Since Lung Pre-Transplant Week: Part 2

Since Lung Pre-Transplant Week: Part 2

Part Two of a series submitted by Anne Tiller

The week after all the double lung transplant evaluation testing is a long one. Our hospital meets on Tuesdays, but we did not hear until Friday that we had passed the big hurdle of meeting the requirements. What a high/low moment that is. You are qualified for a transplant. You are sick enough to need a transplant.

So we start the next phase; all the other tests that need to be done. There is a medical laundry list that has to be completed before someone can go “active” on the transplant list and receive a “number.” All dental work must be done and signed off on by the treating dentist. There is a 24-hour urine test with a blood draw. A fecal blood test or a colonoscopy. The Hepatitis B series of vaccinations has to be started.

These take time to schedule and complete. Read your packet as soon as you receive it. They are all in there. Start before you go in for orientation if you can. It will impress the team and shorten the time to the active stage. I would check with the team before having any vaccinations. They may not want or need you to have them.

Mike has deteriorated quickly since the beginning of the year. It has been a long climb to make any progress. He is no longer able to work. The bitterly cold weather has kept him mostly homebound. He has had colds, sore throats, aches, and pains. All of these things make completing the list of tests more difficult. Don’t feel guilty if you can’t get everything done immediately. We all know how capricious this disease can be.

The transplant team requires that the level of steroids be fairly low. Coming down from the higher levels is never fun or easy.

On an up note, Mike is now in pulmonary rehabilitation, or as I call it, pre-hab since it is before the transplant. He seems to be doing well, but it totally exhausts him. Each time he does a little better, more exercise, less coughing. Friday’s workout and the Hepatitis B shot wore him down.

So far we have taken care of almost all the remaining tests and procedures. Dental, urine, blood and fecal components are all done. The team meets tomorrow to discuss his case.

We may go ‘active’ this week.

We could be called at any time after that. One thing they warn you about during orientation is to be prepared for false alarms, as well as the real thing. Sometimes the organs are not a good fit or a good match, or they have deteriorated and cannot be used. It could be that the patient is no longer well enough to receive them. That is why it is so important that we do everything we can to keep our loved ones healthy. Sick people, stay away!

Read part 1 of the series: A Week in Lung Pre-transplant Land

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