w/o prograf to bring the level down.

>  

[Guest guest]

Dear Bill;

I am so sorry to hear of Rendall's recent hospitalization.

Cytomegalovirus would seem to be the most obvious possibility.

Hopefully, they can check quickly for this. Are they giving him

antiviral agents? We wish Rendall a quick recovery.

Best regards,

Dave R.

[Guest guest]

Thanks Joanne,

prograf on Friday 04-08 was 25, & Dr. called personally to tell him to not

take any for a couple of days. He was to go for a checkup on 04-13, and by

Tues. night could not make the trip by car (5-6 hrs.) so we had to fly.

Thanks to a friend with an aircraft. His dehydration had to be due in part

to loss of appetite, but no fever, (low temp.), and the ongoing diahrea has

all scratching their heads.

Bill

Re: Rendall (Rendall back in Hospital...CMV?)

>

>

> Dear Bill,

> I am so sorry to hear about Rendall's return to the hospital. My

> son Todd was treated a few times after transplant for CMV. The

> diagnosis always showed up in the blood work for him. His symptoms

> were nausea, fever - sometimes very high, and dehydration caused by

> loss of appetite. The first couple of times he was very very sick

> and was treated with IV ganciclovir first in the hospital and

> continued at home through his pic line. He seems to have built up an

> immunity since he hasn't had it for a year now. That is the good

> news. I hope Rendall will have the same outcome if it is indeed

> CMV. Could Rendall's kidney failure be caused by the very high

> Prograf level? Wow, his level must have been extremely high to be

> off of the med for 4 days.

>

> I hope and pray you have some answers soon and Rendall will be on

> the road to recovery soon. He has been through so much...he

> deserves a MAJOR break.

>

> Joanne

> (mom of Todd, psc 12/01, crohns 1/02, tx twice, 12/03 and living

> life to the fullest in 05)

>

>>

>

>

>

>

>

[Guest guest]

,

That is interesting. I'll keep you posted on the course of action as soon as

I know.

Thanks again for the comments.

Bill

Re: Rendall (Rendall back in Hospital...CMV?)

>

>

> Hmmmm. Now that's interesting. When they first put Lori on valocyte,

> they took her off Cellcept and put her on Rapamune. Then, two weeks

> ago, they took her off Rapamune as well.

>

>

> Naperville, IL

>

>

[Guest guest]

Bill

Bill E.

I think lots of things can cause what you describe. I have recently heard through my Hep that prograf while an excellent drug, is often associated with severe gastro disturbance, particularly in the early months of transplant. Let the Docs earn their keep, and figure it out.

All the Bestjd, 44UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3ston City, ILkrmpotich@...

Rendall (Rendall back in Hospital...CMV?)

Dear all,

Have been pretty much in the lurk mode for the last couple of weeks. I see Deb got the great news she was looking for, and wish her and her husband all the best. She has alwasys been there for us, and I can only hope to somehow partially return the favor.

My son Rendall was flown to Salt Lake last Tuesday night with severe dehydration and kidney failure due to severe nausea, diareha, etc. (no fever), low BP. He was in ICU till Thurs. night on heavy IV drip. Doc's were certain that it was CMV Virus, but after colonoscopy, cultures, blood panels, etc. have no evidence of that. He is still on IV and pedialyte by mouth, and making 6-10 trips to the bathroom each day. They are continuing to treat like it is CMV, but say it could be any one of a number of undetectable viruses. He won't be released until the bathroom visits are once or twice a day with much more solid "results". He is also on a regular diet, but everything just turns to liquid. Has anyone else been through anything similar to this post transplant? I see Jim is going through a similar experience, but has high fever. Rendall has been lucky enough to have never had UC or IBD accompany his PSC. His prograf leveel was very high also, but LFT's look good even after four days w/o prograf to bring the level down.

[Guest guest]

jd,

I don't think we have a choice there. His favorite Hep() is convinced it is the CellSept, since that is pretty much the only drug he had not been on with the first Txplnt. The rest of the team told him "no way" so he is bound to show them up. I am glad he is on our side. Rendall is a little better today and the bathroom trips are decreasing, but his kidney's are a little "dry" so it's more lactated Ringers. We know this is just another "bump" in the road, but Ren is pretty discouraged at the way things are going.

Bill E.

Re: Rendall (Rendall back in Hospital...CMV?)

Bill

Bill E.

I think lots of things can cause what you describe. I have recently heard through my Hep that prograf while an excellent drug, is often associated with severe gastro disturbance, particularly in the early months of transplant. Let the Docs earn their keep, and figure it out.

All the Bestjd, 44UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3ston City, ILkrmpotich@...

[Guest guest]

Bill,

Please pass on my hopes to Rendall that this will all be behind him

soon...I know it must be very discouraging to not have answers and to

feel so ill. Hang in there and don't give up!

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, HE 1/2005, MELD 19

[Guest guest]

Thank you Deb. I will pass this on to him.

Bill E.

Re: Rendall (Rendall back in Hospital...CMV?)

>

>

> Bill,

> Please pass on my hopes to Rendall that this will all be behind him

> soon...I know it must be very discouraging to not have answers and to

> feel so ill. Hang in there and don't give up!

>

> Deb in VA

> PSC 1998, UC 1999, Listed Ltx 2001, HE 1/2005, MELD 19

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