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.

Writing to the Donor Family

I have received several questions asking if I was planning to communicate with the donor's family to thank them for their gift. My plan is to write them a letter according to the guidelines provided by the hospital. I will work on that letter this week, and will post it to the blog once I get it completed.

Below is the list of guidelines provided to me by the hospital for writing to the donor family:

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WRITING TO THE DONOR FAMILY 

The decision to write to the donor family is a very personal one. Sometimes transplant recipients choose to write to donor families to express their gratitude. In response, many donor families have mentioned that a card or a personal note from the recipient offers some comfort. Whether or not you decide to write to the donor family -- it's your choice.

Here is some information you may want to include.

Talk about yourself:

• Include your first name only.
• Your job or occupation.
• Your family situation such as marital status, children or grandchildren. (Do not include last names.)

Talk about your transplant experience:

• Describe how long you waited for a transplant. (What the Wait list was like for you and your family.)
• Explain how the transplant has improved your health and changed your life. (Can you participate in activities now that you could not before your transplant?)
• Explain what has happened in your life since your transplant. (Did you celebrate another birthday? Did your son or daughter marry? Did you become a grandparent? Did you return to school or accept a new job?)

Closing your card or letter:

• Sign your first name only.
• Do not reveal your address, city, or phone number.
• Do not reveal the name or location of the hospital or your physician.

Mailing your card or letter:

• Send it to your transplant coordinator. The transplant coordinator will forward it to the organ bank. An organ bank coordinator will review it to ensure confidentiality and will then mail your card or letter to the donor family.
• Place your card or letter in an unsealed envelope.
• Include a separate piece of paper with your full name and the date of your transplant.
• Place these items in another envelope and mail them to your transplant center.

You may or may not hear from the donor family. Some donor families have said that writing about their loved one and the decision to donate helps them in their grieving process. Other donor families, even though they are comfortable with their decision to donate, prefer privacy and choose not to write to the transplant recipient.

Remember, the donor's family may still be coping with the loss of their loved one. While you may be celebrating the anniversary of receiving your transplant, it is also the anniversary of someone else's loss. Please ... communicate in a sensitive manner.

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!

Sorry for the Delay

Sorry for the delay, everyone. I was so busy at work and at home last week that I did not have time to update my blog. I realized that this was a blunder after the third or fourth person asked me how I was doing (since I had not updated). I repeatedly heard people wondering about my health, hoping that I had not been too sick to post. Well, fear not, loyal readers, I have not been ill, I was just busy.

It has been over a week since I last posted. Not too much has been going on lately, which is nice, I suppose. My arm is still sore from the infiltration on the 7th. There is some minor bruising above one of the needle sites. I think the tech pinched my arm while she was taping it up on Saturday, and it left a bruise. My arm does not hurt too much, except for about an hour or so after each treatment. Most of the yellow coloring has gone away, which means that most of the blood has been reabsorbed into my arm. Thankfully, it was not a bad infiltration, so there was no damage.

I had mostly good treatments last week. Tuesday’s treatment ran a little slower because I don’t think the technician that stuck me has quite as good of an aim as some of the others. There are three technicians that I really like, and two or three more that do a decent job. The lady I had on Tuesday gets the needle in, but it must always be brushed up against the vein wall because it can’t pull blood quite as quickly as normal. Thursday and Saturday, I had some of the better technicians, and my machine was able to run at 400 ml/min.

My fluid intake has been pretty good lately. I had my dry weight raised to 71.5 kg, and I think that has helped a lot. My poor remaining kidney doesn’t do too much work when my dry weight is too low, so I try to get it raised up every once and while just so the kidney doesn’t get too lazy.

Well, it’s probably time for me to do some work today. I just wanted to shoot out a quick update to everyone and let you all know that I am doing well. I have not heard from the transplant doctors yet about Josh’s kidney, but when I do … you guys will hear everything.

Please continue to pray that God’s will be done in that situation. And, continue to pray that I have good health and good dialysis treatments.

Thanks!!

Hemodialysis Patient Report Card for Nathan - Sep 2006

Hello everyone. I am posting today to give you my latest lab results. I am posting directly from blogger.com today, because I am going to attempt to insert pictures to show you exactly what I see on my lab report.

Here it goes:
My Albumin was 4.6. Albumin is the protein in the blood that helps fight infections and aids in healing.


My enPCR was 0.6. This is the Protein Catabolic Rate; it suggests if I am eating enough fish, chicken, beef, and other protein foods to meet my daily needs. The dietician said that this number is probably dilluted because I am still producing urine.


my eKdrt/V was 1.5. This tells how well my dialysis treatment is working and if I am receiving enough dialysis to clean my blood. Notice that it has been going up since July (when I started using my fistula instead of the catheter).


My potassium was 4.2. Potassium is a mineral needed for normal heart rhythm and muscle function. High potassium can make your heart stop.


My corrected calcium level was 9.0. Calcium is a mineral needed for health bones and muscles. The calcium level was a little high back when I was taking more Phoslo. Now that I am hardly taking any, my calcium levels have gone back to normal.


My phosphorus level was 3.3 (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. The dietician said that 3.3 is wonderful, and that I do not need to worry about it being slightly below the "shaded area" of normal.


This final chart shows my average fluid weight gains over the past six months. This is a new chart to our lab packet, and it fairly interesting. I don't know how well you can read it, but the top line (bold) shows the average WEEKEND fluid weight gains. The smaller line, on the bottom, shows the average monthly fluid gains. As you can see, my fluid gains have been increasing, but I also recently got my dry weight moved up to 71.5 kg, so that number should balance back a little lower next month.

The other number on my lab report was hemoglobin, which was 12.1 (goal is between 11 and 12). This means that I have not been that anemic, and that I need to talk with the doctor about why I might have been feeling tired more often lately.

Also, they ran an access flow test at the treatment on Thursday. My access flow tested at 1166. This is very good. I am glad to see that my fistula is behaving correctly. Hopefully, it will soon be easier to stick, and that will make my treatments go easier.

Please continue to pray for Josh's test results. I want to follow God's will with gettng a new kidney.

Donate to the PKD foundation via Kelly's walk:
http://www.pkdcure.org/site/TR?px=1219283&pg=personal&fr_id=1455&et=VtS8dK17LcihGFwU2iBdpA..&s_tafId=6823

Thanks for coming by!

September 12 - Update

Welcome to the blog everyone. It is Tuesday, September 12, 2006, and today is a pretty good day. Let me give everyone updates on what is going on, and hopefully you’ll learn a little more about where I am at this point.

One
My friend Josh has begun his testing process. He went in to the doctor’s office on Wednesday and Thursday of last week, spending his entire day being poked and scanned. There are a few tests that he still has to send in and a couple more appointments to take care of, and then his portion of the testing will be complete. From there, all we have to do is to wait and see how they like his kidneys, and if I will like one of them.
Read it: http://joshotrades.blogspot.com/2006/09/one-weeks-time.html

Two
My friend Kelly (who lives in Minnesota) is going to participate in a PKD walk (it’s kind of like a Race for the Cure, if you are more familiar with that). 85% of the donations raised in the Walks go directly to pay for research for a cure to PKD (I’m guessing the rest goes to cover administrative costs). Her goal is $220, and I know you can all give a little bit to help her reach it. Check out her site, and make a small donation (even $5 or $10 would help).
http://www.pkdcure.org/site/TR?px=1219283&pg=personal&fr_id=1455&s_tafId=6822

Three
Now, it’s back to me, personally. Today is Tuesday, and I have another dialysis treatment today. I had my monthly blood work done last week, so I should see the results today. I am hoping that my phosphorus will still be in the safe range, which would be nice. Please pray that those results will all be in the “normal” range.

I got two sticks on Saturday, with a new technician (new to me, not to being a tech). He was able to get the needles in quickly and easily, and the machine ran at 400 ml/min for almost the entire four hours. I am glad that there are now three technicians that have had successful sticks on my upper arm fistula. This is good news for me, since not all the same technicians work every shift that I am there. I now have greater choice when it comes to getting my needles put in.

I want to thank everyone that has been praying. Keep praying that God’s will is going to be done concerning Josh’s kidney. If it is not the kidney that God has planned for me, then I do not want it. I want to follow Him in this decision. Please pray that my treatments will continue to go well and that I will get good sticks at each treatment.

Thanks for coming!

Update on Transplant Evaluation

I’m writing today to give everyone an update on the transplant evaluation that my friend Josh is undergoing. Josh called me Wednesday morning to let me know that his testing was beginning that day. Thanks to Labor Day, he did not receive his “packet” until Tuesday evening, so he wasn’t able to fill out any of the paperwork ahead of time. That just means it will be a week or so extra to get the results of all the “at home” testing returned.

He has to do a chest x-ray, an abdominal sonogram, get his Glofil test done (to test kidney function) and have a bunch of blood drawn. He also needs to have several doctor consultations (with the nephrologist, the surgery team, the social worker, and the psychologist). Once all of that craziness gets done, they will let him and I know if he is a valid candidate to give me his “extra” kidney.

Please pray for Josh this week as I am guessing that all this testing is going to be nerve-wracking. I think it would make me kind of nervous to be potentially giving up part of my body to a friend.

As for me, life continues onward. I had another treatment on Tuesday, but the sticks did not go too well. A different technician asked if she could take a try at sticking me, and I decided to give her a chance (since my fistula seemed to be behaving better recently). She put in a needle, but couldn’t quite get it to pull, so she called over one of my more reliable technicians. She removed that needle and stuck me with two good needles. The machine was able to run at 400 ml/min, so I am glad that she got me stuck.

They drew our lab work on Tuesday, so I should know by next week how well I did with my phosphorus balance. I was kind of low last month, so I tried to do a little bit better balancing my diet this month. I also ate bacon and eggs for breakfast most days of the month, so I can see if my protein levels went up at all.

Please pray that my labs will turn out well and that everything will go according to God’s plan when it comes to Josh’s testing. I want His will to be done in the kidney transplant, no matter how long I have to wait. Thanks!

4 Needles, and then 3

I am here at dialysis tonight, and I have a few minutes, so I think I”m going to update my blog. It is Thursday, August 10, and I have been to two treatments since I wrote to you last. Let me tell you how it's going.

Tuesday night, it took four sticks to get my treatment started. The technician, who does a great job, got the first needle in with no problems. She stuck it easily, and got “the flash” right away. But, because they were drawing labs that night, she did not dilute the line with saline. She spent about five minutes trying to get in the next needle, and it ended up that the area was clotted. She had to pull the needle out and find a new location. She spent another five minutes or so looking for a spot, and finally got a replacement needle in place. Unfortunately, by this time, the first needle that was inserted had become clotted. So, she had to remove it and find a new location. She went ahead and drew my labs, and then put in saline to dilute the line so it would not get clotted, too. The fourth needle was successful, and we were able to do the treatment. The machine ran at 300 for a while, but they had to turn it down to 270 after an hour or so.

So, now let me bring you to Thursday. Tonight was only three needles. The first went in easily, and was diluted with saline right away. The second needle went in easily, but pulled a clot. I think there must be several clots hiding under my skin just waiting to get out on a nice friendly dialysis needle. So, it only took about 30 minutes to get me ready, and then we got started. The machine was started at 300, and we bumped it up to 350 after an hour. It has been running successfully at 350 for about an hour now, which is great. If the stick goes well on Saturday, then I will go to 400 (which is the fastest that they like to run the machine). 400 ml/min helps you get the best possible treatment available.

They drew labs on Tuesday, so I should have the report next week. I think I have been doing well on my diet, so I want to see if all of my numbers are in range. The one that causes me the most problems is the phosphorus. Last month, it was a little low. So, maybe this month, I will be back in the middle of the range.

I had a friend ask me about Josh. He is the guy that has volunteered to be tested as a kidney donor for me. As of today, I have not heard anything new. It took about two weeks after my dad was called before he got his packet of test information. So, I am guessing that they are processing a pile of paper work for Josh, and that he will have his packet in the next week or so. I'm looking forward to his test results.

Please pray that God will prepare the kidney that he has for me, from whomever it may come. Pray that Josh's testing will go quickly and easily. And, please pray that my fistula will behave and not have so many clots (that require re-sticks).

I've got 45 minutes left on the machine. I'm going to watch “Who Wants to be a Superhero?” on the SciFi channel. So, you guys have a good night, and I'll give you more information as I get it!

Three Sticks

Well, I had a few more sticks than I would have preferred this weekend. I normally go to dialysis every Tuesday, Thursday, and Saturday evening from 4:30 – 8:30 pm (or there about). Unfortunately, I had a minor problem this most recent weekend. I went in for my normal treatment on Thursday, the 3rd. I arrived at the clinic around 4:15pm (which is normal for me) and headed over to my chair for dialysis. I requested my usual technician (who has had several good sticks with my new upper arm fistula). She had some trouble getting in the first needle, though that is not unusual. It finally flashed (which is what dialysis people call it when the blood pulses in the needle). So, she taped the needle down and began working on the other side.

The second needle was a bit more of a problem. She poked around, but it seemed that all she was able to find was a sticky mess of clotted blood. So, she thought she would try a third location. This was not altogether pleasant, but I wanted to have dialysis, so I let her continue to look for a spot to stick my fistula. Sadly, by the time this needle was properly placed (and only barely at that), the first needle had become clotted. By this time, it was about 5:30. I told them that I would just prefer to go home and come back to try again tomorrow. They charge nurse scheduled me for a 4:30 appointment on Friday afternoon and I went home to ice my arm. It did not bruise, though it still is sore today (Monday).

So, I had 3 needles on Thursday, but they just didn’t work. I went in on Friday, and had a different technician. She tried an entirely new area of my fistula and was able to get the needle to flash right away. Since the area was new, there was not any fear of coming up with clots. She is still using the same place on the lower half of the fistula, so it is at least a little more scarred over (which makes the needle stick slightly less noticeable). The treatment ran Friday night at about 250 ml/min to start, and then up to 300 ml/min for the rest of the treatment (I think).

I came back for dialysis again on Saturday (even though I had only gained about 1.5 kilos). The same technician from Thursday was there again, so she stuck me again. She put the needles in about the same places as she had used on Friday night, and they both stuck. The upper needle gave her a little trouble, and she had to move it around inside the fistula a little bit to get it right down the middle of the lane. The treatment on Saturday ran at 300 ml/min for the entire time, which is better. The best treatment that they give at our clinic runs at 400 ml/min using the 15-gauge needles. So, I just have to let my fistula grow its way up to 400 ml/min, and I should be okay. That, and I need the fistula to start accepting needles better.

Here are some prayer requests for this week, if you don’t mind:

• Pray for my friend Josh. He has volunteered to have his kidney tested as a possible donor. He has also told me that he’d be willing to go in for an experimental treatment. You can read about that here: http://abcnews.go.com/WNT/Health/story?id=2243837&page=1


• Pray for the technicians at dialysis. Please pray that they will be able to find two good spots on my fistula to stick in the needles.


• Pray that in addition to the good sticking, that we will be able to run the machine at 400 ml/min for an optimal treatment.

I’m hoping for two good weeks worth of treatments in a row. Thank you for coming by to read today. If you look over the ABC news article, don’t panic. I have not talked to any doctors about this, and I do not even know if they are testing it in the Dallas area. If they are, I will talk to the transplant team and see if they would recommend something like that for me. I know I would enjoy the possibility of no drugs (and keeping the kidney longer).

A Positive Blood

I talked to my transplant coordinator earlier this week. She said that my status is back on (since I was placed on hold after having my gall bladder removed). I also asked her to verify my blood type, and she said that I am A POSITIVE.

I sent an e-mail to the remaining three potential donors in the Dallas area that had already had their blood work completed. I asked them to contact the transplant coordinator to set up testing appointments. I am hoping that she will be able to set up testing for all three of them so that we can find a match more quickly, but who knows. She may still want to do them one at a time.

I did not have a great treatment on Saturday. The machine ran slowly, and the charge nurse came by and told me I should consider moving up to the 15 gauge needles. I told her I would think about it. I went home at my dry weight (70.5 kg), but did not feel good with a very low blood pressure and a slight temperature. I stayed up for about two or three hours after my treatment waiting on my temp and pressure to even out. We ended up going to bed late, but at least we did not have to take a trip to the emergency room.

Tuesday, I did go ahead and use the 15-gauge needles. I have been using the 17-gauge needles for almost three weeks. I was hoping my fistula would behave before moving up, but the machine does not seem to like the smaller needles with my vein. The 15-gauge treatment went well. I had them only take me down to 71.0 kg, so I think that helped me feel better. I have also stopped taking one of my blood pressure medications to see if I can get my blood pressure to even out a bit. I guess I will find out at tonight’s treatment.

So, I am on 15-gauge needles now, which is good. The machine ran at 350 ml/min on Tuesday, and I think they are going to try the full 400 ml/min today. 400 is the rate that they prefer to go. I think the machine can run faster, but they don’t normally do that.

I have to ask for my thyroid function test results today so that I can send them to my endocrinologist. I have an appointment with him on Monday, and I’d like it to be the last one I have. I think my function has leveled out (according to my results) so I should not need to see him anymore.

Please pray for the potential kidney donors. Pray that their tests will be scheduled easily and that they right person will be found to be a donor. Thanks for coming by!

After My Vacation

Hello everyone. I realize that my last post was eight days ago, but I have not been around much. Last weekend, Jenny and I took a short trip to Arlington to celebrate our 2nd wedding anniversary. We had a good time, but I did not do any computing while we were gone, so I am a little behind on my blog. I have several updates to make, and hopefully I will not forget any of them.

I went to the nephrologist’s office after work on Friday, July 14. He took out the chest catheter and bandaged me up. This catheter had been in since March 24 (almost four months). They used it off and on, and even cleaned it out once. I am glad to be finally rid of it. I can now take showers (like a normal person) and sleep on my stomach again.

Like I said, we went out of town over the weekend. I had a dialysis treatment on Saturday, which wasn’t all that bad. The technician that I got on Tuesday was new (to me). Since I have not had a lot of success recently with my needle sticks, I figured it would be okay to let someone different have a shot at my arm and see if maybe she was better at sticking me. She was not. She had to go and get another technician to stick the arterial side of my access. I don’t think it was her problem. I have determined that there is only really one or two technicians that can consistently find my arterial access.

Saturday’s treatment had lots of struggles. So did Tuesday this week. I got a decent stick, but the machine didn’t seem to like it. According to the technicians, there is not quite enough stickable area on the fistula. They have to stay one inch away from the surgical site (on both ends) and try to keep the needles from being too close together. This is difficult, as the entire fistula is only about 4 or 5 inches long. It is also slightly curved, which leaves less spots in which to insert the needles. Fortunately, someone has been able to find a spot to go in each treatment so that I can be dialyzed.

Thursday’s treatment went fairly well. I got a quick, easy stick, and the machine ran at 300 ml/min for most of the treatment (and at 290 ml/min the rest of the time). My thought is that if I can get six good treatments in a row (no machine problems, and little to no sticking problems) that I will move from 17- to 16-gauge needles. The larger needles give a better treatment, but I do not want to try and use something larger until I can get the little needles to work properly.

In other news, I have been working with the financial department at Baylor to figure out who is going to pay for my father’s transplant evaluation. It turns out that the paperwork was initially misfiled, but that the current balance is $0. This is good news, and it means that I can contact my other donors and get them started. So, if you see my name pop up on your caller ID, then it’s time. I haven’t decided if I am going to do one donor, or have all three of the people that live in town and completed their paperwork to go at the same time. I might try that, just to confuse everyone. It should be fun.

Aside from that, I have nothing too interesting to report. I have an appointment with the endocrinologist on July 31. I don’t think I will have to go back to see him after that. My TSH levels have been normal for nearly a year now, so I think my thyroid problems have subsided. It would be nice to have one less doctor to keep up with. Maybe I should try and schedule a neurology appointment and get rid of her, as well. I haven’t had any stroke problems in over a year, and maybe she can reduce some of the medications she prescribed. I’ll have to get on that one.

I have a few prayer requests for you to consider:

• Pray that the technician at dialysis will get a good stick that works well for the next several treatments(by works well, I want the machine to run at 300 ml/min and to not have arterial alarms caused by being unable to pull my blood)


• Pray that we will find the right person with the right kidney at the right time to be a donor for me

I am currently searching my records to find out what my blood type is. When I get it, I will let you know. I have had many people as me about this, and I wanted to be able to give the right answer.

Post Surgery Update

Hi everyone,

It's been about a week since I have blogged, so I apologize for not keeping everyone updated. I am recovering well from the gall bladder surgery. The holes in my belly are healing pretty well, though the one closest to my belly button did bleed a little bit in my sleep last night. It doesn't look like it is having any problems. I think the stuff that they used to close the incisions is probably just starting to wear off, and the incisions are healing fairly well on their own. I haven't had any residual pain from the surgery, so that's been good. I'm eating fairly well, though I have had a bit of upset stomach the last few days. The doctor said that would be normal as I heal from abdominal surgery.

I have some unfortunate news on the transplant front. My dad called last night to tell me that he had been contacted by the transplant coordinator. She told him that they would not be able to use his kidney for my transplant. I think it is mainly age related, though if you want the full story, I can tell you one-on-one.

This means that I will now have to have a second person get tested. I've got a fairly extensive list of people that have volunteered to be tested. All I have to do now is to contact someone on the list and see if they are still willing to go through with the testing. Then, I'll talk to the transplant coordinator and let her know who to go after next.

So, it has been a fairly busy week. I recovered from surgery on Saturday, Sunday, and Monday. I went back to work on Tuesday, and everything went well. I had my follow-up appointment with the surgeon, and he said that everything looked fine. At dialysis, they moved from using 17-gauge needles to using 16-gauge. They prefer to use the larger, 15-gauge needles. I imagine that they will start using those on Tuesday. The larger needles mean that they can run the machine at a faster filtering rate, and that I get a more effective treatment (better clearance).

The techs at dialysis have been having an interesting time with my fistula. I never have the same person more than two treatments in a row, so that makes it a little difficult to get a consistent stick. I've got three or four different areas on the fistula that have been used, so far. Sometimes, the needles end up very close together, and sometimes they are a little farther apart. I think it is easier for the technician to place the needles farther apart, and I probably get a better treatment that way, too. Hopefully, now that I am starting to get repeats on the tech that sticks me, I will get more consistent treatments.

I have a few prayer requests for the week. Please pray for my next possible kidney donor. Pray that God will help me choose the person that He has planned for my kidney donation. Pray that the testing will go easily and that we will find out who is the right donor. Also please pray for my continued recovery from the gall bladder surgery. Pray that the incisions will finish healing and that my stomach will settle down (so that I can enjoy eating again).

Thanks for coming by to read!

Started New Fistula on Saturday

I had another exciting dialysis treatment on Saturday. Normally, the dialysis treatment runs without issue for four hours, and then you go home. On Saturday night, however, I was not so lucky. My machine was having trouble with the arterial pressure. The arterial pressure is the amount of suction that the pump has to use to remove the blood from your body. If the pressure gets out of range, that can be very dangerous, so the machine stops drawing out blood. I was having problems with my arterial pressure after about five minutes on the machine.

The nurse tried everything she could think of, including laying my chair down flat and switching the lines on my catheter. Since nothing was working, she called the on-call doctor and asked if she could use one needle in my new fistula. This is the fistula that was placed above the elbow on my left arm almost seven weeks earlier. The doctor said yes, so the nurse placed one needle in my arm, and left the other in my chest catheter. The needle did not hurt too much going in, which was nice. I still had pressure problems with my catheter, and they ended up switching which side of the catheter they used about three more times during the next three hours of my treatment. The bad part of it all was that I don’t think I got as good of a treatment with the machine running slower and it stopping all the time.

Sunday morning when I woke up, I felt sick (which is not abnormal). Before we were ready to go to church, however, I began to vomit. This did not make me feel better, so we stayed home from church. I felt pretty sick for a couple of hours, and did not try to eat again until almost 11:00 am. The soup stayed down, so I figured that I was better. I did not really feel better until after I took a nap (I hadn’t slept well Saturday night). By Sunday evening, I felt better, and I did make it to work on Monday.

I have an appointment with the vascular surgeon Tuesday morning. I’m not really sure how it is going to go. Since they have started using my fistula, I don’t suppose I really need his permission to use it. I have to make him page my nephrologist so that they can talk about my fistula, but aside from that, the fistula information should be easy. I am also supposed to talk to the vascular surgeon about my gall bladder. The GI doctor thinks that it needs to come out, so I have to see if he has read my records and if he agrees. If so, that’s one more surgery that I have to schedule and another delay in the transplant (if my dad is approved as a donor).

Please continue to pray for the transplant team as they process my dad’s results. I would like to know as soon as possible whether or not he will be a good donor for me. Also, pray for my appointment with the vascular surgeon on Tuesday morning. I don’t enjoy talking about having more surgery, but I want to do whatever will be the best for me. And, pray that my arm will finish healing. The needle didn’t cause many problems for me, but the skin is still quite sensitive around the surgical incision, so the tape that holds the needle in place was kind of painful to remove. The skin was red for quite a while. I am hoping that it will heal or toughen up a little.

Thanks for reading with me today.

New Fistula Follow-Up

I just got back from the vascular surgeon. Today was my one week follow up for the new fistula that he put in (back on Monday, 4/3/06). He unwrapped my bloodied bandages, and felt around my bruised skin. He then put the ultrasound wand over the fistula (which is a few centimeters above the incision) and took a look inside. He said that he liked what he was hearing and seeing, and he said that the fistula looks like it is doing just fine.

I am scheduled to come back in two more weeks (three weeks after the surgery) to have my arm looked at again. He said that at that time he may remove the stitches (depending on how well I am healing). It is not a problem that my incision is still leaking a little blood. In fact, it’s just part of the healing process, and my arm is healing fine. It takes several weeks for a surgery like the one I had to heal completely.

So, all-in-all, life is going well. My arm is not quite stretching out completely without pain, yet, but that is part of the healing process. My dialysis has been going mostly okay recently. The only exception was a week or two ago. I had what seemed like a good treatment, but I was awake for the next hour feeling hot and nauseated. I haven’t had that problem again, and I think it may have been caused by taking off too much fluid. So, I am sticking with my 69.0 kg weight and hoping that everything works from there.

My work life is going well, too. The person that helped me get my job left the company on Friday, and I am slowly working my way in to covering his old duties. He worked on many things in a lot of areas, so it may be two or three weeks before I feel competent. The good thing is that this job is full of challenges, which is what I really enjoy.

I continue to desire your prayers this week. I have had two family members and two friends get their blood tested for kidney transplantation. The transplant coordinator should contact me soon to let me know the results and have me think about picking someone out to be fully tested. Please pray that God will show me the right person to have tested and that the testing process goes quickly and smoothly. Also pray that I will continue to do well while I am on dialysis.

The pastor at our church spoke last Sunday about bringing glory to God through our lives. He said that glory is just raising the opinions that others have about someone or something. So, I want to live my life, kidney disease and all, so that it raises other people’s opinions about God. I want to be a good example of a Christian. Please pray with me that I will continue to show those around me how wonderful God really is. Thanks!

Fistula Number Two

I told everyone that I was having fistula surgery this week, so I figured it was about time to share an update. On Monday, April 3, I had surgery done on my upper left arm (above the elbow) to put in a new AV fistula. The old fistula (which was done on my left wrist) had stopped working, and they could no longer use it for dialysis. So, the doctors mapped out my veins, and found that the best candidates were in my upper left arm.

Monday, around 11:00 am, I was wheeled into surgery. I don’t remember much after that, but when I came out, my arm was very sore and did not want to straighten out. I wasn’t worried about that, since the surgery I had previously had on my elbow had also made my arm stiff for a few days. The doctor had wrapped my arm in gauze from the elbow to the shoulder, and I could see several dark stains along the wrappings. He said to leave the bandages on and that they could change them in dialysis on Tuesday.

I stayed home from work on Tuesday to help facilitate recovery (and since I was still taking pain medication all day long). I went to dialysis, and the nephrologist came by and felt a strong thrill in my upper arm. It is still pretty sore, but the thrill is very strong and that is a good sign, especially since the thrill had completely died out near my wrist.

The nephrologist said to change the bandages, but did not want to remove the gauze that was directly on the surgical wound. He said I could do that in a couple of days. I changed out the gauze on Thursday night, and the scar is not pretty. I would guess that there is a four to five inch line of stitches holding my upper arm together. It was still bleeding a little bit, so I put on new gauze and bandaged my arm up again. It’s Friday now, and the scar area still hurts. I still cannot stretch my arm out fully without pain, but my elbow does bend all the way out now, which is good.

Let’s see, what else has happened this week. Last week (or two weeks ago) my dad and aunt sent in blood work to be run against mine to try and match up for kidney donation. This week, two non-related friends of mine sent in blood samples, and I sent in another set to be run against theirs. I spoke to the transplant coordinator today about the blood testing. She said that my dad is guaranteed a 3 out of 6 match (because all parents have at least a 3 out of 6 with their children). She did not have the results for anyone with her, so she could not give them to me over the phone. Hopefully she will call when she gets everyone tested.

She said that based on what the four donors that sent in blood test, I will probably just end up having to pick someone to get tested. I’m not sure who that will be, yet, as I have not seen the results. Please pray that God will make it obvious to me who needs to be tested for kidney donation. Thanks!

I would also ask that you pray for my arm to heal. Normally I play the violin at church on Sundays, but I cannot do that with my left arm out of commission. Pray that it will heal quickly, and that the fistula will mature properly for the next eight weeks. I grew tired of my chest catheter the last time I had one, and I know that I will soon stop enjoying this one as well.

Thank you for your continued prayers and support. Just keep praying that God will help me with my transplant decisions that I have to make in the next several weeks.

Another Fistula Surgery on Monday

I went and saw my vascular surgeon on Thursday afternoon. He had looked at the results of my vein mapping, and agreed with the technician that my larger veins were in my upper left arm (not the upper right arm). He said that the best looking vein is actually kind of deep in the arm, so it might be problematic. He said he will operate on Monday to create a new fistula. The old fistula does not need to be removed.

The surgeon will cut in a fairly large incision from the inside of my elbow, up my arm towards the arm pit (probably 6 inches long). From there, he will dig deep into my arm to get to the vein. He will lift it out close to the surface of the skin, and lay it in an arc across the top of my arm, linking it to an artery near the elbow (to create the fistula). In doing this, he will make the access easier for dialysis (on top of the arm instead of underneath), and he will bring the vein closer to the surface for easier sticking.

The surgery is scheduled for 11:00 am Monday, and should last 1 ½ to 2 hours. Jenny and I are both taking the day off (so she can drive me). I hope to be able to return to work on Tuesday, but I’m not sure. It all depends on how quickly I recover from having my upper arm taken apart (which doesn’t sound like it will be fun, but at least it will be something new that I haven’t done before).

I would really appreciate all the prayers that I can get for Monday during the surgery and for Monday and Tuesday when I am recovering. Please pray for the doctors and the surgery team, and also pray for Jenny as she has to take care of me.

In transplant news, my dad and aunt both mailed in blood that was drawn on Tuesday to be tested against my blood. My guess is that if they do not match, then the transplant office will move out and test non-family donors. Maybe I’ll find out more about that next week, too.
Thanks for coming by to read today. I’m sorry this was so short. I’ve got the surgery scheduled, and I’ll let you know more if I learn more.

I am going to attempt to attach a picture of my arm. You can seee the stiches on my elbow, and the drawing on my arm indicating where the veins are. The numbers in the picture are the width (in mm) of the vein. You can see it numbered from 71 to 44 in the picture (my elbow is on the right).

March 2006 Lab Report

Hey there everyone. It is Friday afternoon, and I have decided to update my blog and let everyone know how I am doing. Things have been going decently this week. I have felt well every day (except this morning, when I felt a little ill). I have had good dialysis treatments and the technicians have not injured my arm in a while.

I went to the cardiologist’s office on Wednesday and had a nurse take my blood pressure. I also gave her a chart from my last two weeks at dialysis. The machine takes my blood pressure every half hour, so I have a fairly complete record. Since I have been experiencing a little bit of dizziness and some occasional near-blacking out (right after I stand up, not while driving or anything), the doctor said I should try and even out my meds. So now, instead of taking one 200 mg Toprol XL once a day, I am supposed to take one 100 mg Toprol XL twice a day (once in the AM and once in the PM). I started that yesterday, so there has not been a chance for any changes yet. Give it a week and I’ll see.

I have been enjoying my new dry weight of 69.0 kg (which is about 151 lbs). I had been having more cramps at home between treatments, and those are much fewer now. It is not any fun to be awakened in the middle of the night when your foot feels like it is trying to escape from the bottom of your leg. I had one last night and it was not enjoyable. I am hoping that we can figure out my proper weight and I’ll get back to feeling normal again.

As the title of my post suggests, I got my March lab reports back yesterday. The dietician is once again pleased with my report. All of my charts fell within the accepted ranges. I am pleased because my phosphorus went back down ½ a point. So, without further ado, here are the March labs:

• ALBUMIN: 4.6 (goal is 3.8 to 4.5)


• eKdrt/V: 1.47 (goal is greater than or equal to 1.2)1.47 is down a little from last month, but still is good.What this means is that my eKdrt/V is adequate, so I am receiving enough dialysis.


• enPCR: 0.59 (goal is greater than or equal to 0.8)This says that my protein catabolic rate (protein intake) is low. It recommends that I eat more fish, seafood, chicken, turkey, lean red meat, lean fresh port, eggs, or cottage cheese. The dietician says that has always been low because my one kidney still makes urine and passes some of that out of my blood stream.


• POTASSIUM: 4.3 (goal is 3.5 to 6.0)My potassium level is normal which means that I am doing a good job with the potassium in my diet (and the 3K solution at dialysis helps, too).


• CORRECTED CALCIUM: 9.0 (goal is 8.4 to 9.5)My corrected calcium is normal.


• PHOSPHORUS: 4.5 (goal is 3.5 to 5.5)My phosphorus was 5.5 last month, so this is exciting. This means that my phosphorus is normal and that I am doing a great job limiting high phosphorus foods and taking my binders with my meals and snacks.


• HEMOGLOBIN: 12.9 (goal is 11 to 12)Hemoglobin levels show how anemic I am, so this is always nice to be high (so I have some energy)


• AVERAGE FLUID WEIGHT GAIN: 1.86 kg or 2.7% (goal is 3 – 5% of dry weight)This is acceptable, and it feels good to me.

I again did not get my full lab report. Maybe I will be able to get a hold of it Saturday (and the one from February). I’d like to see my BUN, creatinine, and URR (all of which I was told are important).

Please continue to pray for my health. The longer a patient is on dialysis, the worse it is for them (overall). They say that you best chances for a transplant to work is if you can get one with as little dialysis as possible. Please pray for the donors and for the transplant office that all of the appointments and schedules will work out right. And, please pray for healing. If God chooses to heal me rather than to use a transplant, I will be VERY excited. I know that we do not get to pick the way that God chooses to deal with our requests, but I would like to pray for healing. I know that it is possible and that God will do what He knows is best for His glory in this situation. Thank you all for coming by to read and for offering your prayers with me. I really do appreciate it.

See you next week!