[bdgaier]

I hope you all are pushing through this disease. It is exhausting. I’m replying to test intervals. I was suspected of having IPF in 2020 by my family doctor after having shortness of breath. My lungs showed up a little behind my heart which was being tested.  With Covid and delayed pulmonary testing, I officially was diagnosed July 2021. I have a team of 6 doctors. I have a CT scan and the breathing and the 6 minute walk every 3 months. I go in for blood once a month and have a urine test about every 2 months. I have now developed a terrible sinus infection with thrush in the nose. I’ve been seeing the ENT for 2 months every 2 weeks. I had 3 biopsies of my left nostril (nothing major) and then a culture test that I don’t have results for, yet. My ability to make all my appointments is getting to be a lot. I’m blessed to have a son that usually takes me. My grandkids have also pitched in. The walk to the pulmonary area is too long for me. I am on Ofev, SMZ/TMP DS (antibiotic) and Mycophenolic. My night oxygen is 2 and 3 or 4 when I’m up and about. My cough is also bad. I’m on a cough syrup with codeine. It has helped a lot. The good news is I still clean my house and do some grocery shopping. I have to rest but I feel better about myself doing things. Soon, I’ll be out in the flower gardens. Take care all.

[bdgaier]

Hi Charlene. I read much of what you write to possibly give me an idea where I am in this disease. I’m sorry you  have to deal with this at such a young age. I’m also not sure what to think in my case. I recently had my breathing tests as I have one every 3 months.  My last one had a conclusion by the reader of the results that I had a moderate increase in fibrosis. When I went to the doctor he said mild. I said I read the report and it said moderate. He looked at the test and said he didn’t think it was quite moderate. I didn’t know how to question that. All I ever want are the real facts. There aren’t a lot of facts on this disease so I want the best treatment for me without, even slightly, changing any results.

[bdgaier]

I seem to be able to do less and less each day. I still clean, wash my clothes and do most of my grocery shopping. I  can take my time and take breaks. My biggest issue is all the appointments.  I do have people that take me to many appointments but I hate asking people so often. It’s gotten hard because parking seems to always be far away. Once inside I still have so far to go to see the doctor. I need someone to push me in a wheelchair another difficult thing to accept. I  become so breathless that I end up with a coughing fit that is taking longer to recover from. Quick question….why do those that try for a transplant get turned down? My doctor thinks I should try. I would have to lose weight and I have chronic kidney disease. I also have other issues that my doctor thinks aren’t a problem. Thanks for any information. Everyone take care. Sending prayers. ????

[bdgaier]

Don, try checking with the business where you had your rehab. The place I went to, you are welcomed to come back. I have to call ahead to see if there is room for me. I finished in  June and told them that I plan on coming back in late Fall.

[bdgaier]

This is an interesting discussion. I’m widowed so I don’t have my best friend to bounce my feelings off of. My son likes to hear what the Pulmonary doctor has to say. It’s nice but he tends to put a spin on my diagnosis. I think because he gets married in December of this year. He has said he wants me here which I understand as his dad died 5 years ago of Kidney cancer. I also have a friend of 50 years that stopped calling after she found out my diagnosis. When I did see her she would ask if I’m better. The third time she did this all I said was, I will only get worse. I have 3 close people that I confide in until I’m ready to talk about this terrible disease. I have posted info about this disease in My Story on Facebook. I hope family and friends can understand this new lifestyle better.

[bdgaier]

Charlene. I tore my tricept off my bone right before Christmas last year. I did go to therapy because I chose to not have surgery. I wasn’t sure how hard it would be on my lungs. The therapy wasn’t hard. I still had problems doing the exercises because I would get short of breath. I was using my oxygen and still dropped to to the 80’s. I was set at 2 but am now at 3 thinking I might need 4 when I’m  up and about. I am in light physical and breathing therapy, now. Every day seems to be different. Tuesday and today I had a hard time getting in 30 minutes of exercise. Last week I did great. My therapist even said she was surprised how well I did. She didn’t hear much crackling in my lungs so that makes a huge difference in what I can do. I didn’t tell her today that my chest was bothering me. She noticed at about 3 minutes that I  was struggling. I pushed to get my 30 minutes in. She then checked my lungs because of my breathing and coughing. Today the middle right lung was crackling a lot. She said she is going to suggest going to 4. I was put on oxygen in July 2021. That’s when I was officially told that I have PF. I haven’t been able to walk to my mailbox and back for over a year. With the oxygen I still run out of air just going from room to another. I assume oxygen is to keep my organs getting the oxygen they need. It doesn’t seem to help me to walk farther before running out of air. That’s when I feel I’m a nuisance. I hate that feeling. I have been the caretaker in our family. This disease is depressing. I love my flower gardens and I’m already worried about keeping them up. I don’t understand how some people can walk miles and aren’t on oxygen. I sometimes wonder why I was put on oxygen right away. I didn’t have time to do things I wanted done. Other days I’m okay. I have a few friends that don’t understand what we go through. One will ask me if I’m getting better yet. I have told her I won’t. Then, if I don’t go out in groups she says that I could if I wanted to. I guess I had more on my mind. Sorry for going on.

[bdgaier]

I hope my oxygen usage doesn’t go as high as many of yours. I’m only at 2 at night and 3 when I’m up and about. My nasal passage seems dry all the time. Then it hurts. Then I start feeling the cannula in my nose and then I feel like I could crawl out of my skin. I have a couple questions for you all. Why aren’t we supposed to use Vaseline in our nose?  How do I figure out how much space between the cannula nose prongs is correct?  Mine keeps falling out. I tighten it but the tightening slide has been loose on my last 2 leaving me to constantly push it tight.  After all the good hints I’m going to look for a mask to buy! I use Ayr saline nasal gel. I’m going to try a couple new ones from the notes I took from here. Thanks.

[bdgaier]

What is PF trauma? How or why do we need Palliative care?

I was diagnosed last June, officially. I was referred to a Pulmonary Doctor May of 2020 by my Family doctor. Because of Covid it was hard to get an appointment but I finally did April of 2021. I’m reading as much as I can about this disease. I have been on oxygen since July 2021. Seems like most people don’t go on it right away. I did see when it was prescribed that the duration was, life. I assumed that meant my PF was advanced. I asked but I  haven’t gotten an upfront answer. All this history is so you know why I’m asking what trauma is. I read something about getting palliative care lined up. My husband was in Hospice 4 yrs ago. I know I  can’t be told how long I have left but when I asked one of my doctors he asked what I meant. Is there a proper way to ask that type of question.  Thanks for any answers.

[bdgaier]

I agree with you 100%. I’ve been having tests every 3 months  for a little over a year. This time my tests were done by two physical therapists that previously worked with me. They had trouble keeping my numbers up and were checking on me a lot. One even called the Pulmonary department to tell them what was happening. I was given antibiotics that helped somewhat. They were the ones that put in a recommendation for a continuous concentrator. They talked about the pulsating ones and how much better I would take in oxygen with a steady flow. It seems odd that I wasn’t told that much earlier.

[bdgaier]

Hi Natalie.

I just had my breathing test and 6 min walk last week. I was at a 3 or 4 setting. I have tests every 3 months. This week I’m going to try continuous flow on my portable machine. I can be at 1 if I’m just sitting with my floor concentrator. At 3 or 4 when I’m cleaning, gardening, or doing things around the house. For some reason as soon as I  stand my oxygen drops and keeps dropping.  She would stop me at 80%. It does go into the 70’s lately. She tested me with no oxygen, then pulsating, and then steady flow. I was very hard to control with pulsating. This week I’m trying out a steady flow on my portable machine. I might have to use the smaller oxygen holders. I’ve been on oxygen since day 1 of my diagnosis. I am thankful for each day. I wish I could get answers from my doctors as to where I am in this disease. Good luck trying to get regulated.

[bdgaier]

I too, feel that I share too much with one of my sons. My husband died 5 years ago so he’s really been a help to me. He also goes to my Pulmonary doctor appointments. I feel like I  have to try to make my breathing seem normal around friends. It sounds silly but adjusting to this diagnosis is hard. I am on oxygen. My number drops to high 70’s to low 80’s when I have to stand and walk. I do go to physical therapy. My therapist keeps in touch with my doctors because she thinks my oxygen should be raised. Good luck with talking to your son. I think you have to when none of your friends understand this disease.

[bdgaier]

I have papers on tips from my physical therapist. I was doing many of the tips as I also have back issues.I was told to place most things at shoulder level. The reaching and bending takes more energy. I also have a Roomba and a light weight Shark for quick cleaning. I don’t wash walls anymore. I use a dust mop to get the ceiling and walls dusted. Doing that job takes several days. I can’t always finish a room in one day. I use a rolling cart for my clothes hamper. I can easily roll that to the laundry room, for now. I used to use Pinesol to clean my bathroom. Now many times I will use wipes or a spray. Much faster. It’s only me. I’m trying to keep going but I’m getting more and more breathless. My lungs are at 50%. I don’t know how fast that number goes down but I hope it is slowly.

[bdgaier]

My dad died from emphysema. He was at 25% lung capacity when he started failing fast. He was put on morphine at the end and he did not wake the last two days. I pray for that kind of ending for me. I was diagnosed after endless testing last July. In June they considered a PF diagnosis.  In July I was put on oxygen for activities.  I’m now on it 24/7. My physical therapist thinks it could be upped to 4.

Today was a bad day at therapy. I struggled to get my minute’s in. I knew it when I got up today. At night I woke a few times gasping for air. Last Thursday was a good day. I did my exercises with no problem. The therapist said she didn’t expect me to do that well. It’s frustrating not knowing from day to day how I’m going to feel. I’ve canceled plans because I know how hard it will be to go. I hope during the summer I have a lot of good days. I’m anxious to get out in my flower garden. Everyone take care. I pray for all of us.