Schimbare's Liver Transplant Journey- Part 3

What wonderful news! In my thoughts and best wishes for smooth sailing from here on.

Barbara

Nice report!! This is remarkable, just what we love to hear. So grateful for your updates, Paul. Thanks again. Big Hugs

Paul/Susan, Gosh, Susan is doing so well, so quickly. Mike was naughty about that vent and caused a fuss. Susan seems to be cooperating. Keep us posted, I'm checking every few hours hoping for an update.

Setbacks are not unusual at this point. David had to go back into surgery to fix something that was leaking. Mike had a big hematoma over the site and they threatened to open him up to fix that and took US every few hours the first two days, but that resolved without a drama.

Some are out of the hospital in a few days. Mike was in ICU 5 days and then a regular room for 2 days, then home. We had to go back twice a week for labs for a while and stayed close to the hospital until the labs were not so often, and he didn't feel like crap. They wanted us to go to THE hospital lab, evidently everywhere else isn't good enough??? We were 2 hours a way and a big trafficy ride (think LI to Mt Sinai is a bit worse, but not much).

How is today going.

Hugs,

ML

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 meet IRL.
I am very loopy, and so it is pretty darn funny, because I often do not know what I am saying. I don't know if Paul realized the extent to which the HE affected me. But he does now! The nurses and technical medical staff are just so amazing. It is a shame that I have to ask them their names over and over again. I am truly blessed for a woman who doesn't believe too much in blessings. I will write more tomorrow. Isn't Paul the best? Love you all, Susan

It's great to see your post! I am so happy for you, Susan.

Hearing that someone is transplanted and on the road to recovery,...That never gets old.

Rest and heal. Paul was great to keep us updated. You know themister and I will be watching for your post-transplant updates ;) Big Hugs

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 to the hospital to get there by 5:30

We then got another call at 4:00 to get to the hospital asap. we arrived at the hospital at 5:00 and they did not even have time for the dreaded enema. They raced me in and gave anesthesia, then put in breathing tube and began cutting and they were done and had me stapled up and gently put some dissolving stitches in a total of 6 hours. They left me on the breathing tube for another 18 hours, but I just slept the entire time with some heavy duty pain meds during those hours

They slid the breathing tube out, after the 18, and maybe they gave me some pain meds, but then they said I could take 5mg of oxycodone once every five hours for pain. I have had no pain, but I am uncomfortable.
My typing abilities are ridiculously slow and typo filled, so I must type and fix errors, then fix everything, which is very annoying and grossly time consuming.

So far since last night the third of Sept, I took one 5mg oxycodone, at 11:00. Today, Sept 4, I took one tablet at 12:30am and another 5mg tablet at 5:30am and I am still too uncomfortable to fall asleep. so that sucks. I've given up the idea of sleeping, I just would like to be relaxed an calm and at least get a little nice rest I've given up on sleep. I am just going to focus on calm and relaxation and forget about actual sleep. it is now 7:18am and no sleep is to had, and I don't expect any time soon.
I will discuss more pain meds or some sleeping meds I can take when the physician rounds in the morning in a few hours probably. ttYl

It's amazing you don't have more pain. I have heard the pain is not that bad for such a surgery! I love the update and very happy this went so well. You will be back to your rental before you know it! Big Hugs

They generally give yiu giant doses of steroids at first to encourage healing. Sleeping is optional on the evil prednisone. They will wean you soon. But in weeks, not days. Those little healing cells are busy at work.

I couldn't taste food for the first month. Glad she's getting ambien. Sounds like things are going well.

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 the day was. I had no clue.

At some point she asks who the president is. Think, think, think. I mean, I LOVE that guy!! Think...
I finally say "the black guy"! I'm like - Paul, it is the black guy, right?

So they ask what his name is and I cleverly respond that his name begins with an O. Oy vey, I am thinking.

So quickly, Paul chimes in with, "where was he born?", and without missing a beat I say, "Kenya!" And we both cracked up. Now I have to apologize to the President! LOL

Oh my! What a ride this has been so far.

xoxo

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 forever is not what I was hoping for.

Then I recalled the weird taste sensations that so many here have mentioned. Ugh, I think right up before transplant, my taste buds had given up. I am sorry, I forgot where I read it, but someone had mentioned that lack of good mouth taste was something they learned to live with. Well, I don't know about you'all, but there were a few bad years in my adult life in which all I had to rely on were some good tasting foods to give me the motivation to keep going. LOL

The point is that the tastes seem to be returning.

Lots of ice cream worked for me. Not much taste, but did it feel good going down.

A week post transplant, I felt weird, as if I ought to feel more, because I didn't...

I spoke to the transplant social worker. She told me that many people felt that way, then offered me a piece of candy. That was all I needed. Someone had to let me know that it was all right not feel as if I was someone who was different than before.

I do suggest writing a letter to the donor family. Even though mine have never taken delivery of it, it's the right thing to do. I know some people that have connected with the donor family and are now part of it. Not sure if I'd want that, but who's to say.

You stay well and keep up the good work. It won't be long and the tough times leading up to this will soon be a distant memory.

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 sugar, shoot insulin, make sure I keep up with my pain meds, eat, nap, take more drugs, measure blood sugar, shot insulin, oh I forgot take blood pressure, temperature, pulse, eat, nap, take a walk on Magazine Street on my scooter, which then developed a high piched, highly annoying squeal.

Go to bike shop, the guy is not in, must go back tomorrow. Get a latte from every single coffee shop in town - that would be like 20,000 coffee shops, and none of them a Dunkin Donuts. I could get starbucks, but really, in new orleans, starbucks is just not cool enough. I can only imagine what it is like in Seattle and Portland with the coffee culture, because independent coffee shoppes filled with students siting at tables with their laptops are EVERYWHERE.

Go home, dab staples with betadine, check blood sugar again, then go to target to buy clocks. There is not a clock in this house. We literally went and bought some wall clocks. I was going crazy not knowing what time it was, after being incarcerated - I mean hospitalized and now knowing what day it was or what time it was. Trauma.

In any event, the liver is very happy. My bili, ast and alt go down at every blood draw. My platelets are up to 175,000. From about 30,000 pre-transplant. Amazing.

Really, medically, everything is going swimmingly.

I am still very achey in my entire waistline area. That is really quite painful and bothersome, though it is better every day.

Water retention. I had no idea it would be like this. My feet up to my waist have an enormous amount of fluid - much more than pre-transplant. It is not a good thing. I feel like if I could get rid of the fluid I would be on my way out of town, but the fact is that is just going to take its sweet time moving out of my system, despite 20mg of lasix a day. (pre-transplant, I was on 160mg per day of lasix. crazy.)

They say it is normal, yada yada, but it is not a good feeling. Evidently, once one thing stops hurting, I move immediately towards getting rid of the next thing. I worry that they (the medical staff) will think I am too pushy. OTOH, they also know I do exactly what they tell me to when they tell me to do it.

I've got alarms, four different charts, Paul the incredible memory man, and now Susan, the newly obsessive/compulsive, to keep to the schedule and not screw up in one tiny bit. It is hard. Especially with the blood sugar/insulin stuff. We still don't really get it, but we just follow the rules on testing blood sugar and taking appropriate amounts of insulin.

So, I take 4 little prografs, 4 big cellcepts, 15mg prednisone, and about 8 other things - antibiotics, anti fungal, anti viral, blood pressure med, lasix, and some other things - who knows what they are....(just kidding)

Love you all!!

Doing great here on 1366 Constance Street (google street view!!)

xoxo