Thursday, November 30, 2006
I got a letter Tuesday evening from the Dallas Pre-Transplant group letting me know that they had scheduled a couple of days worth of tests for me at the beginning of December. I have some lab work, some consultations, and a stress test set up on the 4th and the 15th. I have never taken a stress test before, so that should be fun. The other tests I have done before, and they are not a problem.
I am looking at these tests as being a good sign. This is the first time (after I have had a donor tested) that the pre-transplant group has contacted me to do some further testing. I guess that all of Kala's results have been good, so they are going to run me through a couple of things again just to make sure that I am still a good match to her. That is good news, and I am glad to hear it. Hopefully everything will be in order and the transplant can keep moving forward.
Other than that, everything is going well. I think my allergies decided to revolt this afternoon. I just started sneezing this afternoon and haven't been able to quit. I guess the body can produce mucus even if you aren't taking in a lot of fluid. I will have to try and get some Benadryl to save my nose. We don't have a lot of soft tissue at work, so it's starting to take it's toll on me.
Please pray for the transplant committee. They are going to make their decision on Kala next week (I believe) to see if she can donate her kidney. Please pray for my tests that they will go quickly and there will not be any problems.
Oh, and totally unrelated, but it snowed here today. By snow, I mean some snow fell from the sky. It melted as soon as it landed, but it was in the sky! Winter has arrived (for a day or two).
Wednesday, November 22, 2006
Please continue to pray for Kala's committee results. Also pray for me, that I will not place false hope in this decision, but that I will continue to keep trusting God and placing my hope in Him. It is sometimes difficult to focus my energies the right way, but I always want God to be first, regardless of how things go around me.
Friday, November 17, 2006
First off, let's hear about Kala. For the new readers, Kala has volunteered to be tested as a potential kidney donor. She is the third such person to go through the process. As of our last report, she seems healthy enough to donate, and her tests are going well. Recently, she met with the social worker, who said she was an excellent "donor candidate." I believe Kala had her MRI on Monday. The machine is loud and uncomfortable, but she said that the test went well. As of Thursday afternoon, the MRI results were not back, so we are still waiting on that. The transplant committee meets on Friday, December 8. We should know something from them by probably the Monday or Tuesday after that.
All in all, the news from Kala is good to hear. I am glad that all of the tests and interviews are going well and that no problems have been uncovered. I also appreciate her kindness to be willing to donate a kidney to me.
In other news, I have been getting more e-mail recently from other Polycystic Kidney Disease (PKD) sufferers (er er er ers). [<-- trust me, that would be funny if you could hear me say it.] Anyway, I have a few e-mails from other PKD people, and they are all at least interested in what I have been going through. I am SLOWLY trying to get back to everyone, so if you wrote to me, don't feel bad. Your message is in my Inbox, waiting it's turn to be replied to. I have not been feeling well this week. I have had a lack of appetite, as well as some minor nausea since about Monday. Today (which is Friday), I have had a headache most of the afternoon, which is unusual for me. Hopefully, I will get to feeling better soon. It's not any fun to be sick. I have an interesting comment I would like to throw in. There is another blog that I have been reading where the author asked that we pray for healing for someone's cancer. It seems that after the latest scans, most of the tumors have gone away without medical intervention. The author has encouraged prayer towards miraculous healing (in whatever manner that God chooses). This made me think about God's faithfulness. I have been reading about faithfulness, and thought I would share a little from what I have been studying. We have faith based on either who GOD is or on what GOD does. Isaiah 55:8-9 says - 8 "For my thoughts are not your thoughts,
neither are your ways my ways,"
declares the LORD.
9 "As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
Hebrews 13:8 says -
8 Jesus Christ is the same yesterday and today and forever.
The summary of the lesson was that faith based on who GOD is frees Him completely to show us what He can do!
Please continue to pray for me. Pray for a miracle healing. Pray that the right donor will be found to match for me. Those prayers are not exclusive. Pray that God will choose the method that will bring Him the most glory. I am just here as an instrument. I want to be used in any way possible.
Thanks for reading again today. As always, tune in next time for more fun!
Thursday, November 16, 2006
My Albumin (the protein in the blood that helps fight infections and aids in healing) was 4.9, which is just high of the "normal" range. That's great! Nothing bad there (as normal).
My enPCR (the Protein Catabolic Rate) was below normal at 0.71. This is actually normal for me. It suggests if I am eating enough fish, chicken, beef, and other protein foods to meet my daily needs. The dietitian said that this number is probably diluted because I am still producing urine.
My eKdrt/V was 1.48, which is pretty good. This tells how well my dialysis treatment is working and if I am receiving enough dialysis to clean my blood. It's down a little from the past two months, but it's nothing to worry about as long as it stays in the target range.
My potassium level was a completely normal 4.5. Potassium is a mineral needed for normal heart rhythm and muscle function. High potassium can make your heart stop, though that has not been a problem for me.
My corrected calcium level was 9.8. Calcium is a mineral needed for health bones and muscles. I think the calcium level was a little high because I took more Phoslo this month so I could enjoy some more cheese. Fortunately, that is not a dangerously high level, and it should be back to normal next month.
Last but not least is PHOSPHORUS. My worst enemy, lol. My phosphorus level was 4.1 (which, by the way, is wonderful). Phosphorus is a mineral needed for healthy bones. High phosphorus can damage the heart and blood vessels by making them stiff, and can weaken the bones. I had feared that taking the Vitamin D treatment for my high PTH would mess up my phosphorus, but it did not do that, which is nice.
Speaking of which ... they did not order the PTH lab on the 7th, so that had to draw it on the 14th. Hopefully by this time next week, I will have some results for that (to see if it is better).
Finally, come the average fluid weight gains. Pay no attention to November, as it has not finished yet. You can see my highest was in August (it was very hot that month). But, since then, I have kept my fluid weight gains under control in September and October, even going a little lower last month (on average). The top line represents weekend gains, while the bottom line is overall monthly gains (averages).
So, life is good in the dialysis lab-report world. Keep praying for good numbers every month.
I have more to report, but I think I will wait until tomorrow. Only one long set of posts per day, I think.
Thanks for viewing! You guys are great. I have been averaging way more hits to the blog this week than I have been in a long time.
Monday, November 13, 2006
I've got a short post for today. I got an e-mail from Kala this weekend. She wanted me to know that her MRI was scheduled for Tuesday (November 14), and that she would like some prayers for herself. Kala said she was a bit claustrophobic.
For those of you that do not know, MRI means Magnetic Resonance Imaging. It is a noninvasive, non-x-ray diagnostic technique based on the magnetic fields of hydrogen atoms in the body. An MRI provides computer-generated, three-dimensional images of the body's internal tissues and organs. To do the test, you lie down on a table, and the doctors slide you into a tube. If memory serves correctly, the inside of the tube is not too much wider than the table (slightly broader than your shoulders). So, it is a tight squeeze. And, the test is not quiet. The machine bangs around a lot while the magnets look at your organs.
So, if you will pray for Kala for her tests on Tuesday, we would all appreciate it. Thanks!
Friday, November 10, 2006
I had dialysis again last night. The clinic draws lab work from us on the first full week of the month. This happened to be on Tuesday. If you remember from my last lab report, I am mostly concerned about my PTH level this month. PTH is your Parathyroid Hormone, which is: "Parathyroid hormone is the most important endocrine regulator of calcium and phosphorus concentration in extracellular fluid. This hormone is secreted from cells of the parathyroid glands and finds its major target cells in bone and kidney." Last month, it was ridiculously high. And, of course, I am always watching my phosphorus levels.
So, the dietitian was wandering around the clinic verbally telling everyone pieces of their lab work, if they had a problem or had done really well. For example, one of the guys sitting near me always has terribly high phosphorus, and I heard her tell him that he had lowered it to almost a safe level this month. So, as she was speeding past me, I called her over to ask about my PTH and phosphorus. She told me that my phosphorus was around 4 (which is good) but that she didn't have my PTH levels yet. So, she went to look, and she had not ordered the blood work for November. That means that I won't get that lab drawn until Tuesday. So, I have no idea if the Vitamin D shots are helping or not.
The "official" lab report probably won't be ready until Tuesday. Even though they get all of the reports back to their computers by Thursday night, they don't print them out to give to us for a full week. I guess most people don't care, but I would like to see my labs as soon as possible, personally, to better control my health.
They also ran an access flow test last night. This test shows how well the blood is flowing in your access. In the case of an AV Fistula, they want to see a flow rate over 400. Mine has done well on the last two or three tests. Last night, it was 920, which is great. That's a little more good news!
Let's see ... what else is going on? How about some statistics? The people at http://pkdcure.org/ posted a link to my blog in their e-newsletter on Wednesday. I'd say a lot of people must have read it, since I had 78 visitors make 138 page views. They are the 12th highest referral to my web site (in the past year). Of course, the most popular way to visit is "direct" which is likely from people having the site bookmarked. Google is the second most popular way to get to my site. And, interestingly enough, my friend Josh has the third highest number of referrals! Way to go, Josh. Keep up the good linking.
Please pray that I will continue to feel healthy. I've had a few days in the last month or so of not being top notch, and that's never fun. Please continue to pray that God's timing will be fulfilled in me getting a new kidney. And, keep praying for Kala as she goes through her testing.
Thanks for visiting today!
Tuesday, November 07, 2006
For those of you who are reading this for the first time, let me give you a quick overview of who I am. I am a 28-year old guy living in Texas that was diagnosed with PKD about 8 years ago (or so) when I was in college. I lived in harmony with my slowly-declining kidneys until the beginning of 2005. I was sick, then I had a minor stroke, then I was on blood thinners, and then I was sick again. It ended up with my left kidney swelling to about 15 lbs (about 6.8 kg) and having to be surgically removed. My previous kidney function of around 20% suddenly dropped to less than 10% with the removal of one of my kidneys. I started dialysis in August of 2005, and got put on the transplant list in January of 2006. Since then, I have been continuing dialysis while running my friends and family through the donor process. I am on my third "potential" candidate. Also, I have moved up high enough to be called by then hospital if they have a close enough match come in to the system. This has happened once, but I did not match, so I continue to do dialysis and wait.
The greatest help that I have had through this has been my faith in God. As a Christian, I feel that God gives me the strength on a day-to-day basis to keep on living. I have faith that He has a plan for my life and that He has kidney ready for me, at the right time. If you are not a Christian, don't worry, because I don't really fill my blog with preaching. But, if you have questions, please e-mail me and I'll help you with anything I can. That goes for PKD info as well as Christianity.
Now that I've given you an introduction (even though I expect you ALL to go back and read all of my old posts) - I'll give a more normal update. I have dialysis tonight. Since it is the first Tuesday (after the first Monday) of the month, tonight should be lab work. I hope that my phosphorus has not gone up too high since they started giving me Hectorol. The Hectorol is to help control my high PTH. The side effect is that it can raise your phosphorus, which is the only number on my lab report that I have really had a hard time keeping in control. It's not easy when you enjoy cheese as much as I do!
So, thanks for coming by to read today. Please pray that Kala's testing will continue to go well. She let me know that she doesn't have TB, which is good. Pray that God will have the best kidney for me at exactly the right time, and that the surgery will go well when we get to that point. Please pray for my continued health so that when the kidney arrives, I won't be too sick to take it. And, finally, keep praying for Jenny, who has to put up with me on a daily basis.
One last thing, if you want to learn more about the PKD foundation and what they do, please visit: http://www.pkdcure.org/. From there, you can read about the disease, and learn about ways that you can help (most of which are financial).
Enjoy your day!
Wednesday, November 01, 2006
Today is Wednesday, November 01, 2006, and I just got an e-mail this morning from Kala, my next potential donor. Her testing was scheduled to begin yesterday, and she has a few results already.
Here is her e-mail to me, and I will explain anything strange at the end:
“I got the results from my GloFil test, I passed it with flying colors. And I asked about my creatanine (misspelled I'm sure) levels and was told they were completely normal. I am sure there is much lab tests that will take awhile to get the results. The consult with the kidney doctor (nephrologist) she said she found me an acceptable candidate. The transplant surgeon said the same thing. I would be a candidate for laparoscopy version of the surgery unless the MRI I have not had yet shows I have too many blood vessels and that is very rare. The psychologist must have liked our talk because he started talking to me about when I would want to do the procedure. So, unless something strange comes back from the labs or shows up on the MRI, everything looks good. They said since my last two things can't be done until 11-14, my results would be presented to the committee in the one meeting they will be doing in December. They did not tell me when in December. So, if everything is a go, and you have not already received a cadaver kidney, January is the month surgery could be done. Again, I must emphasis that not all results are in but everything that took place today went swimmingly well.”
Now, for some explaining …
The GloFil test is a test of kidney function. They have you get very VERY well hydrated, and then you are injected with a radioactive dye. The technician then measures how much of the dye is removed with your urine over the course of four hours. The amount removed is calculated with body weight and age and probably some magic numbers to determine what your kidney function is. It looks like Kala’s is pretty good (and that’s a good thing). Second, the level the that the test measures is spelled C-R-E-A-T-I-N-I-N-E (for all of you perfectionists out there).
If I remember correctly, they drew over 20 vials of blood when they were typing and matching me for all of the testing, so I know it will take a while to run all of the blood work.
That is good news from the doctors and the psychologist. I’m glad to hear that some crazy person didn’t’ volunteer to give the “gift of life.” So, we can all look forward to a week from Tuesday to see if the rest of the tests come out well. And, as you can see, they committee will meet in December and we will probably know by January if Kala is a go.
Of course, if they wait too long, I will have to get re-tested. They update all of the recipient’s labs every year, and I did mine in January of this year. So, I will be in the hospital in January for one reason or another. I certainly would prefer to be receiving a new kidney, but it’s all in God’s hands.
Please pray for Kala as she gets tested. Please pray for me that I will continue to be healthy. And please pray that God will let us know, clearly, who should be my donor.
Thanks for reading!