Proposed changes to the LAS!

I wasn't going to get into LAS until I actually had my number, but I'll talk about it now.

LAS is lung allocation score. It's based on a ton of factors (covariates). Pulmonary pressures, heart function, lung function, the necessity of oxygen, 6 min walk, etc etc.

The higher your score, the "sicker" you are deemed to be and the higher on the transplant list you will be. PH patients have always had a harder time getting an accurate reflection of their illness with the LAS. Our actual lung function is really good! There's a number used, the FEV1 (forced expiratory volume) to kind of determine overall "sickness." It's a percentage of predicted based on age and some other factors. And it's used to determine lung function after transplant as well. People with cystic fibrosis tend to have FEV1 percentages in the teens and 20's. My most recent FEV1 was 75%. There are people post transplant who don't have numbers that high! So I look really "healthy" compared to other diseases. The FEV1 is not a covariate consideration, but it is used in other applications. FVC (forced vital capacity) is used as the covariate and uses FEV1 as part of the total number.

Because UCSD treats SO many PH patients, they are aware that the LAS scoring may not accurately reflect the actual severity of the disease. A few doctors here have mentioned that there is a way to request a waiver for PH patients whose other numbers warrant a higher LAS. Again, the trick is to get the transplant before you get too sick to recover. Everyone wants recipients to have the best chance at survival. I am super happy to know that I have doctors who will fight for me. But this new system may alleviate the need for doctors to have to do all of that extra legwork.

I am concerned that I may be considered "too healthy" for transplant. Well, I am concerned that if that happens that the severity of my illness won't have been accounted for. I would love to be too healthy for a transplant!!

There is a proposal to change how some of the covariants are weighted so that people who have previously been sort of discriminated against will have a more fair chance at a transplant. I'll include the link to the .pdf. It's a LOT of mumbo jumbo. I even got bored reading it- and it applies to me! But basically if they weigh the bilirubin (that's liver juice, folks) number differently, Group B patients (that's me!!) might see a slight increase in their LAS (ooh... pretty scatterplot charts...).

A high bilirubin number is an indicator of right heart failure, which almost all PH patients who need a transplant have. Right now bilirubin is not a covariate in the LAS.

If you do get crazy and open the .pdf and look at the scatterplots (pages 12, 13, 14) you will see how low PH patients generally are on the LAS. The proposed changes would also help those in my age category as well.

There is also a link to say that you support the proposed changes. Now, I do not endorse signing anything until you read it... but if you can get through the proposal you are a better person than I. In a nutshell, the changes might help me (and all my PHriends!) out.

Because I don't know my LAS yet and the deadline for support is June 15 there is plenty of time to see if I'll get on the list and my LAS (I should know within a few weeks). So I'll include the links here and if you feel so inclined, please support the proposed changes. It will not affect the horribly ill who need a transplant- their LAS will be high regardless.

Proposed changes to LAS pdf

Form for support of proposed LAS changes

I keep trying to clear the form, but my data stays put if I click on the link. I hope you guys get an empty form. I even cleared my browser history, so I hope it's just the autofill on this computer.