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Kidney Donation - A Journal


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#21 comfortingsong

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Posted 08 February 2011 - 06:22 PM

One more thing, even it's a point is valid or not - I'm a strong believer that if it's your organ, you can do without what you please. Assume someone said, "I don't want my kidney going to someone who is gay." Is that disgusting, immature, and close minded? Yes. Does s/he have the right? Yes. Your organ = your rules.

#22 Razie

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Posted 08 February 2011 - 06:50 PM

One more thing, even it's a point is valid or not - I'm a strong believer that if it's your organ, you can do without what you please. Assume someone said, "I don't want my kidney going to someone who is gay." Is that disgusting, immature, and close minded? Yes. Does s/he have the right? Yes. Your organ = your rules.

No one's going to cut it out of you legally in this country without your consent.

But just as your organ = your rules, their program=their rules. They can accommodate whatever level of request they want, but they can also say "Take you kidney and shove it"

And it's not just about "Would they rather let a little kid die than tell me I have a right to not give it to a gay person" - because they might decide that overall the program does more good when they can give out kidneys as needed to those who need it most. They might decide that people who would say "only give it to a straight guy" if they had the choice might still give it if they didn't have the choice. Or that dealing with those requests can mess up the process so much that more people will die in bureaucracy or that monetary donations from outraged interest groups will dry up causing recruitment to flounder. Matching organs is tough enough. If they have to check if they've found a match who is the right type, age, sexual orientation, religion, political affiliation, coke vs pepsi drinker, etc ....

My instinct is that if you want to be picky to some non basic level, then find a match privately. If you want an organization to match you, then go by their rules or don't play. What about blood? Should you be able to donate your O- blood for jews only and have them label their bags "O- for straight Jews under 55" too and file it like that?

The same is true for most administrative tzedakah. You don't have the right to demand that a school take your tzedakah and buy each child a new blue folder and give it out at the beginning of the school year. What? It's your money and they don't want the kids to have new folders? New folders are great - but you dictating the terms of their administration doesn't work.

#23 KeepCoolNY

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Posted 10 February 2011 - 08:13 AM

Part III

It's Monday morning, I contact the Live Donor Transplant Coordinator at the hospital. She sends over the full Medical History and Behavioral Risk Assessment form, some links to websites with useful information and a donor consent form. The medical history form has questions ranging from height and weight to "Do you have a support system to help you after surgery?" to "Have you engaged in sex in exchange for money or drugs in the past 5 years?" It takes a while to answer all questions truthfully and I have to find out the right answers for the family history section again. What does "family" mean anyway?

The donor consent form spans 9 pages of information and disclaimers. There will be a psychosocial work-up, the procedure calls for three-four small incisions (<1cm) in various parts of the abdomen and the kidney will be removed through a lower abdominal incision approximately 2-3 inches in diameter. The risk of death from this procedure in the United States is between 3 to 6 out of 10,000.

I send in my form unsigned for the Transplant Donor Coordinator's review on Tuesday morning.

Did you know that the FMLA does not cover live organ donation if it's not to a covered relative? This means I now need to get permission to take time off for testing and for the subsequent surgery and recovery. This also means that should I need to stay out of work for longer than expected due to complications there is no guarantee that my job will be waiting for me when I get back...

In talking to people at work about it I was again faced with various reactions. One person insisted that I discuss with a Rav, another insisted, with absolutely no medical basis as far as I know, that I not do it before I have children. Another reaction was comparing this to my skydiving. I did of course get permission in the end.

I find the most persuasive argument to be "if you needed a kidney and I offered to donate would you react the same way?"

It's Thursday morning, I am waiting for a response from the Coordinator. Will all this have been in vain? Did one of my answers on the form exclude me as a possible donor? Time will tell.


#24 Belle

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Posted 10 February 2011 - 08:45 AM

I find the most persuasive argument to be "if you needed a kidney and I offered to donate would you react the same way?"


:thumbsup:

I'm enjoying your posts, and I hope you continue to update us in this journey.
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#25 Jeanette

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Posted 10 February 2011 - 12:39 PM

Because they might care about that person and be concerned about what donating a kidney would do to that person's health. Whether the concern is founded or not, it's a legitimate reason to want a loved one not to donate.

True love is respecting your loved one's right to make this decision for themselves and to trust them to make the right choice.

#26 jewess

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Posted 10 February 2011 - 02:15 PM

True love is respecting your loved one's right to make this decision for themselves and to trust them to make the right choice.

But as Jews, our mothers milk comes with whole other meaning of true love. Involving guilt, expectations etc. It is a difficult mindset to erase.

#27 DaKaD

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Posted 10 February 2011 - 03:07 PM

I do not want to give blood anymore without knowing who it is going to, let alone a kidney.

With the increase in anti-Semitism and Muslim extremism in the world, the person I save may be my murderer or my friend's murderer. I therefore donate blood only in a certain place where I know I can get a name of a Jewish patient who needs my type and where I know it goes to that patient.

As for a kidney, many of these donor advocates are loose cannons. It is not a decision to be taken lightly. I don't want anyone else's parts with the present state of transplant technology and anti-rejection drugs, and I don't feel I owe it to anyone to give them mine either while alive or otherwise.
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#28 justbatya

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Posted 10 February 2011 - 03:38 PM

I therefore donate blood only in a certain place where I know I can get a name of a Jewish patient who needs my type and where I know it goes to that patient.


Where is that?

My poor SO still thinks that a Batya is a what, and not a who.


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#29 DaKaD

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Posted 10 February 2011 - 03:49 PM

Where is that?


Israel. Used to be that I had no qualms about giving every time I went, just like that. I came to realize that between Arabs and non-Jewish former Soviet flotsam and jetsam, I needed to make sure I was not giving my rare type to someone who would kill a Jew in cold blood or vandalize a shul. So, I call Ezer meZion and ask if they have anyone who needs my type. If they do I go to MDA and direct my donation to that patient.

I think the only place I would give just like that is the US because the garbage are still botel beshishim so far.
Throw Mondrowitz down the well, so the children will be free....

Did you hear about the lamb who is suing Ahmadinejad for child support?

Reform replaced Parshas Zachor with Mishkav Zachor.

#30 Jeanette

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Posted 10 February 2011 - 04:15 PM

I know someone who, as a teenager, was asked to be a bone marrow donor (he was a match for someone). He really wanted to do it but his father was against it, even though bone marrow donation is much less risky than kidney donation. Well this really bothered him, and when he got older he decided to donate a kidney. Which he did. Very quietly, without any fanfare.

#31 Guest_Shuli_*

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Posted 10 February 2011 - 04:30 PM

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#32 comfortingsong

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Posted 10 February 2011 - 10:23 PM

"Have you engaged in sex in exchange for money or drugs in the past 5 years?" It takes a while to answer all questions truthfully.

Did it really take you a while to answer that answer truthfully???

#33 brianna

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Posted 10 February 2011 - 11:24 PM

Did it really take you a while to answer that answer truthfully???

That particular question is asked on blood donor forms. I'm fairly certain the form - and thus the list of questions - for kidney donors is longer.
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#34 mosheshmeal

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Posted 11 February 2011 - 12:13 AM

Biggest load of crap ever.

Tell us how you really feel, bonnie.

:-)

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#35 ceebee

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Posted 13 February 2011 - 03:09 PM

About a year and a half ago I answered to an email message that Chaya Lipshutz of Kidney Mitzvah sent around. The risks for donating a kidney are relatively small (for a major operation), and the benefits to the recipient great.

Here in Israel if you match up privately, they put you through all the medical tests and then you get to go to the great Vaad that wants to make sure you're not doing it for money (sachar b'evarim).

I met the lady I was testing for. I did want my kidney to go to a shomer mitzvos Jew. Her father had passed away from PKD, and her mother had donated a kidney to her brother who also has PKD. Her kids cannot donate, because you can't know which one might later develop PKD themselves. She was a bit younger than I, with a lot of kids, and during my testing had to go from home dialysis to hospital dialysis.

Blood tests, echo cardiogram, chest x-ray all went fine. Then a blip on the kidney ultrasound. All the while I stopped mentioning it to anyone because almost everyone tried to talk me out of it. The urologist looked at the kidney US and told me that I'd live until 120, but noone would let me donate... off to a CT to see if it was a stone. CT was totally clear and the game was back on. The donation center coodinator requested a stress test and a kidney angiogram.

My hospital normally doesn't do angiograms, but since I'm personnel and it was for a kidney donation, the head of the CT unit agreed to do it. Kidney fine, what's that spot on the outside of the cervix, and why are your ovaries enlarged (PCOS known)? Off to the gynecologist, a gyno US shows a myoma on the cervix -- benign and will now be shrinking as my hormones wither.

Stress test was non-diagnostic, doc said everyone has a blip at the end and he felt it was a false positive. I walk 20 minutes to work and 20 minutes home every day, so I wasn't worried.

Coordinator now finally looks at all my results again and requests a heart mapping... had she been more organized I could have gotten the cardio angiograph at the same time as the kidney angiograph. I go to make the appointment for the heart mapping and find that it is X-rays, then a shot of radioisotopes, then a stress test, then more x-rays. Hey,... I just had 2 CT's in 6 months. I am NOT doing more radiation for a non-diagnostic purpose. Okay, well, you can do the dubotamine test... I miss my appointment and read the medical literature and patient complaints online. I'm not going to let them put that stuff in my veins and stress out my heart.

Both my parents had heart disease. The coordinator can't possibly agree to let me donate without clarifying lack of ischemia, and I start getting scared of any more heart diagnostics. I'm really low risk right now, but another 15 years or so I might need to do these tests for diagnostic reasons,not just to negate something.

So I dropped out. I can't prove my heart is up to it without stressing my heart in a test. I can't face it.

A good friend of mine did donate, though eventually switched to a more organized coordinator. Two days of testing and the Vaad meetings.

I think it's a wonderful mitzva,not easy, not to be taken lightly, but it really gives someone quality of life back... or life at all. People here in Israel are dying on dialysis because there are so few donors. The government went to such lengths to make sure that no organ trafficking would occur that it's made it very difficult for altruistic donors to get to the operating theater.

Well, maybe some day my bone marrow will match up in the registry. It is much less risk and as long as I don't have active heart disease, I will probably be allowed to donate.

Best of luck and health to you, keepcoolny
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#36 KeepCoolNY

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Posted 15 February 2011 - 08:13 AM

Here's a quick update: The woman I was going to test for has been matched. I will be going to the transplant center on Friday to test for three other people.

#37 comfortingsong

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Posted 16 February 2011 - 09:50 PM

Here's a quick update: The woman I was going to test for has been matched. I will be going to the transplant center on Friday to test for three other people.

When's the next update coming? Looking forward to reading.

Just as an aside, newbie to newbie, I've heard a rumor that it's an unspoken rule not to post in anything aside from the default font and size. People seem really serious about it. If you want to avoid the hazing, keep this in mind. :wink2:

#38 Belle

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Posted 16 February 2011 - 09:53 PM

I've heard a rumor that it's an unspoken rule not to post in anything aside from the default font and size. People seem really serious about it. If you want to avoid the hazing, keep this in mind. :wink2:


I agree. I skip any posts that are not the default.

Italics aren't bothersome, however, since it's understood that this is meant to be a journal. If he posted all of his posts in Italics, I'd skip them too.
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#39 Belle

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Posted 16 February 2011 - 10:06 PM

As it is, I was kicked off the bone marrow registry and most blood centers won't accept my blood.


As an aside, I found out recently that the NYU Blood Donor Center accepts blood from cancer survivors if 2 full years of remission have passed. I just donated today for the first time in years.
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#40 Guest_Shuli_*

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Posted 16 February 2011 - 10:19 PM

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