Bunn’s Prairie

I had coffee with Jeff Kahn (or more exactly, he had coffee and I spoke with him) this morning. Mr. Kahn is the “bio-ethicist” that Kristen Stiner interviewed for her KSTP piece. The meeting was a lot of fun. He is a very nice man and very interesting because he thinks the same way that I and a number of my high school friends whom I have kept in touch think. We didn’t solve all the organ donation world’s problems, but were at least able to share some of our perspectives with one another.

The best part of our meeting is that he forwarded my contact information to Frank Delmonico, a contact with the national organ procurement organization. It turns out they are looking for more perspectives from lay people (i.e. people whose lives have been touched by the organ donation process who aren’t medical/ethics people). I guess he thought I was relatively well spoken and was able to discuss the issues concerning organ donation relatively emotion free despite my connection with Kaley and the process as a whole. If Dr. Delmonico is interested, I may be invited to participate in certain conferences and meetings concerning the organ donation process (on a nationwide scale) in the future. Obviously, participation would not be a paid post (covering expenses would be sufficient from my perspective). I would love the opportunity to work with those involved in guiding the organ donation world going forward. Those who know me personally know that I have enjoyed arguing either side of issues for years (regardless of my personal opinion) so hopefully this hobby will translate into an opportunity to help others.

Kaley and I spoke to a doctor with infectious disease today. She said we’re going to try to treat this blood infection with oral antibiotics only first. If that doesn’t work then we’ll do the IV drugs. The doc then direct admitted Kaley for the same nausea/vomiting crud that she’s always dealing with. Hopefully this will be a short stay.

Also, here’s more information about the specific infection she’s got.

Kaley has been out for almost 2 weeks now. It’s been wonderful. She’s been doing fairly well at processing the food she’s been eating. Mornings are still not good for her, but at least she’s out and by the evenings she’s hungry. She’s put on 10 pounds since she was in so that’s wonderful.

The bad news is that she was diagnosed with a rare blood infection (some sort of mycobacteria). I guess the cell division time is on the order of a couple of days (very slow). Antibiotics drugs work because they inhibit new cell creation, so if new cells are created very slowly, it takes lots and lots of time on the Antibiotic. Therefore, we are planning on her being on IV antibiotics for ~6 months! Another crappy part about this is that I pricked my finger on a needle that I had recently used to give Kaley a drug, so I have been exposed to it too. I don’t know if I am infected as of yet. Chances are low because (1) my exposure was small and (2) I am not immuno-suppressed and so am equipped to fight it off easily. I am still going to try and get tested this week, in 6 months, and again in 12 months, just in case.

Lighter news, Kaley and I are just over 2 weeks away from moving into our new condo downtown! We are both very excited and can’t wait for the move. I am excited because my commute time to work and the hospital will be made trivial, I have no yard work and less house maintenance, get an awesome workout room, have less space to clean, and get an awesome new kitchen. I believe one of the main reasons Kaley is excited is because this will be our home and not my house that she moved into.

If you missed the piece last night here’s a link to it:

http://kstp.com/article/stories/S16145.html?cat=1

Last night’s piece on LifeSharers was embarrassing for KSTP. Let me list the issues I had with the piece by Kristen Stinar:

1) She belittled LifeSharers by referring to it as a club. Can you imagine the uproar if she referred to other non-profits as clubs.

2) She presented Jeff Kahn, “Bio-ethicist”, as an unbiased neutral party to present the anti-LifeSharers side. She failed to mention that he is a member of LifeSource (OPO, Organ Procurement Organization). I don’t have a fancy title like “bio-ethicist” but even I can see that that relationship presents as great a conflict of interests as our relationship with LifeSharers. This relationship does not disqualify him from having “expect” opinions, but it is worth mentioning from a journalistic integrity standpoint.

3) She presented the pro-LifeSharers side, then presented to the anti-LifeSharers side and failed to allow a rebuttal presentation for the pro-LifeSharers side. Since we were not given a chance for rebuttal I will give it here. First of all, the traditional organ waiting list was presented as a “fair” system whose sole criterion is saving lives. If that were the case, it wouldn’t be a FIFO system (first in-first out). It was implied that by the traditional list the sickest people receive organs first. Not so. The traditional system is part FIFO, part sickness first, and several other factors. Since there are already other non-illness based criteria used in the traditional method, LifeSharers simply adds another one. To me, LifeSharers’ system values lives and saving lives more than the traditional system by attempting to increase the pool of available organs. LifeSharers isn’t necessarily about fairness, as was presented. Fairness is a nice benefit of the system. LifeSharers is first and foremost about increasing the pool of available organs so more lives can be saved not about simple being given preferential treatment. In an ideal world LifeSharers wouldn’t need to exist because everyone would be an organ donor.

4) The word exclusive was used several times referring to LifeSharers and the LifeSharers membership list. According to Merriam-Webster Online the word exclusive means:

Main Entry: ¹ex·clu·sive
Pronunciation: iks-’klü-siv, -ziv
Function: adjective
1 a : excluding or having power to exclude b : limiting or limited to possession, control, or use by a single individual or group
2 a : excluding others from participation b : snobbishly aloof
3 a : accepting or soliciting only a socially restricted patronage (as of the upper class) b : STYLISH, FASHIONABLE c : restricted in distribution, use, or appeal because of expense
4 a : SINGLE, SOLE <exclusive jurisdiction> b : WHOLE, UNDIVIDED exclusive attention>

I believe Stinar and Kahn were using (2a) excluding other from participation. LifeSharers allows anyone to join. The only requirement is to be an organ donor. They do not require you to have any usable organs, simply the desire and willingness to give and help others. LifeSharers is also free of cost. That sounds like a pretty inclusive group to me. Kaley and I brought this up in our interview with Stinar but this was not shown.

What upset me most about this piece was the lost opportunity. This seemed like a great way to increase awareness. The LifeSharers concept is such a wonderful one (I use the word concept since no one has received an organ via the LifeSharers system yet), that it deserves better press than this. Looking at her bio on KSTP.com, Stinar was previously diagnosed with ovarian cancer and has fully recovered. I was surprised that someone with her medical history would present a report with the tone and end result that this one did.