Congratulations!...
3rd call was my charm. Hope the same for you!...
schimbare, When I was waiting for tx, my team monitored me for HCC through MRI's every 4 months, and Alfa feta protein blood tests. It was the MRI that showed my tumor grew over the 2 cm criteria...
WD, My liver enzymes have elevated twice since tx. First time was 6.5 months post tx. when I came down with CMV after they took me off Valcyte in March 2014. I was CMV negative and my donor was...
Carol, Sorry to hear of Mike's recent struggles but glad he was able to weather them all! Be sure to take care of the caretaker, too! Wishing everyone here a Healthy and Happy New Year! Susie...
Yes, I will be working with children but not on a daily basis, lol....
I am pleased to report that I will be returning to work after 7 years of disability due to ESLD, HE, and liver tx. I started looking for work 4 months ago just shy of one year post tx as I am doing...
Potassium citrate is to prevent stones. My potassium was also low so it helps boost my level. I was told to push fluids for the uti's. Cranberry is best but has high calories. so u also do lemonade (...
WD, I had tons of Uti infections pre Tx. I was prone to kidney stones as well. They put me in potassium citrate and u haven't had an episode since 2011. I drink over 3 liters of water a day as...
Zoarie, My tx. center, Northwestern in Chicago, is one of the lead hospitals for Theresphere treatment. My docs wanted me to have it even though my lesion was only 2.1 cm. I had the mapping angiogram...
I walked around my cul de sac for 40 minutes in the am and 40 minutes in the evening. I would go when it was cooler not in the heat of mid day,. My neighbors say they miss seeing me walk my route. I...
Zoarie, I would ask about alternative treatments like chemo embolization and radioembolization (Therespheres) for your tumors, Also, this is a great site for HCC https://www.beatlivertumors.org Susie...
Deb, I went back thru threads as my friend is no longer active on the site. She stated her meld was 16 and that the Coumadin was raising her inr so her docs thought she would be transplanted in 6...
Deb, I know if 2 treatments for a portal vein clot. One is blood thinners like Coumadin. A friend of mine on another support group was treated this way. Her inr went up as did her meld and within 4...
Got my liver on 3rd call. Don't know why first was rejected. I was in ICU due to splenic artery aneurism , and my husband accepted an extended criteria liver. 2nd offer, the liver had plaque in...
Fantastic news!!!...
I had edema in lower calves, ankles and too of feet. Left side always worse. Got worse after tips procedure. Was on 20 mg Lasix and 100 mg spironolactone. Now 9 months post Tx I can finally see ankle...
sounds familiar. the took me off propranolol after my tips. my highest ammonia was over 400. averaged 120-160 with the meds. edema in the ankles and feet. I was put on 100 spironolactone and 20 mg...
My enzymes did not start to go down until I was back on the anti viral medication....
WD, The biopsy was a breeze. it was just the anticipation for the procedure and the waiting for the results that were difficult. They did a percataneous biopsy, numbed the area and gave me an iv...
WD, Asa you might remember I am 9 months post tx. My enzymes spiked up to the 300 level in mid march. I had a biopsy on March 24. I was told it could be rejection, denov auto-immune hepatitis or CMV...
Welcome GWTWfan, I am 9 months post tx. I have not had the raspy or gurgling feeling you mentioned. My enzymes shot up in mid March one month after I was taken off Valcyte. I was exposed to CMV by my...
New update: Alk phos now normal and liver enzymes down to 50-60 range after 3 weeks of 1800mg of Valcyte per day. Doc reduced dosage to 900mg daily today! See him again in two weeks! Feel much...
Update: Liver enzymes are trending back down. Doc thinks I will need increased meds for month or two. feeling better! not as fatigued.... The Miz: it is worse for tx patients that never were exposed...
Biopsy results in. No rejection, thank God! No de novo auto-immune hepatitis, whew! CMV hepatitis-yes. What? http://www.ncbi.nlm.nih.gov/pubmed/12474153 Put be back on Valcyte but doubled dose to...
Saw the Infectious Disease doc. My CMV level was 3000, positive but not super high. He is more concerned that it appears to beattacking my liver. called it CMV hepatitis. Not 100 percent sure yet if...
Welcome to our clubhouse!...
Went yesterday for blood work and biopsy. Got call today that I am positive for CMV infection. (Went off Valcyte Feb. 16) Back on Valcyte as of tonight. Go to see Infectious Disease doc tomorrow....
I was already on the UNOS wait list when my docs determined that I needed the tips to preserve my portal vein. I am almost 8 months post and have not gone back to work. I was disabled in 2008 due to...
I had tips to remove a portal vein clot and restore patency to the vein. it was successful! although I had to have several revisions due to stenosis. MY He got less severe after tips, not the norm....
I am on 3.5 Prograf am and pm and 5 mg prednisone. Have been on prednisone since 1990 cuz it was only thing that would keep enzymes near normal. I got down to 5 mg pre tx. After tx, it went up to 40...
thanks Ann for the google suggestion!...
just some minor fatigue which I have not had since 2 months post....
My liver enzymes have risen steadily the last three weeks. Alk phos was in 80's NOW 166, AST was in 40's now 190, and ALT which was in mid 50's now up to 234. In process of scheduling a biopsy early...
Welcome flowergurl I am sure our moderator Mama Lama will respond real soon. I had very high ammonia over 400 when diagnosed. I was put on lactulose and the Xifaxan. Yes, it was very costly. Does mom...
CMV is like the shingles once you have it you always have it. It remains dormant and then, can strike at any time....
WD, Since I had a tumor that was just turning into HCC, my team does the AFP every 6 months. I have not had any mri's or ct scans since tx. (at least that I am aware of), only ultrasounds. How,s your...
My sincere condolences to you and your family....
most cirrhosis patients don't clot well, they do not like to do surgery unless absolutely necessary. I was bleeding internally so they had no choice. I had emergency surgery and 10 units of blood. I...
Splash, sending you and hubby all the paiyive energy I can... Susie...
WD, I had my tx 8/7/13. I saw hep on Sept. 24, October 23, and January 29. My next appt. is July 9. Have had 3 ultrasound post tx. No MRi's as of yet....
WD, My platelets range from 200-230,000, but I no longer have my spleen. I suffered a splenic artery aneurism last January prior to my tx in August. My spleen ruptured and had to be removed during...
I was under care of gastroenterologist from 1990-2004. Then, I was referred to a Hepatologist. Saw him until 2008 when I was referred to tx center. I was assigned new Hepatologist at that time. Had...
WD, My clot was removed via my tips procedure in 2011 so I do not have it anymore. I am on baby aspirin to prevent future clots post tx. Susie...
Gipper, I do know of one person on another of my online groups that was treated for her portal vein clot with Coumadin, her inr went up and she got transplanted within a matter of months. Her tx...
Larry, I had a portal vein clot which compromised the blood flow in my portal vein. To save the vein. an interventional radiologist did the tips procedure in my liver by placing a shunt. I had to...
I agree with Arneeb, I would put off surgery. I also get kidney stones. Can they give you Tramadol or Hydrocodone for the pain? I was allowed these meds pre-tx. Susie...
Mama Lama, I too suffer from skin rashes! but mine started pre-transplant. I have a good supply of Econozole, clobetasol! and nystatin powder on hand. Pre tx, I developed eczema on my shins, and had...
I was also prescribed zinc sulfate in addition to lactulose and Xifaxan for my HE....