My wife has recently completed her book, “A Journey Like No Other: Surviving a Lung Transplant from a Caregiver’s Perspective”. The book is available to pre-order from Amazon with a auto-delivery date of September 1st. If you have Kindle Unlimited the book will be free. The paperback and hardback versions will be released September 30th. …

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Mr Wizard 😁

I know for a fact the different transplant centers have different criteria for transplant. One friend of mine was turned down at Duke for obesity and cancer and accepted at St Joes in Phoenix. I know another lung transplant recipient who was denied at St Joes and accepted at University of Colorado. Each transplant center has their…

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Hi HighHopes

I like the Name…

I am 8 years post double lung transplant. I was on OFEV as an experimental drug for years and took Esbriet and actually took both drugs on the OFEV Study. As you probably know both OFEV and Esbriet are now approved for use for IPF.

I’ve had MANY PFT tests over the last 13 years. During my IPF days my FVC and…

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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…

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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…

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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…

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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…

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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… Read more

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… Read more

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… 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… 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… Read more

After 2 1/2 years, Covid 19 finally caught my family.  Everyone is up-to-date with vaccines and boosters, and I’ve (61yo double lung transplant 2016) had one dose of Evusheld.

My son (29yo) tested positive in July, after attending a concert in Phoenix.  He started feeling symptoms, mainly a sore throat and headache.  He tested positive on a… 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,… 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… 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… 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… 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… 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… 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,… 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… 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… 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… 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… Read more

Christie

I am shocked and surprised the FDA and CDC has our backs 🙂

Who’d-a-thought.  I’ve been watching the news on the topic for the last month or so and was getting antsy for a decision.

I scheduled a CVS Pharmacy Pfizer 3rd dose on their website for this morning (Monday 8/16/2021) but my wife talked to one of her transplant… Read more

Jill

To answer your question: “Is your quality of life better with the transplant than on the meds?”

Answer: “Yes, My quality of life before and after the transplant is exponentially better”

That was a simple answer to a straightforward question.  Like most things with IPF and a Lung Transplants answers are neither simple or… Read more

Disability Milestones.  The indignities keep coming.  I must say the concept of a Disability Milestones is a new concept.  I have used “Milestone” in my previous life as, 1st Job, 1st Car, 1st Marriage (and last hopefully), Kids, Home ownership…  Signs that I was expanding my life, my independence and freedom.

O2 tank, Handicap Placard,… Read more

Hi Don

As I said in my last post, I’ve known and followed 7 other transplantees in some detail.  The recovery from the surgery can vary wildly between individuals.  There was a similar question in one of Charlene’s Posts.  I remember saying the decision to move forward with a transplant, for me, came down to one simple question, “Am I ready to… Read more

Christie

Not that you asked, but here’s a view from the other side of the fence.  I am the ailing parent with adult children who have no kids.  IPF-2011, Lung Transplant-2016, Chronic Rejection-2020.

1. Being a parent is the hardest job I have ever had, bar none.  I did not think I was ready when I had my 1st when I was 31, and my son is… Read more

Hi Jill

I had a double lung transplant May 31, 2016 after 5 years with IPF.  I work as an IT professional, I was traveling quite a bit before IPF 10-20 trips a year.  I was is decent ‘IPF’ health in May of 2016.  I worked right up to the day I got the call from the hospital.  After the transplant, I was out for 5 months healing and getting my… Read more

Hi Nancy

I did not see your question until just now.  I saw Dr Tokman as the primary pulmonologist, but there were several doctors involved, Dr A… Dr P, and the surgeon was “The young good looking guy”  🙂  (My wifes description, not mine)

I was 55 when I received the new lungs.  2021 will make 5 years.

 

Jay

I read your post and I really feel for you.  The unknown is a massively scary place.  I was diagnosed with IPF (Idiopathic Pulmonary Fibrosis) which is short hand for “I don’t know why your lung are turning into scar tissue.  At that time there was no treatment and the diagnosis was an estimated 3-5 years mean time to failure.  I was, in… Read more

Hey Mark

I was diagnosed with Chronic Rejection – BOS at the beginning of this year, about 3 years and 8 months after transplant. PFT were down +/- 10% to 18% depending on how you measure.  My wife and I spoke to the pulmonologist we trust the most and started looking a experimental trials.  We ended up at photopheresis, which is not really… Read more

Hi guys

The title caught my eye.  I’m 4+ years post transplant (May 2016) and I recall 20 months post, back at work on a travel assignment.  My hands were shaking so bad I could not use a computer touch pad.  I had to get a coworker to ‘help’ put my cursor on an excel spreadsheet cell.   How embarrassing.  I started carrying a mouse with… Read more

Michael

I’m 4+ years out from my transplant at St Joes in Phoenix.  I currently take 16 different meds and vitamens morning and night.  At the start of this transplant it was more, probably around 20, including some serious antibiotics and nebulizer drugs.  I recall pain killers I did not use and testing for blood sugar.  Those stopped very… Read more

Hi John

Sorry to hear you’re a newbie to the world of IPF.  IPF is scary enough without Covid-19 running loose in the world.  I, sadly am not a newbie, I was diagnosed with IPF in 2011.  The initial diagnosis was seen on a simple xray and confirmed with a CT scan.  My original Pulmonologist was not familiar with treatment and immediately… Read more

Ha Ha HA.  Toxic Positivity, what a concept.  I have not heard that term before, but I instinctually feel the truthiness of it.  What struck me in the article is the heading, “The right way to be positive”.  REALLY?!? Seems a little judgy.  I suspect most people are positive or negative in any given situation based on their own history and… Read more

Thank You Thank You Thank You

Megan, for sharing your father’s story, for stepping up as a care giver and so eloquently writing of something so personal.  When I was 1st diagnosed with IPF in 2010 or so, I searched for anything on what the end looked like.  There was nothing available, and the unknown is quite a scary abyss to peer into.

Bill,… Read more

Silver Linings

1. Wearing a mask in public is fashion forward

2. The ‘old timer’ IPF Patients are Masters Level Social Isolationists

3. Working from home is no longer a “Reasonable Accommodation” it’s just Tuesday

4. You had N95 masks already

5. Being afraid of flu season is now a shared experience

There are so many things wrong with… Read more

Stephen

I’m coming on 4 years with a Double Lung Transplant.  My wife was/is my primary caregiver, pre and post transplant.  I had the xplant at St Joes in Phoenix but lived in Albuquerque at the time.

We saw two xplant patients that did not have one fulltime caregiver:

Patient 1 – P1 was from out of town, and used his two sister to tag team… Read more

Hi Luis

That is a tough general question.  For my particular situation:

I am 4 years into my lung transplant.  I lived in New Mexico and had the xplant at St Joe’s in Phoenix AZ.  I had pretty good insurance through Presbyterian Health in New Mexico.

There was the requirement I live in Phoenix for a minimum of 12 weeks with no major… Read more

<div>Trish</div>
<div>One of the PF Forums is for Lung Transplants</div>
<div>It has this link    https://www.srtr.org/   for comparing transplant centers.</div>
<div>Jacksonville Mayo is on that list and so is Shands,  choose lungs at the top and it shows you all the Lung Transplant Centers and their Stats.</div>
<div></div>
<div>Tell your… Read more

Hi Trish

After going through the eval process at 2 different transplant centers, I know the transplant criteria is different at different centers.  I was evaluated at Univ of Colorado in Denver and St Joes/Dignity in Phoenix.  I ended up at St Joes/Dignity in Phoenix in 2016.

Along the way, my wife and I have met many Lung Transplantees.  One… Read more

Hi Mark

I wanted to add a “different” point of view on the sugar topic.  I was at an Indiana University watch party for an IU football game and struck up a conversation with a young man, probably 30-35 years old.  He proceeded to tell me he was on a low/no carb diet and had started intermittent fasting.  I asked him if he planned to live… Read more

Hi Charlene

After 5 Years of IPF and 4 years of Lung Transplantitis, I still feel a little self conscious wearing a mask. (RZMask can make a real fashion statement)

Mainly I have come to embrace wearing a mask, I enjoy scaring small children and my fellow Southwest Airline travelers.  I wear a mask on an airplane as if my life depended on it… Read more

Mark, that’s great on the tamiflu.  I avoid people, eating out, etc during the cold and flu season.  I did not know tamiflu was that effective.  So far I’ve escaped the flu as an x-men 🙂