David Ota
Forum Replies Created
-
Hi Margo
If your husband is not on oxygen, as a complete non medical professional, he probably does not need it in a plane. I flew for years w/o oxygen at the start of my IPF. It is a pain to lug and keep charged. I was on O2 at night from the start of my diagnosis, but traveled without it. I had to buy my own portable O2 concentrator, I recall it being $2000-$3000 10+ years ago.
I found, walking slow and having patience with myself worked wonders.
-
Hi Margo, I was diagnosed with IPF back in 2011 so I have quite a history with IPF. I read your post and chuckled. I have some insight into bucket lists and diet that my caregiver wife may not completely agree with so take it with a grain of salt 🙂
If you take away your husbands chips and beef jerky he may or may not live longer, but each day will seem much longer and less fun. I personally recommend cheese burgers and bacon ranch fries. Losing weight is an idea though, since IPF is progressive so carrying extra weight is harder everyday.
Bucket lists are great. Flying with oxygen is not. If he’s not on oxygen, traveling is much easier. The airlines can get pretty strict with extra batteries and such on a plane. High altitude did not affect me greatly while I flew with IPF, I flew right up until I got a lung transplant, your mileage may vary. I have heard of altitude triggering Acute exacerbation of IPF, it did not for me. If you’re going to go, now is better than later. I recall Charlene Marshall, one of the moderators on this forum going to Hawaii with IPF several years ago. She may have advise on bucket lists and travel.
Smoking was awful for me, It would trigger coughing fits when I was around it. Coughing and IPF pretty much go hand in hand. I would cough so hard I would pull muscles in my back.
Good Luck
Dave
-
b-u-singh
Thank you for sharing your experience. I read your blog posts, and they paint quite a picture. It is difficult for me to identify with your experience. The medical care and cultural differences between the US and India seem huge. One thing that transcends Countries and cultures is numbers. Your table of survival statistics was to me horrible. If I did my math correctly 4 of 14 double lung transplant recipients survived 1 years post surgery. Less than 30%. I am a double lung transplant recipient in the US. If I was presented those numbers when I had to make my decision to move forward with or without a transplant, they would have made me pause. The raw numbers I was presented with was 90% survival after year 1, and roughly a 90% chance of survival each subsequent year, with a median life expectancy of 6 years. I am approaching year 8. I do not know what my decision would have been given your table. Your mother was a brave woman. Peace.
-
Hi Larry
I’m post IPF, 7 years into a double lung transplant. I just saw my pulmonologist this morning. He said, ‘No airports, or indoor restaurants’. Granted a lung transplant is not IPF, but he also mentioned his hospital beds were full of colds, covid and rsv. I can easily miss holiday gathering and restaurants. That answers the old mask or no mask question for me. Happy Holidays.
-
Hello Charlene
7 years post transplant:
1. No grapefruit (interacts with meds)
2. No lakes (too much chance of waterborne infection)
3. No Buffets (This may be my own restriction, buffets are just too horrible for me to think about now)
4. No restaurant salads (unwashed vegetables)
5. No water with fruit in it (Sliced lemons in your glass from a restaurant)
I do eat sliced deli meat and cheeses, but that’s more about my weakness. There may have been a restriction but I forget.
My wife does the gardening and mows the grass now.
Like all things, in a pinch, rules bend.
-
Hi Charlene
As a younger man, father, husband, I would try and get my kids and their friends to behave; wear a seatbelt, go to school, drive slower, no smoking in my house, no drugs or alcohol. As I have aged, I have concluded I can barely control my own self, I do not make the ‘smart choices’ all the time. Youth is wasted on the young. I made many questionable decisions in my youth, just ask my mother 😬. That being the case, I look back and can honestly say it was a fun and entertaining ride. It is painful to watch young people make silly mistakes, but it is their life. If you look closely, you can find these same young people among the boomer crowd, no savings, failing health, at war with their kids, homelessness a paycheck away. My ‘keen’ observations have allowed me to make peace with myself. Live and let vape, or ‘Not my monkeys, not my circus.’
Peace
-
I have given myself permission to:
1. Occasionally feel depressed
2. Eat what I like
3. Do nothing and enjoy it
-
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 your trip.
Tip 2. Keep your meds with you, not in checked luggage.
Tip 3. Split your meds into two sets in different bags.
Tip 4. Trip Insurance in-case something crazy happens with Covid/transplant/meds.
Good Luck
Dave
-
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 setting up a program to distribute the small amount of EvuSheld they had received. When I asked my Transplant Coordinator about that, she said they were limiting the EvuSheld to the new Transplantees, less than 1 year from their operation. That makes sense to me. I told my coordinator I knew a good looking transplantee that would be willing to take the EvuSheld if the had any Anti-Evu’s on their list. 🙂
-
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 so much in a day. Everyone IS entitled to their own opinion, no matter how misguided or ignorant. I do not eat out, go to the movies, or shop in stores these days. The maskless have driven me underground. On the whole, my life is better for it.
-
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, eating junk food, and telling him to go for the horrible surgery to remove his cancer. We both rolled the dice once and won on the transplant, roll them again. He ultimately decided a successful surgery was still a horrible loss and chose not to have the surgery.
A childhood friend of mine, no IPF, no Transplant retired and died on a golf course within a year of retiring. I heard from his family that he NEVER went to the doctor, he just did not want to do that.
Before I was diagnosed with IPF, I knew I would lose this race. Everyone does. My goal in life was not to win the race and live forever, no vegan detox or freezing my brain. My narrow, selfish goal was to have fun while I’m here, and take care of the responsibilities I have accumulated over the years.
I’m in chronic rejection now, 6 years post transplant. I had a deep fried crayfish poorboy, home made this past weekend. 1st one I’ve ever made. Dang it was good.
This was a long winded way to say, life in general has made me no guarantees. My life is what I make of it. It’s not always fun, but, when I can make it fun, I try to show up, shut-up and smile.
PEACE… and have fun 🙂
-
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 admit, traveling in general is tough. I keep waiting for Omnicron to run it’s course. We’ll see.
-
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 immunosuppressed.
https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/immuno.html
I’ll update this thread on how that goes.
-
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. He was accepted at the Dignity/St Joe’s Lung Transplant program and had a successful double lung transplant in 2016 at the age of 70. He is struggling now after 5 years post transplant and a bout of Covid last year. Another friend had COPD, was obese and diabetic, younger that 70. He applied at Dignity/St Joe’s was rejected and applied at University of Colorado and was accepted. He had a successful lung transplant in 2019 in Denver and is doing well. If you are flexible in your location, one transplant centers rejection is another centers successful transplant.
-
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 with weakened immune systems.”
I’ve had my second set of Evusheld shots, and the latest Covid booster. I believe it works, my health wife contracted Covid on our trip but I did not!?! Does not seem reasonable, but here we are.
Dave
-
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 based purely on length of time from transplant and the drop in my PFT test results. I did not feel any symptoms. I did notice that it was harder to walk my daily 2 mile walk, but I put that down to just being more out of shape.
For such long flights I would make sure to get up and walk the length of the plane (blood clots) and bring my own food and drinks (I have completely stopped eating and drinking airline stuff. N-95 masks the whole way.
Good Luck! Just getting to your destination sounds like an adventure.
Dave
-
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.
At the time, I recall there were several variables that GREATLY affected wait times. Physical size of the lungs you needed was one that I did not consider. There a small woman from California staying in our condo complex. She had been waiting months for the correct size and type of lungs. The ‘type’ was antibodies I think.
I am 5′ 10″ tall ~160lbs, fairly typical, so sizing was not am issue with my transplant.
-
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 pressure, thinning skin, and an upset stomach. My memory is shot, and my hands shake. I am completely out of shape, but that may be from being a slug.
-
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 forced to leave me or kill me. Neither was an acceptable choice.
-
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 reading that CNN story, I’d definitely call ahead. I did not, and it went fine, but I do not need the frustration of being denied while standing in line.
-
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 WebEx. Free pizza is one of the highlights of my work these days.
Dave