What not to do in transplant orientation

The somewhat hush-hush piece of news in my personal life is that my sister is in the process of being evaluated so that she can be placed on the waiting list for a new kidney. That's the technically correct way of saying she's on the list barring any complications, like they decide she's psychosocially incapable* of handling a transplant.

In the ten years since she received two new lungs (at the ripe age of 19), the running joke is that I'll give her my uterus so that she can have biological children. Then her body began falling apart (which is why I created a body organ charm bracelet for her birthday present) organ-by-organ. The esophagus, the digestive tract, the uterus, the ovaries, the skin, and finally the kidneys.

Now, the running joke is that she'll take either my uterus or my kidney. My retort is she can have my kidney for the grand price of my out-of-pocket expenses for a lapband (and the uterus she can have for free). Apparently, she wasn't joking around because she drug me with her to the hospital this morning for a transplant orientation during which they regale you with facts and figures and price tags.

We learned a lot about living donation, financial burdens, and the process of renal failure. Most importantly, we learned some lessons that I'd like to pass along for anyone out there with immunosuppressed family or friends (or those who might be immunosuppressed but you aren't sure but it's possible) or those who work with the public (of which 10 percent are immunosuppressed for one reason or another).

Lesson #1: (For the professionals.) A large percentage of kidney transplant patients need a new kidney because the drugs from their OTHER transplant destroyed their system. In fact, the drugs you take to convince your body to accept a donated organ are the very thing that keep you from being able to use it forever. Anti-rejection drugs are toxic.

Therefore, if your targeted population is very likely full of immunosuppressed people, DO NOT lick your fingers each and every time you hand out a piece of paper or pen. Not only is it gross, but your mouth is filthy and you could kill someone. Further, DO NOT cough into your hand or play with your nose if you plan to hand things out to people. How could someone who works in the transplant unit be so stupid?

Total martyr moment: I totally took this one for the team. Rather than allow my sister to touch the spitty, snotty paper and pen, I filled out her paperwork for her and then immediately felt myself developing the flu so I exited the orientation to go Silkwood in the bathroom. But, hey, she got the info she needed and her immune system is none the wiser.

Lesson #2: (For the patients.) Unsurprisingly, the vast majority of transplant patients are old, or older than my sister. However, just being old doesn't mean you can hijack a transplant orientation to talk about your daughter's preeclampsia or how much you hate Medicare Part D plans.

You're old so you like to talk and there aren't enough people willing to sit and listen, I understand. The problem is the rest of us want to get out of here today sometime, so how about you write down those inane facts and discuss them later with your coordinator -- the person paid to listen to you ramble.

Lesson #3: (For everyone.) Ment is not a word, so please stop pausing before you say it. The word is "appointment," not "appoint ment." Basement, not base ment. Payment, not pay ment. When you are speaking in a group setting and you want people to answer your questions thoughtfully, then you shouldn't create words because all that does is make me focus on the words coming out of your mouth. That's not what you want when your future kidney hangs in the balance.

Lesson #4: (Another one for patients.) Fortunately, the United Network for Organ Sharing (UNOS) doesn't care whether you were born in the United States or just arrived here last month. So long as you pass the evaluation, you will land on the waiting list. Also, follow the rules and you'll get Medicare coverage to help pay for the transplant.

However, no matter how many times or different ways you ask, UNOS isn't going to magically pay for you to fly in relatives from China or foot the bill if you return to China to seek out a donor. It's just not happening, so you aren't allowed to ask another question about it or shake your head pitifully while saying, "So Medicare won't pay for me to go there?" No! It won't! The rest of us heard the answer five times ago. You may want to look into an ear transplant while you're out of the country. I'm just sayin.

I imagine I'll learn more fascinating tidbits as we tumble down the transplant road, but I had to share these. I still get creeped out think of that transplant nurse licking her fingers 18 times in 20 minutes. Yuck!

*This the part Ashley almost failed last time, so we like to make fun of her. I passed some idle time today outlining all the ways just being a member of our family should make her psychosocially incapable. It's all good when you're being evil, but those psychosocial measures can be really tough. I hope she passes!


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