Wednesday, June 4, 2014


So this is it. The last Phase of Transplant Evaluation is today. I have to repeat one blood test that was done when I was in the hospital; I have to have an Arterial Blood Gas done; I have to get the second in the series of 3 Hepatitis B Shots and I have 4 Blood draws for some antibody testing.

Once the results of all these tests are in, I will be put on the actual Transplant Waiting List and told where on the list I stand. One of the blood tests has to be sent out to a special lab so it could be a week to 10 days before the results are in, so I likely won't get the information until then. More waiting. But after all the testing I have been through, this is it. The last of what I need to have done to get put on the Transplant Waiting List. 

If I only take into account the Evaluation Process I have gone through with Loyola, which began back on April 1st, this has been a long and stressful process - two months just to get to today. Add a few more weeks for the lab test results and we're closer to two and half months. 

This really began back in November, so it's been 6 1/2 months to get today, and as I've gone through this process, my condition has continued to worsen. It still is. I'm fighting. I'm doing whatever the doctors tell me to do to get a lung transplant. I have to do Pulmonary Rehab twice a week from now until I get a lung transplant. I have to take my medications. I have to follow a special diet to try to lose some of the weight I gained while taking high doses of Prednisone. I have to have family members commit, in writing, to being my Primary and Secondary care givers. We have to attend 2 Lung Transplant Education Classes with my Primary & Secondary Care Givers and any family that wants to attend. We(Care Givers & Family) have to attend 2 different Lung Transplant Support Groups (one geared toward patients like me who are still waiting for their transplant; and one geared more toward patients who have already had their transplant). 

This has been a VERY long journey and it's nowhere near over. This is just Phase I. I am waiting for Phase I to end; to get that call that says "You are on the list" and tell me how high on the list I am. Then Phase II begins. That's what I am told is the hardest part; waiting for the call to come that your organs have been procured. But that can't happen until we finish this first Phase. 

So this is it! Let's get on with it. Take my blood, give me my shot and get me on that list!

1 comment:

  1. At least things are moving now--at the very least. I know how relieved you are but at the same time, I know you won't be truly relieved until that lung donation comes through, then you will have the hurdle of your surgery and recovery. But you are strong. I know you will endure yet another hurdle.

    What happens when there are no family caregivers? I am guessing a person would have to hire someone?