Are there any other pre-liver transplant caregivers out there?

@jodeej blood types A, B, and AB I have always heard have shorter waits. I presume because we can get type O and our own blood type but O can only get type O. I credit getting my transplant at MELD 28 in the northeast region with being type B. Is A+ really a longer wait than most other types?
JK

@contentandwell I had heard the the more common blood types can have a longer wait than the less common. As of 2016 the median MELD score at transplant in region 7 where Rochester Mayo is located is 31. We are getting closer!

@jodeej I didn’t realize that A is that common but I just looked it up and it is the second most common, next to O. Also I don’t THINK + or - matters. A should still be a benefit over O. In the northeast the typical MELD at transplant is in the low 30s. When I was transplanted in September 2016, the Mayo region was lower and they were confident that I could get a transplant at 28.
You are definitely getting closer. As they told me, have a bag packed and have arrangements for any children and pets in place. I regret greatly that somehow the journal I planned to have with me got misplaced. It was such a blur to me that afterward I really couldn’t remember it all well enough to write down then.
JK

@contentandwell you're right, positive and negative don't matter. We've had a bag packed since he went up to 28 and I've got a list of items to pack last minute that I lay on top of the suitcase. Fingers crossed that we get everything along. If not, there's Walmart. Lol

Kids are grown and out of the house so we we don't have to worry about them. We have friends and neighbors that are "on call" for our dogs until one of the kids picks them up.

At our last visit I said I knew it could be the next day, but then it could be August. The nurse said she didn't think it would be the next day, but she didn't think it would be August either. I take that to mean that it will most likely be this summer sometime. One day when I was talking to God I saw in my mind us getting the call when we were in church and we are in summer clothes. God only knows, do we will just wait and be ready.

Have a great day!
JoDee

@jodeej The NP in hepatology told me it would not be before sometime in November. I had at that point spoken to a person in transplant though and she told me to be ready with a bag, plans for pets, etc. (we have none). So when I went downhill near the end of August I was so miserable thinking how can I be like this until November, then on September 22 the call miraculously came. Hallelujah!

I hadn't showered yet and they told me not to bother, just to get there which I did. I have no idea why she said that, we got there between 2 and 3 and the surgery took place at 12:30 the next morning. Maybe they just want to be sure that the patient doesn't eat anything.

I wonder if they intentionally try to schedule them in the middle of the night because it's such a long time to tie up a surgical suite - 7.5 hours for me. The surgeon stopped by in the afternoon and my husband asked what he was going to do then. He told him he was heading home to get a good nap! That was good news, I didn't want a sleepy surgeon. 😉 Much afterward I discovered that there were 3 transplant surgeons there during my surgery!

I cannot say enough good about the care I had at Mass General. I love that hospital. We are hoping to get our house in order to sell and downsize. At this point I am thinking maybe we should consider moving to MA. As we get older, trips to MGH will get more difficult. We go there tomorrow for a couple of things, not transplanted related. It's about 55 miles but can take as long as 2 hours in mid-day due to traffic.

My best ride to MGH was when I was told to get to my local hospital immediately because my blood numbers were precariously low. We went to the hospital in Manchester and the doctor was obviously was not comfortable with my condition, he said my numbers were so low I could have had a cardiac arrest, so I was sent by ambulance to Boston. I felt fine so the EMT and I just chatted all the way.

I am so glad those days are behind me though. It won't be long for your husband now, and all of this can be history.
JK

@contentandwell I can't imagine that type of traffic! Here our biggest traffic jam is getting behind a tractor or combine. Ha ha Or if there is a big event going on in Omaha. I do understand your wanting to move closer.

I pray that we just get the call when we are there in June for his one year work up. I don't want to worry about driving there in the middle of the night or getting stuck on the interstate if there is an accident it something.

But I better get to work! TTYL
JoDee

@jodeej, @contentandwell
Our situation was completely different. We arrived in Rochester in Feb. and didn't transplant until April. We agreed that although the waiting was longer that we would have liked, We could be happy that we would have our annual evals after the snow. HaHa! The joke is on us because this year we were in Rochester April 15-18th for some or the recent snow!
Keep looking forward!
Rosemary

@jodeej actually we usually get there in about an hour and 15 minutes but we leave that extra time in case of an accident or road work on the way -- those things really cause traffic to back up. If we left during rush hour we would be close to two hours but we always try to get appointments mid-day.

How long a drive is it to Mayo from Nebraska? Actually middle of the night would be a good time to travel!

That would be great if the call did come when you were there but don't hold your breath. That would be a really big coincidence.
JK

@rosemarya your situation really was different and you were so sick.

I say I was really sick in the last six weeks or so but the biggest problem was actually the huge weight gain from fluid retention. My feet were enormous and I felt like I had a barrel around my mid-section. I was smart to have kept some of my pants from before I lost weight or I would have had nothing to wear. I kept them because I knew I would be going on prednisone and that in the past made me gain weight. I had Ugg slip on slippers and that was all I could get on my feet. I actually went to my hairdresser with them on. My being sick then was really the weight gain and that was so extreme that my skin hurt from stretching so much. I will never forget looking at my feet that were up on an ottoman and there was water pouring out of them. UGH.
Rosemary, isn't it great to look back on that and know it is history? Those were tough times. Jodee, it sounds like your husband is quickly approaching that transplant too. He really is a lot like me in being able to continue his life for the most part despite having such a high MELD. I hear of many people with much lower MELDs who are miserably sick.
JK

@contentandwell, My favorite words after my transplant, "I can see my ankles!"