Wednesday, January 31, 2007

Wednesday Update and Full Lab Report: 2007-01-22

Wednesday Update:

I just got back from the fitness center. I walked for 25 minutes a total of 0.77 miles. Hopefully, this will help me get some more sleep tonight than I did last night. We ran some errands yesterday, but I guess I did not burn off enough energy.

Jenny thinks that I am hyperactive. She thinks that it might be caused by my medications, but I think she is just crazy. None of my drug warnings list hyperactivity as a possible side effect. The only thing even close is the Cellcept, which warns of possible "mood changes" as a side effect. Some of the other medications list "mood changes" as a dangerous side effect, but I doubt any of those are causing problems. I think she just forgot how I used to be before I got so sick back in 2005.

As promised by the title, here is the full lab report from Monday the 22nd. This was the second lab report that we did at the clinic following the transplant. The Friday lab came through just fine, so I am posting this one for the medically inclined.

PROCEDURE RESULT UNIT REF RANGE
[COMP METABOLIC]
SODIUM 142 MEQ/L (136 – 145)
POTASSIUM 4 MEQ/L (3.6 – 5.0)
CHLORIDE 108H MEQ/L (98 – 107)
CO2 26 MMOL/L (22 – 30)
ANION GAP 8 MEQ/L (6 – 16)
GLUCOSE RANDOM 80 MG/DL (75 – 110)
CREATININE 1.0 MG/DL (0.7 – 1.2)
BUN 11 MG/DL (9 – 20)
BUN CREAT RATIO 11
(7 – 25)
CALCIUM 9.3 MG/DL (8.4 – 10.2)
TOTAL PROTEIN 6.4 G/DL (6.4 – 8.3)
ALBUMIN 4.1 G/DL (3.5 – 5.0)
GLOBULIN 2.3L G/DL (2.4 – 3.5)
A/G RATIO 1.8
(1.1 – 2.2)
BILIRUBIN TOT 0.3 MG/DL (0.2 – 1.3)
ALK PHOS 58 U/L (40 – 129)
AST 16 U/L (10 – 50)
ALT 43 U/L (10 – 50)
[MAGNESIUM]
MAGNESIUM 1.6L MG/DL (1.7 – 2.6)
[CBC]
WBC 6.0 K/UL (4.5 – 11.0)
RBC COUNT 3.17L M/UL (4.5 – 6.00)
HEMOGLOBIN 10.8L G/DL (13.5 – 18.0)
HEMATOCRIT 31.2L % (40.0 – 52.0)
MCV 98.4 FL (80.0 – 99.0)
MCH 34.1H PG (27.0 – 33.0)
MCHC 34.6 % (32.0 – 36.5)
PLATELET COUNT 237 K/UL (140 – 440)
RDW SD 53.5H FL (37.0 – 51.0)
RDW DV 14.9H % (10.0 – 14.5)
MPV 10.1 FL (8.5 – 12.0)
SEGS 53 % (45 – 75)
LYMPHOCYTE 37 % (20 – 45)
MONOCYTE 9 % (2 – 9)
EOSINOPHIL 1 % (0 – 5)
BASOPHIL 0 % (0 – 2)
SEGS ABS 3.18 K/UL (2.03 – 8.25)
LYMPHOCYTE ABS 2.22 K/UL (0.90 – 4.95)
MONOCYTE ABS 0.54 K/UL (0.09 – 0.99)
EOSINOPHIL ABS 0.06 K/UL (0.00 – 0.55)
BASOPHIL ABS 0.00 K/UL (0.00 – 0.22)
ABS NEUTROPHIL 3.18 K/UL (2.07 – 8.80)
MANUAL BAND 0L % (1 – 4)
MAN METAMYELOCY 0 % (0 – 1)
[RT UA]
URINE COLOR YELLOW

URINE CHARACTER CLEAR
(CLEAR)
SPECIFIC GRAVITY 1.025

URINE PH 6.0

URINE PROTEIN NEGATIVE
(NEGATIVE)
URINE GLUCOSE NEGATIVE
(NEGATIVE)
URINE KETONES NEGATIVE
(NEGATIVE)
URINE BILIRUBIN NEGATIVE
(NEGATIVE)
UR OCCULT BLOOD TRACE
(NEGATIVE)
URINE NITRITE NEGATIVE
(NEGATIVE)
UR UROBILINOGEN 0.2 EU/DL (0.2 – 1.0)
LEUKOCYTE ESTER NEGATIVE
(NEGATIVE)
URINE WBCS 0 – 1
(0 – 1)
URINE RBCS 0 – 1
(0 – 1)
EPITHELIAL CELL RARE

BACTERIA LIGHT
(ABSENT)

There you have it. That is how my Wednesday is going. We have gotten meals from our ABF a couple of times this week, and that is great. I am looking forward to a few more this week. Please pray that I will get some more sleep tonight. Hopefully the exercise will help.

Restoril vs Lunesta in the Quest for Sleep

Good morning everyone. It is 4:00am on Wednesday, January 31, 2007.

4:00 am!?? What are you doing up at such a crazy time? I thought you told us that you were taking sleeping pills to help you fall asleep and stay asleep? Weren't you just telling us that the other day?

Oh, thank you for asking. For those of you wondering why I am not sleeping, allow me to explain. I am currently taking 20mg a day of a steroid called Prednisone. Prednisone is an immunosuppressant. It is also a synthetic corticosteroid drug. That means that it gives your body the signal to "wake up" after a good night's sleep. Unfortunately for me, it gives that signal all day long, including when I want to be sleeping. So, like many transplant patients, I needed something to help me sleep.

So, I am taking a medication that is supposed to help me sleep. When the doctors discharged me from the hospital, they gave me a 30-day supply of a medication called Temazepam (15mg). Temazepam is the generic version of Restoril, for those of you interested in medications. The medication warnings that I received with this medication said that it was not intended for use longer than 7 to 10 days. I took the Temazepam once we got home from the hospital, for about seven days, but I did not want to take much more of it. It did help me to sleep, and I was thankful for that. But, being a reasonable person, I asked the doctor what different medication I could take over the longer term.

At the clinic on Monday, the doctor gave me a prescription for Lunesta. That's the one you see all the commercials on TV for with the butterfly that helps you sleep. Lunesta is designed for long-term use with less chance of addiction. So, I started taking these 2mg capsules Monday evening. I slept fairly well Monday night, waking up only to go to the bathroom (which is still normal, given the new kidney and all). I went to sleep between 10:30pm and 11:00pm, and awoke a little before 7:30am. This is what I would classify as a good night's sleep.

Having enjoyed a good night of sleep on Monday, I took the Lunesta again on Tuesday night. I took it at 9:00pm with all of my other medications, just like on Monday night. We went to sleep around 10:00pm, which is about normal (for now). Again, I fell asleep fairly easily, and did not awaken until about 2:15am to go to the bathroom. Unfortunately, that was it. I laid back down, ready to fall asleep again. That didn't happen. By about 3:30, I gave up. I came out to the laptop to read my e-mail and to blog.

I find that blogging is a bit of a therapeutic kind of getting things off of my mind. I am hoping that tonight was a fluke, and that the Lunesta will work better for me Wednesday night. Maybe I did not do enough walking on Tuesday. We ran several errands, but I don't know if I got enough exercise. I will need to be better about that today and make sure that I get over to the fitness center to spend some time on the treadmill.

I don't know if I will stay on the Lunesta. It is $21.70 cheaper (every three months) than is the Restoril. And, it does not have the addictive side effects. However, if it does not provide me with any sleep, then it is still $118.86 too expensive (for a 90-day supply). I guess if I keep taking it all week, and it does not help, I will ask the doctor for something new. Ambien is only $95.49 for a 90-day supply, so maybe I will use it. Who knows?

Prayer Requests:
  • Pray that the Lunesta will work for me so that I can get a good night's sleep again. Or, if Lunesta is not right for me, pray that the doctor will be able to choose something that will work for me (with my other medications and my aversion to addiction).
  • Pray that I will continue to heal. The staples are scheduled to come out on Monday, and I don't want there to be any problems between now and then.
  • Pray that my paperwork will move quickly at work so that I can be fully approved to work part-time from home while recovering and making weekly clinic visits. I want to get back to work not only because I have a need to be productive, but also because I am a useful member of the group and want to contribute.
  • Continue to pray for the donor's family. It has been about three weeks since their loss, and they are probably still dealing heavily with the grief process.
Thanks for listening to my early-morning rant. Hopefully there will not be any more of these!!

Tuesday, January 30, 2007

Full Lab Report: 2007-01-19

I had some success posting a table in the blog the other day, so I decided to post my FULL lab report from Friday the 19th. Keep in mind that these results were taken only eight days after my kidney transplant. I hope this looks OK on everyone's computer. If not, I guess I won't post any more of these reports.


PROCEDURE RESULT UNIT REF RANGE
[COMP METABOLIC]
SODIUM 141 MEQ/L (136 – 145)
POTASSIUM 3.9 MEQ/L (3.6 – 5.0)
CHLORIDE 105 MEQ/L (98 – 107)
CO2 28 MMOL/L (22 – 30)
ANION GAP 8 MEQ/L (6 – 16)
GLUCOSE RANDOM 87 MG/DL (75 – 110)
CREATININE 1.0 MG/DL (0.7 – 1.2)
BUN 14 MG/DL (9 – 20)
BUN CREAT RATIO 14
(7 – 25)
CALCIUM 9.1 MG/DL (8.4 – 10.2)
TOTAL PROTEIN 6.0L G/DL (6.4 – 8.3)
ALBUMIN 3.8 G/DL (3.5 – 5.0)
GLOBULIN 2.2L G/DL (2.4 – 3.5)
A/G RATIO 1.7
(1.1 – 2.2)
BILIRUBIN TOT 0.4 MG/DL (0.2 – 1.3)
ALK PHOS 51 U/L (40 – 129)
AST 19 U/L (10 – 50)
ALT 39 U/L (10 – 50)
[PHOSPHORUS]
PHOSPHORUS 2.0L MG/DL (2.7 – 4.5)
[GCT]
GGT 27 U/L (8 – 61)
[MAGNESIUM]
MAGNESIUM 1.6L MG/DL (1.7 – 2.6)
[HEMOGLOBIN]
FK506 11.6 NG/ML
[LIPID PROFILE W]
CHOLESTEROL 133 MG/DL (0 – 200)
TRIGLYCERIDES 269H MG/DL (0 – 150)
[LIPID PROFILE W]


HDL 52 MG/DL ( > 40)
LDL CHOLESTEROL 55 MG/DL (0 – 100)

<100 mg/dL OPTIMAL

100 – 129 mg/dL Above Optimal

130 – 159 mg/dL Borderline High

160 – 189 mg/dL High

>= 190 mg/dL Very High
VLDL 26 MG/DL (5 – 45)
CHOL/HDL RATIO 2.6


<> to prevent progression

<> to induce regression


In blog related news: Blogger recently moved out of Beta testing and is now in full release. Once they changed over, I got a new template, and set up a few different things. I noticed that now, Blogger allows you to LABEL your posts. So, I filtered through my 169 old posts, and added labels to everything. It has taken a couple of weeks, but now all of my posts are labeled with at least one label.

So, if you want to do some more specific searching, you can click on the labels on the left side of the blog to get more specific posts. Hopefully they will be fairly informative (or not, it's up to you how you feel).

Enjoy the full lab report. If all looks good on the web, then I will post the rest as we move along through the week together. Again, I do not have another clinic appointment until next Monday, at which time the doctor is supposed to remove my staples. I am looking forward to having them removed, as they are irritating (physically irritated by my clothing).

Thanks for reading today!

Monday, January 29, 2007

Monday Clinic

Welcome to Monday everyone. I am trying something new with my blog post today, so if it looks strange, please let me know. I do not want there to be any problems, so if this shows up strangely, then let me know and I will not post via this method again.

I went to Fort Worth again today for another clinical follow-up appointment. They again drew blood and urine and checked to make sure that I am not rejecting the kidney and that I am still healthy. Here are a few of my blood count numbers, for those of you that are interested:

PROCEDURE
RESULTS
UNITS
REFERENCE RANGE
Potassium
4.4
MEQ/L
(3.6 - 5.0)
Creatinine
1.0
MG/DL
(0.7 - 1.2)
BUN
12
MG/DL
(9 - 20)
Hemoglobin
14.2
G/DL
(13.5 - 18.0)
Magnesium
1.7
MG/DL
(1.7 - 2.6)

As you can see, my creatinine is staying steady at 1.0 (which is absolutely wonderful). This means that my new kidney is working properly at removing the waste products from my body. Also, my hemoglobin is up to 14.2 (which is in the normal range). That means that the kidney is producing enough of the hormone required to get my body to produce red blood cells to carry oxygen. My magnesium is also up to the normal range, so I guess I will not have to take supplements for that, yet. The doctor examined my incision, and said that the staples are looking just fine. He said that we will not have to come back on Friday, and that we should return to Fort Worth on Monday to get the staples removed and to be transferred to the Dallas clinic. He said that in Dallas, I will be seen by a team of medical professionals, rather than just one doctor. This will not be a problem, as long as they all review my chart before asking me anything crazy.

I had the doctor write me a couple of prescriptions. He said that I am going to be on the Valcyte and Mycelex for a total of three months. He said I will need to take the Bactrim for a total of six months, so I had to get a 90-day prescription for that one (since my pharmacy benefits only cover a total of three fills of any one prescription at the retail pharmacy). In order to take more than three months worth of something I have to get a mail-in prescription. He also wrote me a prescription for my Cerefolin (the vitamin I take due to my stroke) since I was out of refills on that one. I also had him switch me from Restoril to Lunesta (the butterfly commercials, you know the ones) for a sleeping pill. I tried not taking the Restoril the last couple of nights, but I didn't really get much sleep last night, so I think the Prednisone is still causing some sleeplessness. I think I will be on the Lunesta until the Prednisone gets down to a manageable level (one that my body can tolerate and still sleep on). The Prednisone reductions begin one month after the transplant, and I think the reduction schedule is only like 1/2 mg per month or something similar.

The nurse called this afternoon to tell me to change my Prograf from 3 1/2 mg twice a day to 3mg twice a day. I guess the Prograf level in my blood was still too high, so the doctor decided to reduce my dosage again to keep me balanced. Like any medication, too much can be just as bad as too little, and they monitor this one very closely, so it must be important. It is an immuno-suppressant, and I will be on it the rest of my life, so I want it to be correct.

So, like I said, we do not have clinic again until next Monday (February 5). The doctor said that he will be taking out the staples then, as long as everything looks OK. He will also be transferring us to the Dallas Transplant Institute. I realize I said that earlier, but I thought it was good news, so you get to hear it twice.

I stopped by work today to deliver my doctor's note. He has approved me to work up to 20 hours per week from home while I am going to the clinic on a regular basis. He said I could physically go back to work as soon as one month after the transplant, but I might want to work from home since I only get 5 sick days per year, and I don't want to use them all up going to the clinic twice a week or so. I think once I get down to once-per-month appointments, I will probably be able to go back to work. The minimum amount of time we can use for sick leave is 1/2 day, meaning I can go to 10 monthly clinic appointments with my allotted sick leave.

Please continue to pray that I will stay healthy and not have any problems with this kidney. Pray that all of my tests go well as I continue to go to the clinic. Pray that the surgery incision is healed enough so that the doctor can remove the staples on Monday. And, continue to pray for the donor family as they deal with the grief of their loss.

Thanks for reading today. Again, let me know if the post is strange-looking or unreadable, since I tried something new today.

And, if you are new to the blog and would like to receive an e-mail each time I update, you can either enter your e-mail address in the box on the right-hand side of the page, or you can send an e-mail to:
nathans-pkd-blog-subscribe@googlegroups.com

Sunday, January 28, 2007

I Got to Go to Church Today

Well, it is Sunday today, and I was able to attend church this morning. The doctor told us on Saturday that it would be safe enough for me to go back to church this week. I was pretty excited to get to go back to church after having two weeks off.

We saw several people that have been praying for me during this whole ordeal. It was good to let people know that I am really feeling much better and to show them my recovery. I feel like God has been healing me very quickly, compared to things that I have read about other transplant patients. I guess the averages are just that, and not specific to any one person.

Everyone has been very encouraging to us during this time. Our Adult Bible Fellowship class has offered to bring by meals next week, which will be really nice. It's good to not have to worry about cooking while we are still doing some traveling back and forth to Fort Worth. We have two appointments next week, one on Monday and one on Friday. We have to be at the hospital at 9:00 am, and we should see the doctor around 10:00, like we did last week. The doctor told us that he was planning to take out the staples on Friday and then he would transfer me to the Dallas Transplant Institute (which will be much closer).

I'll update again tomorrow after we get home from Fort Worth. Hopefully there will be more good news (which is all we have been hearing so far, so it is all I expect to hear). Thanks for coming by today. The post was short and sweet, enjoy!

Saturday, January 27, 2007

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.

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




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:


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.

Friday, January 26, 2007

Friday Clinic

It has been a long day, and I am now (finally) home for the weekend. The doctor changed our clinic appointments from Monday, Wednesday, and Friday, to Monday and Friday. That means that we will not have to live in Fort Worth next week. We will just drive down for the two appointments and then head back home after each one. It will make for some early mornings, but I think it will be better than having to stay out of town and live in a hotel.

I will start out with a few of my lab numbers from this morning:
  • Potassium was 3.9 (down from 4.3 on Wednesday)
  • Creatinine remains at 1.0
  • BUN was 14 (up from 9, but still an excellent number)
  • Glucose was 82 (which means that I should be fine as far as blood sugar goes)
  • Hemoglobin is up to 12.7 (the normal range is 13.5 to 18)
I will probably stop tracking the glucose since there is not a problem with that anymore. The only other abnormal reading that I have been getting is my magnesium. It was 1.6 on 1/19, 1.6 on 1/22, 1.4 on 1/24, and 1.5 today. A normal reading is between 1.7 and 2.6 mg/dl. Following is what Wikipedia has to say about magnesium:

Magnesium ion is essential to the basic nucleic acid chemistry of life, and thus is essential to all cells of all known living organisms. Many enzymes require the presence of magnesium ions for their catalytic action, especially enzymes utilizing ATP, or those which use other nucleotides to synthesize DNA and RNA ... Although magnesium is present in many foods, it usually occurs in dilute form. As with most nutrients, daily needs for magnesium are unlikely to be met from a single serving of any single food. Eating a wide variety of foods, including five servings of fruits and vegetables daily and plenty of whole grains, helps to ensure an adequate intake of magnesium.

So, the doctor said that if my magnesium stays too low, that I would have to start taking some magnesium supplements.

In addition, I had a bone density scan done on Thursday. This scan is done on all new transplant patients, to get a base line of your bone density. The doctor said that I had a lowered bone density, a condition called "osteopenia."

What is Osteopenia?

Osteopenia refers to bone mineral density (BMD) that is lower than normal peak BMD but not low enough to be classified as osteoporosis. Bone mineral density is a measurement of the level of minerals in the bones, which indicates how dense and strong they are. If your BMD is low compared to normal peak BMD, you are said to have osteopenia. Having osteopenia means there is a greater risk that, as time passes, you may develop BMD that is very low compared to normal, known as osteoporosis.


For this condition, the doctor said that I would need to take calcium supplements with Vitamin D. He prescribed OsCal-D (500mg) to help increase my calcium levels and hopefully add a little bone density. It seems most likely that the prednisone can cause a lowered bone density. So, they are going to try and head off the problem early by putting me on calcium supplements. I guess we will be heading to the pharmacy tomorrow to see what we can find. I will be taking one of these pills twice a day for the next six months, at which time they will re-assess my bones and check the density again.

Speaking of medication, the post-transplant nurse called me this afternoon to alter my Prograf. Currently, I am taking 4mg twice a day. They said that my Prograf level was at the high end, so they lowered me to 3.5mg twice a day. The new 1/2 mg pills are on order and should be here in a few days. Until then, I will take 4mg in the morning and 3mg in the evening. Hopefully that will help balance out my levels (once I get the correct dosage in my system). It seems that Prograf is just one of those medications that has to be adjusted on a per-patient basis in order to keep the proper amount in your blood.

I also went by my old dialysis clinic this afternoon when we got back to town. I dropped off my Phoslo and Fosrenol medication to the clinic. Since my pharmacy requires me to order 90-day supplies of my medications, I had quite a bit of this phosphorus-blocking medication on hand. I wanted to be able to share this medication with other people that might have a harder time paying for much-needed medications. So, I dropped the medications off with the dietitian to distribute on an "as needed" basis. I know that I benefited from free medication before I started dialysis. I was on a "less good" health care plan that did not want to pay for Epogen shots (around $1500 each). The nephrologist I had at the time happened to have 4 shots in his office that a patient had dropped off after starting dialysis. One good deed and all ...

One other change. For those of you that receive my blog via e-mail, you will continue to receive it. I was just getting a large number of messages that I was forwarding each time I updated the blog, and my e-mail was about to start complaining. So, instead, I created a mailing list on Google Groups. Those of you that were receiving the mail before will continue to receive it in the exact same way. The only difference you will notice is a short footer explaining how you can subscribe or unsubscribe to the mail outs. You can forward this to your friends that want to be a part of the mail-outs. They can then subscribe if they want to. Also, on the upper right hand side of the blog page, you will notice a white block. You can put your e-mail address in this box and subscribe if you want automatic mail-outs whenever I update the blog.

So, let me know if there is a problem with your automatic mail-out. Otherwise, enjoy the new method of delivery (which should not show much change for you).

Please continue to pray for the following:
  • Pray for my continued recovery from the transplant surgery
  • Pray that the staples holding my incision closed will be ready for removal on Friday (that is when the doctor wants to take them out)
  • Pray for the family of the kidney donor, as they are still grieving the loss of a family member
  • Pray for my sleeplessness. The prednisone causes insomnia and I am taking sleeping pills. I would like a less addictive solution for this problem.
Thank you for reading the blog today. Let me know if there are any problems. And, feel free to sign up (if you are a new reader and want to receive automatic updates).

Wednesday, January 24, 2007

Wednesday Clinic

Today is Wednesday, and I had another clinical follow-up after my kidney transplant. We went in this morning around 9:00 to have blood and urine taken. Then it was time for some quick breakfast and a long wait in the waiting area. By about 10:30, they called us back to see the doctor.

He said that everything is looking great. He was ready to not see me again until next week, but I have a bone density test scheduled for Thursday (in Fort Worth) and we are booked in the hotel until Friday, so we said that we will just go ahead and come in to the clinic on Friday, as well.

Next week, however, we will only be driving to Fort Worth on Monday and Friday. This means that we will not be staying in a hotel, and that we will get to spend some time at home. I am sure that the TiVo will appreciate this, as it is probably getting full. Also, it will be nice to sleep at home in my own bed and sit on my couch to watch TV (instead of being in the hotel all day).

The doctor said that I am healthy enough to go ahead and be in public. So, I think that Jenny and I will be attending church this Sunday. We might have to sit over in the big empty section of the Worship Center, but that will be okay. At least we will be able to get back to church and start feeling like normal people again. I have not decided if we are going to go to our Adult Bible Fellowship class (Sunday School) on Sunday or not. It kind of depends on how I feel after the service.

Let's see ... what else is interesting? One of my staples pulled out on one side, so the doctor removed it and gave me a couple of "Steri-Strips" to go in its place. For those of you who do not know, Steri-Strips are little pieces of tape that they glue to you after the staples are removed. They help keep the surgical wound closed after the staples have been removed ... and they normally just fall off on their own. The doctor said that the rest of the staples should be able to be removed in about two weeks. After that, they will transfer my care to the Dallas Transplant Institute, so that we do not have to drive so far for our appointments.

The doctor was also of the opinion that, as long as things continue as they are going, that I should be able to return to work around February 12. I will have to confirm this with my new doctor that I am assigned to in Dallas, but I do not see that as being a problem. As long as I am feeling well, I would like to get back to work as soon as I can. It will help me feel like I have gotten back to normal, and that is what the kidney transplant is all about.

Here are the important lab numbers from today's clinic:
  • Potassium was 4.3 (range is 3.6 - 5.0)
  • Creatinine is 1.0 (range is 0.7 - 1.2)
  • BUN is 9 (range is 9 - 20)
  • Glucose is 83 (range is 75 - 110)
  • Hemoglobin is 11.7 (range is 13.5 - 18.0)
    The hemoglobin is a little low, still, but better than it was on Monday.
As far as I know, my medication levels are all still OK. The doctor did not change anything today, and I have not gotten a call from the clinic telling me to change anything. The change that the doctor made in my Cellcept® dosage on Monday has seemed to help my stomach quite a bit. I have enjoyed that much more than before.

For those of you that are interested, here is a list of medications I am currently taking:
  • Cellcept® - 1500mg / day: prevents rejection
  • Prograf® - 8mg / day: prevents rejection
  • Prednisone - 20mg / day: prevents rejection
  • Bactrim® (a generic version) - 400mg/80mg / day: treats/prevents bacterial infections
  • Protonix® - 40mg / day: treats/prevents stomach ulcer/heartburn
  • Valcyte® - 900mg / day: treats/prevents viral infections
  • Mycelex® (a generic version) - 40mg / day: treats/prevents fungal infections
  • Restoril® (a generic version) - 15mg / day: treats insomnia
Those are the "new" post-transplant medications that I am taking. In addition, I also take:
  • Atenolol - 25mg / day: a beta blocker to lower blood pressure and heart rate
  • Zyrtec® - 10mg / day: for seasonal allergies
  • Lipitor® - 10mg / day: lowers cholesterol
  • Cerefolin® - PAL/M5 (two per day): B12/LM-Folate/B6/B2 vitamins to lower homocystine levels
  • Folic Acid - 800mcg / day: to lower homocystine levels
So, all of that is supposed to keep me healthy. I imagine that it will, as the doctors have been doing this for much longer than I have. They eventually hope to get me off of the Bactrim®, the Valcyte®, and the Mycelex®. The doctor said I should probably be on those for a year at the most. They will also lower the Prednisone dosage (maybe as low as 10mg per day), which I hope will help with the insomnia (meaning I could get off of that drug, too).

The doctor pointed out something I found interesting. For the first time in my life, being a Caucasian male has some benefits. I mean, it would be great if I was running for political office, but it seems it is also good for transplant recipients. Us white boys seems to have less rejection than the rest of the population, so we don't get quite as many immunosuppressants on our first donated organ. That is good for me, as it makes me able to be back to normal sooner.

The only other thing we had been asking the doctor was about fathering children. The kidney transplant education packet that I received said that men should not father children for one year after receiving the new organ. Jenny and I had wondered why this was. The doctor told us that there was a 3% - 5% greater chance of there being genetic abnormalities as a result of the high levels of medication in my system. Just something interesting I thought I would pass along. Granted, I have a much better chance (50%) of passing on Polycystic Kidney Disease to any child I father ... so who knows?

That's it for today. Please continue to pray for my recovery. And, keep praying for the donor's family. Thank you for reading!

Monday, January 22, 2007

Monday Clinic Report

Good Monday everyone. Today was my second post-transplant clinic appointment. They drew blood in the morning (they found a vein on the second stick). They only needed three vials today instead of four. They also did a urinalysis. I am still not used to those, after going so long without having to do that.

The doctor looked me over and said that everything was looking good. Here are some of the lab numbers:
  • Potassium was 4.0 (range is 3.6 - 5.0)
  • Creatinine is 1.0 (range is 0.7 - 1.2)
  • BUN is 14 (range is 9 - 20)
  • Glucose is 80 (range is 75 - 110)
  • Hemoglobin is 10.8 (range is 13.5 - 18.0)
    The hemoglobin is a little low, still, but that is normal for a new kidney.
The doctor looked at my incision. There is a little bit of pinkness around it, and it is still a little swollen, but he said not to worry. There was one staple that he said might be a concern, but no problems today. He was so encouraged that he offered to let us skip our Friday appointment.

I told him that we would go ahead and come, since we have already gotten the hotel room for the entire week. Besides, I have to go on Thursday to have a bone density scan done (while I am here). So, we will have clinic again Wednesday and Friday of this week. But, it sounds like he might reduce the number of appointments that we have next week.

We will continue to have clinic in Fort Worth until the staples are taken out. After that, they will transfer us to Dallas Transplant Institute (DTI) in downtown Dallas. That will cut our drive in half, so we will not be needing to get a hotel (and we get to stay home).

The doctor said that the prednisone was the most likely cause of my sleeplessness. He said that your body produces a hormone (called cortisone) when it is time to wake up, and that prednisone is basically an artificial cortisone. So, it makes you want to stay awake all the time. He said that the sleeping pills should not be a problem and that if I need them for more than a few weeks, he would prescribe a longer-term (less addictive) sleeping pill. He also said to get more exercise (which was already a goal anyway). That should help out with sleeplessness later, too.

I received a comment asking about my immunosuppressant drug levels. My Prograf® levels at my Monday lab were 11.6. They did not make any changes to my dosage (4mg twice a day). It takes longer to get a result on your Prograf® levels than it does for the rest of the blood. If they ever need to change, then they said they will call between 2pm and 4pm. I should know this afternoon if I need to make any changes.

The doctor did make one medication change. I was taking 1000mg of Cellcept® twice a day. I was also having a lot of stomach irritation after eating. The doctor said that the Cellcept® was the most likely cause. Cellcept® is one of the immunosuppressant medications that I am on. He said it might help if I change to taking 500mg three times a day (for a total of 1500mg instead of 2000mg). I am going to start that tomorrow. I'll have to wait and see if it helps.

Well, I think that is all of the updates I have for today. Thank you for coming by. Please continue to pray that my body will not reject the kidney. Also please pray for the donor's family, as they are still grieving a loss. Thanks for reading!

Sunday, January 21, 2007

Clinic Week II

We have clinic appointments on Monday, Wednesday, and Friday in Fort Worth this week. We have decided to come to Fort Worth and stay in a hotel this week. We checked in this afternoon, and our room has a microwave and refrigerator, so we can keep water cold and make some popcorn.

I am looking forward to my second lab appointment, so that I can start collecting lab reports to compare and see how I am faring. The numbers were all just on a chart in the hospital, so I did not really get to take those home.

I updated the forms that the hospital gave me. I had a 2-page form of medication reminders. I had a single page for health record information. I got on the computer, and created a one-page document that has my medication list/reminders and has the blood pressure/weight/temperature/etc for the health record. That way, the doctors and I can look in one place and see all the information. I am not a big fan of flipping through several pages just to find some information.

So, nothing new today. I am still feeling well (though a little short on sleep). I think I am going to take some sleeping pills this week and see if that helps. I also plan to ask the doctor about that tomorrow. But, I am feeling healthy, and there have not been any problems. I have not needed any pain medication in several days, and about the only pain left is just around the incision. There is still some swelling (fluid retention) around my waist and in my face and legs. But, all that should go away in time.

Tomorrow, I hope to have much more information. Enjoy!

Friday, January 19, 2007

My First Post-Transplant Clinic Visit

Good afternoon everyone. And, if I don't see you again, good evening, good night, and good morning. We are home from Fort Worth for the weekend. I had my first post-transplant clinic appointment today, and everything is great!

We arrived at the hospital around 9:00 am for blood work. The phlebotomist had a little bit of trouble getting the needle into my vein ... so that wasn't so great. I don't see any bruising yet, so maybe it felt worse than it was. She drew four vials of blood, and then had me give a urine sample. I have to say, it has been a long time since I have had a urinalysis done. Then, I was able to take all of my medication and go eat breakfast. Luckily, our hotel had a continental breakfast, so I was not without some food.

We then headed over to the clinic waiting area to do just that -- wait. Our "appointment" was scheduled for around 10:00, but the doctors said that was merely an estimate. They have to process the blood work and get results before they can actually be helpful in seeing you. We went in around 11:30 to see the doctor. He had all of my lab results (which I can share a portion of below) and said that I was doing great. He put me back on my allergy medication, as well as my high blood pressure medication and some of the meds I got on after my stroke. He also doubled my dosage on the anti-viral medication, which he said was a normal dose.

All in all, I am doing well. My incision is healing as the doctor expected. I am healthy, and moving around, and feeling much better. The numbers on my lab reports looked pretty good, and I expect them to stay in line as I feel great.

Here are some of the important lab numbers:
  • Potassium was 3.9 (range is 3.6 - 5.0)
  • Creatinine is 1.0 (range is 0.7 - 1.2)
  • BUN is 14 (range is 9 - 20)
  • Phosphorus is 2.0 (range is 2.7 - 4.5)
    This is a little low, but the doctor said as long as it stays 2.0 or above, I will not need any supplements. He also said it was normal for post-dialysis patients to have a low phosphorus for a while, as it has become used to not processing it.
  • Glucose is 87 (range is 75 - 110)
  • Cholesterol is 133 (range is 0 - 200)
  • Hemoglobin is up to 11.6
Keep in mind for you international readers that all these units are American. I have seen some people in other countries that want a creatinine over 100, but if I were to have that, I'd be pretty dead ... so don't worry. A creatinine of 1.0 mg/dl in the United States is the same as a creatinine of 88.4 ┬Ámol/L in SI units.

In other news, we plan to stay home for the weekend, and eat up all the food in our refrigerator before it goes bad. We haven't been home in a while, so that's always important. We are going to go back to the hotel in Fort Worth on Sunday for another fun-filled week of labs and clinic appointments.

I received a comment on a 2006 post today from a guy named Mark. Mark, if you get this far in your readings and still have questions, please send me an e-mail. The address is at the bottom of the blog.

Thursday, January 18, 2007

Thursday, January 18 - Update

Welcome to my blog, following my chronicles as a Polycystic Kidney Disease sufferer and a recent kidney transplant patient. My story has several chapters, and the one I am currently on is titled: "Post Transplant: or How I Learned to Stop Worrying and Love the Kidney."

We went to Fort Worth to receive our transplant, because that is where the cadaver organ was sent. It is a little over 50 miles away from our home, so that makes for a long drive with follow-up appointments. This would not normally be a problem, except that we live in Texas. For those of you with access to the Weather Channel, you will know that ice and snow have been blowing through the area since late last week. Now, of course, that is "Dallas" snow and ice. So, for those of you up north, what it means is that it is cold and rained, and then the road froze. This scares most drivers to death, making the roads much more hazardous than they would have been if I lived somewhere that actually knew how to deal with snow and had drivers that learned to drive in it (more than once or twice a year).

I say all that to say, we decided to stay in Fort Worth for a while. We have follow-up appointments at the hospital until the staples come out of my incision (I think). This is normally about two or three weeks worth of appointments, three times a week. They draw blood at each appointment and verify that all of my anti-rejection medications are being given in the right amounts. If not, they can dynamically adjust my medications on a regular basis to give me the best chance to keep my kidney.

So, it's Thursday, and I am blogging from a hotel. The Fort Worth Stock Show is in town, so we had to find a room with no cows in it. It's not bad, but the mooing might get to be a little much at night, we will have to wait and see. We will stay the night and go to our appointment in the morning and then head back home. But, we will return next week for another full week of hotel stays and mooing (or not, I think the Rodeo finishes this weekend).

I don't know how long we will have to come down here, but it should not be a problem. The insurance company will "help out" a little with the cost, so that should be nice. And, I should get my paperwork next week (or sometime) to fill out my information for Short Term Disability. This way, I can still get a little money while I am not working. I am hoping to be released to do part time work from home eventually, so that I can start getting back in to everything.

Well, thanks for reading. I will try and post again tomorrow, but probably not until we get home. Maybe I will have some good information, lab report wise, since I know you all were starting to miss those from my old dialysis reports.

See you tomorrow!

Wednesday, January 17, 2007

Wednesday, January 17

Well, today was an exciting day in the DFW metroplex area. We had some ice/snow/rain stuff fall from the sky and freeze on the grass. While it was not that bad in our area, the news showed terrible roads in the Fort Worth area, making it a dangerous drive to the hospital.

So, we decided to call in to the clinic and make sure it was okay to miss this one time. They said that it was not okay, but that they would go ahead and schedule me again for my Friday appointment as normal. I did not get a call to change any of my medications (though they cannot really make any changes without the blood work). That will be good on Friday to get some blood drawn so that we can see if my drugs are all at the correct levels to keep me safe and healthy.

We are still deciding on staying in Fort Worth next week. It should help with traveling and with the unsafe weather that we have been having over the last week or two. I plan to talk to the insurance people tomorrow to work out the hotel reimbursement issues that we were having. We want to be both safe and healthy.

Thanks for coming by to read. Sorry there wasn't an update earlier. I'm doing well today (just for your information).

Tuesday, January 16, 2007

Home from the Hospital

Well, everyone, I just wanted to let you know that I am now home from the hospital. It was a long weekend (since Thursday, if you have been reading) and I am glad to be home. I was able to sit on my own couch and eat some of my own food. Soon, I will get to sleep in my own bed. Everything is looking great.

I've got an appointment in the morning in Fort Worth, and we will find out just how everything will be going. Thank you all so very very much for your prayers and support.

Please keep praying that my body will not reject the kidney and that I will not have any infections or other problems caused by the transplant.

Sorry the post is short, but I am a little tired!

Tuesday Morning

We just completed our post-transplant meeting. The nurse went over all of our medications with us to tell us what to take and when to take them. She talked about all of our post-transplant life changes that we will be dealing with, as well.

For starters, we should be released either today or tomorrow, depending on how quickly everything can get completed today. We begin by going to the clinic every Monday, Wednesday, and Friday for the next two weeks. We have a lab appointment where they check all of our blood levels, and then a clinic appointment where they check our medications and we meet with the doctor to make sure everything is still going well.

I have 10 medications on my list as of today. Once we see the doctor, we will have to ask about all of my old medications and see which of those I will need to continue taking and what doses or schedules I will need with those. They gave us a spreadsheet to track when we take all of our medications, and also another sheet to mark weights, temperatures, and blood pressures. I am sure I will be updating those sheets into one sheet on the computer once I get home to a printer.

For now, we are probably going to avoid going to too many public places until we are finished with our two weeks of constant clinic visits. Once that is completed, we will ask about going to church and possibly about working from home. We will also have to check about Jenny's job working with children and find out what precautions that she will need to start taking.

Also included in my folder of post-transplant goodies is a guide to writing a letter to the donor family. I will have to read through that when I get home to write a "good" letter to the family to thank them for their gift. I don't want to break any protocols, so I will make sure to follow all of the directions.

They told us not to go home until we had received a 30-day supply of all of our new medications. I know that might delay us from going home, but we will see.

I will try to make another update today if I find out more. Time for lunch!


By the way, I was asked a comment about eating yogurt. During dialysis, you cannot have a high dairy intake because dairy products are high in phosphorus, which builds up in your blood during dialysis. Now that I have a normal kidney again, I can have all of the phosphorus-laden foods that I know and love. Thanks for the comments, hbk.

Monday, January 15, 2007

Monday Afternoon Update

So, it is time for more updates. I know everyone is excited to hear about the updates, so I am trying to keep everyone up-to-date.

First of all, my creatinine is down to 1.2 (from 10.3 on Friday). Creatinine is a waste product from protein in the diet and from the muscles of the body. Creatinine is removed from the body by the kidneys; as kidney disease progresses, the level of creatinine in the blood increases. What we want is a value of less than 1 (here on the American system of measurement).

My hemoglobin is up to 9.3 from 9 yesterday. It was 14 when I came in to the hospital. This means that I am still a bit anemic, but that should get better as I continue to recover. Hopefully I will not need to take any hormone supplements to increase my hemoglobin until the kidney kicks in production of the hormone needed to prompt my body to produce red blood cells.

The nurse removed my Foley catheter this afternoon. This was wonderful. I no longer have to haul along a bag with me when I go walking around the nurse's station. And, I was able to take a nice long shower (which was nice). I am all clean and feel refreshed. This is the first "real" shower that I have had since the transplant.

The doctor said that they would add a diuretic to my pill regimen to help me get rid of some of the water weight that I have put on since the surgery and due to the steroids. That should take off some of the 20 lbs that I have added on this week. So, that will be nice, to let my socks fit again!

They are going to have a post-transplant class tomorrow morning. This will be for the four patients that had transplants on Thursday and Friday. We should learn about our at home medications and what we need to do to take care of ourselves now that we have a new organ.

Thanks for coming by to read. I will keep updating as I learn more.

7 am Monday Morning

Welcome to Monday morning, faithful blog readers. I can see (by looking at my counter statistics) that my daily readership has gone up quite a bit since Thursday night. I guess a few more people have become interested since I received my transplant!

So, there is not too much to tell this early in the day. I was having a little pain in my calf yesterday, so they did a scan to make sure there was not a blood clot. The nurse told me that it was all clear and that there were no clots in my leg. This is good. I have been walking around a lot, so I did not expect there to be any problems.

My blood pressure was 139/66 this morning. I am not sure if they are giving me any medication for that yet or not. It has been fluctuating up and down a little bit around that point since the transplant. They weighed me this morning, and I was 80.3 kg, which is the heaviest I have ever been. This is a result of the anti-rejection medications, especially the steroids, but that should get better as that dosage gets reduced.

I have a central line in my neck that was placed for emergency blood transfusions during surgery but was never used. They had it hooked up until yesterday to put in my IV fluids. They removed the IV Saturday, but left the line in to draw blood. This morning, however, the central line did not work so they had to do a stick in my arm. I am hoping that they will remove this central line from my neck, as it is not the most comfortable thing you can have installed.

I am feeling pretty good today. I am hoping that since it is Monday, we will see the post-transplant nephrologist and he can start talking to us about what to do once we go home (which should be on Tuesday). As of this point, I don't know if we will go home or if we will try to stay at a hotel in the area. We have to come to this hospital here in Fort Worth for the next two weeks (on Mon, Wed, and Fri) and I don't know if we want to drive the whole hour down here that many times. We will have to see. The insurance was supposed to have an allowance set up to allow us to stay in a hotel, but I don't remember exactly how to access it. We will have to talk to the social worker today or tomorrow and find out if she learned anything about it.

Well, hopefully, breakfast will be here soon and I will get to eat. I enjoyed having yogurt for the first time in over a year yesterday. I hope I ordered some more for today. It was really very good, and I know I have been missing my dairy products. I had cheese on my sandwich for lunch yesterday, and I had some pudding for supper. Mmm.

Well, not more posting for this morning. I will try to update again if anything else happens. If you want to call this hospital room, the number is 817-922-2817, and I should be here until probably Tuesday.

Thanks for coming by to read!

Sunday, January 14, 2007

Sunday Update II

It is around 6:30 pm Sunday, so I thought I'd take an opportunity to update the blog again. My mom and her husband and here in Fort Worth. They came in Saturday evening and are leaving tomorrow in the morning. They took Jenny out to dinner, so I have an hour or so to myself. I spent about 10 or 15 minutes walking around the nurse's station, and now I've made a couple of return phone calls and am sitting down to blog.

I've been getting several phone and e-mail questions, so I thought I would answer the big one:
Nathan, will your new kidney "catch" the polycystic kidney disease?

The answer is no. Polycystic kidney disease is a genetic disease that is in my DNA. Scientists will tell you that DNA is some really long something that every person, place, thing, or idea has (or maybe that's a noun). My DNA contains the "DaVinci Code" that tells my own personal kidneys that they want to grow cysts (or fluid-filled sacks) in place of real decent kidney material. Fortunately for me, the new kidney was born inside someone else who doesn't have my genetic disease (I hope). My body will not pass the disease on to the new kidney. And, unless the donor had the disease and didn't know it, then I won't catch it from him.

It is possible that there are unknown facts surrounding the new kidney. The hospital can only give out certain information, due to privacy laws and such. But, they did tell me that the kidney came from a 17-year old male. That is great news, meaning the kidney should probably out-live me. And, I imagine that most 17 year olds are in better health than I was, so his kidney should have been in real good shape. I think they mentioned that he was in an accident, so he didn't die of a physical problem, which leads me to think the kidney will be healthy as long as I take care of it.

I am still taking my anti-rejection medications. They have been checking my blood sugar (since some of the medications can raise your blood sugar). It was fairly high right after the transplant, but it was only 101 right before supper today. They told me that anything under 100 was good, and they have not given me insulin since Saturday, so I am guessing they are not too worried.

In other news, my feet are kind of swollen, and my legs are a little swollen. They nurses and doctors said that this was normal and to be expected considering the weight gain, the extra fluid, and the medications. As the kidney kicks in more, that fluid should mostly get drained off, and I should get back down to a better weight. I don't know that I will be 71.5 kg again, but I would be happy with anything under 73 kg. That feels about right for my height and body size.

I was able to take a shower this afternoon, which was very nice. I had to cover up the central line in my neck with plastic, which wasn't that great. And, I could not scrub the kidney incision (which wasn't so bad), but I was able to rinse all of the sweat and blue antiseptic. I am feeling much much better now, physically. I am glad to be clean again.

Well, everyone is back from dinner, so I am going to sign off for now. Send in your comments and e-mails, and I will try to get back to you. Enjoy your day!

Sunday Morning Transplant Update

Welcome to the blog today. It is Sunday, January 14, 2007 at about 1:00 pm. For those of you just joining us, I received a kidney transplant (from a cadaver) on Thursday night around 11:00 pm. I was diagnosed with Polycystic Kidney Disease in 1998, and have been on hemodialysis since August of 2005. I am currently staying at Baylor All Saints Hospital in Fort Worth, TX, while I recover from my transplant.

My creatinine (which is a measure of kidney function) has gone down from 10.3 (right after the transplant) to 2.0 this morning. Normal kidney function runs less than 1.0, which means that my new kidney is functioning very well. My other lab numbers seem pretty decent. My urine output has gone from 235 ml to 2600 ml. The kidney doctor said that this was great, in fact a little more than I was taking in. The kidney is getting rid of all of the waste that my body has been building up over the last year of so. The only negative things are that my hemoglobin is only around 9, which means I am a little bit anemic, but the doctor was not worried yet. And, my weight has gone from 70.5 kg up to 79.7 kg (155 lb to 175 lb). This is due in part to some fluid retention and also due to the anti-rejection medications. They can cause weight gain, and I have not done a lot of exercise yet.

Speaking of exercise, I have been doing about 5 laps around the nurse's station after each meal. The doctors and nurses have been impressed that I am up and moving around as much I have been. That helps me to feel better and to keep up my circulation. The doctors and nurses are all glad to see me walking around.

It seems like I am rambling a little bit. That is probably due to having a bit of pain medication in my system. I haven't been taking too much, as the pain is not too bad. They removed the bandage over the staples, and there are 23 of them holding my kidney hole closed. I will blog again later when I am a little less drowsy.

Please feel free to comment, send e-mail, or to call the cell phone. Jenny or I will talk to whomever we can.

Saturday, January 13, 2007

Saturday Morning

It is Saturday morning. I had my kidney transplant late Thursday night. I was in the ICU most of the day Friday, though they moved me in to a room around 6:00 pm Friday night. They want me to sit up or walk around as much as possible to speed up the healing process.

The new (pre-owned) kidney seems to be working pretty well so far. My urine output was 235 ml on the 11th and 2795 ml on the 12th. They have not posted my numbers for today. My creatinine went from 9.1 on Thursday to 10.3 Friday and the doctor just said it was around 5 today.

So, I have some pain in my right side, but that is to be expected. I hope to keep getting better through the weekend.

Stay tuned for more details.

Friday, January 12, 2007

Out of ICU

This is Jenny again. Nathan is doing really well today. His blood pressure is up and his kidney is making more and more urine each hour. He's putting out almost as much as the doctors are putting in. He was on the liquid diet for lunch and he ate everything on his tray (except the iced tea). They upgraded him tonight to the full menu. He wasn't quite ready to eat real food yet so he had pudding and some soup.

The surgeon came in this afternoon and was so pleased with Nathan's progress that he moved him out of ICU. He is now on the transplant recovery floor. If he continues to do as well as he has done today they doctor says he will probably get to go home on Tuesday.

For those of you who live in the area and want to know exactly where Nathan is...he's at Baylor All Saints in Ft. Worth (on 8th Ave off I -30). He's in Building A, 8th floor, Room 17. Now that he is out of ICU we can turn our cell phones on in the room. Feel free to call either number you get the latest information.

Thanks again for your prayers!

Transplant Surgery

This is Jenny, Nathan's wife. Nathan decided to let me post once again. They took Nathan down to surgery at about 9:45 last night. The surgeon came up to talk to us at about 3:30 this morning to tell us that things went well. He said that everything went very smoothly, all of Nathan's other organs were in exactly the right place and he was able to put in the new kidney in the perfect spot. The surgeon's only concern was that the new kidney did not immediately pink up when he connected it. He said that sometimes the kidney can be in shock and may take a few days to become fully functioning. . Once the kidney did pink up it began to make a little urine. The doctors and nurses said they will watch the urine output very closely and it should continue to improve. Nathan's blood pressure was also a little low last night ,most likely due to medications given during surgery. When I left they were just about to give him some new medication to raise the blood pressure. They doctor said that a higher blood pressure would also help the kidney to put out more urine. I called the ICU at about 8:45 this morning to check on Nathan and they said he was doing very well. His blood pressure had come up and he was asking when I was coming to visit.

Nathan will be in ICU all of today and probably most of tomorrow. Then he will be transfered to the transplant floor to continue recovery. The ICU allows 2 visitors at a time for short visits. There are no visitors allowed in ICU from 6-8am and 6-8pm because the nurses are changing shifts. Once he is transfered upstairs he can have visitors as long as he feels up to it. We would ask that if you are not healthy please do not come visit until you are well.

Please feel free to call Nathan's cell phone or my cell phone if you have questions or want other updates. We'll try to post again in the next few days.

We really appreciate all your prayers. Continue to pray for healing and that the kidney continues to make urine and his body does not reject it. Thanks for reading!

Thursday, January 11, 2007

Transplant Scheduled for Today

Well, I am here at Baylor All Saints Hospital in Fort Worth. The doctor came in at 1:00 to tell me that I have a negative cross-match. The doctor said that there are two donors, and four recipients today. The surgeries started at 2:00 pm today. I am not sure when my turn is, but it will be this afternoon.

Please pray everything goes well. I will have Jenny post an update after surgery some time.

4 AM Thursday

The phone rang at 4:00 am this morning (about an hour ago) to tell me to get down to Baylor Dallas for a blood draw and then to head to Fort Worth to see if I am a match. It seems that there is a cadaveric kidney available in Fort Worth and that I am at the top of the list to get it. All they have to do is check my blood (4 hours of waiting) and see if I will have an adverse reaction.

If you see this on Thursday morning, please pray that God's will be done in seeing if I should get this kidney. If I do not get it, I will make another post today to let you know.

So, today is exciting -- we will see what it brings.

(Note: This did not post at 5am as expected)

Wednesday, January 10, 2007

Three Sticks?

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

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

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

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

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

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

Thanks for coming by!

Wednesday, January 03, 2007

Welcome to 2007

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

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

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

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

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

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

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

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

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

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

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

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

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