Monday Clinic Update

Welcome to Monday evening everyone. I have gotten a few calls/e-mails today wondering if everything is OK, and it is. No need to worry, I was just busy today and therefore slow at blogging.

I had my final appointment at the clinic in Fort Worth this morning. The doctor said that everything is looking great. He had his nurse remove my staples from the surgery scar, and they did not have to use any steri-strips (since the wound had healed very well on its own).

The doctor also transferred me to the Dallas Transplant Institute (DTI). That clinic is much closer to home (about one hour rather than two). The doctor told me that I will be seeing a team of doctors rather than just one doctor. I may not see the same person two visits in a row, but the whole team has access to all of my reports and my data, so it should be OK. I will see next week when I go to the clinic. My next appointment should be Wednesday, the 14th.

So, I am feeling great. The doctor said that my heart burn was probably caused by the Cellcept. He said that I should just take some Mylanta or something similar to help with it. He would rather not reduce my Cellcept dosage since I am still within a month of my transplant. The doctor said that they might reduce it later on, if it is still a problem, but not right away.

I have been also experiencing a small amount of shakiness in my hands. They are not what I would call "tremors" but they are not normal steady hands. The doctor said that my minor shakiness was caused by the Prograf. He said that the levels in my blood might still be a little too high, but they did not call today to change my dosage, so I guess that was not the case.

I received today the "Prednisone Taper Schedule" from the nurse. This is a schedule that tells me how to reduce my Prednisone over the next several weeks. The reduction is as below:

Date	Dosage
Jan 11	20 mg / day
Feb 12	19 mg / day
Feb 19	18 mg / day
Feb 26	17 mg / day
Mar 5	16 mg / day
Mar 12	15 mg / day
Mar 26	12.5 mg / day
Apr 23	10 mg / day

So, starting Monday, I will be taking 19 mg of Prednisone a day. I doubt that there will be much change in the side effects until at least the 15 mg dosing. I do not know how quickly that I will notice the change, but it will be nice to take less medication.

Also, I got my computer from work today. My boss is ready to approve me to work 20 hours a week from home. All he has to do is to update a form that he submitted to have me off of work and then I can do some work from home. That will allow me to be paid part time from work and part time from the disability. That will give me something to do (which is nice) and also will help me get paid a bit better than disability.

That is about it for today. I have my full lab report from today's blood work, but since this post was so long, I will save it until tomorrow.

Thank you all for your continued interest and prayers!

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

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 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 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!

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!

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 µmol/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 - 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!

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)