Saturday, July 25, 2009

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).

Thursday, July 16, 2009

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!

Monday, July 13, 2009

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.

Friday, July 10, 2009

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.


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).

Tuesday, July 07, 2009

(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:

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.