Cirrhosis Support Group
Cirrhosis is a consequence of chronic liver disease, most commonly caused by alcoholism and hepatitis C. Ascites is the most common complication of cirrhosis and is associated with a poor quality of life, increased risk of infections, and a poor long term outcome. Liver damage from cirrhosis cannot be reversed, but treatment can stop or delay further progression and...
I got my 3rd offer at 6:30 pm on Tuesday, August 6 th. I was asked to report to hospital at 8 so they could do more blood draws due to antibodies in my blood. Got to Northwestern at 8:15 but did not get to room until 10
pm. I told them I had not received any blood products since my earlier aborted call In July so they could use those test results. This time I did not want to tell anyone about call in case it got stopped somewhere in the process. I was taken to OR at 3:30 am. Apparently, I was out of surgery in 5 hours. Spent Wednesday-Thursday evening in IC U. I was off vent when I came to. I passed
pulmonary, and physical therapy evaluation. Was in hospital until Sunday afternoon. Then, transferred to local hotel
where hospital hosts you post transplant. Take shuttle into Transplant clinic daily for labs. Had to have 2 nd ultrasound on the 12 th. Since
then, labs have been improving. Had Thursday off . Monday is a big day for me. I have another
, ultrasound.. and lab work. If things continue to improve on Monday, they will let me return home Monday night and continue 3x per week labs at my local Quest Diagnostic Center.
I have to drink 3+ liters of water a day. So I need to stay near a bathroom since my kidneys are doing their job. I am on 4 mg of Prograf in am and 4 mg at night. They upped my prednisone from 5 mg pre- transplant to 40. Now, I am at 20 mg a day. I take a total 30 pills a day plus 2 liquid drugs.
pm. I told them I had not received any blood products since my earlier aborted call In July so they could use those test results. This time I did not want to tell anyone about call in case it got stopped somewhere in the process. I was taken to OR at 3:30 am. Apparently, I was out of surgery in 5 hours. Spent Wednesday-Thursday evening in IC U. I was off vent when I came to. I passed
pulmonary, and physical therapy evaluation. Was in hospital until Sunday afternoon. Then, transferred to local hotel
where hospital hosts you post transplant. Take shuttle into Transplant clinic daily for labs. Had to have 2 nd ultrasound on the 12 th. Since
then, labs have been improving. Had Thursday off . Monday is a big day for me. I have another
, ultrasound.. and lab work. If things continue to improve on Monday, they will let me return home Monday night and continue 3x per week labs at my local Quest Diagnostic Center.
I have to drink 3+ liters of water a day. So I need to stay near a bathroom since my kidneys are doing their job. I am on 4 mg of Prograf in am and 4 mg at night. They upped my prednisone from 5 mg pre- transplant to 40. Now, I am at 20 mg a day. I take a total 30 pills a day plus 2 liquid drugs.
When I was first diagnosed, spent 11-12 days in hospital, not expected to survive. Doctors wanted to do a transplant, but needed the six months proof of sobriety. By that time things had settled down quite a bit.
I was also put on loads of meds at the time, 18 I believe.
Not playing doctor here, but make sure they taper you off the prednisone. I was at 50 mg., but they had me gradually reduce my dosage over about six months until I stopped. I don't know enough about the transplant procedure, so maybe you'll always be on some prednisone, but it's one of those things your body produces on its own, so if you start taking the med, your body recognizes it has plenty and stops producing it, so it can't be suddenly stopped.
Good luck with things, sounds like you're doing great.
I have been on prednisone sincerely 1990. It is the only drug that kept my enzymes near double normal due to my longtime Cryptogenic Giant cell hepatitis. I had gotten down to 5mg daily before transplant. Hope I can continue to taper down again. Already have cataracts due to long time use. Post transplant I am currently at 20 mg daily.
Its amazing, a miracle. And you are posting! Articulate! I'm so impressed with the advancements since I was on transplant team - oh gosh 15-20 years ago.
I am so, so happy for you!
Shelley
It's perfect!!
Praying for your speedy recovery to good health! Hugs and prayers.............Carol lentz
Back pain is getting less severe so I have not had to take pain pills the last 2 days.
I tire very easily, and have to have an am and pm nap and am in bed by 10 pm. Incision was checked yesterday. Still have to pack where they removed 3 staples with saline saturated gauze.Told it has to heal from inside out. Most of the water weight has come off. My appetite has not returned, so I am grazing rather than eating meals. Trying to get in protein from sources other meat. Meat is not to appealing right now. So it is eggs, Greek yogurt, nuts, and low sodium cheese.
Shelley
Don't really have pain anymore. taking stool softener to help with b/m's. I guess my system was very used to lactulose. main complaint is lack of stamina. I tire rather easily and have to nap in am, afternoon and get at least 8 hours of sleep. ( which is hard when consuming 3+ liters of H2O a day)
Appetite still not returned, but I am maintaining my weight with help of Boost nutrition drink and unsealed nuts. Still in blood glucose study. My glucose has been a little elevated since transplant but nowhere near where they get concerned, so I hope I will graduate from study this coming week... here is hoping....
have been on 6 mg of Prograf in am and pm for last 2 weeks.
Best of luck and lots of prayers
Shelley
Lack of stamina and appetite, along with other adjustments is expected. Just give it some more time. You've been through major surgery, it takes a while to start returning to normal.