Blog-Time Mail Bag

Hey kids, it's time for another edition of Blog-Time Mail Bag. On this week's episode, we have a letter from Christy in Texas. Here's her letter, which was posted as a comment on my previous post:

My name is Christy McNiel. My husband, Gary has PKD and we are in the process of getting him listed on a transplant list. We live in Dallas and his nephrologist is at Baylor. We went to San Antonio to get evaluated for a kidney transplant because Baylor was having issues with our insurance. All is straightened out now and we now need to make an appointment with DTI to get Gary listed there. How was your expeience with Baylor? Who was your pre-transplant doctor, transplant surgeon and post-transplant doctor? Were you listed at more than one hospital? Sorry for all the questions. We are just trying to find out as much information as we can so that we know what steps we need to take next. Gary is not on dialysis yet, and we hope to avoid it , but we probably won't be so lucky. Thanks again!!

Well, Christy, first of all, thanks for writing. It's not too often that people send me mail full of questions. To start out, I'd like to say that it's too bad your husband also has PKD. Of the many things in my life right now, that's not one I'd wish on other people. I'm glad to hear that you got your transplant testing finished. Of course, you will need to do that every 12 months to stay active on the waiting list.

My experiences with Baylor went well, I think. I was listed at Baylor University Medical Center in Dallas as well as at Baylor All Saints in Fort Worth. They told me that I could list at both hospitals because they were in the same hospital network, but different transplant areas. This would get my name on two lists with only one set of paperwork.

As far as doctors go, I was with Dr. Silverstein at Dallas Nephrology prior to my transplant. He saw me from the time I moved to Dallas in 2001 until I started dialysis in 2005. Here, it seems that you get a different "specialist" nephrologist each time your kidney status changes. On dialysis, I had the clinic doctor, and wasn't overly impressed. I'm sure that any other blogs you ever read about clinical hemodialysis will tell you the same thing. I'm pretty sure that everyone considers those doctors as "drive-thru doctors" that are just trying to see all the patients in the clinic in under an hour. After transplant, I've been at Dallas Transplant Institute under the care of Dr. Nesser (and staff). They have two or three doctors and several physician's assistants that help coordinate the care of the patients. All the PA's report under your doctor, which means you get seen faster and more often (as otherwise, the doctor would never have time).

I do not remember who the surgeon was that performed my transplant at Baylor All Saints. Because I did not receive a kidney from a live donor, we did not really have any pre-transplant meetings with the doctors and surgeons. I just got a call at 3am and drove an hour or so to have a new kidney put in. They did a great job, and the hospital in Fort Worth was very nice. They had recently remodeled the transplant floor, and I enjoyed my short stay there.

I would advise being listed at as many hospitals and in as many areas as you are willing to drive to. It seems to me that if you are not going to have a kidney donated by a relative or friend that your best chance is having more chances. I mean, people talk about "the list" but there are really lots of lists, if you break it down.

There's probably a "master list" for each blood type. If you are a 100% match, then they will send the kidney to you (at least, that is how I understood it to work). Otherwise, you will just slowly move up the list in the area for your different matching characteristics. I think that there are six keys that the look at when matching. So, it would be my guess that you'd have a LOT of lists running around, with tons of names all filling a giant database somewhere.

The only advice I have is to follow all of the nephrologist's orders prior to the transplant. The longer your husband can stay healthy, then the less chance there is for him to have to go on dialysis (which is no fun). And, if he ever does go on dialysis, then he needs to be the model patient. Basically, the better you are for your doctors, the more likely you are not to have any flags in your file.

Good luck, Gary and Christy! Feel free to e-mail me at nmccart@gmail.com if you would like to talk more in a less-open forum. I didn't have any contact info in your comment, so I decided to post here, hoping you'd find it!

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In other news, surgery for my sinus and nose is Monday at 8:30 am. Keep praying that all will go well. I'm guessing Jenny will post later to tell you how it went. Thanks!

Letter to the Donor Family

My last post described the guidelines for writing to the donor family. I have composed that letter, and am going to share it here with my readers, in its entirety.

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Dear Donor Family,

My name is Nathan, and I received one of the kidneys that you chose to donate on January 11. I am a 28-year old computer engineer. My wife Jenny and I have been married for a little over two years now.

I was diagnosed with Polycystic Kidney Disease in 1998 while I was attending college. The nephrologist at the time said that I would have to watch my blood pressure, and that I would probably not have many problems with my kidneys until much later in life. I found out that I had the kidney disease because of a kidney stone. Polycystic Kidney Disease (or PKD) is a genetic disorder that causes the working cells of the kidneys to be replaced with fluid-filled cysts that gradually decrease the functionality of the kidney over the life of the disease.

In 2005 (at age 26) I got very sick. It turns out that there was an infection in my left kidney that was causing the cysts to bleed into each other. I was in the hospital about a week, during which time my kidney swelled up to about 15 lbs. The doctors had to remove my left kidney to keep it from causing any more problems than it already was. Before this, my kidney function was almost 20% of normal. After the surgery (and the month or so of recovery), it was discovered that my kidney function had dropped to less than 10%. I was terribly sick for most of 2005, barely being able to work or anything.

I started hemodialysis in July of 2005. I have had two fistulas. The fistula is a vein surgically tied to an artery which allows you to receive dialysis. The first one (in my lower left arm) did not work very well, so my dialysis treatments did not seem to help very much. After about ten months, the first fistula quit working and I had to have a temporary chest catheter installed. The surgeon gave me a second fistula in my upper left arm, and we waited for it to be usable (six weeks). This second fistula was tricky to use due to the vein being very twisty, and hurt more than the first one to have needles put in to it, but it worked for dialysis much better. After not feeling well for over a year, I was finally starting to feel slightly better. Of course, it did not help that dialysis was three times a week for four hours at a time. This was definitely not the way to feel normal.

I spent the second half of 2005 trying to get on to the kidney transplant list. I finally got to do my testing in January of 2006 (putting me on the list). I had three people get tested to see if they could donate a kidney, but only one was compatible. We were finishing up the testing with her when we got the call from the hospital. I cannot tell you how excited that I was to know that I could finally get a kidney.

Now that I am back to normal, I am sure that my life will be much better. My wife and I play string instruments for our church orchestra. We will be glad to not have to miss any more special performances for being sick and having dialysis. We will no longer have to skip Sunday School socials because I can not eat any of the foods that dialysis restricted me from. We should not miss nearly as much church this year from being sick, and I am thankful for that.

We are also hoping to get to travel now that I am healthy. My wife's grandmother lives out of state, and I have never met her. We were going to go visit her right before I got sick in 2005, but that had to be canceled. Now that I am well again, we hope to be able to go and see her. We would also like to do some vacationing that lasts more than a day, since that was about as long as we could be away from home while on dialysis. My parents also live out of state, and it will be nice to go and see them. I have only been able to travel home one time since I started dialysis.

Again, I want to thank your family for this gift of life. I have personally been praying for your family since I received the transplant. I know that the grief that you feel must be awful, but I hope that it helps you to know that your choice has dramatically improved my life. I thank God on a daily basis for your family and for your gift. I doubt that it was an easy decision, but it is certainly one that will have a wonderful impact on me for years and years to come.

Thank you again,

Nathan

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Keep in mind that the letter is to remain fairly anonymous. We are going to take it to the hospital with us on Monday and see if we can drop it off there to be delivered to the organ bank and eventually to the donor family.

Please pray that the family will receive this letter well. I do not wish to cause them more pain than they have already had to go through with losing a loved one. I just wanted to express my appreciation for all that they have done to change my life for the better.

I hope you enjoyed the letter, and remember, you can subscribe to receive these blog posts automatically by putting your e-mail address in the box on the right side of the blog page.

Three Sticks?

Well, it has been a while since I have posted an update, so I figured that today would be as good of a day as any. I am not going to apologize for the long wait this week, as I am sure that my regular readers (the faithful five) are tired of seeing that!

So, I have been having good dialysis treatments for several months now. There are three (or possibly four) technicians that I let stick me. They are the best technicians at the clinic, and normally do not have too much trouble. They will have to move a needle around a little bit after the treatment starts occasionally, if they did not hit it right down the middle. But, all in all, there have not been too many needle problems.

Last night, however, there was a slight mis-hap. One of the trusted technicians was there to stick me for my treatment. He put in the first needle (the arterial line) and it went in with no problems. He then went for the venous line, and it was a little tricky. He thought he had it in, but it was not pulsing. He opened the line to let it fill with blood, and it filled rather quickly (which was normal). He then went to add heparin to the line, which they always do at the beginning of the treatment. Unfortunately, when he drew the blood in to the heparin needle, he also drew in a clot. So, he swapped out to an empty needle and tried to pull more blood, but could not. He ended up having to remove that line, bandage it up, and put the needle in slightly higher. It hurt a little more going in higher, but that was because it is not an area that normally gets stuck. So, he got me with that needle for the venous stick. They got some new heparin, and all was well. There were no major problems with the rest of the treatment.

The only complaint that they have at the clinic is that my blood pressure and heart rate seem to drop during my treatment. I have had it explained to me that the likely cause is my mitral valve prolapse. My heart rate is irregular, and the machine may not always catch the lighter beats. I think this is why is will register my heart rate as 44 one minute and 88 the next. This problem happens every treatment, but the nurse doesn't seem to have it noted in my chart that it is normal for me. Instead, she worries every week and asks if I am taking too much blood pressure medication.

I guess she did not see in the chart where my blood pressure was up over 150 back in November of 2005. Before we got my medication all worked out, I was having actual heart rate problems. Now, however, I think that everything is fixed, and the machine just doesn't like my heart.

Kala has her test at the end of next week, so I will update everyone as soon as I hear anything. They drew my blood at the clinic yesterday for the monthly (and yearly) tests, so I should have lab results for everyone next week.

Thanks for coming by!

Welcome to 2007

Good morning everyone, and welcome to 2007. I realize that it has now been 2007 for at least 48 hours in most time zones, but I am still here to wish you welcome. Thank you for coming by (from all over the world) to read my little blog. Allow me to introduce myself, for the new readers.

My name is Nathan. I am 28 years old and live in Texas. I was diagnosed with Polycystic Kidney Disease in 1998, at the age of 20, while in college. According to http://www.pkdcure.org/, polycystic kidney disease is: "the most common genetic, life threatening disease affecting more than 600,000 Americans and an estimated 12.5 million people worldwide - regardless of sex, age, race or ethnic origin. In fact, PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia — combined."

My kidney disease, which is supposed to be genetic, was not discovered until I went to the hospital with a kidney stone. In making sure that I was healthy, the doctors discovered that I had multiple cysts growing on my kidneys. I was told that my kidneys would eventually fail due to this disease, and that I should watch my blood pressure and get regular check-ups with a nephrologist (which is a fancy word for kidney doctor).

I followed up with a nephrologist and a cardiologist on a regular basis. My blood pressure was kept mostly under control. The cardiologist found that I have mitral valve prolapse, and that was monitored closely as well. My kidney function was tested after I moved to Texas, and it was around 25 or 30% of normal (which is not good). I was told that in several years, after my function had decreased under 10%, that I would have to start dialysis.

In February of 2005, I had a minor stroke. The cause was undetermined, though I tend to blame my kidneys. I fully recovered, and the neurologist put me on a blood thinner as a precaution to prevent further strokes. I was sick quite a bit after that, just not feeling 100%. At the end of May, I got some kind of infection in my left kidney. The cysts were bleeding into each other. I went to the hospital and got several blood transfusions, but the blood was all getting trapped in my left kidney. After about a week, the kidney had grown to a gigantic size. (See this post for details: http://nmccart.blogspot.com/2005/08/photos-of-kidney.html). Basically, they had to cut out my kidney, and it weighed 15 pounds when removed.

So, needless to say, my kidney function declined rapidly. By the next time it was checked, I was under 10% function. I had an AV Fistula placed in my lower left arm, and I was scheduled to begin dialysis. I started my treatments in the hospital at the end of July in 2005. That fistula never quite worked as well as it should have, and it eventually stopped functioning at all. So, after several minor surgeries on my arm, I finally got a new fistula in my upper left arm (above the elbow). It is quite twisty, which isn't so great for sticking giant needles into, but it has an excellent flow rate and helps me get a great dialysis treatment.

So, from a health standpoint, I am maintained by dialysis and watched carefully by a hand-picked team of doctors (all of whom I have acquired in the past five years). Once I had a fully failed kidney, I started looking in to the possibility of a transplant. Every doctor that I saw said that I was an excellent candidate, since I was only 28 and was relatively healthy, minus the horrible kidney disease. They recommended that I look in to transplantation as an option. I completed the paperwork and had my transplant orientation in December of 2005.

I had several people immediately volunteer as a possible donor. My father volunteered to be tested for me first. Unfortunately, he was not a good match. After he was denied, a friend of mine named Josh stepped into the volunteer booth. He, too, was denied the opportunity to have a vital organ removed and given away. Next, a lady in our church, Kala, asked if she could be tested. She had heard of my plight through my mother-in-law and wanted to see if she could donate a kidney to help me out. So far, all of her tests have been positive. The transplant committee has conditionally approved her, and she has one final test on January 18. Once we get the results of that test, she should be fully approved to be my kidney donor.

I am hoping that we will be ready to have the transplant in February of 2007 (this year!). It has been a long, difficult journey so far, but I am ready for the next turn.

You may be asking yourself, "Self, what can I do to help Nathan? It seems like he is a wonderful person with a great sense of humor. In fact, I would probably be his friend if I met him in person. He seems, oh wait, I was asking myself a question. Self, how can I help Nathan out?"

I am glad you asked that (and thanks for saying all of those nice things about me). As a Christian, I think that the most help that anyone can give is prayer. Pray for my health, and pray that Kala's tests will continue to go well so that she can donate her kidney. You can also send me e-mail or leave comments on my blog. The comments route is the more public choice, and works well, depending on what you want to say. If you have questions for me, or want to know more, then you can always e-mail me. I try to read and reply to all of my e-mail, it just takes a while to do so.

Well, now you have an idea of who I am and where I am going. I hope that this post will be a good start to 2007. Keep reading, and come back to find out when I get my transplant and what all wonderful things that they will then get to do to me to help me keep the new kidney!

(For those of you that are not new, thank you for reading this year-end recap. You may have also noticed that I updated the format on the blog page. Blogger recently upgraded their system, so I got a new look to the blog. I hope you like it.)

Merry Christmas Everyone

Luke 2: 1-20

1And it came to pass in those days, that there went out a decree from Caesar Augustus that all the world should be taxed.

2(And this taxing was first made when Cyrenius was governor of Syria.)

3And all went to be taxed, every one into his own city.

4And Joseph also went up from Galilee, out of the city of Nazareth, into Judaea, unto the city of David, which is called Bethlehem; (because he was of the house and lineage of David:)

5To be taxed with Mary his espoused wife, being great with child.

6And so it was, that, while they were there, the days were accomplished that she should be delivered.

7And she brought forth her firstborn son, and wrapped him in swaddling clothes, and laid him in a manger; because there was no room for them in the inn.

8And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.

9And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid.

10And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.

11For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

12And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.

13And suddenly there was with the angel a multitude of the heavenly host praising God, and saying,

14Glory to God in the highest, and on earth peace, good will toward men.

15And it came to pass, as the angels were gone away from them into heaven, the shepherds said one to another, Let us now go even unto Bethlehem, and see this thing which is come to pass, which the Lord hath made known unto us.

16And they came with haste, and found Mary, and Joseph, and the babe lying in a manger.

17And when they had seen it, they made known abroad the saying which was told them concerning this child.

18And all they that heard it wondered at those things which were told them by the shepherds.

19But Mary kept all these things, and pondered them in her heart.

20And the shepherds returned, glorifying and praising God for all the things that they had heard and seen, as it was told unto them.

Merry Christmas everyone. It has been a few days since I posted, so I thought I would give out a quick update. Last week I mentioned that I had the nurse turn my dialysis machine up from 400 ml/min to 450 ml/min. That means that the machine can now clean about 12.5% more blood during each treatment. Since the doctor was not there this week, I spoke to the Nurse Practitioner that was doing rounds at the clinic. I had her write in my orders that my machine should run at 450 ml/min (whenever possible). My fistula has been working properly, and that is always nice. I have enjoyed having the machine run faster and getting more blood cleaned during my four hours. Hopefully, my arm will continue to cooperate and I will continue to receive better treatments.

No new news about Kala, yet, for those of you still wondering. Her tests are scheduled for January 2 and January 18. After that, we should hear from the transplant committee and be able to set up a surgery date. Then, I will switch from dialysis to "post-transplant" doctor's appointments, all the time, at least for a couple of months. Hopefully, you will be able to enjoy my "I had to give another urine sample today" posts as much as you have enjoyed the dialysis postings!

That's about it for today. I have been getting quite a few e-mails from my readers (all over the world!). It is nice to hear from you every time you write. And, if I have not replied to you, that is not because I am ignoring you. It is because I have not gotten to you yet in the e-mail queue. And, you can always post comments on the blog (which everyone can read). I will try to reply to you (if you leave an e-mail address).

Thanks for coming by today! Enjoy your Christmas with your family.

A Few Updates

Hello everyone. I have a few updates to make this evening before I go to bed.

First off, I got an e-mail from Kala this week. She has her two appointments scheduled, for January 2 and 18. So, hopefully, once the transplant people get her results from the 18th test, we should be able to set up a date for the surgery. This is great news, I'm glad that things are moving forward.

I had dialysis on Thursday night. I got a good stick, which is always nice. About half-way through my treatment, the technicians turned the machine of the guy across from me, and I saw that he was running at 450 ml/min. Now, I had been previously told that it would not do you any good to go faster than 400. When the nurse came to check on me (like they normally do), she asked if she could do anything for me. I told her that I wanted to run at 450 like that other guy and get a better dialysis treatment. She was able to turn the machine up to 440 (my fistula wouldn't let it go any faster). She said I need to talk to the doctor and have him up my prescribed dialysis to 450 so that they always set it higher. I was able to get a 1.73 Kt/V (as opposed to the 1.4 that I normally have been getting).

The Kt/V is how well your dialysis is doing. The K is the amount of waste removed, the t is the time you dialyze, and the V is your blood volume. The goal for most patients is 1.4 or above. The only way to increase this number is to increase the K or the t, or to decrease your V. Since my volume is not going down, and they are unlikely to give me longer dialysis treatments, the only thing I can do to get a better dialysis is to remove more waste. Since my flow rate is around 1300 or 1400, I don't see any problem with running the machine faster than 400 (as long as the needles end up in the right places). The faster the machine runs, the greater the amount of my blood that gets cleaned, and the higher my K value becomes, thus increasing the Kt/V. That's it for the math lesson for tonight.

I had the rest of my "transplant evaluation" tests today. I went in for an EKG, and echocardiogram, and a nuclear stress test. These were to complete my yearly evaluation to stay on the transplant list. The EKG is a simple test where they hook up electrodes to your chest and check the electrical activity of your heart for one minute. The echocardiogram is basically a sonogram done on your heart. You lay there, and they "look" at your heart with sound waves on a special machine, similar to how a new mother gets her unborn baby examined. The final test is the nuclear medicine stress test. They inject you with a radioactive dye, and then run some scans of your heart (for 15 minutes). After this, we hooked up another EKG and got a baseline reading. I then started walking on a treadmill. Based on my age, weight, and height, they wanted my heart rate to get to 163. The treadmill got faster and increased its incline every couple of minutes. Once I reached 163 (after 12 minutes), they injected some more nuclear medicine. Then I had to run for 30 seconds longer as they took one last EKG (which they had been doing every minute during the test). After the running was over, they gave me some juice and let me cool down. Then, they had me do one more scan in the machine that checks the radioactive dye in your heart. I almost fell asleep on the table, since you just have to lay there very still and quiet in a dark room.

The doctor went over my results with me. I have a mitral valve prolapse, and have known this for about six years. I get it checked every year or so, and it has never been a problem. Mitral valve prolapse is a heart problem in which the valve that separates the left upper and lower chambers of the heart does not open and close properly. So, instead of blood flowing only one direction, a little bit of blood "regurgitates" backwards to the chamber it was coming from. This is a very common heart condition. The only thing I have to do for it is to take antibiotics before going to the dentist. This keeps plaque from breaking off, getting into your bloodstream, and getting stuck down in your heart (that's bad).

It seems that my prolapse has gotten worse over the past year. Last year's test revealed that I had a "moderate" prolapse. This year, the doctor said that it was severe. He said that eventually, I will need to have valve replacement surgery. This sounded extreme, so I had him explain it to me. He said that they will trim the mitral valve, and then place a plastic ring around the outside of the valve, to make it a little smaller. This way, the blood will not be able to flow backwards. He said that it is a very simple surgery. I asked him what he wanted to do, seeing as I was facing a potential transplant.

He conferred with the kidney transplant team, and they decided that since I was in no immediate danger, that the valve replacement is not currently necessary. He said I will probably need to do it in 5 years or so, but by that time, I should be used to all of my anti-rejection medications and not be having any problems with the new kidney. He said that I am going to need to follow closely with my regular cardiologist on my mitral valve, and that it will probably need to be checked more than once a year. That is fine, since it means they can catch it before anything terrible happens.

Well, it looks like tonight's post was long, sorry about that. Please continue to pray for Kala and I as we wait on her tests in January. And, pray that my mitral valve will not cause any problems for a long, long time. Thanks for coming by!!

December 2006 Lab Report

Hello everyone!

It is time once again for the monthly lab report. That's right, boys and girls. Every month, Uncle Nathan posts his dialysis "patient report" for all the world to see (and taunt). And, since I figured out how to use the scanner at work, I usually post the graphs that the dietitian prints out for us to show us our progress (or not).

First off this month is Albumin. The definition page tells me that Albumin is a protein in my blood that helps fight infections and aids in healing. My albumin was 5.0. The goal is between 3.8 and 4.5. The dietitian said that I am VERY healthy, based on this number.

Next up is the enPCR. This is the protein catabolic rate, which suggests if I am eating enough fish, chicken, beef, and other protein foods to meet my daily needs. The dietitian continues to remind me that this number may seem unnaturally low because they do not calculate the protein output in my urine. My number this month is 0.59. The scale says you should be above 0.8. But, she also told me that I am obviously doing fine and to just ignore this number (as always).

eKdrt/V: Tells how well my dialysis treatment is working and if I am receiving enough dialysis to clean my blood. The goal is greater than 1.2, and I am at 1.46. As you can see from the chart, I have been receiving enough dialysis for the past six months, which is great. I can really feel the difference when I am getting repeated good treatments.

Potassium is a mineral that is needed for normal heart rhythm and muscle function. The goal is between 3.5 and 6, and mine is at 4.2, which is slightly below the half-way point. This is good, since too much potassium can make your heart stop. I am not having any problems with potassium in my diet, which is nice, because I enjoy potatoes.

Calcium is a mineral needed to make healthy bones and muscles. You get it from things like milk, even though I am not allowed to have any dairy products (because of the phosphorus). I did not take any of the calcium-based phosphorus blockers this month, and my number dropped down to 9.3. The goal is to be between 8.4 and 9.5. I have been slightly higher in the past, but I think that was due to taking the other phosphorus blockers.

Speaking of phosphorus, my level was 5.5 this month, which is right at the top of the range (3.5 to 5.5). I think that may also be related to me not taking any of the calcium-based phosphorus blockers. I have two blockers. The calcium-based ones are to take before meals, and the others are for after meals. I almost always take the after meal pill, but did not take the pre-meal pills at all last month. I think I will opt for a slightly higher calcium level than to risk a higher phosphorus level.

Finally on the list is the average fluid weight gains. If you cannot see the chart clearly because of its size, I think you can click on it to see it full-sized. The chart is accurate through November. It looks like my average monthly fluid gains dropped dramatically, even though my weekend gains were about the same as the last six months. I do not know if there was an error in the calculations, or maybe my one lowly kidney was working a little extra in November. Either way, I am within my safe ranges, not having edema or any other fluid-gain problems.

The dietitian did not print out a chart showing my PTH, but she said that it had gone up again. It seems that the range is between 200 and 400 or something similar to that. In October, it came up at around 800 or 900, so they decided to give me Vitamin D to bring it down. In November, it showed that it was 100, so they wanted to take me off the Vitamin D. I told them that it might be a false reading and that I should stay on a small dose. The doctor agreed, and kept giving me Vitamin D. This month, the PTH was around 500, which is high, so they are going to increase the dose of Vitamin D. I am glad that I argued for them not to take me off of the medication completely. I had watched the number jump high and low every other month and was able to make the connection that I need at least some Vitamin D. I think now, they just have to figure out how much I need every month to maintain a balance.

My hemoglobin this month was 14.2. The goal range is between 11 and 12. They said that they are going to stop giving me Epogen, which is the hormone replacement that prompts my body to make red blood cells. They told me that it is shown that there is no help to be above 12, I guess the marked benefits don't climb as quickly after 12. That seems strange, since you are much higher than that if you do not have a kidney disease. The doctor was not there on Tuesday night, but if he comes on Thursday, I will try and talk to him to see if I can understand why they want to keep my hemoglobin down (and keep me feeling more anemic).

So, as you can see, my lab reports are overall good, and they have been for at least the last six months. I am glad that the doctor has figured out what I need and has gotten everything in balance. Of course, now that I have it all worked out, I am getting ready to sign up for transplant surgery.

Kala sent me an e-mail, letting me know that she has the first of her two tests scheduled for January 2. After that, it is one test, and then the official "OK" from the transplant committee.

Continue to pray for patience (from me) as we wait for test results and committee meetings. Please pray that I continue to stay healthy so that when it is time to schedule the surgery, that there are no health-related delays.

By the way, I have been getting several e-mails from readers recently. It is absolutely wonderful to hear from everyone that reads my blog. There are some interesting stories, and I am working on replying to you, if you wrote to me. I always enjoy hearing from people, and it is neat to see that there are actually people that stumble across the blog that stop and read it.

So, send me an e-mail if you get a chance, or just comment directly on the blog. I would love to hear from you. Have a wonderful day (and thanks for reading such a long post).

Monday - Update from Kala

Hey everybody! It is the middle of Monday afternoon, and I just finished reading an e-mail from Kala. Val, my pre-transplant coordinator, called her and said that the committee has "conditionally approved" her to donate a kidney. The only thing that they need are two more tests, which she has scheduled in January. She submitted results for them, but they were too old, so they wanted her to get something more recent. Other than those two things, they approved all the other test results and consultations.

This is sounding like a fairly clear answer to prayer. So, unless God presents a different option, it sounds like we will be setting up some surgery for late January or early February (depending on everyone's calendar). For me, it will be a week or two in the hospital, followed by daily lab work and doctor's visits for two weeks, then that slows down as time goes forward. They want to be VERY careful with the new kidney, so they check your vitals a lot at the beginning. That also helps them get you on the right amount of anti-rejection medication. Apparently, the medication dosages get adjusted a lot in the first month or two, until your body balances in its new condition.

Please continue to pray for Kala. Pray that her tests will go well in January and that there will not be any surprises. Also pray for me that I will stay healthy and will be ready to accept the kidney when the time for the surgery arrives. Pray for Jenny, that she will be able to put up with me and will be a good help-mate when it comes time to drive me to the doctor every day. And, pray for my job, where I will be gone for a while. Pray that they will be able to hold my position and that the kidney transplant will not interfere, too much.

Thank you for your continued prayers. I will let you know more as I know more!

Transplant Testing Year II

Hello everyone. Remember when I told you that the Dallas Transplant Institute had scheduled me for tests on Monday and for next week's Friday? Yeah, well, it turns out that those tests are to maintain my status on the transplant list.

I went in Monday and had a chest x-ray done and some blood drawn. Then, I went to eat lunch and have my physician's consultation. The nurse did the EKG (I think, the one with electrodes all over your chest and they scan your heart for about a minute). Then, I talked with the PA. She had my lab results back already, and said that everything looked great (except for the CBC, and the machine was broken, so they couldn't take it). She said that she wished that other patients took care of themselves as well. I have to fax my CBC over from dialysis (which should be ready tonight). I also had to send over my TB test results. But, I should remain on the list for one more year (based on what I have seen so far). I still have to have a stress test done on my heart on the 15th, but I am not worried about that.

They drew our labs on Tuesday (the 5th). I should get back the results tonight, since I need to send them to the transplant people. The charts probably won't be ready until next week, but that's normal. I am not expecting to see any problems, as my labs have been going great for at least the last six months. Thank you for your continued prayers in that area.

In other news, the transplant committee will meet on Friday (the 8th) to discuss Kala and see if they want to let her donate a kidney. It does not sound like there will be any problems. Please pray that the committee comes to a conclusion quickly and that we find out so that we will know what to do next.

Thank you for all of your prayers. Keep my health in your prayers, as you have to stay healthy in order to qualify for a transplant. Keep praying for Kala, that she will not be worried or nervous as Friday and the weekend get closer.

Thanks for reading!

Soon to Come ... Tests for Nathan

It is time once again for me to update the world on how I am doing (and what is going on). Last week was Thanksgiving, so I was busy with family things and did not get around to posting too much. Though, I see I have been getting around 30 hits a day, so I should probably get some new content up here for people to enjoy.

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).

One Last Update from Kala

I got a final note from Kala (my potential donor) the other day. She said that her MRI results are perfectly fine and that she is in great condition for laparoscopic surgery. She also had to fax over her latest "women's" exams. I guess neither one of us had thought about those being necessary as she is the first female I've had tested. So, now she is set to wait until the December 8 meeting of the committee to find out if they accept her as my donor. If so, we should be able to schedule the procedures in January!

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

As promised, I have one more post this week. I wanted to get all of this information out, but I know that the lab reports are always long, so I didn't want anyone to get bored reading and miss something that might be interesting. So, I figured that I would break up my posts and have them be bite-sized chunks.

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!

November 2006 Lab Report

Here it is! The world-famous, ever anticipated, lab report for the month of November. Use only as directed.



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.

Quick Prayer Request

Hi Everybody! (Hi, Dr. Nick!)

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!

Short Update

I don't know how interesting today's post will be, but bear with me. Though, don't leave me with a bear. I think it would eat me, and that might be bad (for the bear, too).

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!

Note from the PKD Foundation

On Monday morning, I received a comment on my blog from the Communications Manager at the Polycystic Kidney Disease (PKD) Foundation. They have an e-newsletter that they send out, and she wanted to know if it would be alright for her to include a link to my blog. I told her "Yes", and I expect to see my daily hits spike on Wednesday through the rest of the week.

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!

Kala is Testing

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!

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.

Thanks!

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!

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:
http://livingwithpkd.blogspot.com/

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