Tuesday, March 30, 2010

So what does being listed mean....

Well I started this post last Tuesday and was writing it while the call for the dry run came in, so I'm now changing the intro but I'm going to leave the rest intact since it's even more relevant....looking back at it now is very interesting (but I guess not timely....lol)....I will add that 2 other CFers (Jess, Jerry) have had dry runs since mine, sorry guys....

The most frequent question I seem to be getting is when will the transplant happen. I sure wish I knew the answer to that, as do all my friends on the transplant list. For instance my one friend Piper had a dry run over the weekend. She got a call from her transplant center to come in because they had a matching set of lungs for her. Unfortunately after she was at the hospital for awhile she was informed that one of the lungs was not viable. CF patients unlike some other conditions requires a double lung transplant because of the bacteria we harbour in our lungs. If they only gave us one lung the existing bacteria from the CF infected lung would quickly attack the other due to the immunosuppressants needed post transplant. Short of it is, her transplant did not go ahead, but at least the one good lung was not wasted and went to save another's life. Hopefully the perfect lungs for her will be found soon. So keep in mind people when we post that we got called, it's not a done deal till the surgery starts.

So back to the topic.....When someone over the age of 12 is approved for transplant by a clinic (in the US), your data (derived in the evaluation process) is fed into the UNOS (national transplant database) system. When they input your data an LAS (lung allocation score) is calculated and is then used to demonstrate ones need as compared to others. The score can go from 0-100 with the highest score having the most need. My LAS happens to be 37.78 for those interested.

The score is derived from several pieces of data such as (list from Wikipedia):

-diagnosis of the patient (e.g. emphysema, cystic fibrosis, etc.);
-age of the patient;
-body mass index;
-presence or absence of diabetes mellitus;
-ability to function according to the NYHA scale;
-percentage of predicted forced vital capacity (FVC);
-systolic pressure of the pulmonary artery;
-mean pressure of the pulmonary artery (only required of sarcoidosis patients);
-pulmonary capillary wedge pressure (PCW pressure);
-flow rate of supplemental oxygen required at rest;
-distance walked in six minutes;
-need or lack of need for continuous mechanical ventilation;
-levels of creatinine in the blood.

Once they have the LAS score they use that coupled with your blood type compatibility and body size to list you for lungs.

Through the UNOS system organs (Lungs) are offered first locally, then regionally, then nationally using the LAS as the criteria of who gets them first. What I mean by that is:

If an organ donor (host) is brain dead in a hospital, the organs are first offered to the hospitals in the local area, if there is no match locally then the organs are offered to hospitals in the region the host body is in, if no match still exists the organs are then offered nationally to other hospitals.

So in my case right now I am listed at University of Pennsylvania, so if an organ donor of AB blood type passes at Penn and they were my height I would be offered the lungs first since I'm the only one on the list there with those characteristics. If I was not a match they would then be offered to Temple Hospital second, since they are also local. If there is still no match for the lungs, they would then be offered to all of region 2 (De,DC,MD,NJ,PA,VA,) if still no match then they would be offered nationally to other regions.

Now the reason I want to be multi-listed at Columbia Presbyterian is because they are in region 9 (NY, VT) so by listing there I would have a much larger pool to pull from and I know there currently is no one of my blood type listed in the whole region. Good old AB blood, blessing and a curse.....


  1. Another informative blog, Sheldon! Here's hoping you and your "listed" friends don't have too many more dry runs, and you all get the organs you need.

    I know you and Denise were making preparations in the event you received "the call." Anything you hadn't planned for but are now aware of?

  2. Keeping gas in the car for one....we had to stop. Other thing here recently is when we are away from home to maybe keep a bag in the car so we can leave on a moments notice.

    In seeing some friends go through it recently I see maybe I should consider packing some sweats or plaid boxers. As of now I have no clothes packed. But I may just take the opportunity to go old school, kelt style...lol

  3. He has his own mental "list" as we like to jokingly call it! I'm packed and ready at moments notice. There's also a 3 page document that I wrote up for everyone looking after the dogs and cat (plural because we had to put our 15 year old cat down Friday afternoon). Other than the gas issue, we did pretty good.

  4. This was very informative post.

    From what I understand, my lungs came from Phili, PA and went to Boston, MA. Of course, no medical personel could tell me if this was true or not. The information kind of slipped out of the ER nurse. My center does not share your score with you.