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Bob Rawlins replied to the topic Sleeping on a slope in the forum Join the Discussion: Welcome to all PF/IPF Patients 6 months, 2 weeks ago
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
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Bob Rawlins replied to the topic Disability Pride Month Can be Hard to Celebrate in the forum Join the Discussion: Welcome to all PF/IPF Patients 6 months, 2 weeks ago
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 t…[Read more]
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Bob Rawlins replied to the topic Eliminating Immunosuppressants for a Transplant Patient in the forum Pre/Post Lung Transplant 10 months, 2 weeks ago
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…[Read more]
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Bob Rawlins replied to the topic "Breathless" Transplant News in the forum Living with Pulmonary Fibrosis: 50+ 11 months, 2 weeks ago
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 a…[Read more]
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Bob Rawlins replied to the topic Tony Winter ♥️ in the forum In Loving Memory 11 months, 3 weeks ago
So sorry to hear this.❤️🙏
IPF is such a difficult disease that we are trying research in the healthcare community.
God Bless
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Bob Rawlins changed their profile picture 11 months, 3 weeks ago
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Bob Rawlins replied to the topic Happy Holidays! in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago
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
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Bob Rawlins replied to the topic Remembering if you took Medications in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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
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Bob Rawlins replied to the topic Started Ofev…one week in now in the forum Ofev (Nintedanib) 1 year, 6 months ago
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
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Bob Rawlins changed their profile picture 1 year, 10 months ago
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Bob Rawlins replied to the topic Increased Throat Clearing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 10 months ago
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 c…[Read more]
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Bob Rawlins replied to the topic Dizziness and IPF in the forum Living with Pulmonary Fibrosis: 50+ 2 years ago
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 alm…[Read more]
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Bob Rawlins replied to the topic Do others with IPF cough for 20 minutes every morning? in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 1 month ago
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 f…[Read more]
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Bob Rawlins replied to the topic Head aches in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago
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!!
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Bob Rawlins replied to the topic Portable Oxygen Concentators in the forum Diagnosis Information and General Questions 2 years, 2 months ago
Correction
pulsating models are NOT conducive to sleep on
sirry didn’t catch it before I posted
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Bob Rawlins replied to the topic Portable Oxygen Concentators in the forum Diagnosis Information and General Questions 2 years, 2 months ago
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…[Read more]
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Bob Rawlins replied to the topic Getting oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 3 months ago
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!!!
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Bob Rawlins replied to the topic Getting oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 3 months ago
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…[Read more]
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Bob Rawlins replied to the topic Neurontin (Gabapentin) in the forum Using Our Forums 2 years, 5 months ago
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
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Bob Rawlins replied to the topic Tailored Exercise Programs Beneficial for Patients with IPF/PF in the forum Pre/Post Lung Transplant 2 years, 5 months ago
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…[Read more]
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