Testing and More Testing

Day one of testing finally arrived. My day began at 7:30 am, in the lab.  I was finally able to rid myself of the big, cold, full jug and None too soon!  As I walked into the lab with my huge tote bag carrying not only “the jug”, but also everything I thought I might need, the phlebotomist laughed and said, “Unload the bag.” When she saw that my jug was full, she smiled brightly and said, “Oh child, you did good!” She seemed quite pleased with me and the humor of driving across state lines with a jug in a cooler burst out of me in a story that made her call over other lab employees, so we could all laugh together. It was a really good way to start my nervous and somewhat embarrassed day. I soon learned that nothing about kidneys or bodily functions seemed to bother anyone. When I looked through the open doorway to the back of the lab, there was a whole other room I was oblivious to at first. There was a neat row of big jugs lining a counter top and rows of nurses, techs and pathologists peering through microscopes. Just the beginning of another normal day in the world of transplantation!

My time in the lab took a good bit of time, in part because I was learning my way around checking in. At least, thirty minutes was wasted searching for my information in the computer. The first thing I learned was you always checked in with the same phrase, “Hi, my name is Kathy and I am going to be (I hope) a kidney donor.” This immediately clues them to ask if you know your recipient. The majority of kidney donors know their recipient, most often a family member, and this is called a directed donation. However, the donors I really admire are those who do not! This is a non-directed donation or an altruistic donor. Wow! I gave my uncle’s name and voile’ there was all my information. As a donor, you incur Zero medical cost! The recipient incurs all cost. My uncle’s insurance had already approved him for a transplant, therefore paid all costs in the search for a donor. I was the third person to go through testing for him. Once I figured out I was to give his name for insurance purposes, each time I went to the transplant center became quicker.

My first visit to the lab, I gave eighteen vials of blood, which took two sticks as the first try clotted off and refused to give any more blood, as if to say, “Enough already!” I had to give yet another urine sample. I don’t know every test run on all that blood. I do know it included general chemistries, complete blood counts, basic metabolic panels, kidney functions,  liver functions, pancreatic functions, several blood disorders, multiple drugs testing, AIDS testing, all hepatitis testing, tissue typing, cross matching and several viruses. One of the virus checks would turn out to be a bigger deal than even the specialists with all their degrees and years of experience, would suspect.

Tissue typing, cross matching and antibody screening are considered part of the Histocompatibility testing performed to predict the compatibility between a living donor or a deceased donor organ and a potential recipient. Rejection of the transplanted organ is less likely to occur when the donor and the recipient tissues are closely matched. (Taken from: University Transplant Living Kidney Donor Education Book) Chances of rejection are somewhat higher with deceased donor organs than with living donor organs. Living kidney donation is preferable over deceased donor organs.

In tissue typing, the blood test checks the tissue match between six codes on the transplant recipient and your white blood cells. The more matches found, the better chance the transplant will be successful, long-term. My uncle and I were a perfect match! This was our first miracle! Tissue typing is repeated days before surgery. In our case, it was repeated two days before surgery.

Crossmatching determines how the recipient will react to your organ. This determined how my uncle’s body would react to my kidney. At this point, I had learned it was Very important to understand the difference between a “positive match” and a “negative match.” In my opinion, it is backwards! Positive is bad and negative is good. A positive crossmatch means your organ will not match the recipient, you are not compatible. The recipient has certain antibodies, a protein substance, which immediately reacts against donor cells causing the donated organ to be rejected. A negative crossmatch means your organ is a match and compatible. It is not necessary to be perfect matches for a transplant to take place, but the closer you are, the better.  I remember holding my breath, so afraid of what this blood test would reveal. Our second miracle! We were compatible. These two miracles were just that! Repeatedly we heard that we were perfect matches! What makes the statistical odds of this happening is we are not related by blood. To be so perfectly compatible is rarely seen outside of blood lines. Later, more in-depth code matching would occur and once again we were perfectly matched, beyond the original six codes tested. Crossmatching to me is the most amazing thing. It can be wonderful as in our case, but it can also be heart breaking. Two days prior to surgery we were again crossmatched. We again matched perfectly. The morning of surgery we were yet again crossmatched and again perfectly matched. There is a strange phenomenon that can happen and my doctors and nurses told me they have seen it happen twice. For some unexplained reason, days or even hours before surgery, everything changes. For some unexplained reason, what was a match NO longer is! How heart breaking that would be for both the recipient and donor. This is the scenario I most feared. How I have thanked God it was not the case.

The last part of the Histocompatibility testing done was to once again do an Antibody screening. My internist in my hometown did the initial screening. I was so grateful that God sent April into my journey. She was the sweet phlebotomist who broke down in tears and told me her story of being rejected as a donor. She, like Cody would be used to remind me there are people in this world who do what they say they will do and both of whom,  were used to encourage me. I was reminded often through this long, grueling process that many more donors are rejected than approved. There is such a great need! The transplant center did more in depth screening. My education book that I referenced above describes antibody screening this way: An antibody is a protein substance made by the body’s immune system in response to an antigen. An Antigen is a foreign substance such as a transplanted organ, blood transfusion, virus or pregnancy. Because the antibodies attack the transplanted organ, the antibody screen tests for panel reactive antibody (PRA). The white blood cells of the donor and the blood serum of the recipient are mixed to see if there are antibodies in the recipient that would react with the antigens of the donor. Again, we were compatible. This would also be repeated several times.

After the lab, I reported to the cardiology department and would undergo three hours of heart testing. Very little of this time was spent waiting. I started off with a stress test, EEG, EKG, and several other tests including two using nuclear medicine. This was the only point during the process I somewhat stalled out. I was not prepared for nuclear medicine. Years earlier, I had undergone a nuclear test for my gallbladder and Swore I would Never do it again! Never, never, never! It made me feel horrible and took days to get over. The nurses assured me I would not feel sick afterwards. I made them swear, they were telling me the truth.

Next, I made my way to the transplant center to meet the doctors. By this time, Cody, my donor coordinator had found me in the building and it was really nice to put a face with a name. I met my kidney specialist/nephrologist first.  He explained many things to me and in the middle of doing so; the computer dinged with my preliminary tissue typing and crossmatch results. This was just preliminary as the full results would take days, but he told me the results were very promising. (It was much later that we were told how perfectly we matched.) Until my interest in donating my uncle a kidney, I had never heard the term “living donor.” He explained how much more advantageous a “living kidney” was as compared to a “deceased donor kidney.” Truthfully, I found the whole concept and process very fascinating. He discussed many myths surrounding being a “living donor” with me. One of those myths I have already shared with you in one of my earlier posts. They test at a molecular level. They look at your DNA. You really can’t hide drug or alcohol use. It’s just best to openly and honestly discuss this with them up front should you consider becoming a donor. I hope you will! Not all drug use automatically excludes you as a potential donor. By this time, more results were pouring in and he realized this wasn’t an issue and moved on to another myth. “Everyone can live with one kidney!” I read this on countless websites and it is Not true! Some people can live with one kidney. Testing ultimately revealed I could live with one kidney. One of the funny things he told me was that many times potential donors come in for testing and he had to reveal to them, apparently they were born with only one kidney. Obviously you can’t live with zero kidneys and thus would not be a potential donor.  Imagine trying to donate a kidney and finding out you only had one! The most fascinating thing we discussed was that when one kidney is removed or seriously damaged, say in a terrible auto accident, the remaining kidney begins to grow! Amazing! Two kidneys act kind of lazy because they have a sibling to share the work load. But, remove one and the remaining kidney starts to slightly grow and enlarge. The remaining kidney picks up the slack and becomes a workhorse. How amazing is that! My kidneys and yours are not twins. They are not exactly alike. One is usually bigger than the other for one thing. In some people one can be much bigger than the other. This determines which kidney remains and which is removed for donation purposes. They prefer to leave the donor with the largest kidney. If possible, they prefer to remove a donor’s left kidney as it is somewhat easier to get to. Sizing would be determined by CT scans later in the day. Mine were of similar sizes, therefore my left one would be the one given to my uncle.

My uncle had been through a lot. His window of time had almost closed. Every doctor I met knew my uncle and knew I was the third candidate to be tested. My nephrologist made it clear to me that he was my doctor. As much as he cared for my uncle, he was my doctor and all decisions would be made in my best interest. I could sense he truly cared about my uncle and how little time he had left. He really was concerned about the gravity of my uncle’s situation. Yet, he would vote yes or no on the transplant committee based solely on my ability to live a long life with only one kidney. While I appreciated his honesty and his care about my outcome, this was very hard for me to hear. Of course, I wanted the best outcome for myself, but my uncle was out of time. Many people, most people can live on dialysis a long time. My uncle was not one of those people. He had been on dialysis over three years and it was taking a toll on his heart. It was damaging his heart. My uncle’s cardiologist told him it was reversible, but he had to get a kidney soon. I left with a lot of information and some hope based on preliminary results. But, my heart was heavy. I was concerned my uncle might not have enough time to test another potential donor should I be rejected. As I was leaving, I decided to just bite the bullet and ask him about the elephant in the room. The thing I most dreaded discussing, the million dollar question. I asked him, “Will my weight impact your decision?” He literally looked at me like I was crazy. He replied, “No, why would you think so?” This led to a discussion that was funny but also very informative. If you are considering donating, your weight has little bearing on the decision made. What is important is where you carry your weight. Carrying weight around your middle puts extra pressure on your organs. This is bad and could affect the decision made to approve you. Fortunately for me, I have a small waist and big rear-end. Again, no problem.

I had fasted prior to blood work and was already tired and very hungry. Because, getting checked in took longer than expected, there was no lunch break for me. Thank goodness I had thrown a granola bar in that big bag, which I ate on the way to see the surgeon. I was shocked when he walked in the room. He was so young or was it, that I was old? I swear he looks about eighteen! He explained how the surgery would be performed. Again, he began his explanation about the size of kidneys. Later scans would determine which kidney would be removed and which one I got to keep. Getting to your left kidney is easier. I want to tell that I had done a lot of work before arriving for day one of testing. I may have told you earlier, but want to again. The more you do up front, the less time is needed for a decision to be made. I had sent some paperwork ahead and brought more with me. The surgeon’s biggest concern was my back. This shocked me! What! I did not expect this at all. I explained that my neurosurgeon at home was supportive of my decision and in no way felt having one kidney would compromise my back. I had my latest MRI reports with me. His concern stemmed not from my spine issues, but from the positioning of my body and spine during a long four hour surgery. As he explained, his reasoning became clear to me. It is hard on a healthy back and back pain afterwards is a common complaint. My back was far from normal. You are placed on your back, twisted slightly at the waist (like touching your shoulder to your opposite knee, but not quite that far)  and then bent over sideways. It is hard to explain, so I thought I would give you a visual aid, with my dad’s dog, Killer. (I hope it amuses you as much as it does me!) My first day of testing was not half over yet. But, I think Killer is the perfect place to leave you today. Really, you need to ponder positioning. Why would positioning really matter? A person with spine issues really does need to understand, so back to Killer!

In our mind, picture Killer as he is in this picture. In your mind, flip Killer over onto his back, legs all splayed out most unladylike. Take Killer’s head, neck, shoulders and front legs, twist his waist (if you can find it.) ever so slightly to one side and then bend waist up to head, over to one side, pretty far! Keep Killer there for four hours! This is the positioning required to remove a kidney!