Over
the past 10 years, my kidney function has been very slowly declining
but a kidney transplant still looked far in the future. My kidney
doctor kept close watch on me & my liver still functioned fine.
However,
during the past 2 years, I have felt my liver getting larger. It
feels like my ribs are being pushed from inside & seems like I'm running out of room. This brings back memories of being about 8 months pregnant--depending on the day and meal :).
I heard of a new procedure to drain the liver cysts & then inject them with alcohol to stunt the cysts from regenerating. Upon consultation with a doctor in Harrisburg, I discovered that I was not a candidate for this procedure because my cysts were too numerous. He said that there was a small chance that he could give me a few months of relief--wasn't worth the risks. He also said that he had no other treatment options for me. Again, I was disappointed but thought--just live with it.
This past Spring, I participated in a Redemption Bible study @ our church. We discussed all parts of our life and anything that we feel that we need to release to God (instead of trying to control or be anxious about them). I really didn't feel that I was worried about my health, but I prayed to totally surrender everything to Him. About 1 month later, God revealed His plan to me:
During a routine check-up with my kidney doctor, I shared my feelings about my liver size & how it has gradually affected my life more--especially with digestion & some physical limitations. He said that on physical exam, it had grown to a size where he couldn't feel my right kidney anymore. He suggested that I return to see Dr. Mezey @ Johns Hopkins again.
So, in June I saw Dr. Mezey & he reviewed everything over the past 10 years since I saw him. I carried copies of all my CT scans. It was humorous to see how technology had changed--10 years ago the numerous sheets of CT films were in a heavy, large folder. The latest ones were on 1 CD! He didn't have any recommendations for treatment options but referred me to Dr. Cameron, a kidney/liver transplant surgeon, so that I would be established with him when it was time for a kidney transplant.
Then 2 weeks later, we went to Dr. Cameron's office. First, the transplant nurse and social worker interviewed me. I was really confused--it seemed like they were starting a complete transplant evaluation. I said "I think you're confused--I'm only here for a consult". They said, "okay, we'll stop with this paperwork & bring in Dr. Cameron."
We immediately felt a connection with Dr. Cameron. He showed me my CT scan & explained that I only had about 10% of good liver tissue that didn't contain cysts. He also said that the location of my intestines was being altered because the liver was intruding into places that it isn't designed to be in. He was focusing on my liver & said "you don't need to live this way". I was a little slow to understand the meaning of that but soon realized that I was the one who was confused (his staff knew what he was thinking). He was going to recommend a liver transplant to me. He said that he has had other patients with PLD & they have had great success with liver transplants. One lady's liver was so large that people frequently asked her when her baby was due.
So, he said "I can give you a Mercedes". Now, I was really confused. I have never wished for a Mercedes--my mini van suits me fine. However, he was referring to the incision that I would have with a transplant--it would be shaped like the Mercedes symbol. This whole thing seemed unbelievable. I had been prepared for yet another doctor to tell me to just live with my liver situation. But, this doctor was telling me that he could do something to help me. He explained more about it & then Todd asked how soon he would recommend proceeding with a transplant. Dr. Cameron's response was "why wait?" He felt that I was on my way to a kidney transplant anyway. He recommended removing all the bad parts (liver & both kidneys) and give me new ones. Interior decorating with new parts--woo hoo! He also said that there are many advantages to not waiting until my kidneys fail more & I risk developing more problems with my intestines or other things.
I said that I would need some time to think & pray about it, so he said "call me". After he left, I could tell that Todd had made up his mind. I asked God "why not?" and had complete peace about everything. I rarely make quick decisions (you'd understand if you saw me with a restaurant menu). However, that peace that feels deep within told me that this was the route for me. So, we called the staff back in & started the transplant process.
We immediately felt a connection with Dr. Cameron. He showed me my CT scan & explained that I only had about 10% of good liver tissue that didn't contain cysts. He also said that the location of my intestines was being altered because the liver was intruding into places that it isn't designed to be in. He was focusing on my liver & said "you don't need to live this way". I was a little slow to understand the meaning of that but soon realized that I was the one who was confused (his staff knew what he was thinking). He was going to recommend a liver transplant to me. He said that he has had other patients with PLD & they have had great success with liver transplants. One lady's liver was so large that people frequently asked her when her baby was due.
So, he said "I can give you a Mercedes". Now, I was really confused. I have never wished for a Mercedes--my mini van suits me fine. However, he was referring to the incision that I would have with a transplant--it would be shaped like the Mercedes symbol. This whole thing seemed unbelievable. I had been prepared for yet another doctor to tell me to just live with my liver situation. But, this doctor was telling me that he could do something to help me. He explained more about it & then Todd asked how soon he would recommend proceeding with a transplant. Dr. Cameron's response was "why wait?" He felt that I was on my way to a kidney transplant anyway. He recommended removing all the bad parts (liver & both kidneys) and give me new ones. Interior decorating with new parts--woo hoo! He also said that there are many advantages to not waiting until my kidneys fail more & I risk developing more problems with my intestines or other things.I said that I would need some time to think & pray about it, so he said "call me". After he left, I could tell that Todd had made up his mind. I asked God "why not?" and had complete peace about everything. I rarely make quick decisions (you'd understand if you saw me with a restaurant menu). However, that peace that feels deep within told me that this was the route for me. So, we called the staff back in & started the transplant process.
My liver had reached such a size that I thought it deserved its own name. In medical terms, the suffix "megaly" means large. Through my medical records & visits, I have heard megaly attached to my kidney & liver. So, I figured that "Meg" would be a fitting name for my liver.
Thanks for listening--this was a really long post.
Love,
Belinda & Meg
~~By the way, I chose the background for this blog because it reminded me of the ultrasound pictures that I've seen of my kidneys & liver (have to find humor in this somehow)!
