[Cheryl thomas]

I live near Pittsburgh, Pa..we get the heat and humidity..very difficult breathing with this also. I lived in Las Vegas in my younger days and 116 degrees is very hot 🔥 too. I stay inside when hot or poor air quality.

[Cheryl thomas]

Alan I too have been getting tested at UPMC. I started last year. Just found out at my May testing that my antibodies are at 74. Which means that only 26 percent of the lungs would be good for me. Do you know how many antibodies you have. It’s the HLA luminex testing they do. I might get listed or may wait many tears for a donor.  Will find out fir sure in August.

[Cheryl thomas]

The trial was stopped two weeks ago. I was the first to join at UPMC I was actually getting the drug at the end of my year. Unfortunately 600 people got the same phone call. Due to efficiency. I have declined in the year since I started it and am now using oxygen. It didn’t help me but hoping something else comes along. We had 60 in our center enrolled.

[Cheryl thomas]

Hi Nina

Mine was found in 2016 after a bout of pneumonia. Was asymptomatic until this past year..I was a swimmer. Can’t swim now. Wearing  oxygen at bedtime for the past month..I am involved in a clinical trial at the University of Pittsburgh. I just started getting the real medication which is an IV every month. Hoping it slows it down, I still go to an exercise class at my church and also cardiac rehab because I just had stents put in June of this year. Please stay active. Learn a you can and if possible get in a clinical trial. I am now testing fir a lung transplant. Not sure if I’ll qualify though. God is in control and I trust in his decision. Take care and keep reading the forums they are very informative. Also get hooked with a support group. If you can’t find one let me know you can join the one I’m in. Cheryl

 

 

[Cheryl thomas]

Hi Chati.

I was diagnosed in 2016. Didn’t have any decrease in PFT’s and CAT scan until 12/19.. I also am 67. My pulmonologist will not order the 2 approved drugs because he says they will make me sicker than I am. I still am very active but definitely notice my pulse ox  goes low with any increased exertion. I am presently in a pulmonary rehab program. I swim, ride my e bike and kayak. I have been in a clinical trial for a year. Also have been getting tested for a lung transplant. Get involved with the PFF foundation.   I am also  in a support group. We meet monthly on line. That has been a life saver for me to be able to talk to people like me. Keep active and exercise!!! Take care. I think about this everyday, never can I forget about it. Cheryl

[Cheryl thomas]

I’ve had IPF since 2016, don’t take ofev or Esbriet. Just was ordered Oxygen for exercise. Went through the transplant work up 2 weeks ago..getting a stent tomorrow. Hoping for good news. I definitely want a second chance.

[Cheryl thomas]

Hi everyone, I too have many good days but seem to think more of the bad days, I have not had may bad days because I am just starting to feel the effects slightly. Bad days for me will be when I have to use oxygen continuously. I have so many great friends that encourage me to be strong, but many  evenings when I’m alone I let my mind think of what the end stages will be like for me. I am thankful to God for every day I am still here.  So very thankful, only he knows my fate. I am making every breath count. Thankful for this forum and my support group.

[Cheryl thomas]

Hi Everyone

I too have IPF and at 67 am about to start the testing for a lung transplant at the University of Pittsburgh, I was diagnosed in April of 2021 and at this time am asymptomatic. I am very nervous about the disease itself. I am a retired nurse and took care of transplant  patients. I am  not sure this is the course I want to go though. I am currently in a clinical trial at the University and am doing well so far. I pray for all  that have this disease. I love reading your stories, I don’t feel so alone.

[Cheryl thomas]

Hello Jeff

Thanks for responding. I have never asked my pulmonologist,  but I do notice it with two other members of my support group. It really is bothersome.

Be well,

Cheryl in Pittsburgh,  Pa.

[Cheryl thomas]

I don’t have nasal  congestion but I do have to clear my throat lots if times during the day. Very annoying. Often get mucous from the back of my throat. I too have had reflux since the age of 29 and also IBS, I definitely have read there is a link to it causing IPF. Does anyone else have the throat problem?

[Cheryl thomas]

I have to clear my throat alot. This started several years ago. I was dx last June with IPF, but looking back on my CAT scan from 2016 I had interstitial lung disease. Never saw a physician about it. The throat clearing has definitely increased often tom6es with phelgm. Worse after I get up in the morning. Thought mine was definitely related to the IPF. I see my pulmonologist next month and I will ask him.

[Cheryl thomas]

@billfriedman

Hello Bill interested in where you bought both of your spirometers?

[Cheryl thomas]

Hello everyone. I love these forums because they are so informative. I have a research pulmonologist at the University of Pittsburgh. He does not want me to take one of the meds because he said “you are not sick now and these will make you sick”. I have had IPF since 2016 and still very active. No cough or SOB. I know this can change at any time. Next month I will hopefully qualify for a clinical trial at the University. It is an IV that I will receive monthly. I also have a history of IBS and GERD. I think that could be my predisposing factor. I will keep fighting this deadly disease. I am only 66 and have much I want to do.

[Cheryl thomas]

Hello to the group I enjoy reading everybody’s experience with this unfortunate disease. I was diagnosed June 2020 by a CAT scan following up on  a  nodule, not symptomatic at this time. Nodule is gone fortunately. But I started having scans in 2016 yearly and see that I have had it since then. I was swimming 3 x a week a mile prior to Covid for the last 3 years.   I have a pulmonologist at the University of Pittsburgh.  I wanted to start taking Ofev but he insists it would give me severe diarrhea and since I am not sick at this time he doesn’t advise it.  I think I will ask to try it since it sounds like it is helping most people.  I don’t want to wait until my PFT’s decline.  One breath at a time!

[Cheryl thomas]

So sorry to hear about your dear mother! My thoughts and prayers are with you and your family. I too have this awful disease. I just turned 66. Hope I am still here at 71.