Sunday, October 31, 2010
Saturday, October 30, 2010
Friday, October 29, 2010
Thursday, October 28, 2010
Wednesday, October 27, 2010
Tuesday, October 26, 2010
Monday, October 25, 2010
Sunday, October 24, 2010
The bad news is that there will be no gym or cardiac rehab in the new hospital.
Saturday, October 23, 2010
Friday, October 22, 2010
Thursday, October 21, 2010
Wednesday, October 20, 2010
She warmed right up to him and was her normal precocious self. She even sang a few songs for him. Quite cute and funny.
Tuesday, October 19, 2010
Several years ago, we were at a symposium about fibrosis and lung transplants. Michael and I shared a table with the women behind the Coalition for Pulmonary Fibrosis.
- Provide education, information, resources and hope for patients suffering from Pulmonary Fibrosis
- Fund emerging research into new approaches to treat - and ultimately cure - Pulmonary Fibrosis
- Serve as a national voice for patients and physicians by advocating on their behalf in Washington D.C.
- Improve detection, diagnosis and treatment of PF in the medical community
- Increase public awareness of Pulmonary Fibrosis
The CPF's nonprofit partners include the American Thoracic Society, the Anne Harroun Landgraf Foundation, the Caring Voice Coalition, the Genetic Alliance, the Mary D. Harris Memorial Foundation, the National Coalition of Autoimmune Patient Groups, the National Organization for Rare Disorders (NORD), the Pulmonary Paper, the Second Wind Lung Transplant Association, and more than 35 leading medical and research centers nationwide.
Monday, October 18, 2010
Sunday, October 17, 2010
Saturday, October 16, 2010
- From June when they began to post the stats until today, there have been almost 2,000 hits to this blog. 2,000! I know that is nothing for some blogs but it was a huge surprise to me.
- The most read blog is the February 18, 2010 one regarding DLCO.
- Readers of the blog are from the US, Canada, Netherlands, Belgium, Luxembourg, China, Australia, UK, Japan and India. WOW! So unexpected.
Friday, October 15, 2010
Thursday, October 14, 2010
Wednesday, October 13, 2010
She is a huge advocate of fans. She says they are the cheapest thing a person can do to relieve the symptoms of shortness of breath. Air movement. On the face. Try it.
Yoga is the latest thing that is being studied to see if it helps with shortness of breath.
Tuesday, October 12, 2010
Monday, October 11, 2010
Sunday, October 10, 2010
Saturday, October 9, 2010
Friday, October 8, 2010
- 6/05 – 41%
- 10/05 – 54%
- 6/06 – 51%
- 9/07 – 51%
- 1/08 – 49%
- 10.8 or 41%
- 12 or 45%
- 12.8 or 49%
- 11.6 or 44%
- 13.4 or 51%
Thursday, October 7, 2010
Wednesday, October 6, 2010
Tuesday, October 5, 2010
The recent trip was fun but I thought I would share with you, dear reader, what it entails to travel for even a short visit.
Oxygen: I have a large top loading liquid oxygen tank in the garage at home. It weighs over 250 pounds, is on wheels and is filled once every two weeks. Before we left, I had to remind myself to wheel it outside under the eves so it could be refilled on the day we were driving home. Also, I filled my portable system to bring with us, in case I needed it but it is good for about six hours.
Unfortunately, I could not order a top loading liquid oxygen to be at my room upon arrival in Vegas. Therefore, I would not be able to refill my portable system and would not have any supplemental oxygen outside of our hotel room. This is potentially a huge problem in the future as I continue to deteriorate.
The reason the oxygen company could not deliver a top-loading refillable tank to my room is that Homeland Security believes it may be used as a bomb. So, I had to order a concentrator. It was a big very loud concentrator that plugged into the wall and made the oxygen at the rate I needed during sleep.
At night, we plugged it in and left it in the bathroom with the door shut. We had a long tube extending from it to our bed, which I continued to trip over throughout our stay.
Breathing: The casinos are full of smoke. I had a mask with me but there were so few people in the casinos, I really did not need it. If someone lit up next to me, I just cashed in and moved on.
It was a struggle walking between casinos in the heat especially up a long ramp. I did my special breathing and was able to recover quickly.
Also, I did not to eat a large portion of food as it makes me breathless.
Washing my hands: Imperative to staying healthy. There are so many viruses and germs in an environment fill with people from throughout the world. I had to keep my hands away from my face, especially my eyes which really bothered me because of the air conditioning.
Support Hose: If I stand too long or sit too long, my ankles swell a lot. A whole lot. Grossly. It takes almost a week to get them back to their normal size. It is also not healthy to let them get that big. I wear expensive support hose I bought at a medical supply store. I put them on the morning we left and removed them the evening we arrived back home. I wore them every moment of this trip.
Medications: Always a challenge. I had several medication being delivered before our trip and they had not arrived before we left. I did have just enough to get me through. I have one medication for glaucoma that turns to water in high temperatures so I had to leave it in the refrig at home and not use it. We went on our long trip over a year ago, I had to plan for over 6 months to have all the medications I needed.
Sleep: I try to stay at my same schedule as at home – bed by 8:00. This didn’t work this trip and I arrived home totally exhausted, which can cause me to get really sick. I tried to be careful but really did not get enough rest. It was too exciting. It was too much fun to be with everyone. I have been home now for four days and I am still sleeping 12 hours at night and a nap or two during the day. Bad. This one is going to take a long to recover from all the fun.
Hotel Rooms: The rooms are full of germs. We always bring wipes and sterilize every thing in the room and bathroom. We always begin with the TV clicker, as I believe it is the dirtiest thing in the room. We wiped everything from light switches to the telephone.
So, it does take much planning when traveling, even for a short trip.