Bart’s Transplant Journey

Bart’s Transplant Journey You only get one life live, but experience all the journeys in that life while you have the chance.

08/11/2025

Well we survived our weekend and had a nice time. Now it’s time to get back to reality.
It has been a busy couple weeks, with lots to update but I’ll make it quick (hopefully).

Way back in April when Bart was in the hospital, they told him he may have fluid around his liver and to go to a GI. Well, he finally got an appointment and he found out that he was diagnosed as having a fatty liver in 2019. We had no idea about that. They also believe he has cirrhosis but will need to do further tests as to the extent of that. He is scheduled for an Ultrasound soon and will need to get a Fibroscan done (it will be kinda like vibrations going through his liver since he can’t have a regular CT.)

We also got the call that he needs to go Mayo for his annual assessment for the transplant list. We go there mid October. He is supposed to be going to Anschutz next month to get re-assessed there as well, but we haven’t heard when yet.

Then we go back to his kidneys. He has to really watch his fluid intake as he is not producing urine as he used to and his dialysis was changed to 4 hours and 15 minutes each session, still 3 days a week.

He still has a rough road ahead of him and he is trying to keep his spirits up but I know he struggles with it often. Medicare covers most of his medical costs but not all. Travel is one of the biggest expenses we have, with having to gas up 3 times a week. Add in copays and medication and overnight stays and it adds up.

We appreciate all the thoughts, prayers and well wishes that are sent to him either on here or to me at work, they are all very good to hear. If anyone wishes to also donate to help with his medical costs, it would be greatly appreciated.

We will update again when we hear any more or after his next test. Thank you for getting this far and please know that we are grateful for all of you that have followed and joined us in this journey. We hope that you have a blessed week.

08/09/2025

We haven’t posted in a little bit so here’s a quick update. We went to the GI doctor, found out he was diagnosed with fatty liver in 2019 but we were never told. Nice. He has to have some further tests to see if he has cirrhosis of the liver. Guy can’t catch a break, I swear.
So, we are taking this weekend off. We haven’t had an away time in a very long time and we are going to just enjoy each other. We are taking a break from everything and will post the latest updates on Monday.
Have a great weekend, everyone!

07/18/2025

We went on Tuesday to meet with a specialist at the dialysis center to discuss Bart going on Peritoneal Dialysis (PD) which is basically home dialysis; you do it yourself. We learned tons of information, Lynn was great and answered our questions but after a half hour, we decided this would not work for Bart and our situation.
For home dialysis, you have to first have a surgery to hsvevtye tubing placed in your peritoneal cavity and have it come out of your lower andomen. This is where everything goes in and out of. For PD you have to do what is called transactions, 4 times a day, 7 days a week. You use a glucose fluid that goes in and essentially the toxins stick to the glucose and they drain back out. The glucose has calories in it, so if you are on a certain calorie intake, you have to count those as well.
The fluids also cause constipation and he has enough problems with that already. You also need to have a sterile room where you can do your treatments. We have 3 dogs. Nothing is very sterile here.
While these are all concerns we have, it came down to Bart would not be able to do this on his own. His hands and fingers do not work right, he would not be able to manipulate the small tubing and connectors used and I have to work and cannot be home every day.
So, the next atep is increasing his chair time at the center. He is currently going for 3 hours 35 minutes and will increase it to 4 hours 15 minutes. We aren’t sure when that will start, but hopefully soon as his kidney function is only at about 56%. His doctor thinks increasing the time will help improve somewhat but he really needs a new kidney.
His spirits are low as none of this was good news but he is going to keep plugging along and going to Rapid 3 days a week.
On top of that we went to Rapid again today and he got to get a shot in his eye. At least he goes for about 5 weeks before he gets another one.
If you got this far, thanks for sticking to the end. Bart and I appreciate all the thoughts and prayers we have gotten. Thank you for following along on this journey with us.

07/15/2025

We are leaving for Rapid. We are meeting with the lady that oversees the at home dialysis. Bart isn’t getting enough clearance, which means the toxins aren’t getting cleaned as much as they should. Last month his clearance was like 65%, this month it’s at 59%, and they want it at 70 or above.
So his two options are either go longer, making his chair time 4 hours 15 minutes or try doing it at home, which would be 2 hours every day. So we are going to talk to the lady and get some information before he makes his decision.

07/08/2025

Shunt-o-gram went fine, no blockages. Bart will see his nephrologist tomorrow to see what is next.

07/08/2025

We are headed to Rapid today, Bart is getting a shunt-o-gram in his fistula. It’s kind of like an angiogram where they will insert a balloon in the fistula and clear it up to make sure there aren’t any blockages. His doctor doesn’t think he is getting very good clearance and wanted it done. Will update later.

07/02/2025

Today was shot-in-the-eye day. Every six weeks or so for the left eye and every 7-8 weeks for the right eye, we get to go see Dr.Slingsby so Bart can have an injection. In his eye. Ewww. (I don’t watch, I’m in the corner of the room watching the floor for “support”). So his bedtime was about 7:30pm tonight because as you can imagine, he says it hurts. Bart has been getting injections for the past 10 years or so and has had well over 70 of them. As well as multiple laser treatments for each eye. He has what is called diabetic macular edema, where the pressure in his eyes causes “leaking” and fluid build up. Elevated blood pressure can also cause complications While it has gotten a bit better, this is something he will have for life. The medicine in the shots help keep the leakage to a minimum, but unfortunately don’t last for very long. He is a trooper, that’s for sure. He said getting the shots are worth keeping his eyesight.

05/03/2025

Bart is finally home and resting. They took off a total of nearly 7 liters of fluids in three days. The is feeling better and is not as winded. We don’t know any more about his liver as the tests take a few days to come back. But he is happily sleeping in his own bed.

05/01/2025

Today was another long day. Still don’t know what’s going on with the liver, but the doctor said that they were going to start with some blood tests tomorrow to see if they can get some answers and it may lead to a biopsy a little down the road.
They took off 2.5 liters of fluid at dialysis (which is quite a bit) and he still looks swollen, although a bit less. They are doing another session of dialysis in the morning to see if they can get more off. He will probably be in the hospital a few more days, but they need to focus on getting the excess fluid out of him, so we will see.
Bart does see the comments and appreciates all of them, he just doesn’t have the strength right now to reply. He is in generally good spirits, just wants to stop hurting and start feeling better.
We will see what tomorrow brings.

04/30/2025

Another day has come and gone. We are no closer to any answers. Bart is slated for dialysis first thing tomorrow morning and they will go from there. They have not addressed anything with his liver but we are to see the doctor around 7 am. So we will ask our questions then. So I will update tomorrow.

04/29/2025

We haven’t posted in a while and since we are in the ER, it seemed like a good time.
Bart has not been feeling his best self for the last month or so. He is having some issues with his stomach so we decided it was time to get it checked out. Blood works looks kind of normal (for him) but he has fluid built up in his abdomen and a bulge in his intestines and his liver is looking a bit enlarged. The fluid is causing him to be shortness of breath and some pain We are waiting to see what they are going to do and if they are sending us to Rapid (which it sounds like) or what is going on.
Will update when we have more information.
Please keep Bart in your thoughts and prayers.

The struggle is real!
10/25/2024

The struggle is real!

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