Tuesday, January 26, 2010

My Five Year Date with ALS

After consulting with my pulmonary doctor, Hing and my Colorado family, we decided that I should get a trach and vent to assist my breathing. A few of my friends (PALS) have decided to not take the next step and choose to pass away. Not me, I choose to LIVE.

Below is a message that my sister, Kate wrote before my trach operation. . .

“Don’s trach surgery is set for Tuesday, January 5th. We have to get Don to the Poudre Valley Hospital by 9:30am. He will be there several days. Family can be with him in ICU 24/7. The trach is actually an easy surgery, and the potential problems with anesthetic are mitigated by the insertion (during surgery) of the breathing tube and Don being placed on a ventilator immediately. The anesthetic problems are usually slowed breathing problems, which the ventilator will take care of. The reason Don will be in the hospital for several days is so they can monitor and perfect the ventilator, and train us how to handle the vent and take care of the trach. This surgery should help Don’s breathing immensely, so he is getting rid of the CO2 buildup in his lungs. Don has been experiencing hot flashes when his CO2 sky rockets up. Also we expect it will be more portable since the vent will fit on his wheelchair and the tube will breathe through his neck, eliminating the need for the irritating VPAP face masks. Don was getting sores on the bridge of his nose.”

How am I emotionally?

Feel wonderful because of many things. Mainly because I’m not in physical distress. Actually it's great now that I have the trach. My coughing is nearly eliminated, except when I get lung suction. Naturally my lungs fill up with fluids and I have to have my lungs suctioned similar to suctioning my mouth. To watch my lung suction for the first time takes a little getting used to. In order to the fluid out of my lungs, unfortunately makes me cough rather violently. Not a pretty site. But it has to be done.

You can hear me burp and I can hiccup both for the first time. I certainly enjoy the fact that I don't have trouble with breathing anymore. Some of you know that excess yawning is a side affect of ALS. When I wore my mask, I would get a leak every time I would yawn. But it's wonderful not having hot flashes anymore. The vent is attached to me 24/7. My caregivers had to make necessary adjustments to the daily routine.

Soon my pulmonary doctor will recommend that go to a speech therapist so I can learn how to talk. Wow this is very exciting for me and my family.

Believe me or not but since my trach is in place, I cannot swallow fluids down my windpipe; I’m anxiously waiting to eat something. I will tell you all about the adventure in eating next time. You can be sure that a German beer is at the top of my list!

Unfortunately, I had two times where I had to be rescued because my vent failed to operate as it should. One evening, we lost power and the whole neighborhood lost power. So Kate and Ken came to my rescue and while Ken got the generator working, Kate got on the phone with the power company asking when we could get our power back. She told them that I was on a vent and they put us on the critical list. We had power in less than one hour. We certainly learned a valuable lesson that night. But it’s was very good. My new vent has an extra battery that lasts eight hours. So we are ready for the next time. Oh yeah!