Thanks ML, this has been a shock to us including the way we were told about it, the PA basically laughed about it when she told me. I was so offended!!! Glad to hear everything is going well for you...
They started him on Baraclude. I have to meet with our family doctor who is a joke and explain the situation to him so I can get tested. Obviously I have the greatest risk but the kids are at risk...
In 2012 my husband received a liver transplant. We we're told the liver had been exposed to Hep B but had never had an infection. He was on Epivir post tx but was taken off because the doctors felt...
It has been 1 year since John received his new liver. Things have been good but it was a tough road, he was so sick before he got his new liver. I just wanted to let everyone know he is doing good....
OK, I have a question, how long should a transplant pt wait to return to work? My husband was given a full release to go back to work, he had his transplant in July 2012. Unfortunately, he has to...
I have been thinking of you both today!! I knew you would be in Pittsburgh. It is hard to believe that it has been a year since his transplant. Hope you received good news and have a safe trip home,...
I am in the process of planning a party for him. We both want to do something since we were both in Pittsburgh when the benefit took place. Every time he sees friends, they dont recognize him since...
Happy New Year everyone!! Now that the holidays are behind us, we are looking forward to John's 6-month follow-up in Pittsburgh. His health continues to be good, such a change from last year at this...
Just a quick follow-up, we got the results from the MRCP, all bile ducts are blockage free, hopefully the elevated numbers keep coming down....
It is hard to believe that it has been 3 months since John had his surgery!! On Thursday we were in Pittsburgh for a follow-up and a MRCP(MRI of his bile ducts). His GGTp and alk phos had been...
No, no hep C, last week his ggt was at 1325, it has slowly been going up, the other is just above normal also. We are a little worried but the transplant coordinator said not to be too worried. Amy...
Thanks everyone, all of your points were my thoughts too!! It has been such a long year and I really feel I need to spend time with the girls, they were through so.... much!!! I also have a question,...
I am wondering when any caregivers have returned to work after the transplants. My employer is starting to pressure me into coming back to work. My employer does not provide our benefits and it is a...
On Monday, John had the stent removed from the bile duct. The duct is working and no other stent was needed. The trip to Pittsburgh was long but we dont have to go back til October 1st. Thank...
Well clinic appt last week went good, John's 3 spots are healing well, surgeon is very pleased with the progress. Most of the blood work is looking good. Doc is a little concerned with the gGTP labs....
Congratulations!!! Hope all is going well!! The recovery is definitely an up hill battle but well worth the fight! I agree with everyone else, get your rest, you are going to need it. John got his...
2nd clinic visit today, wounds are healing nicely, surgeon very pleased!!! We dont have to go back for 2 weeks now!!!!!!!!!!!!!!!!!!!!!!! YAY!!!!!!!!!!!!! He told us keep up doing what we have been...
Just an update, we finally made it HOME! After meeting with the surgeon on Monday of last week, we were told that we could make the 2.5 hour trip home!! So on Tuesday morning we packed up and headed...
JL, My husband was diagnosised in February with Hemochromatosis! We found out about this when he was going thru testing for a liver transplant. When they do the testing they also run genetic test and...
Charlie, We are so sorry to hear of Janie's passing. You both have fought so hard through all of this! You and your family remain in our prayers during this difficult time. Amy & John...
Charlie, Thoughts and prayers sent to you and Janie from Pittsburgh. Amy...
Yesterday John was discharged from the hospital. He was a resident at UPMC for 1 month!!! So glad to be out, now we have a lot of work to do. He is still very weak and walking with a walker. The...
Thoughts and Prayers to both of you!!!...
No, no infections anywhere, he has been cultured almost on a daily basis due to this recurring fever that he gets every evening. We were told about dapsone today. Thanks everyone Amy...
Thanks Danelle, We are hoping that we do not have to do that again! He already told the team that they need to find something else for him! Glad we are not the only ones who have had such a bad...
Charlie, You both also have our thoughts and prayers!! Amy...
Thanks Connie, on the paper they gave us they have an "x" in it, sorry. So far we are dealing with the side effects, he has not been able to stop coughing, sometimes so bad he throws up. He continues...
Ok, finally talked to the TEAM. They are taking him of baxtrim and trying Pentamidine. It is a once a month antibiotic treatment to fight possible pneumonia and lung infections. The PA stated that it...
I am! The worst part is we dont know anything about this other than no one can be in the room when he is getting this treatment. If its toxic to us, what does it do to him. Amy...
We just had respiratory come & say that they will be doing a breathing treatment later that is one that is done on a monthly basis. They also said that it is highly toxic. They stated its always...
Carol, he is on antibiotics, antivirals and antifungals, they are taking him off the last iv antibiotic today because they feel that may be the cause, just not sure yet. They have sent the PICC line...
Still here, everyday about the same time, John develops a fever. They cant seem to figure out where it is coming from. At first they thought it was pneumonia, now they think it may be the pleural...
Dajalyn, Glad things are looking a little better!!!! My husband had his transplant on 7/15, he too lost buckets of blood and his surgery took 16 hours. But on a good note, he is doing better and we...
Just an update, We are still in the hospital. John has been getting a fever every evening around the same time. Not real high but high enough to call the docs. They have done blood cultures on top of...
The visit with the girls was great!!!!! We were all so happy to be together, the first time since the 14th. They brought cake, specially made for her b-day and a get well cake for John. It was so...
David, he had it for about a week also, then off.... On his initial med list it was there but there was a line thru it and he does not take any, I have been checking his meds every time he gets them....
Connie, when they took out the line in the femoral artery, it bled into his thigh. His thigh was huge and very black and blue. At first they were not sure if it was just a hematoma or if it was...
They want him up but he also has to take it slow due to the incision in his groin because of the hematoma. The drain that he has left is in the thigh, from that groin incision. It does appear that...
Well John was moved to a regular room monday morning!! He is still doing good, all liver function test are improving daily. Doctors are still pleased with his progress. He did develop a fever on...
Just an update, he came out of surgery and is doing great! He had the breathinh tube taken out yesterday around lunch time. Surgeons are very pleased with the way he bounced back. His kidneys have...
Well set back #1, he is re-intubated, they took out the line that was in his femoral artery and it would not stop bleeding. When the bleeding finally stopped, he had a huge bruise that was hard and...
Yes David he did have HE, whatever reason it is, i'm just glad he is happy! He hasnt been happy for a long time!!!!! Amy...
He is off the vent & the tube is out!!! Doing good still!! I think the biggest thing is that he is in really good spirits!!!...
I did finally get some much needed sleep last night!!! John was fighting the tube some & a little agitated so they have him a little more sedated, but they also wanted him to sleep last night so it...
Oh we know, but the big thing for today is that he made it out of surgery!!! We both know that the uphill battle now is going to be just as hard and trying as the downhill slide was!!! Hopefully we...
He came out of surgery at 630 am. Everything looks good so far! When they started, they found a large amount of infection. They cleaned everything out and hopefully either diluted it enough or got it...
He's at that point right now! Hoping to hear something soon. Thanks David...
He is still in the OR, he has had lots of bleeding due to the high INR, doc was out at 1230 & said hope to b done in 4-6 hours....
Its a GO!!!!!!!!!! He is in surgery now!!...
Got the call been in pittsburgh since 10pm last nite. Donor in OR now!!! I will update later!!! Hope 3rd times the charm!...