Comment

Comment by Connie Austin on April 24, 2012 at 9:12pm

Susan, sending positive vibes that he will soon be listed and that there's a new liver in his not-too-distant future.

Comment by Jan Ward on April 24, 2012 at 7:27pm

Susan G:

My prayers are def with you guys. I have a good feeling.

Blessings

Jan

Comment by Burnie Schultz on April 24, 2012 at 7:20pm

Stu,........I had liver TX 17+ yrs ago. I have been on 3mg's of prograf 90% of that time and 5 mg's of prednisone. I have watched my Kidney functions drop year after year to the point they are at 1/3 the level they should be for my age [stage 4 kidney failure]. GFR = 28 and Creatine  = 2.45 during last test. My TX center [UCSF] is going to try and switch me off prograf and over to cellcept. I do have an appt w/ a Neph in middle of May for more testing. My general heath is good other wise, and i'm very active at age 69........ Keep an eye on your kidney functions all the time.--Burnie

Comment by Connie Austin on April 24, 2012 at 7:19pm

Peter, it's actually nephrologist--2 o's.  I worked for one for a couple of years.

 

I'm on Lasix 40 mg/day and also Prograf.  I feel it's the Lasix causing my creatinine elevation.  I was so swollen after they opened me up again March 14th, they had to increase the Lasix dose.  Now that I'm "normal" again, I'm going to ask about decreasing the dosage again, to 20 mg a day, as I know it is very hard on the kidneys.  Both my creatinine and BUN are elevated (1.3 and 24, respectively.)  Prior to transplant, I was only taking 20 mg of creatinine twice a week.

Comment by Susan G. on April 24, 2012 at 7:15pm

Thank you Jay for your encouragement.  I haven't forgot Hopkins, it's about 6 miles from where we live.  Yea, I know they want him to fit in the criteria better :).  By the way, if your spleen is enlarged, you do tend to feel full or full quicker. 

@ Connie, Gazz (hubby) has Hep C along with the cirrhosis that goes with it.  He has probably had Hep since the 70s, so his cirrhosis is getting pretty advanced.  He is not a surgical candidate for resection and he had multiple tumors.  While radio embolization (he's had SIRT) and other liver directed therapies can control the tumors, with the damage that these do, along with the cirrhosis, it is just a matter of time until his liver decompensates.  He really needs to get downstaged and on the list.

Hugs and prayers to all.

Susan

 

Comment by Stu L on April 24, 2012 at 6:01pm

I have had my Creatine rise too.  Nothing serious though,  The doc's think it's just caused in part by the prograf and the lasix. I always wonder how serious an effect the prograf has on the kidneys? ,

Comment by Jan Ward on April 24, 2012 at 5:33pm

Peter:

Ain't it always da schitz?

I have faith you'll be OK...On our meds things are always gettin screwy but sort of always stayin' the same, y'know?

Comment by Peter james goodman on April 24, 2012 at 4:40pm

Bobbiejo thanks for the tip, I will keep all informend.  As of today, I was told that this is common with Liver Transplant patients.  I will be getting a call for an appointment with a Nephroligest??LMBO--(another oligest)--and undergo renal studies, and an ultra sound to start with.  Discouraged but it is just a small price to pay thus-far for more time with my family and friends.  Thanks again!

Comment by Connie Austin on April 24, 2012 at 7:21am

Peter, I assume you meant creatinine levels.  Elevation can be caused by diuretics.  Are you taking Lasix or atenolol?

Comment by Bobbiejo Winfrey on April 24, 2012 at 4:35am

I am sorry that you are having these problems. I have not really experienced any pain at the site of my scars once I had gotten the area to be more flexible and not so tight with a few simple exercises. I hope that your doctors are able to figure out what is behind your pain. I have had my creatinine go up a little bit since my transplant about 6 and a half years ago, but not high enough to be much of a concern at the moment. I have been trying to drink more water recently which I think may have helped a little. I hope yours may soon go down. I will keep you in my thoughts and prayers. Many hugs and best of wishes.   

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