In case you were wondering...

A favorite teenager of mine told me that this blog is quite boring. I guess it isn't too action packed in the eyes of a teenager, but my main purpose was to keep people informed & answer questions that many people have (& some are hesitant to ask).  I guess the action will come when the transplants happen!  So, here are some common questions...in case you were wondering...

Am I on kidney dialysis?~No, although my kidneys are failing, they haven't reached a point where I need dialysis.  My nephrologist has always told me that the ideal situation would be for me to never go on dialysis--he hoped for a transplant before that time. So, since my liver situation warrants a transplant, my surgeon wants to be proactive by removing my diseased kidneys & give me 1 new one at the same time of the liver transplant. 

Why can't I have a living donor?~Living liver donors (that's a tongue twister) are becoming more common; however, a donor cannot donate both a kidney & liver.  If I had 2 separate donors for the 2 organs that I need, that would increase the chance for rejection. So, the best choice for my situation is a deceased donor. 

Am I taking lots of meds right now?~I have been fortunate to only need 2 blood pressure meds. The medical staff always is amazed at that. I guess the typical transplant candidate has quite a long list. However, I'll be the proud owner of a pill box after surgery :)

Where am I located on the waiting list?~When a person needs a kidney, they go on a waiting list & accrue time to "earn your way" to the top of the list.  This system works because dialysis can keep people alive when their kidneys aren't doing the job adequately.  When someone waits for a liver,  it is different because there is no treatment like dialysis to perform the liver function & keep the patient healthy.

Therefore, a system has been established to rank people on the liver waiting list according to their health.  They are listed in order by something called a Model End-stage Liver Disease score (MELD).  Three blood tests (liver function, kidney function, and clotting factor) are done & calculated to give a MELD score, which can range from 6 (less ill) to 40 (gravely ill).

My MELD score calculates to around a 15.  That very low score is because my liver is functioning fine & my kidneys aren't too bad yet.  At a 15, I wouldn't get a transplant for a very long time.  My surgeon said that in cases like mine, they sometimes take into consideration the other factors affecting my health.  The size of my liver is causing other problems, which don't show on the MELD score lab work.  Therefore, he applied to the National Board that determines transplant issues & tried to get me more points to move up the list.

What a blessing--on September 12, I was granted more MELD score points & moved up to a 22 and then on December 6, Dr. Cameron re-applied & I was moved up to a 25--woo hoo!  Sometimes patients are transplanted at those scores, so I'm getting closer!

When a liver becomes available, UNOS (United Network for Organ Sharing) starts at the top of the list and keeps working down the list through patients until they see a match by blood & then tissue type and other factors.  So, to answer how many people are ahead of me--there's no way of telling that because I could be the first person to match the donor, even though I'm not at the top of the list. 

As a dear friend at church keeps reminding me: God has the perfect match picked out for me.  I just need be patient until He's ready for me to receive that gift. No need to worry--He's got this covered!

With love and hopefulness,
Belinda

Philippians 4:6-7   "Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."

Want to be notified for new posts?

Merry Christmas !!

Many people have asked to be notified when I have my transplant.  Since I have no idea when that will be, and I don't know how much prior notice I will have, I've found a way for you to know when we get the call from Hopkins.

I've added something new to my blog.   It will tell you when I publish a new post.  I know that many of you aren't comfortable with blogs, so I've tried to make it easy for you.

Here's how:


Go to the bottom of my blog & you'll see a box labeled "Follow by Email".
Type in your email address & click "submit"
Follow the steps (not many) to complete it.
You should receive an email to confirm it.

This won't sign you up for anything else--it's just a way for you to be notified of new information so you don't have to keep checking the blog.  Hopefully, I'll have some good news soon!


With love,
Belinda

How Meg got her name

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. 

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)!

Do I win a prize?

For about 18 years, my only treatment had been BP meds & I was feeling fine.  Then, I started noticing discomfort & swelling in my abdomen. I thought it was just my new "post-baby body". However, things just didn't feel right to me--I thought it was more than that. I was passed through several tests & specialists until it was confirmed that I had cysts on my liver also (polycystic liver disease).  

A gastroenterologist in York evaluated me & said that there was nothing he could do for my liver situation. He also said that mine was the largest liver that he has ever felt.  Do I win a prize?  I suppose that it could be fun to hold a record for something; however, an award-winning liver is not what I would choose.  It was a blessing, however, to connect with him because he referred me to his mentor at Johns Hopkins.

To help you understand what my "prize liver" is like--God designed our liver to be positioned under our right rib cage. By this time, my liver had extended down below my waist & across to my belly button. 

So, it was about 10 years ago that I first saw Dr. Mezey, a hepatologist (liver specialist).  His experience was comforting--he wasn't alarmed at the size of my liver because he had seen many livers and many were much larger than mine. Some of his med students were amazed at its size but he discussed it very calmly & confidently.  He explained that even though my liver is large, very rarely do the liver cysts affect its function (unlike the kidney cysts do).  He said the only possible treatment  would be to aspirate the fluid from the cysts but the risk of infection is great vs the chance for any relief.  Basically, he said "live with it--there's nothing we do for livers like yours."

I was a little disappointed that there was nothing that could be done but then told myself that this is God's plan for me--just try to learn the best way to be comfortable & don't dwell on it.  I learned to eat smaller meals & elastic pants became a dear friend--those were my remedies!

"For I know the plans I have for you," says the Lord.  "They are plans for good and not for disaster, to give you a future and a hope."                                                Jeremiah 29:11

~Belinda