oops

You know, I totally forgot to follow up on my nine-day illness. I did get better.

After reading some comments on my previous post, I realized that I did not tell my reading community about the resolution of my problem.

It turns out that I got better soon after I last visited the doctor. I was sick for a grand total of nine days, and eventually got better. It was strange to be sick for so long after not being ill at all for the past two years. I'm glad that I am feeling better and that the doctors were there to take care of me.

Hopefully, I will not be sick again for at least two more years. I am doubtful of that, especially considering a new family addition that should take place in a few weeks.

My next task at the doctor's office will be to ask how infant immunizations affect an immuno-suppressed person (such as myself). I know that some of the vaccinations are live virus, and I need to know if it will be a problem.

I probably won't find out about that stuff until January. I'll post again (later) if I learn more. Have a great one!!

Follow-Up from Friday's Appointment

I went to the doctor again on Friday. They said that the CMV test results were negative. At least that is a positive thing.

They ran a sonogram on my transplanted kidney while I was there to see if there were any problems. The sonogram came up good, with nice blood flow running through the kidney. They said it looked like I was getting more fluid, which is a good thing.

My creatinine was still at 1.7 on Friday. The doctor's original call was to have me go to the hospital and be monitored over the weekend. But, given that I promised to take care of myself, they said I could go home, drink LOTS of clear fluids (soups, Gatorade, salty stuff, etc) and take Imodium if needed.

I took some Imodium at noon, but did not need any more yesterday. I actually ate some semi-substantial food for supper last night, which is a good thing. And, all the food stayed down (also good).

I woke up this morning feeling well again (which is nice). I ate some Cheerios and a banana for breakfast. Now, I just have to see how the rest of the weekend goes.

I have another appointment on Monday to see the nephrologists. Maybe they will be able to give me some good news. I hope I am still feeling better!

Thanks for all the prayers - talk to you again soon.

(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!

Follow-Up From Appointments

I went in for my cardiologist's appointment and ran on the treadmill. I walked/ran for a little more than ten minutes to get my heart rate up over 161. The technician put me on the table and then looked at my heart and the pulmonary vein. She mentioned, during my test, that I was doing really well and that she did not expect to see anything wrong with my heart. The doctor, after reading the test results, told me that my heard and pulmonary vein were working just like they are supposed to be. This is great news! Based on what the doctor told me last time, it's likely that I am just noticing more how my heart and breathing are rather than they are getting worse.

So, there is nothing (else) wrong with my heart. I've still got mitral valve prolapse. My heart still has a moderate to severe prolapse. One day, I will probably need to have a valve replaced, if my heart continues to work the way that it does. But, there are no problems coming my way any time soon.

I also had a nephrology appointment this week. This was my regular quarterly appointment. The doctor was very pleased with the results of my 24-hour urine collection. She said that I had my best results on that test since my transplant. My labs were also great. My cholesterol looked wonderful (HDL was 43.0 and LDL was 69.0). This is great news, saying that my medication is still at the right levels. My creatinine stayed at 1.0 (great news) and they were glad to see me again.

I will be going back in about three months. I'm glad my kidney continues to function just as well. Stay tuned for more news as it comes up. I had a fever last week of 100 (for just a morning). I felt hot, but it was much better by lunch.

My cystoscopy results were great. The urologist called back while Jenny and I were getting her 20-week ultrasound. They said that my urine did not have any signs of cancer. So, that's more good news. I guess the problem that I had had with my urine a couple of weeks ago was all related to my natural polycystic kidney.

Thanks for reading. I'm glad to continue doing well with the transplant.

And remember, you can always follow me on Twitter for updates (other than the blog).

Cystoscopy and Fan Question

As a qiuck follow-up, I am feeling much better. It has been almost a week since my cystoscopy, and I think I am doing fine. I am back to using the bathroom a normal number of times per day (which is nice). There is little to no pain associated with it, and that's nice, too. I haven't had to take much Tylenol or anything else, so I'm appreciative. I also have not heard back from the urologist, so I am guessing there was nothing wrong with the urine sample that they sent off to the lab.

In other news, I received the following question via Facebook, from an R.K. the other day:

Yes... Sadly I was diagnosed on Monday. Go back in on Wednesday to go over the test results. I have 12 cysts and 6 stones. Went in for back pain. I just happened to be good friend with a urologist and went to see him over my general doctor. Did a full ct scan after the sonogram showed several stones. Says my kidney function is however at 100%. did they do an MRA on you to see if you had an aneurysm? That will be next. I went to B & N to find a cookbook, but the only ones are either vegetarian or diebetes. What does your diet consist of now? I also have had hypertensive blood pressure for years and sleep 15 hours a day. I'm now on lisinipril however, I'm still so exhausted from nothing. How is your body handling the transplant?

I had asked her about her PKD diagnosis, and she gave me that reply. As a response, I told her:

That's never good news. Being diagnosed with a life-long illness can be a big shock.

I was diagnosed when I was in college. I had pain in my lower back that turned out to be a kidney stone. They did a sonogram to make sure the stone was small enough to pass, and they discovered Polycystic Kidneys hiding inside. This was a huge shock to me since no one in my family had ever heard of it.

Do you have a family history of PKD? I was told that it is a dominant genetic disease, and that it is a guarantee that one of your parents has it if you do. They were not sure if my mom or dad was the carrier, but both my sister and I (only two siblings) have been diagnosed.

I don't remember if I had an MRA done. I've had many, many different scans done on my kidneys. They have all shown the same thing. I have a bunch of cysts, and the last time they measured, my right kidney was over 20 cm long.

As far as diet goes, the most important thing to do is to cut down on sodium and caffeine. The biggest danger for kidney disease patients is high blood pressure. So, if you can keep that under control, you are in good shape. As your kidney function declines (and you move through Stage 1, 2, 3, 4, and 5) your diet changes. They recommend less proteins like red meats as they are harder on the kidneys to process.

Your worse diet will be on dialysis. There are SO many things to watch out for it's crazy. But, don't worry about that unless you end up there (hopefully not).

And, after transplant, I'm up to eating anything I want. I have to watch out for fatty foods, since I'm on a steroid, and it's very easy to gain weight. I also still watch my blood pressure (just a smart idea for anyone).

I would suggest finding a good cardiologist and a good nephrologist (in addition to your urologist). The cardiologist can closely monitor your blood pressure and watch out for things like heart problems or cholesterol issues that may develop with your kidney disease. The nephrologist is a kidney expert that can give you your best advice about your kidneys, and get you on regular checks to monitor your progress. It's also important to make sure your doctors are aware of you kidney problems so that they don't prescribe many medications that are cleared through the kidneys (better for the kidneys long term).

Not being a doctor (only ever a patient) I would recommend a Glofil (pronounced "glow feel") test soon. That test gives a very accurate kidney function level. This way, you can have a base reading while you are still young and are at full functionality. Your nephrologist would be able to schedule that. It's about 3 hours long and mainly involves drinking lots of water and tracking a radioactive dye as it passes from your body.

If you're sleeping fifteen hours a day, I'd recommend getting checked for anemia. I had that, for a while, and it really sapped my energy. They have medications to help, but if they find it, I'd suggest iron supplements and more spinach.

Please let me know if you want to ask anything else. I'll be glad to give you any and all information as I have experienced it.

I did ask her for permission before posting her message and my response. She said that it was fine. I just wanted everyone to know that I am still answering questions, and that I still hope my advice or experiences are useful to others.

I also got a new comment on an older post where someone named Heidi enjoyed my explanation of the Glofil test. I'm glad to help!

I'll see you again next week to tell you about my echo stress test. See you later!

After the Cystoscopy

I went to the urologist on Friday afternoon. He wanted to do a cystoscopy to make sure that everything was okay with my bladder. A cystoscopy involves having a camera placed inside the urethra and into the bladder. The doctor looks around in the bladder and checks for any problems.

So, they start by giving you some lidocaine gel (a local pain deadener) into the end of the urethra. They waited a few minutes for the numbing to take full effect. Then, they ran the camera, which is on a long tube, up and into the bladder. It was mildly uncomfortable. In fact, I think that passing kidney stones is much worse. The camera and tube are flexible, and there is saline hooked up to the device, so that the doctor can fill the bladder to get a better look.

The doctor looked around for a few minutes and he did not see any problems. He said that he would send off my urine to a special lab to check for any cancer cells. That was his biggest concern. I have a higher likelihood of developing cancer because of the immunosuppressant medications.

It turns out that everything is okay (as far as they can tell). I don't have any problems, and did not have any more blood in my urine or any particulate. And, the doctors didn't really see any other problems (nor have I had any calls from the nephrologist about issues).

The only down-side has been after the test. Having a camera shoved up inside of you is not really so natural. There has been a little bleeding since the procedure (and it was pretty painful the first 24 hours or so). The blood is all gone now, and most of the pain is gone. The pain has lasted a little longer than I would have preferred. And, I noticed today that I was having to go to the bathroom much more often than I did Saturday or Sunday. I imagine that my bladder is still mad at having something inside it rooting around.

That's about it for today. Thanks to everyone that prayed (I know that helped with my anxiety). And, there may be a post later in the week with a conversation I've been having with someone. If not, you can look forward to my Stress Echo Cardiogram which I am having on Friday.

Enjoy your week. Remember, you can follow me on Twitter if you want a more real-time idea of what I do.

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.

Cardiologist Appointment - June 18

I went and saw my cardiologist on Thursday, June 18, 2009. I realize that it has been almost two weeks now since I went to see her, but that's not my fault. We have been very busy here at home and I have not had the opportunity to make a good blog post.

That's not to say that this blog post will be either informative or humorous, but at least it will exist.

All that being said, my appointment was to have a 2D echo cardiogram done on my heart. This apparently went well, according to the doctor. She said that my results are the same as they were last year, and that she would probably not need to see me for another echo for twelve months. This is always good news (yippie!).

I told her that I had been experiencing some shortness of breath when I walk up stairs. This is not a problem when I walk for a half hour on the treadmill. Even when I am carrying small weights, I still do not have trouble breathing. I only notice the breathing being harder if I am walking up the stairs, or working out in the yard (bending and standing a lot). She told me that it might not be a problem and that I may just be noticing this more since I am exercising and paying more attention to my heart and lungs.

That being said, she told me that she wanted to run some tests. I asked if that meant she would try to kill me, and she chuckled. She asked if I had ever done a stress test before, and I indicated that being the reason I had asked about murder. She laughed again, and told me that we should go ahead and make sure my heart functions correctly when it is actually having to do something (not just when I am laying down on the exam table).

So, on July 10 (which will be my fifth wedding anniversary), I will head back to the cardiologist's office with running shoes and a pair of shorts. There's no way I'm doing this test in smooth soled shoes and khaki pants. That's just crazy. For those of you that don't know, the doctor is going to have me walk on a treadmill that gradually increases in speed and angle of ascent. In layman's terms, they want me to start walking lazily on a park path and work my way up to attempting to run up a large hill. Once I get to the point of nearly passing out, they start a five-minute timer and see how well your heart does.

As far as I can tell from the one time I did this for my transplant testing, if you live to hear the timer beep, then your heart functions correctly. Last time, I obviously passed, and I expect to pass again. I may ask to see if they can start my incline a bit higher so it doesn't take nearly fourteen minutes to complete! That's about how long I was on the treadmill the last time. But, of course, as a man I can do it. (Here, you can imagine me with my chest stuck out, facial hair gleaming, and muscles bulging inside my shirt).

That's about it, healthwise. You will notice that I updated the links on the right-hand side of my page (for those of you using my style sheet and visiting on line). I changed the link from our now-defunct adoption blog to our new hot "family" blog. It's called 'Journey Through Parenthood' and can be reached at http://journeythroughparenthood.blogspot.com/. I think that's the longest name Jenny could get (sorry about that). Update your RSS readers, bookmarks, or that little scrap of paper next to your monitor (yes, I know you have one).

Nothing eles from me at this time. If you just can't get enough of Nathan, you can always follow me on Twitter. If you are not familiar with Twitter, just imagine what awesome would smell like, mix in some Internet, and add a dash of real-time updates. Oh yeah!

See you next time (probably after July 10).

Not About Kidneys: But Still Important

Hi, it's Nathan. I know that it has been a while, but not too many exciting things have been happening (medically speaking) to me. However, I do have a major announcement. Now, normally, this blog will NOT contain information that does not pertain to my health. But, for today, we are going to deviate.

Jenny and I are pregnant, and will be having a baby in mid-December (2009)!

Below is the story that is posted on our other blog. This blog was originally going to be about our adoption process, since the doctors told me that my chances were very close to zero for ever fathering a child naturally (ha, showed them!). Though we are not stopping our pursuit of adoption, it will be on hold (per the agency) until after the birth of our child. The following paragraphs were written by Jenny:

When Nathan and I decided to pursue adoption we did so because the doctors told us we had a VERY small chance of becoming pregnant naturally. They recommended procedures that involved lots of doctor manipulation. We did not have peace about going down that road so we chose adoption. However we saw no point in going back on birth control. We said if I ever got pregnant it would be because God wanted it to happen. We are excited to announce that God decided that a pregnancy IS in His plan for us! I am 14 weeks pregnant, due December 16. Everything looks great so far, the sonogram showed a good strong heart beat. I also had a first trimester screening for Downs Syndrome and Trisomy 18 and all those results came back normal.

After finding out I was pregnant one of the first things we talked about was how we felt this affected our adoption process. Nathan and I both feel that God has still placed a desire in our hearts to be adoptive parents. We believe that God is in control of timing and don’t even feel a need to put ourselves on hold or anything. We realize this means we have the possibility of having 2 babies very close together. =) We know God will work our all those details though. I’m going to call our agency this week and let them know what’s going on. Once the baby is born we plan to create an additional page to add to our scrapbook.

Here are some things you can pray for:

• Healthy pregnancy
• Healthy baby
• God’s perfect timing on our adoption
• Continue to pray for our birth mother

Since this blog will no longer be solely focused on adoption I think I’m going to change the blog’s web address. So be on the look out in the next few days for a post giving the new address. You will want to make sure you update all your bookmarks to the new address once it is in place. We are still on an adoption journey, and this pregnancy is now a part of that journey.

Thanks for taking a few minutes to read something non-kidney (at least so far) related. If you would like to follow developments on this story, you can always visit http://nmccart-adoption.blogspot.com/ for details. Please note that this link will soon change, but I will be sure to update it in the side bar (to your right and my left, as I am behind your screen looking at you).

This is truly a miracle, and we continue to trust God for his best in our lives. As you all (may or may not) remember, my Polycystic Kidney Disease is most likely the autosomal dominant type. This means that there is a 50% chance of the gene being passed on to any of my children. Given that both my sister and I have PKD, it is probably not the autosoal recessive version (the more deadly at a young age). We will have to see, as time goes on, what we decide about testing and kidney disease and things of that nature.

For now, we appreciate any and all prayers. I will be blogging later this week on my cardiologist appointment this Thursday.

See you soon!

Post-Transplant Clinic: April 2, 2009

I had another quarterly post-transplant appointment with the Dallas Transplant Institute in lovely downtown Dallas, TX. Once again, it seems that I am doing well.

Here are my results (of note):

• Creatinine is at 1.0 (same as last time) -- this is still GREAT
• BUN is at 12.0 (up from 11.0 last time) -- this is GREAT
• Triglycerides were at 253.0 (which is bad, but I also had donuts for breakfast)
• Cholesterol was at 141.0 (which is actually low, oddly, compared to my triglycerides)

The doctor asked me why I had eaten donuts before coming in for blood work. I told them that if they want me to do fasting labs that I will NOT be scheduling them at 10:30 am (meaning get blood drawn between 10:30 and 11:00). As it turns out, they want to do an accurate check, so I'm supposed to have a fasting lab done next time, and I scheduled my next appointment for 7:40 am.

They also told me that I need to have a sonogram done of my "native" kidney. Your native kidneys are the ones with which you are born. In my case, since I had my left one surgically removed, I have only one native kidney left, and it is on the right side. The doctor reminded me to tell the technician that so that they don't spend thirty minutes looking for a kidney on the left that isn't there.

Additionally, I have not done a 24-hour urine test in over a year. So, they gave me a few buckets to fill up. I'll probably do that some Saturday here in the near future and drive those buckets down to the transplant clinic early on a Monday morning. I figure that as long as I get the 24-hour urine test back to the doctors WAY before my next appointment, they can tell me if there are any problems when I see them (or call if there are SUPER problems).

Neither of the procedures listed above are any problem to do. The sonogram is in the office and will just be at my next appointment time. The 24-hour urine collection is done at home. The only negative part of that is keeping a SEALED container of urine in your refrigerator all weekend. Granted, that's not a problem for us as we have no children or any guests staying with us, but I have that it can be an issue in other households.

All is well with me. My weight continues to fluctuate around 185 lbs. My height stays steady at 6-feet and 2-inches. So, I'm not really overweight, though I feel that way some times. I think my residual self-image has me still being around 170 lbs (which is small). I doubt I would ever be that, no matter how much I exercise or diet.

Speaking of which, I am working on my exercise. I try to walk on my treadmill at least once a week. I try to take the stairs at work (to the third floor) every day. And, with diet, I just eat what Jenny feeds me, so there's not much worry there.

Thanks for reading. I know that I don't update all that often, but whenever I received e-mailed questions, I try to answer them right away. See you all next time (around the end of July).

2009 Glofil Test and 2nd Kidneyversary

Greetings everyone!

I'm here to report on more great news. I had my 2009 Glofil test on Thursday, January 8, 2009. As far as I know, the results should be good (since they did not call to talk to me that afternoon). The test went very well. I had to drink seven glasses of water to start, and then only 4 glasses over the next three tests (one, then two, then one). The test was nice and easy. I made sure that I drank plenty of water for a few days before that. It really helps you with the test if you are well-hydrated.

I also saw the nephrologist while I was at the office. They were glad that I have been feeling well and did not have any changes for me. My creatinine was at 1.0 (which is wonderful). All of my other lab report numbers looked great. As always, my magnesium was a bit low. My sodium and chloride were also a bit low, but that's not a problem. The cardiologist had said that my triglycerides were a bit high and that I needed to watch them. According to the lab report from the transplant clinic, my triglycerides were at 201.0 mg/dL. The standard range is 32.0 to 238.0.

Sunday, January 11, 2009, will mark my second kidney-versary. I have been feeling great. Since my surgery on my nasal septum, I have not been ill. I have been feeling great and am loving my transplanted kidney. I am appreciative every day for the family that made the difficult choice to donate the organs of a loved one. I am thankful that they made that choice that has changed my life for the better.

In other news, it appears that there are people (in the world) that have found my blog interesting (and possibly slightly helpful). I received an e-mail this week from a guy named Micha. It appears that his wife has recently discovered that she, too, has polycystic kidney disease. It sounds like they are young and that she is not near kidney failure at this time (which is good). I'm glad to hear that my posts may have been encouraging to them. They are living in Zambia for a few years. If you would like to read their blog, it is at http://mccoy.wordpress.com/

Finally, I have also received a comment on the post "Many Tests Later" regarding my nasal septum surgery. The commenter asked about how my post-surgery recovery was and what was to be expected. I left another comment to hopefully help the commenter know that I have been doing well and was glad to have the surgery.

Thanks to all the readers that are out there. I'm hoping that you all have enjoyed your reading today. I know that I don't post all that often, but I have been doing great. Please feel free to continue to comment and I will keep doing what I do.

See you next time!