Tuesday, May 6, 2014


I have been offline for over 10 days because I have been in the hospital because of my End Stage Lung Disease/Bronchiolitis Obliterans. Finally Loyola Medical Center agreed to Evaluate me for Transplant and I was transferred from my hospital to Loyola where I spent a full week going through the most monumental series of tests; it blew my mind.

Part of the process was also to get me stepped down, in a medically supervised situation, to a lower dose of Prednisone. In order to be a transplant candidate it is required that a candidate be on no more than 10mg of Prednisone for an extended period of time. I have been on a super high dose to manage my symptoms and weaning had proven difficult. So Loyola felt if it was to be done, it needed to be done in the hospital. So that was also part of the process.

My Work-up included the following:

-Blood Tests (30 vials of blood were drawn): Complete Blood Count, Blood Type; Electrolytes, kidney and liver functions, lipid profile, blood sugar, hepatitis and more

-Ventilation Perfusion Scan

-Angiogram #1 where a small catheter was inserted into the groin and checked the blood pressure in my heart.  They wanted to sedate me (narcotics!!) and I wouldn't let them. Said just give me a local and I'll be fine. SO glad I did this, as I was done faster and no puking. I felt like I should get a Gold Star for that procedure!

-Angiogram #2 where a small catheter is inserted in the wrist and checks the coronary arteries for blockages. Again, they wanted to sedate me and I wouldn’t let them! Gold Star #2! Both doctors who did these procedures were impressed I was able to do this and I am proud of myself for doing so!

-Chest X-Ray
-Chest CT with Dye Contrast
-Echo cardiogram
-TB Test
-Six Minute Walk Test
-Nasal Swabs
-Consultations with: Transplant Dietitian; Psychologist, Social Worker

This was above and beyond the medically supervised controlled step down of my dose of Prednisone. 

It was a tough week but well worth it if it gets me new lungs! I still have more to do for the Transplant Team in order to be considered. A series of out-patient tests they require I have done. I must have a Pap Test; Mammogram; Bone Density Scan; Dental Cleaning and Exam. I needed to have my Colonoscopy and Upper Endoscopy test results Fax’d to the Transplant Team. I am required to start Pulmonary Rehabilitation for 12 weeks, 3 days a week to try to get back into a decent fitness level (within reason given the limitations of my disease) because I am so de-conditioned from being so sick for 6 months.

In addition, the Transplant Doctors would not discharge me until I had a Bipap machine at home. They had me use one in the hospital and want me on one when I sleep. This is not the same as a C-Pap but very similar. I didn’t think I’d be able to sleep with such a machine, but once I was properly shown how to use it and select a comfortable nasal cannula I was pleasantly surprised to discover how great it is. It helps me sleep comfortably, and this was a huge problem before getting the Bipap! Not to mention, they tell me it’s good for me. I’ll take it. Just to be able to sleep again is such a relief!

I am REQUIRED to have a designated Primary Care Giver and Secondary Care Giver who must not just say they will do this, but sign a form committing to doing so that I give to the Transplant Team. These Care Givers then MUST attend a series of Transplant Education Classes with me.

This is no easy process to be sure. The Transplant Team will wait for ALL the results of everything and once they have them, then they will meet to discuss my case and decide if they will accept me for transplant. I do not expect this to happen for about 3-4 weeks but that is just my guess.

So I schedule tests, make phone calls and I wait. I am doing every single thing I can to get accepted. Bring it on I say! If it means I can get Lungs, I’ll jump through whatever hoops they ask me to! 

It's astonishing what is required to be accepted as a transplant candidate. I never thought it was simple, but to see what goes into it is eye opening indeed. 

My Bipap Machine


  1. You're my hero!!!! Amazing... what you have been through and you're still positive So happy to hear you are moving in the right direction!