The donor coordinator called me last week to let me know I needed to have a cat scan of my kidneys as part of the prescreening process. Since I was going to be near the city on Tuesday, we made the appointment for the evening, and I would go in after work. The scan was very simple, but not something I would want to do on a regular basis. First, I had to drink about a liter of contrasting agent. "Banana or berry?" the well mannered man behind the desk asked me. I can't stand artificial banana flavor, so I went with the berry. Imagine a piece of chalk dissolved in water, with a drop of berry flavor. "Oh, and drink it slowly, over an hour's time", he mentioned. Awesome. If I could chug it, it wouldn't be so bad, but to sip it over the next 60 minutes? Ugh. Time to see what games I have programmed on my phone.
After an hour in gustatory hell, I was led to the back where they stuck me with an IV tube that they would later use to inject an agent that would improve the "resolution" of the images. While I am not averse to needles, this one was pretty thick, and it hurt like the dickens going in. They then led me to the machine. which resembles a large donut with a sliding rack that I would lie on. I climbed aboard, they slid me into position, and we were ready to scan. They scanned me once, then injected the second agent, and scanned me again. The injected agent was pretty neat; as it worked its way through my body, I could feel a warming sensation in my veins. It was very strange to actually feel it flow to my heart, then out to my extremities. Once the second scan was finished, I was all done and could start my long trip home.
The next day, I heard from the donor coordinator. My kidneys were both in great shape, and the donation is still a go. My case will be discussed at the next team meeting in a couple of weeks. In the meantime, they are still looking for a match that would be most compatible with me. I probably won't be hearing anything new for the next week or 10 days, so I guess I will sit and wait patiently..Until then....
Thursday, December 6, 2007
Sunday, November 25, 2007
Anyone have a liver I could borrow??
One issue with my bloodwork was my chronically high Liver Function Test (LFT) results. There are two enzymes, AST and ALT, that will show the presence of liver disease. When a liver cell is damaged, it will leak ALT into the bloodstream. Testing for this enzyme is a simple indicator that there is liver damage. The same is true for AST, though AST can be found for other reasons. Sometimes, the ratio of ALT and AST will give some indication about the cause of the disease. In my case, they told me to stop drinking for a while and to re-test. After two months of clean living, I was given another LFT. The results were not much better. I was told that I most likely was suffering from Fatty Liver Disease, probably brought on from my diet and lack of exercise. Change both, take some supplements, and get retested in a few months, I was told. That was in April.
My new diet cut out nearly all dairy. In it's place I ate plenty of soy milk and soy yogurt. I bumped up my intake of whole grains, which was already high. I began taking some supplements. These included Omega 3,6,9, Lecithin, Vitamin E, and Milk Thistle. I put flax seed oil in everything I could. I was re-tested in September and my AST and ALT levels came down very dramatically. The AST was right in the middle of the normal range, but my ALT was still very slightly elevated. A retest two weeks ago shows that my ALT is now perfectly normal, and the donation is a go! I am very excited by the development (both for the chance to donate, as well as my improved health). As soon as they find a suitable recipient, we are good to go. HOT DOG! (soy, of course)
My new diet cut out nearly all dairy. In it's place I ate plenty of soy milk and soy yogurt. I bumped up my intake of whole grains, which was already high. I began taking some supplements. These included Omega 3,6,9, Lecithin, Vitamin E, and Milk Thistle. I put flax seed oil in everything I could. I was re-tested in September and my AST and ALT levels came down very dramatically. The AST was right in the middle of the normal range, but my ALT was still very slightly elevated. A retest two weeks ago shows that my ALT is now perfectly normal, and the donation is a go! I am very excited by the development (both for the chance to donate, as well as my improved health). As soon as they find a suitable recipient, we are good to go. HOT DOG! (soy, of course)
I'm totally unbalanced.
One of the small things we discovered during my first battery of tests was that one of my kidneys was a bit larger than the other. It's not terribly uncommon, or anything to be alarmed at, but it could keep me from donating. The nephrologist explained that if the kidneys are too far away from a 50/50 split, in terms of their function, then he would recommend that I keep both. They wouldn't want to leave me with a small kidney, and also wouldn't want to take that smaller kidney to give to someone else. To solve the dilemma, I was given a split function test. I was injected with a small amount of a radioactive dye. After a short period of time, I was sent to radiology for some real-time monitoring of my kidneys. Based on bloodflow to and from the kidneys, they could figure out how much work was being done by both sides. Fortunately, I was a 51/49% split, and the donation was still on.
My left kidney for a decent website.
One of the problems I ran into when I first started researching kidney donation was the utter lack of information. There was plenty written about live donations, but very little about altruistic, non-directed living donors. The only website I could find that really addressed the subject was something similar to a matchmaker. People with healthy kidneys would peruse potential recipients' profiles, and make a choice. The problem, a major one, is that you may choose someone with a great story (or worse, a great picture), but that doesn't mean you are a good organ match. The whole thing seemed silly; donors and recipients are not the best people to decide who gets which kidney. There is tissue matching that is required to make sure that person A's kidney will fit and be welcome in person B's body. A great backstory does nothing to improve the odds that the organ will not be rejected. In the end, it's a popularity contest, with the winner getting a better shot at finding a donor. To me, altruism should not discriminate based on color, looks, good writing skills, or anything.
So, with no real guidance from the internet, I did the only thing I could think of. I called a big hospital and told them I wanted to donate. I still think donors need a better website to help them along the way. Maybe this blog may someday turn into that...Hmmmmm.
So, with no real guidance from the internet, I did the only thing I could think of. I called a big hospital and told them I wanted to donate. I still think donors need a better website to help them along the way. Maybe this blog may someday turn into that...Hmmmmm.
Saturday, October 27, 2007
A gallon of urine on the subway.
So, step two of my kidney quest was to go to CPH to meet the team. This consisted of the Donor Coordinator, Psychiatrist, Social Worker, and Nephrologist. In addition, I would have blood drawn for a battery of tests, as well as submit the jug of urine I had collected over the past 24 hours. Living 2 hours north of NYC, I decided to take the train down instead of driving. This meant I was going to have to carry this pee vessel with me on Amtrak to Grand Central, then the Subway uptown, then walk around trying to find where I was going. A doubled up brown grocery store bag was an easy choice for handing the job. Still, I couldn't help but feel uneasy about toting around all that pee. Luckily, I arrived at the hospital not spilling a drop, though I was 45 minutes late.
The first meeting was a psychiatric evaluation. I guess they want to make sure that I'm not donating this kidney in any sort of strange attempt at harming myself. This is the sort of decision that should be made with a clear and sound mind, and it is their responsibility to make sure that is true. I didn't much care for the doctor. Her persistent skepticism seemed insulting after a while, like she could not believe I would want to do this out of the goodness of my heart. Wasn't I concerned that a family member might need my kidney some day? Each of my responses was met with the sort of disbelief a mother gives a child who denies eating a cookie, despite having crumbs on his shirt. I was clearly frustrated with this person, but eventually her time ran out, and we concluded our meeting.
After that I had blood drawn. It took about 5 minutes and was painless and easy.
My meeting with the Social Worker was much more pleasant. She asked a lot of the same sort of questions the shrink asked, only with more warmth and less disdain. She seemed to believe my argument that if more people donated kidneys to strangers, we wouldn'n need to hoard them for future family emergencies. She understood that helping someone like this does more for me than any monetary donation to a charity. She could sense my sincerity when I told her the pain I would endure was a small price to pay to see someone be able to live a full life, free from dialysis. I left our meeting feeling much better about what I was doing, as well as myself.
Next, I met the nephrologist. He laid out the basics behind the surgery: what I can expect, how the surgery is performed, and the implications behind living with only one kidney. Most of the stuff he told me I had already read on the internet, but it was still reassuring to hear it from someone' mouth. The meeting was quick and easy.
Lastly, I met with the coordinator. She was the liason between the team and myself. Though I was free to call any of them myself, she was there to answer any questions I might have and report back any news she received from the team. She also explained the logistics behind the process. She stressed that I was free to cancel my donation at any point, with no hard feelings and no financial backlash. It's important to note that as a donor, all of the bills are covered by the recipient. That includes all the tests, consultations, recovery, everything. I just needed to show up and point them toward my kidney. I was made very comfortable with the whole pocedure, and with this sort of decision, comfort goes a long way.
It was a busy day, and I was happy to go home. A lot of questions were answered, but some new ones popped up. Would I measure up? Were my kidneys healthy enough? Could I maintain my enthusiasm throughout this whole thing? Only time would tell...
The first meeting was a psychiatric evaluation. I guess they want to make sure that I'm not donating this kidney in any sort of strange attempt at harming myself. This is the sort of decision that should be made with a clear and sound mind, and it is their responsibility to make sure that is true. I didn't much care for the doctor. Her persistent skepticism seemed insulting after a while, like she could not believe I would want to do this out of the goodness of my heart. Wasn't I concerned that a family member might need my kidney some day? Each of my responses was met with the sort of disbelief a mother gives a child who denies eating a cookie, despite having crumbs on his shirt. I was clearly frustrated with this person, but eventually her time ran out, and we concluded our meeting.
After that I had blood drawn. It took about 5 minutes and was painless and easy.
My meeting with the Social Worker was much more pleasant. She asked a lot of the same sort of questions the shrink asked, only with more warmth and less disdain. She seemed to believe my argument that if more people donated kidneys to strangers, we wouldn'n need to hoard them for future family emergencies. She understood that helping someone like this does more for me than any monetary donation to a charity. She could sense my sincerity when I told her the pain I would endure was a small price to pay to see someone be able to live a full life, free from dialysis. I left our meeting feeling much better about what I was doing, as well as myself.
Next, I met the nephrologist. He laid out the basics behind the surgery: what I can expect, how the surgery is performed, and the implications behind living with only one kidney. Most of the stuff he told me I had already read on the internet, but it was still reassuring to hear it from someone' mouth. The meeting was quick and easy.
Lastly, I met with the coordinator. She was the liason between the team and myself. Though I was free to call any of them myself, she was there to answer any questions I might have and report back any news she received from the team. She also explained the logistics behind the process. She stressed that I was free to cancel my donation at any point, with no hard feelings and no financial backlash. It's important to note that as a donor, all of the bills are covered by the recipient. That includes all the tests, consultations, recovery, everything. I just needed to show up and point them toward my kidney. I was made very comfortable with the whole pocedure, and with this sort of decision, comfort goes a long way.
It was a busy day, and I was happy to go home. A lot of questions were answered, but some new ones popped up. Would I measure up? Were my kidneys healthy enough? Could I maintain my enthusiasm throughout this whole thing? Only time would tell...
It all started last year...
We were watching 60 Minutes last Summer when they did a segment on live kidney donation. They highlighted a website which helped bring donors and recipients together. I checked it out, but to me it just looked like a popularity contest. I'm sure the cute women and adorable children got a lot more responses than the gap-toothed men and large women. When it comes to charity, our hearts and minds should be free from whatever may prejudice our giving. True altruism comes when the donor receives nothing in return, not even a comely thank-you from an attractive lady.
For this reason, I decided to do some more research on non-directed living donation. Surprisingly, there wasn't a lot of info on the internet. This was perhaps the most frustrating part of my investigation. Clicks turned into more clicks which turned into more dead ends. Finally, I decided to just pick a big hospital, call their main switchboard, and see where it lead me. The first hospital to pop into my head was Columbia-Presbyterian in Manhattan. While it isn't the most glamorous facility in the area, its association with Columbia Med School, as well as its history, made me think I was safe in choosing it. After explaining what I was looking to do to several people, I was forwarded to the donor cooridnator. As most people are when I tell them, she was perplexed as to why I would want to donate my kidney to a stranger. She happily took down my information and sent me out a packet with a few questionaires. After filling them out and returning them, I would make an appointment to come down and meet the team. That is step two in this journey....
For this reason, I decided to do some more research on non-directed living donation. Surprisingly, there wasn't a lot of info on the internet. This was perhaps the most frustrating part of my investigation. Clicks turned into more clicks which turned into more dead ends. Finally, I decided to just pick a big hospital, call their main switchboard, and see where it lead me. The first hospital to pop into my head was Columbia-Presbyterian in Manhattan. While it isn't the most glamorous facility in the area, its association with Columbia Med School, as well as its history, made me think I was safe in choosing it. After explaining what I was looking to do to several people, I was forwarded to the donor cooridnator. As most people are when I tell them, she was perplexed as to why I would want to donate my kidney to a stranger. She happily took down my information and sent me out a packet with a few questionaires. After filling them out and returning them, I would make an appointment to come down and meet the team. That is step two in this journey....
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