Dialysis

The time has come for Jake to start dialysis. It sucks, but we are grateful that the treatment is available.

A short time ago, we found out that Jake's kidney function had dropped from 17 percent in October to 10 percent the first week of January. A 7 percent drop in three months is not good. And since 15 percent is when they start the dialysis, the doctors wanted to get things moving quickly.

Yesterday, we met with a nurse practitioner who showed Jake his dialysis options. Jake, the nurse and doctors have decided that peritoneal dialysis (PD) is the best choice.

In PD, a catheter is inserted through the wall of the abdomen into the peritoneal cavity. Solution flows in and out of the cavity through the catheter, which must be inserted by a surgeon during an outpatient procedure.

PD cleans the blood and removes extra fluids using the body's own membranes as a filter. The peritoneum, or abdominal cavity, contains the stomach, spleen, liver and intestines.

PD solution is places in the peritoneum. The membrane filters waste and fluids from the blood into the solution. After several hours, the solution is drained from the cavity and is replaced with fresh solution.

It sounds a bit complicated, but it's pretty simple and can be done at home. Jake will be able to keep working, either changing the solution every couple hours or with the use of a machine at night while sleeping. That decision will be made when he actually begins treatment.

We met with the surgeon today, and Jake will have the catheter inserted on Monday. About three weeks after that, they will start dialysis treatments. During those three weeks, nurses will flush his catheter to make sure no bacteria forms, and we will get training on how to administer PD.

Also, Jake is still not on the transplant list. Apparently his paperwork got sent to the wrong department, but it's now been tracked down and he should hear something in the next few days.

Photo of the day

Getting closer

Jake's one step closer to getting his transplant. Yesterday, the hospital called to let him know that the transplant team had accepted him as a patient and would recommend him for the UNOS transplant list. But, the insurance company has to approve it first, and who knows how long that will take. We are, however, very excited that the hospital approved him and things are really starting to move forward.

This is one of my favorite pics of Jake. He's holding our cousin Rachel.

Home

We're home! Yay! The drive from Salt Lake to Phoenix isn't one that I recommend you make on a regular basis. Especially since there seems to be a speed trap about 75 miles outside of Phoenix. We passed four cops in 20 minutes, and the last one pulled me over. I was going about 5 miles over the limit. He gave me a warning though. I don't know if that was because I really looked cute in pigtails, that we were coming from the Mayo Clinic (he asked why we were in Arizona) or a combination of the two. Not that I'm complaining. I'm happy to not have a ticket.

Now it's just a waiting game for us. We'll here on Wednesday if Jake has been listed. After that, he can stay here until the organs become available. He'll need to have blood drawn once a month so that it's available for tissue typing when the time comes.

Here's the one and only photo we took on this trip: Mom
and Jake at the rest stop overlooking the Grand Canyon.
I'm sure they'll be sooooo excited that I posted
this, so shhhh it's a secret.

Second day of tests

Today was Jake's second day of tests. We had to be at the hospital at 6:30 a.m. Jake had a fasting blood draw and they took 21 tubes of blood. We met with his social worker, his nurse coordinator, a dietitian and one of four surgeons that perform the kidney/pancreas transplant operation. Here's what we learned today.

Blood: O is the universal donor, but someone with O can only receive O. A can get A or O. B can get B or O. AB can get A, B, AB or O. Positive and negative don't matter. Most people are O, so it's the longest list. AB is the rarest, so shortest list. Jake is A.

The list: Right now, in this region, there are four or five people on the A list ahead of Jake. Assuming he's put on the list, priority goes to the best match, not to who is the sickest, because dialysis is available. The hospital has done 28 kidney/pancreas transplants so far this year. If you follow those statistics, Jake is looking at about a 6-12 month wait. Which is much better than just a kidney, which would be three to five years.

Candidate: Everyone we met with today seemed to think Jake was the ideal candidate, so pending something unforeseen, we're pretty sure he'll be put on the list. We should find out about that a week from Wednesday.

Surgery: After the surgery, Jake would have to stay in the hospital five to seven days. He would have to return to the hospital three times a week for two weeks. And then two times a week for another two weeks. And then a week of final testing before he can come back to Salt Lake. He would need a "caregiver," which would probably be me, to stay with him for at least two weeks following his release from the hospital. After that he would have to return to Phoenix after four months, eight months, a year and then once a year for the rest of his life.

Meds: Jake would initially be on anti-viral, anti-fungus, antibiotic and immune suppressive drugs. After a certain amount of time, they would take him off the first three. He would need to take immune suppressive drugs for the rest of his life.

Organs: Once removed from the donor, the kidney/pancreas remain viable for up to 24 hours, which gives us a bigger window to play with than most transplants. Once notified of the available organ, the hospital has one hour to contact Jake, make sure he's healthy and accept the organs. Otherwise, they get sent on to the next candidate.

I think that's it for today. I'll post more if I remember or learn anything else new.