Wednesday, July 30, 2008

7/30/08

Katie had blood drawn on Monday (7/28) and we were to call today for the results and to see when we need to have blood drawn again. The good news is that her creatinine went down to 4.45, that's awesome! She wants the labs drawn again in 2 weeks. Katie will be glad to hear that she doesn't have to get it drawn again next week.

I also asked Nancy (coordinator from the peds nephrology side) how long the dental clearance for is good for since Katie already has a dentist appointment set up for 8/9 and she said it's good for a year so she's faxing that to Steve and that will be one big check mark on the list of things that need to get done.

Finally, right before I spoke to Nancy the transplant services secretary called and asked all kinds of questions that that hospital already knows, and that frustrates me. She wanted Katie's DOB, insurance information, height, weight, race, etc. It's frustrating to me that they don't seem to have access to her complicated medical history. So the most recent addition to the list of questions for 8/11 is "How will there be continuity of care when your data system doesn't seem to be connected to that of her other specialists even though you are all in the same facility?"

Sunday, July 27, 2008

Sunday, July 27, 2008

We went to church today and announced to our church family (those who hadn't heard) that we're heading toward transplant. It was a little emotional, and it brought to mind again the fact that a lot of people think that a transplant is a cure for all of Katie's kidney issues, and it just isn't, it's just another treatment for her kidney issues. We're going to trade one set of diet restrictions for another, and one set of medicines for another.

Also today Katie thought of a question we need to ask at our first appointment. She wants to know if I or her Dad are her donor will we be able to recuperate in the same hospital room. That's a good question, and one that had passed through my mind but then I had forgotten. I'll add it to the list in our doctor's appointment notebook.

Saturday, July 26, 2008

Ask away...

I forgot to add, please feel free to ask any questions you may have, we really don't mind answering questions. You can simply comment here on the blog and I'll get back to you.

Beginnings

Katie’s only kidney never worked as well as a healthy kidney. We knew that very early on, but there were other medical issues that had to be managed and at the time, the kidney was low on the list. However, at some point that neither her Dad or I can remember, she had a bladder infection, during that infection bacteria made it up into her kidney and we were introduced to the pediatric nephrology department, and Dr. Susan Mendley. I think it was sometime during 2005 or 2006 that we finally got the official “chronic renal failure” diagnosis. So our journey to kidney transplant began the day she was born, but it began in earnest recently.

7/14/08: Just another blood draw for another nephrology check up, nothing out of the ordinary.

7/15/08: After years of keeping Katie’s kidney function in a workable range of 1.9 to 3.6, we got a phone call that it has risen to 5.4. The nurse who called said they wanted Katie to drink 3-4 liters of fluids a day and for us to redraw the labs on 7/19. Those results would be available by our checkup appointment on 7/22. The nurse, talking to us on behalf of Dr. M, seemed to indicate that maybe Katie had gotten dehydrated. I agreed that that was very possible since she has been in camps for the past two weeks, so was spending more time outdoors. And I admitted we had skipped a cathing there or there which I really knew was a problem, but sometimes you have to balance having a kid and having a kid with medical issues.

Links of interest: Creatinine http://en.wikipedia.org/wiki/Creatinine
Renal failure http://en.wikipedia.org/wiki/Renal_failure
Cathing http://www.healthcare.uiowa.edu/cdd/patients/cic.asp#basics

7/22/08: We arrived at our checkup hoping for good news. After waiting in the waiting room for way too long we were greeted by a resident. Since our hospital (UMMS: University of Maryland Medical Center) is a teaching hospital we’re used to this. He had the labs with him so as soon as I answered a few of his questions, I asked him about her creatinine … it was 5.17, and her BUN was 53!!!. When Dr. Mendley came in, she went through the preliminiaries and then she said “well we’ve been discussing when we would begin talking about transplant, and now we are there.” The said for us to contact Dr. Schweitzer since he does the pediatric transplant evaluations, and they would notify Dr. Voigt (our surgeon who has taken Katie ot the OR 20 times), and she called Nancy (the nurse) as we will apparently become quite well acquainted. Things became a bit of a blur. I know that I asked if there was any chance the creatinine would come down causing the process toward transplant to be slowed, and she said maybe if it came down to 4 she might stall it slightly, but she clearly wasn’t expecting that to happen. She and Nancy told me to be sure to tell Dr. Schweitzer’s office that I needed a pediatric evaluation, and this appointment would be an all day affair, we should bring any living donor possibilities with us, there’s lots of testing for Katie and for any living donor possibilities. Katie would need an EKG and an echocardiogram and that can’t be done through transplant services because they only scheduled those for their adult patients, Katie’s would have to be done through pediatric cardiology. I mentioned that I am likely to be the donor, this seemed to please them. We were given a standing lab order for weekly labs, but told that we may not need them every week but that for a while we would. We were to having the next blood draw on 7/28 and call two days later to find out when the next draw should take place. Nancy talked some more about the rest of the team that we would be introduced to at our first appointment, a social worker, a financial planner, a dietician, an transplant nurse. And finally, we were scheduled for our next appointment with Dr. Mendley in 6 weeks on September 9th.

Links of interest: BUN http://en.wikipedia.org/wiki/Blood_urea_nitrogen

7/23/08: I called to schedule the appointment with Dr. Schweitzer for 8/11, the person I spoke to could only give me a day, not a time, someone else would call me with a time.

7/24/08: I received a strange call from transplant services, they asked for Katie, and wanted to “put her in their system.” I explained she should be in the UMMS system. Then she asked a few strange questions, and said that she wasn’t sure what time we should come because kids don’t come at the same time as other patients. And she asked if we knew we would only be seeing the doctor not the rest of the team.
I emailed Nancy, the phone call seemed odd, and I still didn’t have a time, and I got confused and thought maybe I was supposed to be scheduling something else, like the cardiology tests.
She called back and I had a long conversation with her. The appointment on 8/11 should look like this:

Arrive between 7:30 and 8am, maybe see the financial person before 8:30 maybe not
8:30 – 9:30 there is a presentation, we think a video, that discusses the procedure, the post transplant meds, the blood draws, etc.
Then we will meet with the following:
Transplant nurse (this will likely include the first blood draw for Katie, Steve and I)
Social worker
Financial person if we didn’t already meet her
We will meet with a living donor coordinator

Nancy went on to say that the initial round of donor testing takes 2-3 weeks to come back. She also mentioned that she had seen in an old discharge note of Katie’s that I was taking an antidiabetic medication, so I explained that my medical history has some possible reasons for me to be excluded but so does Steve’s as he has a history of kidney stones. So she suggested that we have us both evaluated until the team excludes one or both of us. I asked her what kind of time frame we were talking about here, she said the quickest she has seen it happen is about 3 months, she thinks we’ll be looking at November or December. When we see Dr. Mendley again she’s hoping the team has decided on a donor, and we will get some things and more info from Nancy:
· Order for chest x-ray for Katie which we can have done that day if we choose (and
we likely will).
· Order for dental clearance (luckily Katie already has a dental appointment that week.)
· Nancy will need a copy of Katie’s immunization record, and she will need a current (within
a year) tetanus shot that should be done through her primary care doctor.
· She will also need a TB test, which again should be done through primary care.
· At that time we will receive the order and phone number to schedule the EKG and the
echo.
· She will also need to see Dr. Voigt, and have a renal ultrasound so we’ll work on getting
that set up after the 9/9 appointment too.

And so our journey, in earnest, has begun, I will make every effort to keep this blog as updated as possible.