The packet covered EVERYTHING, from kidney function and testing to FAQs to expected surgery plan, recovery, and follow-up appointments, and the history of kidney transplant and statistics. The information comes three more times in later phases, so they make sure the donor knows very well what to expect.
Then, after they received the application and two signed documents and ABO result, the coordinator called me to ask me why I am choosing to donate, how do I know my recipient, being sure I don't feel pressure from anybody including the agency, what I can expect with surgery, and the rules I will be expected to keep now and others for the rest of my life (basically, just to keep rules of health and safety and how to keep my last remaining kidney healthy), the history of kidney transplant and statistics, and she answered any questions I had. That would be the second time I got most of the information.
Part of this packet was a list of four phases to be completed in order. Once one phase is complete, all tests passed, and all results are received by them, they called me to let me know how to get the next phase competed. I will use this list to help me explain in order the tests I completed and my experiences with them.
ABO order. Blood test, to see if I have a blood type compatible with my recipient. She has O+, and although O blood types can give to all blood types, they can only receive from other O blood type. I also have O+ blood, so we are a match!
There was a mandatory class for the donor. It can be taken in person, if I lived in the vicinity, or there is a phone class, where each of us could both hear and ask questions. They had sent a PDF of the slide show to our emails, which we followed along during class. My mom also participated in the class. This is the third time I learned much of this stuff, but there was enough time in between for the info to sink in and questions for clarification to form. Also, this time we had pictures and diagrams to help us visualize what we were learning. We also got to hear other's questions and answers that maybe we hadn't thought of, but liked to know. It was good.
PHASE TWO
24-hour urine collection. They gave me a collection container and a storage container. They said to plan on staying at home the whole 24 hours, because you don't want to hold your urine nor become dehydrated. Neither do you want to drink an overload of water. You are supposed to collect every single drop. Every one. The urine is poured into the storage container, which you cannot see through, an orangey-brown plastic bladder, and kept in the refrigerator. They want to see what your kidney usually does and how it functions. It is common to fail the test the first time and have to take it again. I was very, very careful to follow each direction precisely and not take chances or cut corners. I passed the first time.
When I got to the hospital lab, they wanted a fresh urine sample as well.
I also needed to give several (12?) vials of blood for testing. I was amazed at how fast it was! Even changing the vials were incredibly quick, and most important to me, it didn't even hurt when they changed vials! This is because they used something called a butterfly, where the tube only, not the needle, was kept in my arm, and the vials were switched on the tube maybe 6 inches away from my arm. It was wonderful! It is also very expensive, so they only use a butterfly when there are more than just a couple or three vials to change. The vials aren't all filled all the way up, maybe half way up, so it's not as much blood as it might sound like. Some technicians prefer just using a needle and changing the vials at the needle. They say that the tubes are so tiny that there's a huge risk of clogging. Of course, they always say you can't feel it changing, but you can, some less than others.
The blood tests were used for tissue-typing and cross-matching with my recipient to be sure that her body would accept my kidney. There were other tests that those vials were used for, but I don't remember what they were. I had to check my name and birth date on each label. It seems like there was generally about two tests performed per vial.
I also did a diabetes test, which is similar to the gestational diabetes test I had to take when I was pregnant, except that this one didn't make me sick. It was more like drinking a small cup of lemon-lime soda water, rather than the pop-flavored sugar syrup I remember from pregnancy. I did have to be sure I fasted from anything besides water after midnight and until after my test.
If you have never taken a diabetes test, you fast, get a blood test (1 vial), drink the liquid, wait for an hour or two, then get another blood test (1 vial). The guy who took my blood was amazing! I barely felt the poke at all! If there was more than 1 vial each time, he was also amazing at changing them, because I don't remember feeling it change.
PHASE THREE
I don't know what Phase Three entails for men. For a woman older than 30, it includes:
Pap Smear, Mammogram, and Colonoscopy, depending on age. At 47, I only had to do the first two. This phase is the agency's time to gather records from your doctor. This is not when you are expected to get them done, but you may if you wish and don't have a recent one. If you have regular doctor visits and keep up on your annual tests, you do not have to do another. If you haven't had yours recently, you need to get it done, but you or your own insurance pays for these. The recipient's insurance is not allowed to by law, because it is supposed to be part of your regular yearly check up and, therefore, isn't exclusively for the transplant, even if you are only getting it for that reason.
My opinion: DON'T WAIT! DO IT AT THE BEGINNING stages if testing. Otherwise you may find, like I did, that it ends up putting the surgery off another month. It wasn't the agency putting it off, it was waiting a month for an available appointment and then waiting 2 weeks for the pap smear results. I appreciate the clinic and hospital getting me in as soon as they could. I was just frustrated at myself for not realizing it took some time to complete; I was hoping to get the surgery done in November, and it might have, had I not waited until the end to get these tests completed.
PHASE FOUR
I did Phase 4 all at once, because I live kind of far from the hospital and chose to make the trip once. I was at the hospital for close to 5 hours, and they kept me hopping the whole time.
CTA Scan. This was cool. I thought I would be put in a tight tube, but that is a different test that I did not have to do. The CT scan was done with me laying flat on my back, knees raised on pillows, and my body was passed through the bottom section of a giant ring, a foot or two in thickness and maybe four feet in diameter. It reminded me of a third-sized Stargate (from a sci-fi TV series). Once in a while it would tell me to take a breath in and hold it, then 5 or 10 seconds later it would tell me I could release my breath. It was actually fun.
Two things surprised me about my CTA test. First, they put an IV in my arm. Didn't know about that. At one point during the scan they put a liquid into my body through the IV to define on their screen my kidney and it's functional path. The next part that surprised me is this intense warmth when the fluid traveled through my body. The doctor warned me that it may feel like I peed, but that it would only be a sensation, so I was ready for that. What surprised me is that the warmth not only traveled up my arm and down my core, but it also traveled up into my mouth and tongue! That was so weird to experience, but cool! It only lasts for a minute or two. The whole tests lasted about 6 minutes.
Serology Labs. More blood tests. One poke. 6 vials, a couple with just a small bit of blood, like maybe a teaspoon. This set was for ruling out infectious diseases.
Chest x-ray. I remember that I did them, but I don't remember much of the experience. Seems like it was 10 minutes, but I don't remember why. That might include dressing into the robe then back into my clothes. The nurse forgot to tell me that I only needed my bra off (because of the under wire) when she showed me to the changing room and gave me the robe, so I went out with much less on than needed, but all was covered by the robe.
EKG. It took her longer to put the button-sized stickers on my legs, arms, and chest (20 sec, maybe?) than the test itself (maybe 6 seconds). It was amazing to me how fast they can check everything they need about my heart in 6 seconds!
Meeting the physician and everyone working with me. I met:
-The Coordinator that I had talked with several times over the phone.
-The Social Worker who interviewed me to find out how I was doing emotionally, psychologically, and what kind of support I had socially and for recovery, incl. how I would cover my bills while without paychecks, and to be sure I was doing this for the right reasons.
-The Donor's Advocate, whose whole job is to be sure I am treated correctly and without a feeling of being pressured and to be sure I feel safe pulling out at any time.
-The Surgeon, who explained what his plan was for surgery and what I could expect for recovery. Since I hadn't yet done the CT scan, he had not yet seen the picture of my own kidney, so he could only tell me general information; otherwise, had I seen him after the scan, he would have been able to discuss my kidney, specifically.
-The Assistant Surgeon. We had conversation, although I don't remember specifics. I remember that he had me lay down as he very gently moved my left and right sides at my waist up and down for a second or less, maybe feeling my kidneys? I have been curious about what info he received from that, but I didn't ask, and I didn't care. It was certainly no threat.
- The Physician. She made sure I was clear that I can choose right now to not go through with this if I didn't want to make lifelong changes, and made it very clear what was expected of me for the rest of my life after surgery. Be sure I get enough protein, stay hydrated, exercise, no ibuprofen, no medicinal herbs, avoid high sodium (found in prepackaged foods and processed meats).
After I had seen the panel of experts, one at a time, and so quickly one behind the other, I had received all of the information from my training a 4th time, at least.
I have been so impressed with how important they feel it is to give me every statistic, possibility, information, and to be sure I am not harmed for this decision. So impressed, in fact, that I have changed my opinion about the motivation of the medical field, and I have chosen to put on my driver's license that I want to be a donor at death.
