Oops!

Well, it has finally happened. I received my transplant on January 11, 2007. In one week, it will have been five months. Every day, I am supposed to take several medications. Right now, I am taking medicine at 9am and 9pm.

In the mornings, I am now taking: Bactrim, Calcium+D, Myfortic, Nexium, Prednisone, and Prograf. In the evenings, I am taking: Atenolol, Calcium+D, Cerefolin, Folic Acid, Lovastatin, Myfortic, Prograf, and Zyrtec.

Now, we are coming to the oops. Last night (Sunday), it seems that I forgot to take my 9pm medications. Jenny and I were watching a movie, and I remembered to take my blood pressure and temperature like I am supposed. But, it seems that I forgot to actually take my medicine. I didn't notice until this morning when I grabbed my medicine for this morning. So, I didn't quite make it five months of being a perfect transplant recipient.

But, I did take my medicine this morning (just ten minutes ago, in fact). I think that forgetting my medicine once will help me to remember better from now on (or at least for the next five months).

In other news, the wedding I attended this weekend was very nice. My friend was married, and I enjoyed being his best man. I was surprised to hear the minister (also a friend) tell the story of how Josh had offered to donate his kidney to a close friend. He brought up how this showed his friendship and willingness to serve others. The minister mentioned that it was a good quality to see in a potential groom. And, the bride liked it, too! So, even though his kidney was not a match for me, I was glad to hear that it was a good experience for the two of them.

Here is a picture from the wedding. I didn't ask the couple if I could post it, but ... oh well.
In the picture are the minister, the groom, and me (in a tux)!

Enjoy your day -- see you next time.

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.

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!

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!

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.

Monthly Labs - July 2006

It is time, once again, for Nathan's Monthly Lab report. Yes, that's right folks, about this time every month, I get a copy of my lab reports from the dialysis clinic and I share them with you. So, sit back and relax, the fun is about to begin.

• Albumin - 4.7 (Goal is 3.8 to 4.5)
• enPCR - no recent value available
• eKdrt/V - no recent value available
• Potassium - 3.9 (Goal is 3.5 to 6.0)
  Your potassium leve is normal.
  You are doing a good job with the potassium in your diet.
• Corrected Calcium - 10.0 (Goal is 8.4 to 9.5)
  Your corrected calcium is high
  Check with your doctor
• Glucose - no recent value available
• Phosphorus - 3.3 (Goal is 3.5 to 5.5)
  Your phosphorus is low
  Your dietician will discuss your food choices
• Cholesterol - no recent value available
• Hemoglobin A1C - 5.2 (Goal is less than 7.5)
  Your hemoglobin A1C is well controlled
  This means that your average glucose (blood sugar) has been normal for the last 3 months. Good job!
• Hemoglobin - 11.0 (Goal is 11.0 to 12.0)
  You hemoglobin is normal
  Your anemia is under control
• Average Fluid Weight Gain - 2.02 kg or 2.9% (Goal is 3-5% of dry weight unless you have signs and symptoms of fluid overload).
  This is acceptable.

So, this month's report was filled with good news. For one, my Phosphorus went down from 7.5 in May, to 5.4 in June, to 3.3 in July. The dietitian said that I should adjust my phosphorus binders to try and get my number back up into the normal range. I'll see if I can figure out just the right amount to take to keep myself healthy. Taking a little bit less of the phosphorus binder will also help my calcium get back into the normal range (since the binders are basically calcium pills). As you can see, everything else is looking normal. My dry weight is 70.5 kg, at the moment, and I am thinking about having it raised to 71.0. I've had some dizziness and cramping the day after my treatment, and I think it might be fluid related.

I finally saw the nephrologist on Tuesday. I got myself scheduled for a Friday afternoon appointment to have the temp-cath in my chest removed. I will be glad to finally have those tubes out. Then I don't have to worry about it getting infected. I think the doctor had me confused with someone else when he talked to me. He asked how some other problems that I had never had were going, and I told him they were okay. I guess that's the problem with having one doctor cover 30 patients in one hour.

I talked to the insurance company this week, and they said that I needed to talk to the financial department at Baylor. I sent them my billing statement and the letter from the insurance company notifying me of payment rejection. The financial department is supposed to look over everything and see if they can figure out who is supposed to pay them. Plesae pray that this gets figured out quickly so that I can have more potential donors tested soon.

I have received many encouraging comments on the blog and direct e-mails. Thank you all for your prayers and your support. Keep posting comments and sending e-mails. I don't reply to each and every one, but they all give me a boost each time I read them.

June 2006 Lab Report

Well, it is time once again for lab reports. This month, everything sounds like good news, so be glad (and thank you for all of your prayers).

Albumin – 4.6 (goal is 3.8 to 4.5)

enPCR – 0.59 (goal is greater than or equal to 0.8)
Your protein catabolic rate (protein intake) is low. Eat more: fish, seafood, chicken, turkey, lean red meat, lean fresh pork, eggs, or cottage cheese.

eKdrt/V – 1.28 (goal is greater than or equal to 1.2)
Your eKdrt/V is adequate. You are receiving enough dialysis.

Potassium – 4.7 (goal is 3.5 to 6)
Your potassium level is normal. You are doing a good job with the potassium in your diet!

Corrected Calcium – 9.4 (goal is 8.4 to 9.5)
Your corrected calcium is normal.

Phosphorus – 5.0 (goal is 3.5 to 5.5)
Your phosphorus is normal. Great job limiting high phosphorus foods and taking your binders with meals and snacks!

Hemoglobin – 13.3 (goal is 11 to 12)

Average Fluid Weight Gain – 2.23 kg or 3.2% (goal is 3 – 5% of dry weight unless you have signs and symptoms of fluid overload).
Your nurse will discuss this with you. (Acceptable)

So, as you can see, my lab reports all looking great this month. My phosphorus went down from over 7 last month to 5.0 this month. This is a good thing, as I do not want to have squishy bones when I grow up. So, I will keep watching my phosphorus levels, and I’ll try and keep them low. I want to watch all of my labs, but that is the one that I’ve had the most trouble with.

Fistula update: my arm is still quite bruised and sore. I cannot straighten my arm out fully, yet, due to the pain. My bicep is bruised from the elbow to the clavicle (all the way over the bicep muscle). I’ve been using a heating pad and an ice pack (though not at the same time) to try and reduce the bruising and swelling. My arm has gone from a very dark patch to a big brown area of pain. I did not let them stick me on Tuesday, and I do not plan to let them stick me until my arm feels better. Thankfully, my catheter worked fairly well Tuesday night, and I was able to have a treatment at about 270 ml/min (which is not fast enough, but it’s better than the machine stopping every two minutes).

I guess that’s all for today. Keep praying that my arm will heal quickly so that I can go back to using my fistula. And, pray that when I do go back to using the fistula that it will work properly and not have any problems with the needles. Also, keep praying that we will get the payments for the transplant testing worked out with the insurance company so that I can get some more people tested. Thanks for coming by to read!

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!

Laparoscopic Cholecystectomy

I went to see my vascular surgeon Tuesday afternoon to talk about my fistula and my gall bladder. The appointment was originally set up so that the surgeon could say that it was okay to start using my new upper arm fistula. However, since my catheter was not working as well as hoped on Saturday, they used one needle in the fistula then. The appointment turned out more to be us talking about my fistula and us setting up a surgery for my gall bladder.

I’ll start by telling you about the gall bladder. I am having a “Laparoscopic Cholecystectomy”, which just means that they are using four very tiny incisions to remove my gall bladder, rather than slicing me open to fish it out. I have been having a lot of nausea and stomach pain since my kidney was removed last year (it has been almost exactly one year). The gastroenterologist had done several different abdominal scans, and she decided that my gall bladder could be the cause of my problems. A couple of stones showed up on the scans (I saw them) and it seems that removing it would be a good idea. The surgeon said that he would rather take it out now then to have it cause an infection after I get my kidney transplant and cause me to lose the graft (“the graft” is what people in the kidney transplant business call the transplanted organ, just so you know).

I have an appointment for Friday morning (11:30am) to have my gall bladder removed by the same surgeon who has done all of my fistula surgeries. By using the same surgeon, I don’t have to add any more doctors’ business cards to my already full wallet. But, it also gives me the assurance that this doctor knows about my other conditions. I also trust his surgical abilities, as he has not had any problems, yet.

Additionally, the surgeon and I talked about my fistula. My nephrologist had been worried that the new fistula was too short and curvy to be of any use. The surgeon explained to me what had happened. When he laid the vein after moving it closer to the surface of my arm, he put it in a nice smooth arc. He said that after you connect it to the artery (making the vein a fistula) that it can get “scrunched up” a little bit. So, rather than maintaining it’s perfect arc, it ends up with a small curve. He showed me the vein on the sonogram, and it seemed to be fairly straight. He said part of what the nephrologist might have seen was some bulged areas of the fistula. The fistula is a little wider in some places than it is in others, and that might feel like curves if you are in a hurry (which the nephrologist always is). The surgeon said not to worry about the vein. If the technicians do have problems with sticking it, then he can always go back in (another surgery) and tie the vein down in a straighter line. So, the nephrologist said to leave my chest catheter in for a few weeks while we start using this new fistula. That way, if the surgeon needs to put in some ties to straighten it out, I will still have an available dialysis access (regardless of the fact that it does not work too well).

The nephrologist also prescribed Fosrenol for my high phosphorus. Since my calcium was near 10, he did not want to have me add more PhosLo. Instead, he added a new medication to take after meals that will help bind the phosphorus in my diet. I will probably send that prescription off tomorrow and will have it in a few weeks. It won’t be early enough to help on my June labs, but maybe by July my phosphorus levels won’t be so dangerously high.

Please pray for me as I have surgery on Friday. Also, continue to pray for my dialysis treatments. They are running me slowly with this new fistula, and I don’t think I am getting as good of a treatment. I have not felt well since Saturday. Hopefully that will clear up as my fistula matures and it can run a faster dialysis treatment. And, continue to pray for my dad’s lab results. I will let everyone know as soon as I hear something. Thanks!

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.

Friday, May 19, 2006

My last post was last Friday. I’ve had a few adventures in the past week, so I will do my best to describe them for you. On Saturday, May 13, I had my normal dialysis treatment. At the end of the treatment, when it was time to go, I had a very low standing blood pressure of 82/53 with a pulse of 129. I stayed at dialysis for about another hour waiting for my blood pressure to get up. They gave me almost one liter of saline, but it didn’t seem to help. They told me to go to the emergency room because my temperature was up a little bit, I was not feeling well, and my blood pressure was too low. The hospital didn’t really do anything, but I was feeling better by the time I got there. We were in the ER for about three hours before we went home.

Sunday was a pretty good day. I completed my 30-day heart monitor and got to mail it back in. My dad came down to Dallas to be tested as a kidney donor. He had tests all day Monday and Tuesday to find out if he will be a compatible match for me. Please pray that the test results come back quickly so that they will know what they want to do (either use my dad or test another donor).

On Monday, I had an appointment with my cardiologist. I told her of my multiple trips to the ER in the past 30 days and of my low blood pressure, and she decided to adjust my medications again. She changed my Diovan from 120 mg per day to 80 mg per day. She told me to continue taking 12.5 mg of Toprol XL per day as well. I started the new, lower dosage on Tuesday, so I haven’t had a lot of chances to see how if it is helping. The nephrologist also made a change at dialysis, so the combination of the two may be what is working for me (and I am fine with that).

On Tuesday night, I mentioned to the nephrologist about visiting the ER and having the low blood pressure at the end of my treatment. He suggested that I start using UF profile 2 for my treatments. Now, I did not know what that was, so I asked. It is a setting on the machine. Profile 1 is the normal setting. If I come in to dialysis and need to have 2000 ml of fluid removed, then Profile 1 will remove the fluid at a rate of 500 ml per hour for the whole treatment. Profile 2 would start out removing 1000 ml per hour, and drops throughout the treatment so that I am only having 300 or 400 ml per hour removed at the end of the treatment. I would give you the exact formula, but I didn’t record the starting and ending UF rate. When I do, I will plug it in to a y=mx + b type equation and let you know (I know you are excited).

Suffice it to say, the combination of less blood pressure medication and a new UF profile on my dialysis machine have helped. My final blood pressure on Tuesday night was 110/62 and my final pressure on Thursday night was 95/61. I left both nights feeling fine. Oh, and UF is ultra-filtrate, which is the amount of fluid that the dialysis machine removes during your treatment (for those of you that aren’t on dialysis).

I have a few prayer requests for the week. Pray for my dad’s test results. Pray that we will get them quickly so that we will know what to do. Pray for my doctor’s appointment on Tuesday. I go to see the surgeon, and we will be talking about using my fistula and about gall bladder surgery. If I have surgery, it will delay the transplant by about a month (if my dad is a compatible candidate). Pray that all will go well with whatever the doctors decide that they need to do. Thanks for coming by to read 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).