[David Ota]

42 degrees?!?  Just where are you from? 🙂

YOW! Swimming!

Fun Fun Fun!

 

[David Ota]

Hi Charlene

I traveled quite a bit with IPF as well as post Lung transplant for work and personal trips.

There are some great ideas in the previous posts, here’s my personal list:

1. Bring twice your required meds, one in checked, one in carry on.

2. WEAR your mask! When I first started traveling with IPF I was self conscious about wearing a mask on a plane.  Then I discovered NO ONE WANTS TO SIT NEXT TO THE SICK TERRORIST.  I got the black mask from RZMASK and I was told I look like Bane from Batman.  Many times, the last seat taken is the seat next to me (Southwest).  I throw in a couple of wet coughs during boarding and I’m as good as I can get.

3. Do not drink anything from the plane, water, coffee, soda, wine, nothing.  Bring your own water and snacks.

4. Make sure you have the correct paperwork signed by your doc for the portable O2 concentrator.  I remember each airline had their own form.  (Extra Batteries too)

5. Bring at least two bottles of hand sanitizer on the plane.  I lose more of those little bottles than I can count. (the wipes too)

6. Bring extra paper filter masks.  I have lost my RZ mask, or forgotten it at the hotel.

7. I have ‘travel’ meds of Prednisone, amox-clav, and levofloxacin.  These are if I start to feel like I am coming down with a cold or flu on travel.  I believe it is to prevent secondary infections. Got the scripts when I told the doc I was flying international.

8. Use the handicap boarding.  Some of the airports are gigantic, and getting wheeled through them is great.

9. I took my handicap car placard on one trip and forgot it in the rental car.  It came in handy though.

10. Have fun, you are not an IPF patient venturing out into a hostile germ filled world, you are a beautiful young woman looking for sand, sun and fun.

 

 

 

[David Ota]

Hi Katie

I think you covered it well.  As an IPF Survivor of sorts and a Lung Transplant Recipient, I would add my own clarifications:

1.  I would bring someone smarter than myself.  As an IPF Patient I could not remember anything.  My wife would come to every appointment, as a health care professional (Occupational Therapist) she understood what the Docs were saying and would advocate for me when the going got tough.

2. I load my med list in PDF form onto my Kindle.  That covered the health history and entertainment in one device.

3. I would bring my Verizon Hotspot from work to connect to the internet.  Some of the Hospitals and Clinics have horrible, slow or nonexistent wireless.

4. I always have noise blocking headsets.  Sometimes I need just a little peace and quiet.

[David Ota]

Ha Ha Ha… I was 55 in 2016.  I have noticed the older you are when you have the transplant, the harder the recovery.  That’s by watching the half dozen guys that I know personally.   We just don’t bounce back from being cut in half :).  The scar is pretty gnarly after surgery, but it fades with time.  Where is MGH?

[David Ota]

Hey Robert

I was diagnosed in 2010, went on OFEV as a drug trail almost immediately, I was ‘too healthy’ for the Esbriet trial.  Neither drug was approved in 2010.  By Dec of 2015, about 5 1/2 years after diagnoses I was on O2 24/7, my concentrator  put out 5l/m and it was not enough.  I could not do a 6 min walk test because my sats would drop too fast.  I thought I was doing OK, still working, driving, and climbing stairs in the house.  When I went in for the Lung Transplant Eval in Feb 2016, the doc was ready to list me that day.  I was in shock, I argued with her and my wife that I was too healthy, surely there were sicker people out there.  As it turns out, they do not want the sickest patients, their recover is slower and poorer.  Go figure…

 

 

 

[David Ota]

Hi Robert

FMLA is the Family and Medical Leave Act, if you qualify, your job is protected for 12 weeks, unpaid, so you have some place to go back to after 12 weeks.  During my FMLA, I took ETO (time off) and I have an Illness bank of hours that I could draw a paycheck from.  I also have short term disability insurance from work.  Combining FMLA, ETO, Illness Bank and Short Term Disability I did not miss a paycheck.  It worked very well in my particular situation.

I had my Double Lung Transplant at St Josephs Hospital, Dignity Health in Phoenix, AZ.  The program has become very large, and the wait times very short.

[David Ota]

Hi Mark ( @mark-koziol )

As an IT professional, I sit on my behind and drink coffee.  Sometimes I answer the phone :).  I returned to work full time around 20+ weeks post transplant.  I was working from home with IPF, worked right up to the Lung Transplant on May 31, 2016, then returned to work sometime in Oct 2016.  Working in IT made work from home very easy, and my boss and company were very accommodating.  I continue to work full time, traveling as needed.  Some days, I get very tired or my stomach hurts and I can laydown for a bit to recover.  Oddly enough, I returned to the same position post transplant, but in the 3 years since the surgery, I’ve received 2 promotions.  I keep telling them I’m old and broken down, but in IT, you clearly can be old and broken down.

My work made a number of accommodations, mainly working from home, and moving near the transplant hospital.

I used FMLA twice, once right after the transplant, and once about 20 months post transplant to get my meds under control.

[David Ota]

Charlene

Your concerns are valid, and speak well of your thoughful and caring nature.

Lucky for me, I was not born thoughtful or caring.  Some would argue I was born without a heart or compassion.  They are wrong, but I would have to consider my arguments, and a strategy to convince myself and them. 🙂

I was, however, born an engineer.   In my binary black and white world, I skin these decisions back to the bone, and try and keep things simple.  I recall asking myself if want to move forward with a transplant.  The question I needed to answer was:

Am I ready to leave this world?

All other considerations were immaterial until I could answer this question for myself.

Simple question, simple answer.  I was not ready to leave this world.  I still had things to see and do, and there was only one path out of IPF.

One Engineer’s answer:

Emotional considerations:

Survivor’s guilt – This is not something that would affect me.  I did not kill anyone to steal their lungs.  I did not survive at someone else’s expense.  They were dead before I got the call.

Loss of independence, normalcy and routine.  – I chuckle at this one, that ship sailed when IPF became my enemy.  A non-issue by the time the doc’s are looking to cut.

Financial considerations:

True concerns, but not part of the decision to have a transplant.

Relocate to transplant ceneter for operation: Yes, < 4 months

Time away from work: Yes, used FMLA and my employer illnes bank, total time off <5 months.  I carry short term disability insurance, and did not miss a check.

Medical expenses: Yes OUCH!, my drugs are mostly covered by my health insurance and the cost of the operation was covered as well as $10K in living expenses.  I expect to meet my out of pocket medical expenses every year and budget accordingly.

Physical considerations:

Pain from surgery: Surprisingly little.  They had me pretty drugged up and on an epidural. I remember looking at this GIGANTIC cut across my chest and poking it with my finger.  I felt NOTHING! I figured they cut a couple of nerves and it was numb.  I was wrong as subsequent surgeries would inform me, but my transplant surgery was not a pain fest and opiate ride.

Fatigue: Yes, but at xmas 2018, 2+ years out, I hiked up and down some mountain trail in Scottsdale.  Had to stop and rest, but it was a real hike and I made it up and down with some whining.

Side affects: Yes, not sure where to go with this one.  I’m on meds to help with the side affects of other meds.  I’ve lost weight and have to watch how I swallow from the side effects of the surgery.  Like most things, even the crazy stuff become routine if you do it long enough.

Social considerations:

Your observations are real and true:

Being a crabby old man I treasure the opportunity to avoid sick people.  You are young and probably my polar opposite, I suspect we are the same species, but the similarities drop off fast from there.  Luckily they make RZMasks and hand sanitizer.

I have lost friends and family by virtue of staying alive longer than them.  You make new friends and life continues to throw curveballs at your head.

[David Ota]

Hi Linda ( @lwaldschmidt )

Ha Ha HA, you asked about my new set of health horrors.

Let me preface this with; I am the luckiest man I know, I wake up with the most beautiful woman on earth, I am able to work an 8 hour day, I was able to watch both my kids graduate from college since my lung transplant.  I appreciate the gift of time more now than before IPF.

I just saw this refrigerator magnet on my fridge:

Call your transplant coordinator if you experience:

Shortness of breath

Fever

Coughing

Ankle Swelling

Feeling tired or dizzy

Feeling like before the transplant

Anything red, swollen or has a discharge

Burning urination, difficulty urinating, no urination

Flu-like symptoms

Constipation/diarrhea

I have one of these symptoms everyday, I do not call the coordinator because I would be sent to the ER.  I dread the ER.

I get stomach aches EVERY DAY, I am tired when I get up in the morning.  I had a chunk of skin cancer cut off a month ago.  I take a fist full of pills twice a day, (12 pills, I just counted)

We know quite a few transplantees now.  We have become friends and get together to swap stories and meds.  Several have died, another looks like skin cancer will take him down.  Each story is SO different that I do not see many commonalities.  However, everyone had health issues to deal with, med levels screwed up, white blood cell count at 0, skin cancer, bone density loss, fluid around lungs, shortness of breath, tiredness, etc.

Not what I expected, these are not ‘rejection’ symptoms, I believe them to be symptoms of the immune suppressants and how invasive the original surgery is.

I have heard people question if they would even want a Lung Transplant.  That is a personal decision that all the IPF patients will face.  My recovery was difficult for me and my wife, and I questioned if I had made a mistake 8 weeks post surgery.  I am at my 3 year mark this week, and at 156 weeks post surgery, I am glad I ended my IPF  adventure and started my Lung Transplant journey, stomach ache and all.

 

[David Ota]

Eric/Linda

This is probably not the answer you were looking for, but I can speak on my PF end days.

Since I am writing this, clearly I am not ‘ended’ :), but my IPF is gone.  A short bio: I was diagnosed in 2010 at the age of 49 with IPF.  There was no ofev or esbriet, they were still trials.  The mean time to failure in 2010 was 3-5 years, I remember 50% fail at 3 years, 70% fail by 5 years.  Quite upsetting.

By 2015, I was lugging O2 everywhere, I had run O2 throughout my house and could not climb 13 stairs to my second floor without stopping twice to rest.  The coughing had gotten to the point it was difficult to hold a conversation, I would cough so hard I would vomit, probably on a weekly basis.  I had thrown out my back several times just coughing.  I would get irritated with myself if I had to go up and down the stairs 3 times in one day.  I was not in pain, but I had really stopped going out to the grocery store or anywhere else, lugging the O2 was too much of a pain to really do it with out a good reason.

I could not get through airports without a wheelchair and someone to push me, or I walked REALLY SLOW.

I could not complete the 6 minute walk test, O2 sats dropped too low in less that 60 secs.  My concentrator max’d out at 5 lpm.

I was not in any real pain, just that my life had slowly been taken away, and I did not see how limited I was at the end.

I had a lung transplant work up in Jan of 2016, 5 1/2 years after being diagnosed at Dignity/St Joe’s in Phoenix.  The Pulmonologist wanted to get me listed as soon as I finished all the tests.  Denial is more than just a river, I argued with her that I was too healthy for lung transplant.  My wife corrected me.  When I got the call for lungs, I was living in a condo across the street from the hospital.  I was healthy enough to shower by myself, and drag my O2 across the street to the hospital.  That was almost 3 years ago.  The end of my IPF and the beginning of a whole new set or health horrors.  I hope this helps,