July 3: Urologist Visit (Informational)

Good morning everyone! I visited my urologist yesterday afternoon to discuss the results of my sonogram that the nephrologist took last Friday when I was in for my quarterly visit. I never really enjoy visiting the urologist, even though he is a very nice person.

He said that my transplanted kidney was looking pretty good. He was pleased with my lab results and said that it was very possible for me to get twenty to thirty good years with my transplant. That's always exciting news. The more years with this transplant, the better I think it will be.

First of all, the doctor did not believe that he would have to remove my native (PKD) kidney at this time. He said that he wants to go and do another cystoscopy (click if you like super-detailed medical info) of my bladder and possibly my native kidney as well. This time, however he suggested that we do the procedure in the hospital, instead of in his office. That way, if he does find something small that needs to be removed, he will be able to do it right then. He won't have to schedule a second appointment to go back inside, look around again and remove the problem.

It doesn't sound like he thinks he will find anything, but he wants to be on the safe side.

I was glad that he did not want to remove my other kidney. He said that removing it would always be a last resort for him. He doesn't like to put the patients through the recovery if they don't need it. He also said it meant that my medications would need adjusting again (to account for something, I'm sure).

I'm scheduled for the procedure on July 19 at 7:00 am (yippie). Guess I'll have to ask for that day off when I get back to work tomorrow. We'll be up in Frisco, so I get to visit a new hospital.

I'm hoping that the doctor either finds nothing, or that anything he finds is minor enough for him to take care of it while he is in there poking around. The best thing is that I should not have to go back in to have any more work done for a while. And, it's possible that he may be able to get rid of whatever causes random pain in my native kidney (which would be nice).

I'll update again after the 19th. Not that day, probably, as I'll be a bit out-of-it.

Thanks for your continued prayers!!

It's Been Two Years Since My Last Blog Post

First up, the good news: Everything is going great with my transplant!

Okay, now that I've got that out of the way, I can share a few other things with everyone. I've been seeing my transplant doctor (the nephrologist) now about four times a year since my transplant. They are very pleased with my health, and my creatinine is always very good for someone with a replacement kidney.

Also, I've still got my old kidney. You know, that one with the Polycystic Kidney Disease? It's hanging out in my right flank (lower back) where it's supposed to be. It doesn't do a whole lot, except hurt sometimes. A few weeks ago, it hurt A LOT. For two or three days. Then, it stopped hurting, and I began passing blood in my urine (not all that wonderful, I tell you).

This went on for a few weeks, until I saw my nephrologist. As part of my exam, before I had even mentioned any symptoms, they had me scheduled for a sonogram of my native kidney and a bone density test. I haven't checked the results of the bone density, but it's probably pretty good since the doctor didn't mention it while I was there. The sonogram, however, is a different story.

The doctor saw what he believed to be blood clots hanging out in my sonogram. Now, he's not the doctor that actually reads sonograms (not sure what that title is). He just looked and didn't like what he saw. He thinks that there are some blood clots hanging out in that old, bad kidney, and he wants to have it looked at my my urologist.

So, I am scheduled to see my urologist on Wednesday afternoon. I'll find out there if there are blood clots in the kidney and if we need to start talking about having that kidney removed. This would not be my preference, as the recovery will not be fun, and the cost will also be NOT fun. This is one of those times that I need to be part of the US Senate or House of Representatives. That way, I could actually afford surgery. But, I don't see "being a Federal elected official" in my future.

I'll know more Wednesday. Maybe I'll post again Wednesday, or maybe Thursday? We'll see.

Prayers would be for a good outcome on Wednesday from seeing the urologist. Blood clots would be bad.

Sunday, June 12, 2011

It is one day before my surgery. Tomorrow I get to go in and have some procedures done. Here is what my doctor's orders say:

I have been informed of the risks, possible alternative methods of treatment, and possible consequences involved in the treatment by means of:

• Functional endoscopic sinus surgery
• Laryngoscopy with biopsy

under the general anesthesia for the relief of:

• Chronic sinusitis
• Neoplasm Larynx

That's just the fancy way to say that they found a growth on one of my vocal folds (observed through visual means) and that my CT revealed that my sinus cavities were full of junk (thanks to the CT scan). The doctor will be removing the growth from the vocal fold, and he will have it sent off for biopsy to make sure it is benign. He will also go in and vacuum out (or flush out) my sinus cavities and give me a fighting chance against my allergies (at least for a little while).

As of this morning, I do not have a time for my surgery, yet. They hospital is supposed to call me this evening and give me instructions. We will drop off Hannah with Jenny's mom, and then we will head to the hospital to be bored for a while, then surgery, then back home (yippie).

My only real questions for the doctor will be to ask him if he recommends any antibiotics to fight off lingering infection (now that the growth will be gone). I'm also going to try to ask about post-operative care (what to do and not to do) and if I will need any pain medication. The surgery itself sounds pretty simple, so that should not be an issue.

The last time this doctor operated on me, for my deviated nasal septum, I remember more of the overall day than any other previous surgery. It was interesting to have to get on the surgical table myself, and then to be awake for almost the whole hour of "post-operative observation". (And yes, grammar nerds, I have chosen to go with the more British use of the period outside of the quotation marks. I believe that everyone in America will start doing this, eventually.)

So, that's all that I have for today. If you remember me tomorrow, I could use your prayers. I would ask that the doctor would do his job well, and that my recovery would be quick and easy. See you all next time!

(251) Nathan Gets Tested for CMV

Hello everyone! I'm writing today to let everyone in on what has been going on with me for the past week, and what they think is happening.

The title is sort-of a spoiler. The week has ended with me being tested for CMV. You can read all about this on the Internet, if you like. It sounds like it is a standard virus that more than 50% of adults contract in their life time. It's really not harmful, unless you have a suppressed immune system (like I do). They did the test today, and I should find out an answer on Friday.

Okay, now to rewind. I woke up late last Wednesday night (early Thursday morning) feeling nauseated. My stomach was sour and I kept having diarrhea through the night. I did not go to work on Thursday, and had a couple of vomiting spells. I cut back, and only took my transplant medications on Friday, and did not vomit any. I stayed home from work that day, too. I felt bad on Saturday and was slightly better on Sunday. I went to church Sunday and it was not terrible. I needed to rest during the day, which was good. I went in to work on Monday, but did not feel great. The diarrhea was gone on Sunday but back on Monday.

Tuesday morning (yesterday) I was sick again. I was throwing up and the diarrhea was back in full force. I stayed home Tuesday (and today). I went to the transplant doctor's office Wednesday (today) to see if they had any suggestions. They told me that I was dehydrated and had lost ten pounds. Those two items helped contribute me to having a creatinine of 1.7 (which is bad).

The doctor gave me one liter of saline and sent me to have a CMV test done at the nearby hospital. I guess they don't have the equipment to do that at the transplant office. And, it was a good way to cost me $2 for parking. I go back to the office on Friday to get my results from the CMV test (and see if they found anything).

So, in summary, I've been sick for seven days now. It's not fun, and I'm not enjoying it. I don't know what to do to get better, and the doctors don't have much information to give me, yet. I'd appreciate any prayers.

I'll give more updates when I learn more (probably after Friday's appointment).

Thanks!

Cystoscopy - Coming Soon?

This afternoon, I have to go and see my urologist. I was sent to him with a diagnosis of hematuria (and particulate in the urine). The suggested procedure is to have a cystoscopy to make sure that there is not a kidney stone (or something) in my bladder.

I have to admit to my blog reading community that I am not looking forward to today. This is not a procedure that has me excited in the least. I'm having a difficult time resolving my fear and handing it over to God. I know that I do not need to worry and that He cares for me. It's just tough, sometimes. Part of it might be some type of male cultural problem (who knows?).

I thought I'd compose the rest of my blog as a prayer, written after the format that Jesus gave the disciples when they asked Him how they should pray. As a reader, you get to enjoy a glimpse into my personal relationship with God, and see a bit of my fears handed over. It will sound slightly formal, but that is mostly because I have the time to type it all out (not just praying in my mind, or out loud). Here it goes:

My Father in Heaven,

You are wonderful and awesome. You knit me together in my mother's womb, and You have laid out the plans for my life. I love that You know me so intimately and have that You know all things. I pray today that my life can be a pointer to You and Your kingdom. Today I come to you with fear in my heart. I have a cystoscopy potentially scheduled for this afternoon, and I am not looking forward to it. My hope is that I do not need the procedure at all. I know that You have provided us with doctors to help when we are sick and that I need to trust my doctors in this matter. I just ask that Yyou would take away my fears and worries, and allow me to rest in Your comfort. Thank you for loving me despite my sins. I know that You continue to forgive me even though I continue to fail You. Please help me to follow Your Word more closely in my life. Help me not to allow fear and worry to creep into my heart as I face things I do not understand. Thank you for your Son, Jesus, who died for my sins.

Amen

So, I will go to see my urologist at 2:10 pm this afternoon. I haven't seen him since January of last year when Jenny and I were trying to figure out why she wasn't getting pregnant. It will be nice to give him the good news that she is due in December.

It might be a few days before I post again. I suppose my Facebook Friends or Twitter Followers will probably hear about my appointment before my blog readers do. Enjoy your days, and know that I will be great (and that I am still feeling wonderful).

(246) Monday Misadventures and a Pending Cystoscopy

So, I probably should have tried and blog about this yesterday, but I didn't take the time to do it. I wanted to let everyone know, for starters, that I am still okay and as of yet, nothing has been deemed wrong with me.

Sunday morning, I noticed some blood in my urine and some particulate as well. The particulate was small pieces that seemed fleshy. This was a bit disconcerting, but there was no pain associated with it. I had a lot of water to drink that morning (since church was starting at 10:50 instead of 9:15 that day). Going to the bathroom two more times, I still saw particulate, but the color was less red each time.

When we got home from church, I went to the bathroom again, and saw that the color seemed normal and that there was no particulate. I called the 24-hour doctor's line at the nephrologist's office, and they paged the on call physician. We talked and he said that if there was no pain that I could just go in to the clinic on Monday to be checked.

Monday, I saw the doctors. They ran blood work and everything was normal. My creatinine was at 1.0 (good) and the other results were normal as well. They also ran a sonogram on both of my kidneys (the native and the transplanted). The sonogram showed nothing abnormal on either kidney. The doctors suggested that I should have a cystoscopy done by my urologist.

I called the urologist and set up an appointment for Friday. I'm not sure if he will do the procedure in his office that day or if he will evaluate me and then set up a date for the cystoscopy. My understanding is that it can be performed in the office, depending on the "type" of test they do. The point of the cystoscopy will be to see if there is a kidney stone in my bladder. Those interested can read more here: http://en.wikipedia.org/wiki/Cystoscopy.

Please pray that the test, if needed, goes well and that this was only a burst cyst in my native kidney (or something else that was non-problematic). I'm not worried, but I would prefer if there was nothing wrong (especially with the transplanted kidney).

Thanks for reading and praying! See you next time.

Quick Surgery Update

Just wanted to let everyone know - my surgery time was moved to 11:00 am for Monday. They called last night (Sunday) to let me know that my surgery time was moved a little bit later. For those of you that will be praying, 11:00 am is the time! Thanks!

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!

--

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!

Double Surgery!

I know, double surgery sounds pretty bad. I probably should have title this post: "More News from the Doctor" or perhaps "What I've Learned" instead of Double Surgery. But, I did not. Now that you are tired of me explaining my choices, I guess I should talk about my surgery.

So, if you've been reading, you've noticed that I've been complaining of a chronic cough for a couple of months now. My nephrologist scheduled a CT scan for me on July 14, and they looked at my chest and sinuses. From there, I was referred to an Ear, Nose, and Throat doctor (or ENT for short - and no, not the Ents from Lord of the Rings). This doctor looked at my CT results, and looked up my nose, and said that I would need surgery to fix my problem.

I would normally have complained about surgery, except that this is what the kidney doctor had recommended as well. Since the two doctor had never spoken, I am going to guess that the opinion of two doctors is probably pretty good.

So, you've all read the post about my CT scan results by now. And, if you haven't, then go read it at: http://nmccart.blogspot.com/2008/07/many-tests-later.html

I am going to have a "Nasal Septal Reconstruction" to relieve my Deviated Nasal Septum. I am also having "Functional Endoscopic Sinus Surgery" to relieve my Chronic Sinusitis. What does this mean? The first one, the NSR (as I choose to call it) will fix my deviated septum. It's basically the seperation between the two sides of your nose. Mine is not straight, and they are going to fix it. It should help me breathe and drain better. The second surgery, or FESS (that doesn't sound as good as NSR did) is to clean the sinus polyps out of my sinus cavity (in my cheeks). I think they must have been there a while, because they are a decent size, and I have a runny nose ALL the time.

The surgeries will be on Monday, August 11, in Baylor University Medical Center in Dallas. It is outpatient surgery, so I should not be there more than a few hours. All I have to do now is to pick up my CT charts and pre-register. (The doctor wanted to look at the actual scans before doing any work).

Please pray that the surgery goes well and that I recover quickly. It should not be a long reocvery, but I am looking forward to getting rid of this cough and possibly even breathing easier all the rest of the time!

Enjoy your week everyone. I'll try to blog again after the surgery.

TB Scare!

Welcome to the blog for today. First things first, if you did not read my blog from March, you can find it here: http://nmccart.blogspot.com/2008/03/happy-birthday-to-me.html

I went home from work at about 2:00 pm today. I heard rumors around 1:00 or so that someone in our office, on my floor, had tuberculosis. For those of you that don't know, tuberculosis, or TB, is:

Reference (http://www.webmd.com/a-to-z-guides/tuberculosis-tb-topic-overview)
Tuberculosis (TB) is a bacterial infection that is most often found in the lungs (pulmonary TB) but can spread to other parts of the body (extrapulmonary TB). TB in the lungs is easily spread to other people through coughing or laughing. Treatment is often successful, though the process is long. Treatment time averages between 6 and 9 months.

Now, this is an infectious disease, which is easily spread through coughing. I do not know if I have caught it, but I am going to call the transplant office in the morning to schedule a chest x-ray. I called them the minute I left work, asking what needed to be done. They returned my call about 4:30 (after the scheduling office was closed) to tell me to set up a chest x-ray to confirm if I did catch TB.

My boss called and said that the environmental people were going to come out and clean around the infected person's cubicle (which is not near me) as well as all the common areas in the building. They are supposed to disinfect everything overnight, so I should be safe in the morning. I haven't decided if I want to wear a SARS mask or not, but I'm considering it!

So, tomorrow, I will schedule my chest x-ray. It is doubtful that I have anything, but it is better to be safe than to be sorry (especially since it can take a year to cure TB in a healthy person).

That's it for today. I'd appreciate any prayers my direction in regards to my upcoming x-ray. Thanks!

Year Two: Day One

Yesterday (January 11, 2008) officially marked my one year Kidney-Versary! (Yes, spell checker, I know that isn't a word, stop underlining it with that red squiggly line).

It has been a wonderful year. I just spent twelve months NOT having to go to dialysis. That was probably the best change for me. I also got to eat more food (like a normal person), and I was able to put on a little bit of weight. I now weight 185 lbs (which is good when you are 6 feet 2 inches tall). I got to spend more time at home with my wife, and have generally enjoyed life all the more since my transplant.

I'd like to thank everyone that has been praying over the past year. The doctors say that the first year of transplant is the hardest to get past. Once you make it one year, your chances of rejection fall greatly. I am hoping that the statistics will hold true for me and that I will get a few more decades out of this new kidney. Keep on praying that God will protect me and this wonderful transplanted kidney for many years to come.

I have a Glofil test coming up in about two weeks. This will give the doctors a one year picture of how my kidney is doing. I'll be sure to let everyone know what's going on after I find out. I should probably also have another bone density scan a week or two after that. Then all of my records should be up-to-date in their systems.

That's about it for today. More another day!!

Bone Density Scan - Results

Here are the results from my Bone Density Scan (taken back on August 6).


This was the worse of the two results (taken from my hip bone). Though I do not know exactly what this means, there is a small chart that gives me a usable amount of information.


The small circle in that chart shows that I am at "Increased Fracture Risk." The WHO (in 1994) classified this as Osteopenia.

So, I think these are pretty similar to the results that I got back in January. If there is greater demand for more information, then I can try to find out more from the doctor when I see him next week.

So, that's it for today. Please pray that my bones don't get worse in the next six months. I am going to get back to doing regular exercise to try and keep my bones in good shape. Thanks!

Some Pain Today

Hi everyone. Thanks for reading the blog today. I just wanted to make a quick update for today.

This morning, I noticed that I have some minor pain over my transplant site. I noticed it after exercising this morning. I have been riding the exercise bike for the past several days instead of walking on the treadmill because my foot has been hurting a little bit. I think I slightly injured my foot a bit walking on it funny. But, I have been riding the exercise bike recently, and my foot is feeling much better.

Unfortunately, I also noticed some pain over my kidney transplant today as well. I am not too worried since the pain is minor, but I do plan to tell the doctor tomorrow when I go in for my clinic visit. Since I have a standard follow-up tomorrow, I am not going to worry about calling the doctor today. The pain is minor, so I am not worried.

I would like to have everyone pray for me, though. I would ask that you pray that the pain that I am feeling is not a problem and that the doctors will not be worried. I am glad that I have frequent appointments for just this reason.

And, I have my colonoscopy and endoscopy scheduled for April 23. I was reading the instructions for the preparation today, and I don't think I will be going to church on the 22nd. The preparation is fairly intensive, and is supposed to start at 7:00 am and go for six or eight hours. So, from the sounds of the prep sheet, I will need to stay at home all day. I think the worst part is that I am only allowed to drink (no food) for that Saturday and Sunday. Hopefully, the tests on the 23rd will not show any problems.

Thanks for coming by to read today!

Friday Updates

Welcome to Good Friday everyone. For me, I suppose it was a pretty good Friday. I had a lab appointment today, and I saw my GI doctor as well. My creatinine was at 1.0 today, which is a good sign. I think that I have been drinking enough water, which is good for me. I think that has been the most help at keeping my labs stable.

I saw the doctor at the clinic today. They said that they want me to reduce my Cellcept down to 250mg twice a day (instead of 3 times a day) to help reduce diarrhea. They also called this afternoon to have me increase my Prograf from 2.5 mg twice a day to 3.5 mg twice a day. I guess my Prograf numbers were really low, because they asked if I had skipped a dose (which I had not). So, I will take more of that for at least a week (until they draw labs next Friday). Then, we will see if the numbers are better balanced (hopefully).

I saw the GI doctor today as well. She said that she wants to check for any intestinal infections that might be hiding inside. Since I have a reduced immune system, I am at a greater risk of getting infections (even smaller ones that would not hurt most people). So, the doctor wants to do an endoscopy and a colonoscopy on April 23. She decided to do both procedures at the same time, since I would already be knocked out. She said she will take a look around, and possible take some biopsies if there is not anything to see.

Please pray that I will stay well. Pray that God will continue to watch over me and will help me stay healthy. I am still drinking lots of water, and I will keep doing so. It gets easier to drink more as you get used to drinking more water. Thank you all for coming by to read today.

PS - Jenny really wanted me to update the blog just now, so you can thank her that it got done today rather than tomorrow.

Friday Lab Update

Once again, we have come to Friday. I am here to give you my update from the visit with the doctor today.

I went in this morning to the clinic to have my blood drawn so I could see if I am healthy again. The doctor said that my creatinine was at 1.2 (which is still a little bit high). She said she would rather see me at 1.1 or below. The solution: drink more water! I told her that I had been drinking at least 80 ounces of water (plus other beverages on top of that) per day for the past week. She said to keep that up, and it should help. It seems I was still showing as slightly dehydrated (though, I do not know how).

Either way, I am doing fine. The doctor prescribed me some new medication (but I don't recall the name off hand, they didn't have any at the pharmacy today). I should be able to get it on Monday, as long as they get it in stock.

I did not get any order to change my Cellcept dosage. So, for now, I will continue to take 250mg twice a day. I may have to call back on Monday to see if they wanted to increase that or leave it alone. I guess that depends on if I think about it on Monday or not. I have to go visit with the house inspector Monday afternoon, so I may be too busy to call the clinic then. Perhaps Tuesday.

So, all is well with me. I will continue to drown my insides with water (and other beverages, to keep up my salt levels and such). I will keep going to the doctor (I have another appointment for Friday), and I will continue to take my medication (including the new one, after I get it).

So, keep praying that my body will continue to accept the new kidney and that I will stay healthy and happy. Oh, and pray that our house inspection goes well. We are looking to buy, and would not like our prospective home to turn out to be a trash pile.

Thanks!

Thursday - Not so Good Today

I just got a call from the Dallas Transplant Institute. They said that my creatinine is up to 1.4 (which is bad). The lady said that I need to come in the the office tomorrow to find out what is wrong. She advised that I make sure that I am well-hydrated for the rest of the day.

They just ran lab work this morning, so I do not know if there is anything else wrong. I will be seeing the doctor tomorrow morning (Friday). I guess he will let me know what to do to get my creatinine back down to normal.

Please pray that my creatinine will go lower and that there will not be anything wrong with me. Thanks!

Monday, Feb 19 -- An Update

I see it has been about four days since I last gave everyone an update, so I am going to try and give a quick overview of everything that is going on with me at the moment.

For starters, I am feeling great! My energy level is good, my new kidney seems to be functioning very well, and I am enjoying life more like a normal person. Jenny and I attended a "Membership Celebration" at our church last night. It is an informal, informational setting that allows visitors to our church to learn about the church's core values and gives them a chance to become members. Jenny and I were there as "hosts" to assist three other couples that were thinking about church membership. It was good to be able to go to something like that, and I got an opportunity to speak to our pastor. He has been faithfully praying for me ever since I lost my kidney back in 2005. As we attend a large church, I do not speak to him personally that often, but when I do, he always asks how I am doing and lets me know that he is still praying. It was good to talk to him last night and let him know that I am feeling very healthy and that all of the prayers were appreciated. Oh, and all three couples at our table decided to join the church, so that's good news, too!

I am still preparing for my Glofil test on Thursday. They have me scheduled in the afternoon group for that day. I am also having my weekly follow-up clinic appointment that day, so I need to remember not to take my Prograf that morning. (I just moved my Prograf out of the Thursday morning container and in to the Thursday afternoon container, so I will not be taking it with my morning medications). The doctors do not want you to take the Prograf before you blood is drawn so that they can get an accurate level of how much Prograf is in your system and decided if you have too much or not enough in your blood to keep you healthy. Anyway, the Glofil test is coming up, and I am supposed to be hydrating myself all week in preparation. I have had about 30 ounces (887 ml) of water this morning. I think my goal is supposed to be 96 to 120 ounces (2839 to 3549 ml) of water per day for the three days prior to the test. That's the same as having 1 1/2 2-liters of water (or close to a gallon of water) per day. I know I did not drink quite that much yesterday, but I think it will be okay. It has been quite a while since I have been allowed to drink that much per day, especially since that was about what I tried to stick to between dialysis treatments. But, I will drink water throughout the day, and hopefully when I go take my test, I will be hydrated enough to not have to drink too much during the test, which is nice.

In other news, I am continuing to walk just about every day. I have walked nine out of the last ten days, and except for one day when I ran out of time, I have walked 65 minutes a day. I am slowly increasing my speed on the treadmill (I walked at 2.5 mph this morning). I called and talked to my mother on Saturday, and she noted that I was able to carry on a conversation with her the entire time I walked. She said that means that I am not working my cardio-vascular system quite hard enough. I reminded her that as of a month ago, I was leading a sedentary lifestyle, and it might take a little bit longer before I am up to the point of getting a "good" work-out. Here is my walking log for the past 10 days:

DATE	DISTANCE	TIME
02/10/07	2.28 mi	65 min
02/11/07	2.36 mi	65 min
02/13/07	1.61 mi	44 min
02/14/07	2.46 mi	65 min
02/15/07	2.48 mi	65 min
02/16/07	2.59 mi	65 min
02/17/07	2.59 mi	65 min
02/18/07	2.70 mi	65 min
02/19/07	2.70 mi	65 min

So, as you can see, with increased speed comes increased distance. In another couple of weeks, I should be up to about four miles per day. I don't know if that will be a good goal or not, but it is at least something to look forward to. Once I get to the point of breathing hard and having my heart rate up by the end of my hour, then I will work on using the "incline" function of the treadmill so that my speed and distance do not have to increase, but I can continue to get a better work-out.

Well, that should about do it for today. I have to call my disability contact at work and ask why I have not received any money from the short-term disability. I am thankful that Jenny and I have been putting money into our savings account for the past couple of years. Otherwise, it would be very hard to live (as I have only been paid for 44 hours in the past four weeks). So, I will give him a call and find out what is holding up my disability payments. Hopefully that will get resolved today and I will get some income this week!

Please pray that the disability payments get worked out. Continue to pray that I will remain healthy. Pray that my Glofil test goes well on Thursday and that my kidney function will be high. And, continue to pray for the donor family and their loss.

Thanks for reading today!

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

Wednesday Update:

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

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

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

PROCEDURE	RESULT	UNIT	REF RANGE
[COMP METABOLIC]
SODIUM	142	MEQ/L	(136 – 145)
POTASSIUM	4	MEQ/L	(3.6 – 5.0)
CHLORIDE	108H	MEQ/L	(98 – 107)
CO2	26	MMOL/L	(22 – 30)
ANION GAP	8	MEQ/L	(6 – 16)
GLUCOSE RANDOM	80	MG/DL	(75 – 110)
CREATININE	1.0	MG/DL	(0.7 – 1.2)
BUN	11	MG/DL	(9 – 20)
BUN CREAT RATIO	11		(7 – 25)
CALCIUM	9.3	MG/DL	(8.4 – 10.2)
TOTAL PROTEIN	6.4	G/DL	(6.4 – 8.3)
ALBUMIN	4.1	G/DL	(3.5 – 5.0)
GLOBULIN	2.3L	G/DL	(2.4 – 3.5)
A/G RATIO	1.8		(1.1 – 2.2)
BILIRUBIN TOT	0.3	MG/DL	(0.2 – 1.3)
ALK PHOS	58	U/L	(40 – 129)
AST	16	U/L	(10 – 50)
ALT	43	U/L	(10 – 50)
[MAGNESIUM]
MAGNESIUM	1.6L	MG/DL	(1.7 – 2.6)
[CBC]
WBC	6.0	K/UL	(4.5 – 11.0)
RBC COUNT	3.17L	M/UL	(4.5 – 6.00)
HEMOGLOBIN	10.8L	G/DL	(13.5 – 18.0)
HEMATOCRIT	31.2L	%	(40.0 – 52.0)
MCV	98.4	FL	(80.0 – 99.0)
MCH	34.1H	PG	(27.0 – 33.0)
MCHC	34.6	%	(32.0 – 36.5)
PLATELET COUNT	237	K/UL	(140 – 440)
RDW SD	53.5H	FL	(37.0 – 51.0)
RDW DV	14.9H	%	(10.0 – 14.5)
MPV	10.1	FL	(8.5 – 12.0)
SEGS	53	%	(45 – 75)
LYMPHOCYTE	37	%	(20 – 45)
MONOCYTE	9	%	(2 – 9)
EOSINOPHIL	1	%	(0 – 5)
BASOPHIL	0	%	(0 – 2)
SEGS ABS	3.18	K/UL	(2.03 – 8.25)
LYMPHOCYTE ABS	2.22	K/UL	(0.90 – 4.95)
MONOCYTE ABS	0.54	K/UL	(0.09 – 0.99)
EOSINOPHIL ABS	0.06	K/UL	(0.00 – 0.55)
BASOPHIL ABS	0.00	K/UL	(0.00 – 0.22)
ABS NEUTROPHIL	3.18	K/UL	(2.07 – 8.80)
MANUAL BAND	0L	%	(1 – 4)
MAN METAMYELOCY	0	%	(0 – 1)
[RT UA]
URINE COLOR	YELLOW
URINE CHARACTER	CLEAR		(CLEAR)
SPECIFIC GRAVITY	1.025
URINE PH	6.0
URINE PROTEIN	NEGATIVE		(NEGATIVE)
URINE GLUCOSE	NEGATIVE		(NEGATIVE)
URINE KETONES	NEGATIVE		(NEGATIVE)
URINE BILIRUBIN	NEGATIVE		(NEGATIVE)
UR OCCULT BLOOD	TRACE		(NEGATIVE)
URINE NITRITE	NEGATIVE		(NEGATIVE)
UR UROBILINOGEN	0.2	EU/DL	(0.2 – 1.0)
LEUKOCYTE ESTER	NEGATIVE		(NEGATIVE)
URINE WBCS	0 – 1		(0 – 1)
URINE RBCS	0 – 1		(0 – 1)
EPITHELIAL CELL	RARE
BACTERIA	LIGHT		(ABSENT)

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

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).