COTA For Donald's Liver

06/01/2024

Today, Donald and I are reminiscing and remembering. We are up here at University Hospital and since we had time, we visited the 4th floor and the transplant ICU where we spent so much precious time last fall…where he received his new life!! He remembered a few things but not everything. We went down to the ground floor to the surgery hallway where we walked to the night of his surgery. We went by the T**A clinic where we first waited all night to get the all clear for his new liver. Man. In a way, last fall feels so much like a dream to me!

It has been a very long time since I have posted an update on this page! The few months immediately after Donald’s transplant were certainly a whirlwind! Recovery consisted mostly of wound care and resting, intertwined with the holidays. The spring months have brought us mostly back to normal since pre-transplant life. Although Tuesday’s check up with Dr. Holden was a quick reminder that transplant means a “new” normal for the rest of our lives. Let me explain. Donald remains on a weekly lab routine. The past few weeks his liver enzymes have been elevated. So, his doctor scheduled him for an MRCP to take a close look at his bile duct and vessels to check for narrowing. IF they see anything narrowed he will have an ERCP procedure to stretch (or potentially stent) the vessels. If things look fine today (meaning nothing looks narrowed) the next step will be a liver biopsy. A biopsy will look for cellular rejection. We really hate that word. BUT, his doctor is always so good to remind us and reassure us that while that is the worst word in the world to us, it simply means inflammation in his liver that can be treated with adjusting medication. So, we continue to chug along day by day. He’s really doing so great!!! He is 7 months post transplant and is back to work!!! Amazing! I think there was a post I wrote at some point during the last two years when I referred to him as Superman. That description still holds true for me. And even though we are here for yet another procedure, I think I can safely speak for BOTH of us when I say that we are thankful to have this day to walk these halls TOGETHER and be able to remember where we once were and where we are today thanks to God carrying and bringing us here! And all along the whole way, so many friends and family that loved us and prayed for us the whole time. This transplant is a true journey of a lifetime! It’s an unforgettable and unimaginable experience that you just can’t ever explain quite right in words. Just grateful. So very grateful. 🤍

11/19/2023

Transplant life…💊💊💊

11/13/2023

Today is our first SOPA clinic day. We arrived here 7am for blood work. Then checked in at the clinic for vitals. Then, we had “free” time to eat breakfast and sit before reporting back to clinic by 9am to see the transplant doctor and medical coordinator. This will be our every Monday routine until further notice. We could be out by noon, here all day, OR even be admitted to spend the night depending on his lab results and what they need to do with his medications to fine tune everything. This is all so new. Please pray for good lab results and a smooth day for him. Long days in Indy are so tiresome, but we sure are thankful to have a day every single week that we can see the doctors and coordinator! They keep a super close watch on everything and that is very comforting!!! 🤍

11/11/2023

WE MADE IT HOME!!!! 🏡
This photo was taken earlier today when we were waiting on his potassium drip to finish up. Can you tell I was excited to leave Indianapolis? 😂
On Monday we will go to our first SOPA Clinic appointment where he will have labs drawn followed by medication adjustments until Donald’s labs are completely in check. We will do this every week for the foreseeable future at University. Then on Thursdays he will have a second round of labs.
We welcome and appreciate your continued prayers for us as we navigate this new journey!

11/09/2023

Update for Thursday 11/9:
(TRIGGER WARNING…graphic photo included in this post!)
We have encountered our first bit of hiccups. Donald was able to get one OT session in at RHI. On my way up this morning he called and said they were bringing him back over to Uni. The wound nurses were concerned about the lower end of his incision. Before placing a wound vac, his doctors needed to look at it and ok the wound vac placement. They brought him back over to University where they did a quick wound debridement. After popping a couple staples and pulling out the hematoma there was a piece of a clot pressing against a vessel. As soon as the clot was removed blood started squirting EVERYWHERE!! He was in ZERO pain the entire time and watched them debreed his incision!! 🤮 Long story short, he is once again admitted and he will be going to the OR to fix the vessel as soon as the anesthesiologist gives the ok for surgery.
Another update regarding his new liver. Yesterday’s liver biopsy shows rejection. Cellular rejection is the most common or “typical” rejection. They gave him IV steroids before going to RHI for rehab. His numbers went down. Today’s labs show his numbers are back up again. They will redo labs again tomorrow. If they are the same or slightly higher they will repeat labs on Monday. IF his numbers were to increase A LOT (like double) they will give him a really stout anti-rejection medication (thyroglobulin) which is given by infusion (6 hr). What this means is that Donald has a REALLY STRONG immune system (which of course some people have). This is GREAT for recovering and healing and those things…BUT, we need his immune system to chill out and let his new liver be! All is well. These are humps and bumps that we expect to experience along this road.
Please pray for a quick, smooth OR procedure. And also pray for his body and immune system. As my good friend (also rockstar transplant professional) put it…we gotta get the balance of “heals well but doesn’t kill new organ” down! Slow and steady. We are getting there! 🤍

11/08/2023

Leaving the hospital and off to a rehabilitation facility to prepare to come HOME!!! 🙌

11/08/2023

Work today and then headed to the hospital to visit for the evening. Evan enjoyed hearing all of his dad’s stories while he was out if his mind! 😂 Tomorrow Donald will be discharged to a rehab facility where he will stay for about a week and then it will be time to come HOME! 🙌🏻

11/06/2023

Update 11/6 (Monday):
When I got home last night I sat down to post an update but my eyelids had other plans 💤
Donald continues to improve little by little each day. They are watching labs very very closely multiple times a day and making necessary adjustments to his anti-rejection meds. Information is becoming tedious to keep up with for me so details will be small. The surgeons rounding this morning said that 4 of the 6 labs are good, 2 are not. One regarding his bilirubin, which was high so they took him down for an Endo this morning to take a look at the bile duct where his new liver attaches to. It was narrow so they dilated it and will continue to see how it does. He said he is feeling good. He remembers a lot more of these last few hellish days with the delirium and being restrained than I had hoped he would. But he is back to himself and said its amazing how much better he feels! Praising God for getting him through the roughest time of his life and looking forward to his continued healing and progress!! 🙌🏻

11/03/2023

Friday 11/3 Update:
Donald has had a GIANT DAY today!!! PT, OT. Neither remotely easy to do since he is still so delirious, BUT progress nonetheless!! We have definitely turned a big corner with the delirium!! Still a ways to go, but BIG strides in the right direction!! He was moved to an all liquid diet again after taking a step back to NPO yesterday (due to the extreme delirium). Small, but MASSIVE steps in the right direction!! I fed him ice chips and ice water all afternoon. And then got him some cherry ice, which he loved! Just can’t overdo it. He is officially over the biggest humps from his transplant surgery. Now we focus on building his strength and as well as his continued healing! Our new motto is “slow and steady”!! 🤍
Thank you Rick Morgan for coming and visiting with us this afternoon!! ☺️

11/02/2023

Hi everyone! It’s Trina! I thought I would hop on here and give you the update for today (Thursday, 11/2):
Nothing much to update. All things continue to progress well and Donald remains very stable. They placed a feeding tube yesterday to start pushing some nourishment in him, since he is still battling through delirium, he can’t eat or drink (even though he “can”). The delirium is due to lack of sleep (which sounds odd to say) but, the way they described it to me is that, even though he is laying in a hospital bed appearing as though he is resting and sleeping… It’s his brain not getting the actual rest and sleep. That, combined with some thing called metabolic acidosis is creating the delirium. That is a buildup of acidity in his blood that is coming from the liver and kidney failure. Clearly when things stop working, things build up and creates some havoc. He was removed from dialysis yesterday as his kidneys were producing urine… So they are beginning again. As he begins urinating more, that will help to flush toxins out. The delirium has honestly been the toughest part for me. I mean going into this you know there is going to be a big surgery and an even bigger recovery process which is scary in itself, but you are able to wrap your head around all that as it happens. But this delirium part…even though they said it can happen (multiple times) you just can’t prepare for the magnitude of it when you see it. I’ve cried more tears over the last couple days with that, than I have this entire transplant time. It will subside with time. Until then we just have to bear down and wait it out. I went to the hospital early this morning to check in and be there when the doctors did their rounding. Aside from the temporary delirium, ALL is well and for that I am thankful! 🤍🙌🏻

11/01/2023

First night home from Indy and I’m listening to this song over and over. Definitely making me think of him! If you could listen to this song and raise your hands in praise for Donald’s complete healing, it would mean the world!
Thank you all for the continued prayers for Donald, myself, our children and his family! 🤍

“Just ask the stone that was rolled at the tomb in the garden what happens when God says MOVE!” 🙌🏻🙌🏻

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11/01/2023

Morning update 11/1:

We are in a bit of a dip. An expected one, but definitely a dip. He has hit a pretty big point of ICU delirium. Liver enzymes are high…but they are trending down
Ammonia is on the high side but not “crazy” high. We are at the Threshold of a high point with everything but labs moving the right way. He pulled some lines out last night so they have placed mitts on his hands so he can’t grab at things. Hard to see him in this state, but it’s a piece of the road we have to go through to see the other side. The mitts are for his safety and I know they are working diligently to get him through this part. Please continue to pray for his lucidness and that enzymes continue to come down. We will get there!! 🙏🏻