Thursday, October 26, 2006

Transplant Update

Hello everyone. I apologize for the drought in posts, but it has (once again) been a busy week. Fortunately, I have lots of good news to share today, so it should be worth it.

First stop, my new donor candidate, Kala, has gotten her first set of tests set up. She sent me an e-mail saying that the majority of her tests would be performed on Tuesday, October 31. There were a couple of tests that they couldn’t fit in that day, so they will be doing them on November 14. And, if I remember correctly from Josh, it takes two or three weeks after getting all of the work done to come up with results. That puts the results being available at the earliest at the end of November, so I do not expect anything until early December.

The next piece of good news happened last night. Our church had its annual Fall Festival for the children of the area from 6 – 8. After Jenny and I finished working at our class’s booth, we left to go home. My cell phone rang, and it was Baylor Hospital in Fort Worth. They had a potential kidney for me and needed me to head to Baylor in Dallas to get my blood drawn. We got to the hospital around 9:30 or 10:00 pm, and they drew 13 vials of my blood. They had to run tests on it (four hours worth) so they told me to go home. Unfortunately, the call at 4:00am was to tell me that this kidney and I were not a good match. But, the good news is that I am now at the calling point on “the list.” So, if I understand everything correctly, the next time a potential match comes up, they should give me a call again (and again until a good match is found).

I have called my transplant coordinator to make sure that I understand everything correctly. Hopefully she can explain where I need to go from here and perhaps she can tell me my exact position on “the list” for the area.

Please pray for Kala as she gets her testing done. Please also continue to pray that God will bring me the right kidney at the right time, no matter where it comes from.


Tuesday, October 17, 2006

October 2006 Lab Report

It is time, once again, to read my possibly interesting lab reports. This is the stack of charts that I get on a monthly basis that reveal to me how well my dialysis is going. Most months, the news is good, though there is the occasional trouble spot. But, faithful readers, have no fear! This month, there is only one problem spot, and they are going to work to correct that.

Last month, I tried something new. All of the responses that I got were good, so I am going to do it again. I scanned my lab report, and I am going to put in the charts themselves into my blog posting today. If this doesn't work for you, let me know, and I'll see what I can do to fix it.

My albumin (the protein in the blood that helps fight infections and aids in healing) was 4.6, which is slightly above the recommended number. The dietician likes it just where it is.

My potassium (A mineral needed for normal heart rhythm and muscle function) was 4.3, which is excellent (as you can see). I have not had a real problem with potassium since I started on dialysis.

My phosphorus (A mineral needed for healthy bones. High phosphorus can damage my heart and blood vessels by making them stiff, and can weaken my bones.) level was only 4.2 this month, which is great. As you can see, back in May, my level was too high, but I think it is under control now.

My corrected calcium (A mineral needed for healthy bones and muscles) is normal at 9.0. This goes along with the phosphorus and means that I am eating right.

My parathyroid hormone level is extremely high (at 744). I do not have the explanation of what the PTH is (I forgot to scan that page). They thought my level was down in July, but not the dietician believes that it was a false low (given how high it was in October). The treatment of high PTH is to take Vitamin D shots called Hectorol. The only problem with the Hectorol is that it can cause elevated Phosphorus levels ... so we shall see where those two numbers go.

My hemoglobin A1C is normal at 4.5. I think this has mainly to do with the fact that I am not a diabetic (so my body controls it's blood sugar correctly).

They don't have a chart for it, but my hemoglobin was 13.8 (which is normal enough). They are going to keep my epogen shots at the same level to keep my hemoglobin normal (which helps keep me from being anemic).

I don't know how well you can read this chart, as it ended up a bit smaller than the others (it is a full page chart, where the others start out at 1/4 of a page).
This shows my average fluid weight gains. My monthly average stayed between 2 and 3 kilograms, which is great news. My weekend rates were higher, but that is to be expected since you go 3 days between treatments instead of the normal two. But, overall, I am doing well with my fluid.

The only other thing to report on my labs is that my access flow rate was 980-something. This is the rate at which blood flows in my fistula. The clinic prefers an access flow rate over 400 in patients with fistulas, so I am in great shape. This is either the second or third good flow rate I have gotten with this fistula, so that means it is working much better than my original one. I am glad that all the extra work and surgeries paid off.

In other (kind of long) news, I talked to Josh (the potential donor) on Sunday evening. He said that the transplant coordinator had one more meeting that she was attending on Friday, and that she would let him know this week how it went (but she wasn't hopeful, due to his higher creatanine). I have one more potential donor that has already taken the initial blood type test. I guess I will be sending her an e-mail as soon as I find out about Josh for certain.

I guess that's about it for this week. Please continue to pray for the donor that God has lined up for me. Pray that they will remain healthy and that the eventual surgeries will go well for both of us. Thank you all for reading today!

Monday, October 09, 2006

Transplant Update

It’s time for another update for my loyal blog readers (and, for all of you new people that have recently started reading along). At my last posting, I was pondering about Josh’s kidney and if it would soon be finding a new home. I have not yet received the official word, but I have an un-official “no”.

Josh sent me an e-mail stating that the transplant coordinator would be taking his test results to the committee on Friday. However, based on the results, he will probably not be a good match. It seems that his creatinine levels are a little bit higher than they want to see in a possible donor. He is not in any danger, but they don’t want to donate kidneys that are less than perfect. He is supposed to hear back from her this evening with a firm answer, but it sounds like he will not be donating.

So, we don’t have to worry about me suddenly becoming allergic to onions or having the immense desire to read more comic books (both of which would be fine, Josh, in case you are reading this). Now, after I hear the official word from the transplant coordinator, I will have to contact the next person that volunteered to get tested as a donor. I believe that I have one more person that has done the initial blood testing, so she will be the next victim of the vampires at the kidney donation center.

In other news, things are going fairly well. The dietician raced by on Saturday, but she did stop long enough to tell me that the lab report would be available on Tuesday and that my phosphorus levels were still looking good. It’s always good to hear that I have a good report coming, so I will keep watching my diet and taking my medications just like I have been.

I have been feeling well recently. There has been very little nausea or light-headedness. I have had some evenings with slight fevers after dialysis, but nothing over a few tenths of a degree over normal. And, I normally feel better after a good night’s sleep, so that’s good. I think that I am comfortable with my 71.5 kg dry weight, as I usually end up pretty close to that after every treatment and have not cramped more than once or twice (and even then, it was minor).

I received a comment yesterday from another PKD suffer about her blog. It seems that she is new to knowing about the disease and is a big advocate for telling other people about it. I’ve read a few of her early posts, and she was amazed that hardly anyone knows about a disease that affects over 600,000 Americans (and 12.5 million people worldwide). I will have to read a few more of her posts, but if you want to check them out, head to:

Thanks for coming to visit today. Hopefully you will hear more from me sooner rather than later!

Tuesday, October 03, 2006

Moving Along

Welcome to another (fairly) weekly update to the “Way My Life Is Going” (trademarks pending in 47 states). Work, as you know, is busy. My health has been on a fairly steady plateau, which is wonderful. I have yet to hear from the transplant coordinator, which means that tomorrow will be another voicemail from me to her.

Like I said, my health is going along in a fairly steady manner. Today is the first Tuesday of the month, so they should draw lab work this afternoon when I get to dialysis. I do not expect any surprises, and hope to see all of my numbers still sitting in the “good” zone like they mostly have been for the past four months. Keeping my number in the normal range is probably the best thing that I can do for my continued health while I am on dialysis. Most of the solutions for good lab results are fairly simple, and it would basically be my own fault if they started to slip now.

As mentioned, I have not heard from the transplant coordinator yet on the status of Josh’s testing. I gave her a call on Friday and left a voicemail. If she does not call back today, then I will call again tomorrow and leave another voicemail. I imagine that after a few of those, I will get moved up in the priority list. I understand that she was on vacation last week, so I am not too much in a hurry, yet.

I cannot think of much else that is new going on. Jenny is enjoying her work as a substitute teacher. She moved from full time teaching so that she would be more available to spending time with me in the hospital, should I need to go for any reason. She says that there is much less stress involved now that she knows she will not be responsible for lesson plans during an extended absence (the type you might expect for a kidney transplant).

Our health benefits are being renewed at work this month. Some of the things that we can expect are possibly lower out-of-pocket costs on prescriptions, though I doubt I will personally benefit from those savings. They are also going to offer short term disability to all employees for free (currently, it is a paid-for benefit). I am sure that just means that long term disability will just be more expensive (right now, I pay for both, and I will continue to get both under the new plan). I don’t think that much else is changing. It doesn’t look like our monthly paycheck deductions are going up too much, and that is always nice (especially when you are trying to save money for large purchases).

That’s about it for today. Please continue to pray that God’s will is being done with Josh’s kidney transplant test results. I want to follow Him, even if He says to wait. Please pray that my health will continue to do well, so that I can continue to work and enjoy my few activities.