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janis gorsline and Joseph Collins are now friends 1 year ago
janis gorsline and Jim Dawson are now friends 1 year, 9 months ago
janis gorsline posted an update 2 years, 6 months ago

I have 2 hepa filter machines in my apartment to clean the air. I decided to turn off both of them and see if they do make a difference. In a matter of minutes I knew they DID make a difference. I started to cough which I have not done in a long time. I turned them back on and believe it or not I was not coughing. Hope this helps anyone who…[Read more]
- Mark Koziol replied 2 years, 6 months ago
  
  Hello Janis, I conquer with you on the importance of an air filter. When mine is off I can tell the difference too. Thank you for sharing. Mark
janis gorsline posted an update 2 years, 6 months ago

I want to apologize to everyone that in my last post I said I wouldn’t be back. I realized I need the forum for advice and anything pertaining to IPF.
I hope everyone of my friends forgive me. I really am a good person. Thanks.
- Mark Koziol replied 2 years, 6 months ago
  
  Hello Janis, we are glad to have you back. I always thought you were a great contributor to the forum. There is also no need to apologize. I don’t believe you wrote anything hurtful and I know you are a good person. Thanks for engaging in our forum and welcome back Janis!
  - janis gorsline replied 2 years, 6 months ago
    
    Thanks so much for your kind words. I am glad to be back. Oh, by the way, I am a good person…..lol
    - Mark Koziol replied 2 years, 6 months ago
      
      Yes you are Janis, and you are most welcome.
janis gorsline and Steve Dragoo are now friends 2 years, 8 months ago
janis gorsline posted an update 2 years, 11 months ago

I am doing really good but this is my last message. In my apartment I have two hepa-filters and two salt lamps that keep my apartment dust-free, cleaning the air 24/7.
Also with IPF you should sleep through the night. This helps your immune system. I am not sleeping great at night so I am going to my drugist today to ask his opinion on what…[Read more]
- Mark Koziol replied 2 years, 11 months ago
  
  Thank you Janis!
Kristin replied to the topic Oxygen Questions in the forum Diagnosis Information and General Questions 2 years, 11 months ago

Hello Judi:

You are I are living the exact same lives, and it would be wonderful to compare notes. My mom recently went through a ‘flare’ and is still having issues.

Would it be possible to chat with you on the phone? I’ll send you a friend request, if you accept, I’ll send along my phone number…

Kristin
Kristin replied to the topic Oxygen Questions in the forum Diagnosis Information and General Questions 2 years, 11 months ago

Robert,

Thanks for the reply.

Live in MetroWest, corner of 495 and the Pike. If you’re ever in the area, please lmk!

Beth Israel is a great hospital. Went there for a cardiac MRI – their tech is amazing, and doc’s spoke TO me, not DOWN to me.

MGH is a huge disappointment. My mom’s pcp prescribed nitrofurantoin, which almost killed her, an…[Read more]
Kristin replied to the topic Oxygen Questions in the forum Diagnosis Information and General Questions 2 years, 11 months ago

Thank you both!

Lots of information… Bill, #6 – that is a huge concern of mine… if the power goes out, and I just purchased a backup generator that should cover mom’s two concentrators. As it stands, her poc goes to 6 pulse, and that’s just not enough. She has no tanks available.

Looking for a support group in Massachusetts on the…[Read more]
Kristin replied to the topic Oxygen Questions in the forum Diagnosis Information and General Questions 2 years, 11 months ago

Hello everyone!

A few more oxygen questions for you all, as our pulmonologist is just dreadful. Never responds to any of my questions! And he practices at the second best hospital in the country (?) Just dreadful!

Nasal cannulas… I’ve been reading that basic nasal cannulas aren’t meant for a flow rate above 5 or 6 lpm (?) Then what are yo…[Read more]
Kristin replied to the topic Metformin (?) Status Update in the forum Diagnosis Information and General Questions 3 years ago

Thanks, Charlene.

Caring for a 93 year old, I simply don’t have time to search through every thread.

And thanks for the response. The reason why I ask about Metformin, is because my mom was prescribed Nitrofurantoin in December of 2016, and I’m sure you know what happened. She was in MGH for 5 days with pneumonia. I was livid. Now, I try to…[Read more]
Kristin replied to the topic Metformin (?) Status Update in the forum Diagnosis Information and General Questions 3 years ago

Hi Jaime – thank you for responding. Mom is on a low dose, only 250mg. It seems that she has good days, and bad days with her fibrosis. It’s like some days she requires more oxygen, and some days not so much. Wondering if anyone else has had this happen? I would definitely say that your IPF has been very good to you. 🙂 Again, thanks…[Read more]
Kristin replied to the topic Metformin (?) Status Update in the forum Diagnosis Information and General Questions 3 years ago

Thanks, Ken. I’ve been reading about studies online stating that Metformin somehow lessens/reverses ILD. While I’m very skeptical based upon all the reading I’ve done that this disease is irreversible, it was giving me some home to cling to.

Virginia: I haven’t been able to discuss the validity of any of these studies with my mom’s p…[Read more]
janis gorsline and Richard J Shank are now friends 3 years ago
janis gorsline and Wendy Dirks are now friends 3 years ago
janis gorsline and Liz Miller are now friends 3 years ago
janis gorsline and Terry Moriarty are now friends 3 years ago
janis gorsline posted an update 3 years ago

I was on OFEV 150 mg X2 every day and lately I am finding it is making me feel like I have the flu. I let my Doctor know and I am waiting to see if I can go on a lower dose. 100 mgX2.
- Mark Koziol replied 3 years ago
  
  Hello Janis, the symptom of nausea is prob what you are feeling. I know I would get that periodically and also chills but no fever. Hope you and your doctor can rectify this situation. Take care, Mark
Kristin started the topic Metformin (?) Status Update in the forum Diagnosis Information and General Questions 3 years ago

Hello everyone. I hope you are all well, and in good spirits. This is a trying time for all of us with Covid-19. I am now working from home full-time, and grocery shopping at Walmart at 10 pm om Friday evening each week. Mom and I are going for coffee, and enjoying it in the germ-free confines of my car. As you know, mom is 93 years old, with…[Read more]
Kristin posted an update 3 years ago

Things are ongoing here in Boston. We now have covid-19 in the area. Just when we were emerging from cold and flu season. I’m working from home, so as not to potentially contract covid-19 and spread it to mom. Life just keeps getting us both down…
- Mark Koziol replied 3 years ago
  
  Hello Kristin, thanks for the update. It’s very sad what is going on in the world right now. Stay positive and proactive. Best wishes, Mark.
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