David Ota

I have given myself permission to:

1. Occasionally feel depressed

2. Eat what I like

3. Do nothing and enjoy it

Chris, your diet and exercise comment made me laugh. Thanks! It really is a crappy disease. If you have not had a ‘formal’ diagnosis of PF you may want to grab some Term Life Insurance while you’re still insurable.

Prabir

Double Lung Transplant at Dignity/St Joes in Phoenix.  May, 2016, I was 55 years old at the time.

Have you received the Evusheld injections for the immunocompromised?

“AstraZeneca’s Evusheld, the only monoclonal antibody authorized as a periodic injection to prevent infection, has become an essential shot for roughly 17,000 Americans wi…[Read more]

Prabir

From Phoenix, the 1st flight was to Florida, around 4 hours in the air. The next day Orlando to Aruba about 3 hours.

I have not not needed oxygen since the transplant.

Your flights are long flights!

I was diagnosed to be in rejection at my 4th anniversary clinic visit.

For me, there were no signs of ‘rejection’. The diagnosis was bas…[Read more]

Prabir

Congratulations on dodging Covid for 2 1/2 years. I’m 6+ years post transplant and am in chronic rejection.  I’m guessing a transcontinental trip means flying.  My wife and I just got back from Aruba, we shut down any flying trips through the pandemic and finally got on a plane in July.

Tip 1. Bring enough medicine for twice as long as yo…[Read more]

Kris

I had my Double Lung Transplant at Dignity Health/St Joe’s in Phoenix in 2016 and waited less than 4 days.  That call was certainly a surprise.  Their current published wait time is 15 days.

https://www.dignityhealth.org/arizona/locations/stjosephs/services/lung-disease-thoracic-disorders/programs/lung-transplantation

At the time, I…[Read more]

Hi Ron

I did not see this thread.  How did your work up go?  The post transplant side effects of the drugs can be numerous and serious.  Pre Transplant I had bone density issues, Post Transplant (6 years post) I still have bone density issues, but they are controlled with drugs and exercise.  The new problems are: skin cancer, high blood pre…[Read more]

Christie

I have heard of EvuSheld.  My wife mentioned it before we went to Clinic a couple of weeks ago.  I asked the Doc about it or getting a script for Paxlovid.  She said the hospital did not have EvuSheld and was essentially saving Paxlovid for those patients who really needed it.  At my last photopheresis visit, I heard the Hospital was set…[Read more]

Paul B

Yeah, the Covid Underground is cramping my “Old Man Style”  I have not been to a grocery store in 2 years.  I had planned to start traveling with my wife, but these days, those are confined to driving trips.  I have not flown in 2 years.  I had hoped to take her to Europe for Christmas.  I still plan to, we’ll see.

Charlene

At 34 I know I was not a “rather be happy than right” kind of guy.  About 10 years ago (50ish) I wrote my rules to live by.  One of them was “Don’t compound childish with stupid and stubborn”.  When I wrote these, it was not to share my wisdom, but instead to remind myself if I continued to act like a fool, my lovely wife would be fo…[Read more]

After 32 years of marriage (to the same woman 🙂  I have learned, like Paul B, I would rather be happy than right.  I was not always this way, but age, IPF, then a Lung Transplant have taken the vinegar out of my soul.  These days I save my energy for the Transplant fights I know are coming up, and enjoying life as much as I can. A guy can only do…[Read more]

Got the 4th Pfizer shot, 2nd booster yesterday at Walgreens.  My arm is a little sore, nothing that I notice unless I think about it.  It went as smooth as I could hope.  I did read a story this morning about people having problems with getting a 4th shot.

https://www.cnn.com/2022/01/26/health/fourth-shots-immune-compromised/

After re…[Read more]

CHARLENE!

We have swapped stories over the years.  Lung Transplants are a Harsh Reality. No Doubt. No Lie.  Like most things in life, how you see the world and all it’s stark realities can makes a difference.

A friend of mine, about the same age, also an engineer, died of CANCER?!? from the transplant drugs.  I remember sitting with him, ea…[Read more]

Christie

All shots are Pfizer, that seems to be the recommendation. I think mix and match would be the way to go, but with as many variables us transplants have, I don’t want to go too far out on a limb.

We just cancelled our vacation to Aruba in Feb.  Flying international seems too iffy right now.  The rules are changing every week.  I have to…[Read more]

I just completed my quarterly lung transplant clinic visit yesterday.  The pulmonologist recommended a 2nd booster so I got home and hit the Walgreens vaccine scheduling web page.  I am now signed up for a 2nd booster of the Pfizer vaccine.  The CDC web page for the immunosuppressed, in it’s round about fashion also recommends 4 shots for the im…[Read more]

Thanks Christie

Sun Protection becomes a big deal for us immunosuppressed folks.  The Binax test kit is available at Walgreens OTC $25.  My kids are traveling this holiday season so I told them to test before they come here.  For work, one of our vendors has Pizza-Cast sales pitch/seminars.  They send me a free pizza 30 min before the Web…[Read more]

Ha Ha HA

This is a funny one.

N95 masks with the breather valve

Hand Sanitizer

Sun Screen

Take out pizza

A new pill caddy – mines getting dirty

A sun hat

UV protection shirts

Binax Now Covid self tests

Stay Safe – Happy Holidays

I was evaluated by University of Colorado in Denver and Dignity St Joe’s in Phoenix in 2010-2015.  I do not know what the actual hard cutoffs are on either, but the Dignity program is known to take riskier patients.   A friend of ours was rejected at Duke University due to obesity, a prior heart attack and being too close to their age limit of 70…[Read more]