2010 Top Kidney Disease Blog Award

It appears that I have "won" an award from [redacted]. I'm not quite sure what it all means, yet.

The email that I received states:
As a website dedicated to help those consider a career as a certified nursing assistant, we only provide the best information available. Whether it's a resource that helps patients cope with their illness, or provides ways to live healthier, we feel that it's necessary for those seeking to obtain this information. This is why we've featured your blog, as it is one of the best to teach our readers.

I realize that not very many people will really find this interesting. I like to see that people (or groups) have been reading my blog and actually found it helpful or at least useful to someone.

I'd like to publicly thank the readers from that website for their award. I hope that they are able to find the information that they are seeking from a patient's perspective.

In other news, I realize that I never posted about my October transplant appointment. I'll have to fix that (but not today).

See you next time!

Blog-Time Mail Bag

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

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

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

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

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

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

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

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

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

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

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

My first "Annual" Kidney Exam

Good evening everyone!

I had my one-year post-transplant Glofil appointment on Tuesday. My score was 81. For those of you keeping track, I was 86.1 right after the transplant, 82 at the six-month mark. I asked the doctor (physician's assistant), and she said that the "normal" range for a post-transplant patient was between 40 and 60, so I am doing very well.

I received a Glofil-related question on my comments (on the last blog). Here's the question:

Jugie C has left a new comment on your post "You're a Genius":

My grandson (Montgomery, TX -- 10yo) had his 1st GloFil test today (01/15/08). He was born with inadequate kidney function. Can you point us to an explanation of what "normal" is (his was 21.9). My daughter was informed that 70-140 is the adult normal.

Well, Jugie, I asked the nephrologist about your question. She printed me a list from http://www.renal.org/ about Glofil results. For a person with Chronic Kidney Disease, the kidney function is measured (or estimated) with a GFR (Glomerular Filtration Rate). There are five stages but kidney function is normal in Stage 1, and minimally reduced in Stage 2.

Stage 1 is a GFR of 90+: Normal kidney function but urine findings or structural abnormalities or genetic traits point to kidney disease.
Stage 2 is a GFR of 60 - 89: Mildly reduced kidney function, and other findings (as for stage 1) point to kidney disease.
Stage 3 is a GFR of 30 - 59: Moderately reduced kidney disease.
Stage 4 is a GFR of 15 - 29: Severely reduced kidney function.
Stage 5 is a GFR of < 15: Very severe, or endstage kidney failure (sometimes called renal failure)

The nephrologist said that UNOS (the transplant people) require you to score less than 20 in order to qualify for a transplant. She also said that once you fall below 15, they normally recommend dialysis (depending on the patient, but it's <15 for almost everyone).

I also got my lab results back. My creatinine remains at 1.0 (which is good). My cholesterol levels all looked good. My bad (LDL) was at 61 (which is on the low end). My good (HDL) was a little lower than they like (only 36.0). And my triglycerides were at 139, which is excellent. The only recommendation is cardio-vascular exercise to improve my good cholesterol numbers. Aside from that, she was happy. My Phosphorus was a little low this week at 2.5 (with the normal being between 2.6 and 4.4). The doctor said to keep eating the foods that are higher in phosphorus (all the stuff I could not have on dialysis).

From glancing at the second page, my MONOCYTES were a little high at 0.84 (and the normal range is 0.10 - 0.50). The Internet said that monocytes are a second line of defense against infection. I'm guessing they are elevated due to this foreign kidney being in my body. I'll have to watch it on the next lab report and see if it remains a problem. This level has not been elevated in the past.

That's it for this week. I have another appointment on my birthday. I'm going to try and go in early to see if that helps with the congestion at the office. They have been remodeling their office, and are serving patients in a smaller rental building. It's crowded and there is never any parking. I'm hoping that perhaps being the first appointment of the day will give me a chance to get seen quickly and to get a place to park.

Have a great week. I'll try to post again before mid-March!

September 2007 PKD Walk

Greetings everyone!

I got a message from my aunt this week (she lives in New Mexico). Here is the letter that she is sending to all of her friends:

A message from Beverly Laude laude@gilanet.com.

Dear Friends and Family,

Most of you know that my nephew, Nathan, has Polycystic Kidney Disease and received a kidney transplant in January 2007. Now, he is leading a (mostly) normal life, no longer dependent on dialysis to live. My niece, Angela, also has PKD, but so far is not facing as many devasting medical problems as Nathan.

I am participating in the Walk for PKD. I've set a challenging goal to raise mondy to fund research to find a cure for PKD! With your help, we can make a real difference, together.

Polycystic Kidney Disease (PKD) is one of the most common life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide. In fact, it affects more people than cystic fibrosis, muscular dystrophy, sickle cell anemia, hemophilia, Down syndrome and Huntington's disease--combined! Still, few people know about it. There is no treatment and no cure... Yet. I am walking to change that.

You can make a secure donation online by simply clicking the link at the bottom of this message. Whatever you can give will make an impact - no donation is too small! I truly appreciate your support and will keep you posted on my progress.

Thank you for helping me help find a cure for PKD!
Click here to visit my personal page.
If the text above does not appear as a clickable link, you can visit the web address:
http://www.pkdcure.org/site/TR/Events/General?px=1299262&pg=personal&fr_id=1761&et=xvlZnu901lYDo5psiWr85Q..&s_tafId=14537

She is going to walk in the 2007 PKD walk. If you would like to help in the fight to find a cure for Polycystic Kidney disease, please visit the link above and donate some money to help find a cure. You may not know me or anyone else with Polycystic Kidney Disease, but this could be your chance to help find a cure to the most prevalent genetic disease in our world today.

Please take a minute to visit her link and donate, if you feel so led. Thanks for taking the time out of your schedule for this message (and hopefully, become a sponsor).

Enjoy your day!!

Sermon Notes - Perseverance

Good morning blog readers! I come to you today with some notes from the message that I heard in church yesterday morning. Normally, I attempt to regale you with stories mainly concerning my kidneys (or adventures surrounding said kidneys). Today, I thought I'd provide you with a little insight that I gained at church yesterday and how it relates to my kidney journey.

We have been studying 2 Peter 1:5-8 in church for the past several weeks. Here are the verses, as taken from http://www.biblegateway.com/:

5) For this very reason, make every effort to add to your faith goodness; and to goodness, knowledge;
6) and to knowledge, self-control; and to self-control, perseverance; and to perseverance, godliness;
7) and to godliness, brotherly kindness; and to brotherly kindness, love.
8) For if you possess these qualities in increasing measure, they will keep you from being ineffective and unproductive in your knowledge of our Lord Jesus Christ.

As you may have guessed from today's blog title, Sunday's sermon was on the phrase "and to self-control, perseverance." The pastor spoke about how perseverance, in this passage, is not referring to just "hanging in there" but more "to remain under," like a pack mule under a load. He spoke about how persevering is not just staying under a burden, but looking forward to the results that will come about because of the burden being borne. His focus was on the Christian life, and how the trials and tribulations that we face are all worth it because, as Christians, we have the prize of an eternity in Heaven with Jesus waiting for us.

In my mind, I thought about my kidney disease. I have always looked at it as being a part of my life. It is not something that was caused by something I did, and it was not something that I necessarily deserved. I was born with a genetic condition that would cause my kidneys to fail, and they did indeed fail. But, life was not over. I knew that I could look forward to a life with a transplant. All during dialysis, I knew there were lots of people all over the world praying that God would provide a way for me to no longer be on dialysis. Back in January, God provided a kidney for me. All that I had gone through led me to this transplant.

What is my application for this? Do I just go back to life as normal? No! I keep in mind the way that life was on dialysis. I also am reminded of the family that lost a loved one and chose to donate his organs. This gives me a couple of great reasons to care for my kidney like never before. I try to drink water all day long, to keep myself hydrated and to keep the kidney happy. I take all of my medications on time every time (except that once) in order to help prevent rejection. I am trying to stay healthy with my diet and a little exercise to keep my body in good shape so I don't lose the kidney through another problem.

So, all in all, I am thankful that God allows us to learn perseverance. It lets you learn to direct your focus on the good things that are to come. And, if you achieve the positive results at the end, then you are able to look back and thank God for all He has done. At least, in this case, that's how it worked out for me.

Praise the Lord!

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.

Letter to the Donor Family

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

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Dear Donor Family,

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

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

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

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

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

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

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

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

Thank you again,

Nathan

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

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

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

Writing to the Donor Family

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

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



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WRITING TO THE DONOR FAMILY 

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

Here is some information you may want to include.

Talk about yourself:

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

Talk about your transplant experience:

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

Closing your card or letter:

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

Mailing your card or letter:

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

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

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

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).

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 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 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 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.

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!

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)