This and That and Talk - My Transplant

@davidgenebarnes, I want to welcome you to this discussion. I can assure you that you will find some answers and support from others who share your experience. I can assure you that you are not alone with your thoughts and your fears and also your bodily changes. I want you to feel comfortable in knowing that we care and will be here to walk with you and provide you with support and encouragement.
I am on my way out the door, but I simply could allow myself to delay a reply and welcome to you. I am 8 years post liver/kidney transplant. I will be back online later today, to continue this conversation and try to answer some of your questions.
I look forward to talking with you.
Rosemary

Thank you Rosemary. I look forward to speaking with you.

David,  I think your meld score is what allows you to be prepped and
ranked for a transplant.  I don't know meld scores because I am a
pancreas/potential kidney transplant.  As I understand it, your
greatest speed for a transplant will come with the ability for a partial
transplant and a volunteer donor.  Not knowing your specifics, I
cannot provide any further information.  Please make a list of your
questions and take them along to your appointments.  In my
experience, most of my questions were answered before I could ask
them.  Some even before I thought of them.  I suggest you
prepare for an exhausting and confusing trip.  Make use of the free
wheelchairs in order to make it from place to place more quickly and with
less demands on your already frail body.  Also, get a good water
bottle and plant to use it extensively.  Blessings on your future.

Thank you 2011Panc. From a mental, physical and financial standpoint, I am not sure how long I can hold out. Your reply made my day.
Thanks again.

@hopeful33250 Yes, Teresa, I called them to see if there were any medications that are typically prescribed that would be a problem. There was one. They said if necessary I could take it but to notify them because I would need to my immunosuppressants modified.
JK

@davidgenebarnes Hi David. Welcome to us liver transplant people. I was transplanted on September 23, 2016, so fairly recent. My MELD started at 11, then when they uncovered malignant lesions in my liver it went up to 18, then up to 28. I went to Mass General Hospital in Boston. In the Spring the NP we dealt with most of the time said it would be about a year before I would get a call, It was March 2016 then, At a slightly later appointment she said after the first of the year. The next appointment after that she said November, so we were very surprised when we got the call in September because in Boston it is typically in the 30s. I suspect that my blood type being B helped, what is your blood type?
I fortunately was quite well despite all of this. I was well enough to continue to live a normal life most of the time, except for the instances when I had an episode of HE. Thankfully the medications kept those limited. At one point I went from June through to the following March with no incidents. At that point they put me back on lactulose because they felt the HE had been due to my liver deteriorating further. We thought it might be a collision of things -- being really sick from a difficult ablation, and having then had norovirus. At any rate, I got that highly anticipated call and off to Boston we were. For the last six weeks prior to that I had gotten really sick with extreme ascites (gained about 35 pounds in fluid, felt like I had a barrel around my middle and no shoes except scuff slippers fit on my poor feet -- they looked like water balloons and at one point the water started leaking out through the pores in my feet) and edema. I was in the hospital four times from the end of July up to my transplant, a few days each time due to blood problems. It is typical to get anemic and my numbers were very dangerously low. I don't know if that could have influenced my getting the call, I have been under the assumption that those decisions are made strictly on MELD.
I had a wonderful recovery after the first couple of weeks. It is major surgery of course so there is discomfort at the beginning of the recovery stage.
I spoke to them at Mayo because Boston does generally require a pretty high MELD and Mayo thought they could probably put me up there at 28. I was preparing to double list when the call came.
24 is getting to where you will be a strong consideration for a transplant, and I suspect that Mayo in Arizona even be able to do them at a lower MELD. I don't think there is a bad number for transplant.
I know how tough the wait is, and how easy it is to get depressed but the more active you are the more able you are to not dwell on it. Of course if you are really feeling miserable and cannot be active then I know it is more difficult to be active. I was there for those last 6 weeks. I made a very conscious to not say "WHY ME?". For me, I feel that are many people much better than I am who have worse problems than I did. Notice DID? You will get there too.
Please feel free to inquire on these boards or to private message me. I am very happy to give anyone help who needs it.
JK

@2011panc Hi, actually the greatest chance is with a cadaver. Those are usually transplanted fully. They thought that the liver I was getting might be split between me and another candidate but apparently that other person turned out to not be a good match.
JK

JK, thank you for your reply! I am not sure of my blood type, but I know it is very common. From what I am told, I don't have HepC. I work in Phoenix where I was diagnosed, but my Wife and I have a home in Northern California. I decided to stay here because of needed insurance and money. She will be flying out on Sunday to help me with the classes and future caregiver needs. Being out here alone only made my depression worse, that in turn made me less likely to get exercise. When when my bile backed up and I would call her and give her a ton of negative thoughts, offering her a divorce so she wouldn't have to deal with me. I wish I could be more active, right now I can only stand or walk for about 3/4 minutes at a time.
Thanks again

I was 3X now I am a regular X. But at 6'4" and 253, that is very low for me.

Hi, @davebarnes, I see that you are already meeting some of our other transplant people. We really do work together here to share and to support each other! You are already among friends.

After my transplant, I wanted to resume active participation in my church community, and also to avoid being around too many people germs, so I took on the task of volunteering at our church office; it continues even today!

With your evaluation approaching, I can say, "I know how anxious you must be". I am going to assume that you already have, or will have upon arrival, some sort of itinerary which will let you know what sort of tests that you will be going through. I want you to find some comfort in knowing that you will receive the utmost respect and be treated by caring individuals throughout the entire process. I was fearful of some of the procedures, but they are very good at what they do and will answer your questions and explain the process to you . Remember to ask questions if you are concerned or uneasy about something. One thing that I learned is that the person who performs the procedure or imaging is not going to give you the results, that is for the specialists to do. As @2011panc hinted, you will be exhausted and will sleep well at night.

The MELD score is a statistical score that may go up or down. Many people will have the score assessed numerous times while on the
waiting list. I think it is to prioritize adult patients for liver transplants by United Network for Organ Sharing (UNOS) to ensure that the donated deceased liver goes to the people in greatest need at that moment. the This is something that someone on your transplant team will be able to explain to you. There is so much more to matching donor organ to patient, too. For myself, I was not at all interested in that number. But my husband did keep up with it.
It is a rough road that you are facing, no doubt about it. But-it is a road with rewards that are well worth every fear and doubt. Please know that you will be encouraged to discuss these mental fears and stresses by your team members. (they know what we are fearing)

Try to begin thinking positive because you are about to be enveloped in the most knowledgeable can caring group of individuals that you can ever imagine. Follow the directions and whatever steps that they suggest.

I see that @contentandwell has already shared some of her pretransplant issues.
I know that I have barely touched on your concerns. What other questions would you like to ask?

Is there someone who will be accompanying you on this visit?
Rosemary