Still Alive

Still Alive and Waiting for the Call

Parts Five and Six of a series submitted by Anne Tiller

While we were waiting for the call that lungs were available for the transplant, we took one day at a time, but it had a little bit of an edge to it. As Mike put it, “Rehab, Rehab, Rehab,” pretty much summed up our activities.

During that time, we had our first encounter with blue hands. It was just a simple trip to the bathroom and back, but his hands turned a dark blue. Luckily he recovered quickly, however, it was enough to start regular blood oxygen readings. His oxygen levels dropped very quickly with any kind of vertical movement. He went up; oxygen went down. Pretty scary stuff.

We already had doctors’ visits scheduled for the end of the week, so that made it somewhat easier. We did rehab on Monday which did not go too well. Tuesday we tried to go out for a while but his oxygen tank froze. Disaster in the making. We made it home okay but a little shaken and very tired.

The Wednesday visit was at the hypertension clinic, where Mike walked in but left in a wheelchair because he was having too hard of a time breathing. They checked him over, recommended a higher oxygen concentration then sent him to have an Echocardiogram. Well, part of one. They did what they call a “bubble test.” It is used to determine if the oxygen exchange is happening properly in the heart. Sometimes there can be a cross of un-oxygenated blood into the bloodstream, which could cause the drop. We were fortunate again in that this proved to not be the case. The unfortunate thing is that we begin to think that it means the lungs have deteriorated more rapidly than we first thought.

Next came the pulmonologist and the rheumatologist, Oh and let’s not forget the much beloved 6 Minute Walk (yes that is acute sarcasm). This test takes an hour or more to complete. He did not finish as he could not breathe without difficulty, and it took an hour and a half.

We took the results to the pulmonologist, a wonderful doctor who has been with us for quite a few years, and we could tell that she did not like his numbers. She had another shock for us: They think the drop may be related to a blood clot. No need to tell you that this is very serious. A CT Scan with contrast was a possible test, but Mike was taking medication which made them hesitate because it may be hard on the kidneys. It then took a meeting of the minds of ALL his doctors to see what happens next.

There was a bright note in the whole Easter weekend. I decided to take care of myself a little and my best friend and I went for a spa day. It was fun and relaxing. Good thing since it has been constant stress since. I just wish I could have done the same for Mike. It is important to take care of yourself, caregivers. You never know when things will get crazy.

After what proved to be a super long day, we ended up in the middle of a huge thunderstorm. We made it home to find no electricity, which means no oxygen concentrator. We got by on liquid oxygen and old portable O2 tanks.

Lessons learned:

  1. Keep your old equipment
  2. Alert the utilities that there is a medical need in the house. They can give priority.
  3. When all else fails, order pizza




View more information: Anne Tiller


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