Hi, this is Susan, from a few years ago. I am glad to see this important board is still helping those pre and post transplant. The work never ends. I'll be three years post on Aug 31. I left NYC and...
I am so very happy for both of you! Congratulations! Susan...
What a heartwarming update! Congratulations on your ongoing education. You serve as an example to all of us who aspire to additional academic degrees. Happy New Year Susan...
ML, I hope, hope, hope you are feeling much better. Of course I remember the long process to get Mike's hernias fixed. It was awful. Thanks for the update, and best holiday wishes to you and Mike....
Rubi, thank you so much for your kind response. I hope you are cured and on the road to feeling better. David, you are right - we think the hernia is the ultimate culprit for my pain and malaise. In...
Greetings! David, MamaLama, themiz and all - No worries, I am fine. Actually, the lovely new liver is fine. The hernia continues to make me crazy every single day. The surgeon said he normally does...
Oh dear! I am saddened to hear of your ongoing medical troubles. Being sick sucks! My thoughts and some long online hugs are heading Mike and your way! xoxo Susan...
Oh that is so awful that you had to go through that terrible time pre-transplant. I am so sorry, even though it is in the past and you are a new man now. : ) Has anyone mentioned that liver disease...
Quick update. I felt very ill within 24 hours of getting home from Sinai, so I went to the local hospital on Tuesday night. I just got home today- Sunday. They still have no idea what is causing the...
My thoughts are with you and your loved ones after this terrible loss. My condolences. Susan...
I've been thinking of you both, DDMom and Dennis. Susan...
Thanks Woofer5. That is some story about your father-in-law. I always loved and appreciated my care at Sinai. My current transplant hepatologist gave me his cell number the first time I met him about...
Thanks for your kind words, themiz. I am the Mount Sinai ER - my home away from home. MD wanted me to come in to get to the bottom of what was causing the pain. They now see a blob of "material"...
Thanks, Guys. I spoke to my MD who informed me that the biliary stricture - if I actually have one - is not the cause of my pain. Oh. This had not been communicated to me. I assumed the stricture was...
Hey all, Sorry to be so absent, but the pain in my abdomen has really kept me down. Finally, I had a CT scan yesterday that shows a biliary stricture, so they are now scheduling and MRI MRCP - or...
Themiz, Yes, the hernia is really effecting my ability to do things. As David said, the hernia is a major part of my woes. It pops out all the time - just walking through the house to put stuff away,...
Thank you so much, David. It means so much to hear from those who have been through all this. Perhaps I will actually learn patience through this entire event. Ha! Not likely! I forgot to mention...
My wonderful new liver was installed on August 31 at Ochsner in New Orleans. In two days, I'll be eight weeks post-transplant. In the last week, I've been frustrated at the pace of my recovery. I...
Thanks for all the lovely notes! Saying it is great to be home is an understatement for sure. We got back on late Thursday night, and I thought I would be feeling better faster, so by Saturday, I was...
Have fun at the reunion. I think the older we get the more fun the reunions are. : ) What high school? Was it Bay Shore? I am sorry, I forget. Susan...
Jet Blue- 6pm arrive at JFK at 10pm. Woooooo Hoooooo!...
Paul and I will go see the discharging hepatologist tomorrow at 9am. I hope she says we are free. I think it is time. Heck, if something happens I can get off the plane and go to the hospital if need...
Mama and all, My liver is doing stupendously! Louise (her name) seems extremely happy in her new home inside of me. All of my lab numbers are normal or just a teensy bit over. We love Louise. I take...
Hey All, The umbilical hernia repair has not gone smoothly. We are fairly certain that some areas have herniated again and are filled with fluid. I don't know how long a drain is supposed to stay in...
Mama, and all, So, they decided that the umbilical hernia lump was likely caused by some bowel that pushed its way through a hole that must have popped (?) where they stiched it up when they...
Hi friends, There is one wee problem. They fixed my umbilical hernia with some stiches inside where the hole was, and I was assured that the hole was closed and no intestines or anything would be...
I am sorry you continue to suffer. Susan...
Ziff, you really are a huge asset, and I mean a really huge asset, to all of us here - even those of us with no addiction issues. I always appreciate your posts, and I admire you for fighting and...
Oh geez, I lost the entire first part of this letter. sigh. Maybe someday I will learn how to use a computer. Well, here is the second half. It is my nature to tend to rush - or perhaps more...
Update - cut and pasted from an email I sent. Here is a little secret. A beignet is the same exact thing as a zeppole, or the fried dough one can get at a fair. Now, I love fried dough, so it was all...
Arneeb, thank you for the update. Congrats on plugging away on the abd/phd. Like MamaLama, I missed finishing my second masters by a hair, because things got to crazy in life - liver disease,...
I am so negligent in keeping up my updates to you all,and I apologize. OTOH, I would have gladly kept up with my online writing, except that it takes pretty much all day to take drugs, measure blood...
Pam I am so very sorry for your tragic loss. My thoughts are with you at this time. Susan...
Reading the posts here has been a huge help to Paul. Thank you all so much. I've been touting the value of a good online community for disease or other support for years. The problem is finding a...
David, I remembered that you had mentioned the lack of pain post transplant. So when I got around to realizing the numbness all over my belly, I did not panic, that while pain free is good, numbness...
Hi dear friends! I've only broken into tears a few times at the miracle of having a new liver. Do you ever get over it? I was frustrated at the very beginning of waking up when the nurse asked what...
[Paul] Hi guys n gals! Ochsner uses a pre-printed prednisone taper schedule for liver transplant. Doctor of course can modify. So far Susan's orders match the schedule Day 2: 80mg x2 Day 3: 60mg x2...
Hey all! The operation was started at 6:00am on Sunday, August 31 At 10:00pm on Saturday, August 30 was the original call to accept the back up position, stop eating or drinking, and plan to travel...
Greetings friends! So you have heard the great news. Your responses, as usual, have been emotionally overwhelming. Really... I am at a loss for words. I hope someday, that at least some of us, can...
[Paul]: Susan is off the ventilator, just has an oxygen mask. I got about two words and a big smile from her before she went back to sleep. I am here with her overnight. Thanks everyone for your...
[Paul]: Susan is awake, her numbers are good, doctor wants to remove breathing tube in an hour as she is breathing on her own. Waiting on latest labs and upcoming shift change. If Susan can speak I...
[Paul]: I am with Susan now. Resting peacefully, intubated, and watched over by a pair of angels: Rachel and Michelle the ICU nursing team. So far, everything is in normal range for hours after they...
[Paul]: The operation was a success! I just spoke to the surgeon who said it went well, the new liver is already producing bile, and that perfusion is good. I await the gory mess in ICU now, as Susan...
[Paul posting for Susan]; Third time WAS the charm! In surgery right now. Surgeons felt this liver was a better fit for Susan (morphology-wise) than the primary candidate recipient. We raced in and...
Okey dokey. On Sunday evening, I got the third call to be a back up. Which is fine with me - you gotta be in it to win it! Paul and I will go to Ochsner at around 4:30am, Monday, August 31. There we...
Greetings! cooling our heels at the rental. I am totally stressed out. I am not serene. I feel like crap. Do you hear the phone ringing? I do not hear the phone ringing. AAARRRGGGHHH Perhaps tomorrow...
I am so tired I fall asleep while typing. call 2 to be a back-up was a no-go. The problem that we waited from 11pm until about 10am. They did all the pre=tests except the enema, thank goodness....
Still waiting at 11:30pm eastern. Paul called up to transplant, and they were kind enough to tell him that they were waiting on the results of a biopsy. Maybe in an hour. I am serene. Susan...
Hey guess what? I GOT THE CALL TO BE A BACKUP!!! We are cooling our heels in the lobby, and someone should come tell us something by 9:30-10:00 eastern time. I am calm about the whole thing. If it is...