Saturday, January 4, 2014

I'm home with a new lung

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 Mississippi, 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.

Semper Fidelis,


Bob

14 comments:

  1. Bob, can't say how happy I am to receive this news. Some of your current ills I can identify with…had lung cancer surgery in 2007, took out a good chunk of my left lung…then six months of chemo. During the chemo I was on some massive steroids and other stuff. I slept decent one night a week so I know that perennial "tiredness" you get with that regime. From family experience, you will eventually get a slight reprieve from teetering immune systems and organ rejection medicine. The anti-rejection medicines are leaps and bounds better than they were ten years ago and will get better still as much attention (and a lust for profits) is being paid to this.

    Semper Fi, my friend. You have lots of work to do..just as I did six years ago…but you're tough and it won't be long before you are back in the fight.

    Dearel Friend

    ReplyDelete
  2. From one toughie to another, you beat the odds and now will start to live again. Steriods are just part of the recovery process and their use will pass. Follow all of the good instructions that you recieve and make them part of your forever habits. People in Tallahassee miss you and will continue to root for and admire you, you tough kilt wearing marine and Celtic music lover.
    Mike

    ReplyDelete
  3. I have been thinking of you over the Holidays and in prayer that no news meant you had the surgery and were getting the new lung. Praise.The.Lord.

    God Bless you and thanks for checking in!

    ReplyDelete
  4. Bob, NOT NOW, but maybe late Spring or Summer, I'd like to come talk to you, and write about it. Meanwhile know I'm praying for you and look forward to meeting you. Semper Fi,

    ReplyDelete
  5. Bob & Bonnie,

    While my lungs are intact and functioning properly, I feel like I can breathe again after reading your latest post. You have no idea how badly I have been waiting to hear (read) good news from you.

    Patience, my friend, you have a lot of us in your corner and wishing nothing but the best for you both.

    May this year be filled with continued blessings.

    Semper Fi,

    Lee Hall

    ReplyDelete
  6. since you KNOW i have NEVER followed rules/orders, am not sending you a private email but leaving a comment here on your blog ;-) Sending you a heart full of good wishes and much love as you navigate this new lifestyle! Semper Fi dear one.

    ReplyDelete
  7. bob, sending you a heart full of good wishes & much love. semper fi dear one

    ReplyDelete
  8. Best news of the New Year so far. Stay well, Brother.

    Rod

    ReplyDelete
  9. Bob & Bonnie - This shows that prayers do indeed work! I prayed for you to receive the lung. Now the work begins, and I know you will do well. Seeing this news was wondrous! What a wonderful way to start the New Year. I will come see you when things settle down. Wishing you the very best!
    Jack Zimmermann

    ReplyDelete
  10. So glad to hear you have so much work ahead of you. I was afraid you were going to languish and be bored in retirement! Such good news, Bob. Love to you and Bonnie.

    ReplyDelete
  11. I also was worried but didn't want to bother you with an email. I sent Andy an email and asked if he had heard anything and he updated me. I'm very happy you're doing well. I look forward to your blog every day.

    ReplyDelete
  12. Of all the tough decisions you've made in your life, I imagine the decision to go ahead with this was at the top of the list. I will report the good news to the Greensboro Scottish group on 1/7. As for the recovery, no job too tough for a Leatherneck!

    ReplyDelete
  13. maggie.danhakl@healthline.comMay 18, 2014 at 8:14 AM

    Hi,

    Healthline just published a visualization of your daily value of sodium. In the chart, you can see what half of your DV of salt looks like for 30 foods: http://www.healthline.com/health/high-blood-pressure-hypertension/daily-value-sodium

    This is very valuable content as it puts nutrition information into perspective and helps a person understand how much sodium is actually in their food. I thought this would be of interest to your audience and wanted to see if you would include this as a resource on your page: http://tartanmarine.blogspot.com/2014/01/im-home-with-new-lung.html

    If you do not believe this would be a good fit for a resource on your site, even sharing this on your social communities would be a great alternativeto help get the word out.

    Thanks for your time reviewing. Please let me know your thoughts and if there are any questions I can answer.

    All the best,
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
    www.healthline.com | @Healthline | @HealthlineCorp

    About Us: corp.healthline.com

    ReplyDelete