[Bob Rawlins]

Best thing I ever did and I still sleep on a slope after transplant.

I can sleep better with less coughing at night

I suffer from gerd as well as new lungs.

Before surgery, my old lungs and oxygen were a must and sleeping on a slope was very beneficial

[Bob Rawlins]

Karen, just awesome outlook!

 

I tried the same positive wnergy after I stopped denying I had a serious lung disease like IPF.

I was on oxygen for almost 3 years 24/7, 3 lpm all the time and more.

was fortunate to receive a DLT 7 months ago, but honestly, I was so used to loving my life as best I can that I almost didn’t do the transplant.

But I’m glad I did. And it is a new journey and I will continue to remember your awesome positive attitude.

 

thank you and God Bless You

[Bob Rawlins]

It was one of my major concerns before I decided to have a

double  Lung Transplant.

I concluded that it was better than the alternative. Fibrosis was not going away and it’s not fixable at this time.

There are lots of studies going on about that but it wasn’t going to happen before my chronic lung disease would take my life without a transplant. I am so glad I did. Yes, the meds are challenging but LT teams have progressed so quickly over the years with Lung transplants and being able to handle most challenges and a better quality of life. This will give me an extended life, God willing,

Everyone has to decide, but I wouldn’t hesitate if all the signs are telling you to transplant, science and medicine have come so far.

 

 

[Bob Rawlins]

Russell,

Keep the faith and strong positive attitude.

I was on Oxygen for 6 years with a different type of disease at first, hit me out of the blue, life changing.

last 2 years I moved into IPF state, took OFEV right up until my Double Lung Transplant, November 22, 2021.

Best decision I’ve made. 12 weeks out a couple of hiccups but no oxygen after 3 days from surgery and getting stronger everyday.

I was out of the hospital in 11 days.

You need to keep your strength up before transplant. Especially your legs and cardio.

it’s just a new journey, my doctor best described it to me as now I am a healthy complicated patient.

I was on no less then 3 liters 24/7 and higher with exertion.

Duke is good, I live in Ohio so I had my DL at the Cleveland clinic also one of the best transplant centers in the country. I am lucky to only be 45-60 minutes away.

Evaluations can be somewhat tiresome but so necessary for this type of surgery.

Embrace it and you’ll do great. Things will change as you go but it’s worth and better then the alternative
Good Luck and God Bless

[Bob Rawlins]

Merry Christmas to you all!

Stay safe and healthy during this very crazy period of increased Covid and flu season!

looking forward to a better 2022

God Bless you all

Bob Rawlins

[Bob Rawlins]

I use my phone and set alarms so I don’t forget.

When the alarm goes off I stop whatever I’m doing and take the meds.

making sure that if I venture out and it’s close to my time I have the meds with me.

especially with Lung Transplant eventually coming for me I can’t forget to take my meds at certain and specific times.

Hope this helps

[Bob Rawlins]

Hi everyone,

This a great topic.

I struggle with keeping my nasal passages clear and believe being on oxygen 24/7 doesn’t help much either?

I do take 2 allergy medicines all year!

I also use nasal sprays like fluticasone most days!

it helps but try using Breathe Right nasal strips! It makes me have much clearer nasal passage and less throat clearing and coughing.

it’s not fun I know, but hope this might help

Bob

[Bob Rawlins]

Interesting topic for sure.

I have experienced dizziness from time to time and mostly when I am over exerting my activity without the proper oxygen flow.

Amazing how I used to be able to do some normal chores but forget at times the oxygen I need to get certain things done. That’s when I can get light-headed.

I’ve been on prednisone for almost 5 years now. My maintenance dose is 10 mg a day but it gets bumped up by my doctors at times when my tests are not so good. However, being on OFEV now we are trying  to get off all together.

I get sluggish for a few days if I have been on a higher dose and come down, I’ve been told that is normal with prednisone.

I bruise easier, but it has been a miracle drug for me for the most part.

Hope this helps

Bob Rawlins

[Bob Rawlins]

Great feedback everyone!

I have been on O2 24/7 for almost 5 years!
Coughing has been a bit of an issue. Morning is the worst until I get my nose cleared. I believe there is nasal drip at night for sure.

But the things that come out of my nose each morning are nothing short of scary, lol!!

I use a saline nasal spray and once I’m clear use flounaise spray as well a couple times a day. That seems to help as well.

Ask your Dr about a medication for your coughing as well.  These practices have helped quite a bit.

Hope this helps

[Bob Rawlins]

I get headaches from time to time as well.

I believe it is a side effect of IPF and Ofev

but I tried these Breathe Right strips you can buy at the drugstore.

they helped me quite a bit!

worth a shot I figured, Good Luck!!

[Bob Rawlins]

Correction

 

pulsating models are NOT conducive to sleep on

 

sirry didn’t catch it before I posted

[Bob Rawlins]

I hope I can help you here.

I have both a small portable POC and a larger one that has more flow and pulse settings.

To be able to travel you need to have the right POC for a plane. They require you to have enough battery power for at least 2x the flight.

Also when I travel overnight by car I make sure it can charge in the car. But you also have to be able to sleep on it if needed.

I have to have a POC to sleep on. The smaller pulsation models are very conducive for that.

But they have been great for a quick run to a store, restaurant, visit, etc… so much mire mobility. Plus they plug into car and outlets.

You can get tanks delivered to your destination if your service allows. But it can be a pain

I have been on Oxygen for over 4 years and have traveled by air and car.
POC gives you your life back through mobility and flexibility.

I would suggest a phone call to

Caire Medical INC. They are awesome!

tell them Oxygen man sent you:)

hope this helps

bob

[Bob Rawlins]

Once you get your Doctor prescriptions call around based on what you need.

i would suggest thinking about the kind of lifestyle you are or going to have.

This will give than and you the best expectations.

Good Luck!!

breathe-easy!!!

 

 

[Bob Rawlins]

It can be somewhat tedious and confusing when it comes to picking an oxygen supplier.

i made the mistake of not asking enough questions and calling several companies before choosing a supplier.

i currently use Lincaire and I believe they are nation for the most part. They have been excellent for me out here In Ohio. Actually the delivery people have become friends and they take good care of my needs. Important to have that relationship, it really helps.

if you plan on traveling while in oxygen you will need a national carrier. It is much more cost effective and eventually getting a POC in combination makes travel so much easier.

 

Once you get

[Bob Rawlins]

MaryBeth Palumbo,

 

thanks for the info, I too have cough, ugh!

 

i also have written many blogs about our journey.

cairemedical.com/blog

we talk about different things and coping

Good luck on your journey. It’s a marathon that can be quite rewarding!

#meetthechallenge

[Bob Rawlins]

Yes I have participated in pulmonary rehab for over 3 years and it is the best.

Actually one of the reasons I am keeping consistent with my baseline while taking OFEV to help slow the progression.

unfortunately, since  Covid they have shutdown pulmonary rehab and I really miss it.

I go on more walks and have a stationary bike that I exercise with but it doesn’t take the place of pulmonary rehab at the hospital.

so if you have the chance, DO IT!

you will feel so much better,

happy exercising!!!

Bob

[Bob Rawlins]

I have some of this RLS quite often and at night.

i started taking some Vitamin D and Iron supplements as suggested by my doctor and it seems to have them be more far and few between.

but, unfortunately it does make hard to sleep at night.

But I don’t get it as often now after about 2 weeks into taking the supplements.

[Bob Rawlins]

I take OFEV 2x a day 150 mg

No issues with milk or any foods really.

but taking it with or right after eating has limited some of the nausea feeling I get once in a while.

my first tests after being on it 6 months is in June

Anxious to see if there is any slow down, feel the same

 

 

[Bob Rawlins]

I agree, there is no magic number.

my doctors want me above 88 all the time no matter what I doing!

Understand I am an ARDS survivor and was left with scarring and ILD.

Even with high oxygen therapy I rarely hit 94. 91 or 92 is my rest normal.

I think your Doctor is the best and only source I would confide and listen to.

Good Luck, it stinks being on Oxygen 24/7 but could be worse, right?

All the best to you on your journey.

Bob

[Bob Rawlins]

I started OFEV about 3.5 months ago!

150mg 2x a day!

So far so good, not many side effects to date.

I am anxious to get my next follow-up appointments in June, since April and May have been postponed due to Covid-19.

Maybe some of the results will show a stabilized pace.

But don’t be afraid of OFEV, it has fantastic reviews and results and stay positive.

Hope for the best and I wish you good luck and success!

Keep living and enjoying what you can each day!!

[Bob Rawlins]

So sorry to hear this.❤️?

IPF is such a difficult disease that we are trying research in the healthcare community.

 

God Bless

[Bob Rawlins]

John,

 

hang in there. I have been on OFEV for over 2 years and it has helped me for sure.

 

I changed from 150mg 2x a day to 100mg 2x a day

 

it has limited

most of the side effects for

me

 

good luck