We arrived at UW Hospital at 2:45 am, Monday, December 23, 2013. We left Friday, January 3, 2013, with a new lung at 3:45 pm, under 11 days. They throw in a complete new regimented life style, no extra charge. It may be weeks before I can resume the Blog, as I have to design tracking systems, go to rehab, follow up appointments, etc. Therefore, please send me only personal e-mail, as after you take the time to forward something, I have to take the time to delete it. And time is short--it will take me four times as long as normal to type this, as I'm making hundreds of typos. Really. The steroids mean I can 't sleep and am twitchy. Rare word here without a typo I have to fix. Rejection and infection are now the enemy--either one can put me back in the hospital.
Still no flowers or food allowed, as there are many things I can never eat again. Please do not visit unless you talk to us. They hammered my immune system, and an infection could kill me. Please limit phone calls as I have zero time. No time to answer questions about all this right now. Cards are fine as I own Hallmark stock.
When Bonnie handed me the phone, her eyes were like my AN/TRC-27 Antenna in
Vietnam, so I knew. "Roger, we
are on the way." Then to her, "Show time!"
I am on 25 or 26 pills, taken at different times (8, 12, 17 & 2000 hours), and some of them can cost me my life if I screw up. Plus two types of inhalers, a spray and a foul tasting liquid. You must be able to recite most of this before discharge. Some of this will go away, or decrease, but much, including hopefully lower doses of the three steroids, is for life. In addition to 3 rehab sessions each week, they want me to walk 4 times a day, 20 minutes each. And Global Warning seems to have been delayed here. Mondays temps will go from -22 to -11, making walking hard. I wear a mask around large crowds that might have many sick folks and will for six months or so. My weight was down to 155.9 lb. this morning.
I cannot yet drive or lift more than 10 pounds. I'm on a low sodium diet, (sodium interferes with some of the meds), less than two G a day to start and must restrict sugar, as I have steroid induced diabetes. We hope that will go away. I had a Bronchoscopy today, and another set in two weeks, early, but there were some things they didn't like and want to watch.
Daily I must record my weight, blood pressure (twice), temperature (twice), and blood sugar (3 times a week). Plus six daily readings on my spirometer. You blow in three times morning and night. (Seeing a drop in these numbers is your first indication of rejection.) Most of this is forever.
I can never eat raw shellfish/fish again, drink grapefruit or pomegranate, eat from a buffet or salad bar, eat leftovers from the fridge after a day (some viruses are not stopped by cold) and lots more. I can never again have more than one dink a day, and they'd prefer zero. We must focus on safe food handling.
Nurse Cathy, the hand-washing Nazi, taught me good technique. You scrub for twenty seconds with soap and warm/hot water, counting one
etc. You dry with a paper towel, not a cloth hand towel full of germs. You shut
off the water with the towel. You do this every time you use the bathroom, come
in the house, handle anything germy, or go out and shake a lot of hands. I have
joined the HWN Party and am recruiting Bonnie. If you don't wash your hands
like this, you just get a nasty cold for a week or two. I can die. Also, hand
sanitizer is not as good, as Cathy says it doesn't stop the Rotavirus, which is
a virus that causes gastroenteritis (inflammation of the stomach and
intestines). The rotavirus disease causes severe watery diarrhea, often with
vomiting, fever, and abdominal pain. So skip the hand washing lecture if
that sounds like a good time.
But I am alive and breathing without oxygen. I doubt I had six months without this blessing.
I cannot say enough about the surgical team, the nursing care, the other professional departments, or the other professional staff at both UW Hospital and the VA Hospital, and would be glad to have anyone I was cared for by care for me or a loved one in the future. It went all the way down to a housekeeper, who takes the bus to work, and asked if I'd like her to run get me a newspaper on her lunch hour! This made me teary, but several things have lately--the steroids also make you emotional.
For those of you who cannot follow directions, and sent me personal e-mails of care and prayer, I read everyone and was very touched. Now, for not following orders, "Bends and thrusts, many, many of them! Ready, begin."
My friend and brother Marine John Payne, who got a lung on 12/18/13, is also doing fine, maybe a little better than me. He got out a day sooner than I did. Meeting John and his wife Donna was a blessing for us in all this. If you are the praying type, say one for them and both donor families.
I would write more, but this took almost two hours to type. I hope I fixed the typos. I will try to post new things when I can type better. Now back to bed to see if I can sleep, as I must be up at 7:30 am to start the routine.