Greetings!

I just had a single lung transplant 3 1/2 weeks ago, and I’ve been off oxygen since the day after the surgery!

I was in the hospital 14 days, partly because I was having some heart arrhythmia that they wanted to monitor. Otherwise I could have gone home earlier.

The difference was dramatic! There are 16 stairs to get into our… Read more

Greetings Charlene!

In response to your post, BOTH cold weather and strong scents have affected me for a long time (sounds cold up there!)

In other news, it’s been 3 weeks ago today that I got the call from UCLA that they had a lung for me! I was out of state at the time, but I was able to catch a last-minute flight that got me there in… Read more

Hi Janet!

I just saw your post from 3 weeks ago. Hopefully you are doing better??

I, myself, just got out of a 5-day hospital stay for heart arrhythmia issues, which is a common ‘tandem’ condition with PF/IPF. My heart rate was bouncing all over, from as low as 30BPM up to 150+. I have had this issue for a few years now, and have had a… Read more

I’m sorry you’re having to navigate difficult situations with this. I’m not sure if you’re at a place in your relationship where you can ‘debrief’ the instance. In other words, are you able to sit down with her and say, “Can we talk about what happened the other day?” Sometimes removing the emotions and looking at it objectively can help.… Read more

Greetings again, Charlene!

If relationships didn’t have ‘hiccups’ once in a while, I would question the depth of the friendship! As friends -including spouses and significant others – get closer, the walls we’ve built to protect our innermost core can start to come down, and it’s often scary and painful. As a very wise man once said,… Read more

I, too, have had several friends and family members talk about their life situations and then end the conversation with, “but who am I to complain…YOU’RE the one with the terminal disease!”
I am not a complainer, nor do I infuse conversation with my disease (unless directly asked), but people create their own barriers…possibly as a way… Read more

Strong odors have been the bane of my existence for several years. While I don’t frequent hair salons (I’ve been shaving my head for several years), I do often accompany my wife at nail salons. I usually have to sit next to the door (if it’s open) or wait outside if there are several people getting nail polish applied/removed. Otherwise the… Read more

Hi Charlene!

You must be either in Britain or Australia? (Celsius VS. Fahrenheit) But I know that’s hot!

Regarding puffers/inhalers, before my diagnosis my doc thought I might have asthma. We tried several types of puffers, but to no avail. Probably tried 6 over 2 years. Nothing helped.

In the morning I just ride it out. The cough… Read more

Once I was awakened (still half asleep) thinking I was at the beach on a windy day. Turns out my cannula was blowing in my ear!

My pulmonologist prescribed Tessalon Perles as needed for coughing, and it seems to help. I don’t take it every day.
https://en.wikipedia.org/wiki/Benzonatate

I typically fall asleep propped up by 2 pillows, but once… Read more

I rarely am able to lay flat. I typically sleep with at least 2 pillows, sometimes 3. It’s too uncomfortable to lie flat on my back. I either have to elevate my head/upper body and/or lay on my side.

When I first lay down I typically have a few coughing episodes, then it calms down. I’ve resorted to having to take an OTC sleep aid (like… Read more

No problem at all!
I was diagnosed in February 2015 – but quite by accident. I’ll explain later.
About 10-12 years ago I started developing a persistent dry cough. After about a year I finally went to my PCP to check it out. He thought it was probably some type of asthma, so we tried an inhaler. Didn’t work. After 4-5 months we tried another… Read more

Thank you!

No problem with sharing that my FEVs have been in the low 40s. They’ve been under 50 since November. I do try to get out and about often, but if there are stairs and/or inclines (even minor ones) I have to take them very slowly – and then it takes about 4-5 minutes to “catch up”: coughing, then waiting for my O2 saturation to get… Read more

Yeah, a/c has been a cough trigger for a long time! Smoke of any type is avoided at all costs. Even the slightest physical activity has become a cough trigger (walking short distances or up a flight of stairs)
I had the option of Seattle (University of Washington) or UCLA in Los Angeles. I have a better living/accommodation in the LA area, and… Read more

Appreciate your posts, Charlene!

Even before I was diagnosed (3 years ago), strong scents (perfume/cologne, smoke/vapor of any kind) always trigger a coughing fit for me. Also, when air conditioning (car, house, etc.) kicks in, coughing ensues. I have to avoid the cold food/freezer sections in grocery stores because the cold air… Read more