"Did it work?"

(Friday, June 4, 2010) “Did it work?”
After a lot of discussion during our follow-up visit yesterday, Patra asked the doctor the ultimate question. “Did the transplant work?”

Drum roll. Pregnant pause. Anticipation builds. Are you sitting down?

Answer. “We don’t know yet.”

There you go. That’s the bottom line. I will try to give a little background to let you know how they arrived at that answer. Doctors are very scientific and use big words (I’m glad lawyers don’t do that), but I will try to explain what’s going on in language I understand.

My “nasty little disease" (aka amyloidosis) attached itself to my kidneys. It damaged both of my kidneys and caused them to “throw off protein” into my urine. In addition, this disease causes me to retain fluid.

The latest tests show improvement in many areas of the blood work. This is good.

My protein levels, however, are still very low; and most significantly, my kidneys are still “throwing off protein.” A lot of protein! This is not good.

My doctor explained again (I have heard this since my initial diagnosis and I am now totally and completely convinced it is true) that amyloidosis is a “difficult” (some might even say “nasty”) disease for the patient to endure and for the doctor to treat. It is not unusual for amyloidosis patients to have a “delayed response” to a bone marrow transplant. So, there is still the possibility that my transplant worked. It might just take more time for the disease to respond, and for the test results to demonstrate that it worked.

However, my doctor is “concerned” because in most patients there is at least some improvement in the numbers three months after a transplant. Unfortunately, my test results do not show any improvement – my numbers are high. I have decided that I do not like it when my doctors tell me my case is “interesting” or when they tell me that they are “concerned.” When they use those terms, I get very “interested” and “concerned.”

I will repeat the tests in three months and hopefully at that time, there will be at least some improvement. If there is no improvement, there is a drug which has shown some effectiveness with amyloidosis patients, and I may be started on that drug.

When I weighed in yesterday, I had gained another 5 pounds since my last visit (less than 2 weeks ago). I didn’t tell the doctor, but this most recent weight gain may not be all fluid retention. We had a Memorial Day picnic Monday with kids, grandkids, and good friends. Patra had a wonderful spread of food. I couldn’t resist and I may have “cheated” a little on my diet, but what a great Memorial Day!

Seriously, because of the fluid retention, I will start a diuretic tomorrow. These medications create a delicate balancing act with me. When I was on a diuretic before my transplant, I passed out and was taken by EMS to the hospital. At the hospital, I spent two days trying to get my fluid levels normal. Tomorrow, I will start off on a low dose of diuretic, and we will try to slowly take off some of this fluid.

What does this mean? It means that I’m going to ask you to continue to pray – for at least three more months. So take your time, go slowly, don’t rush or panic. But please pray that over the next three months my kidneys will kick into gear and stop throwing off protein. I also need the numbers to start showing some improvement. Pray that the lack of improvement in numbers so far is only a delayed response to the transplant. Thanks! I know you will because you have proven your faithfulness in prayer already.

I can’t end today’s blog without mentioning that I was able to make it to church and to my Bible study class last Sunday. Words really cannot express how much this visit meant to me. Our church family has been incredibly supportive of Patra and me during this journey; and it was great to be with them and to hear God’s Word taught and preached. I can’t wait to go back to church again soon.

Over the past several days, I have meditated on the following verse from Psalms.
Blessed be God, Who has not turned away my prayer, nor His lovingkindness from me. (Psalm 66:20 NASB)

Bob

These pictures will show you how much we all enjoyed our Memorial Day Picnic.


Megan enjoying the pool


Avery wearing her memorial day colors proudly


Andrew flying high! (Thanks to his dad, David)