Noah Greenspan

Hello Wendy, thank you for suggesting the quinine to alleviate the cramping. I sometimes cramp in my legs. I drink more water, and days where this effects me I know I haven’t had enough water. Maybe I will try the tonic water. Thank you, Mark.

Hello Susan, thank you for the update. I’m glad your appointment was a successful encounter with your specialist. We must always advocate for our healthcare. It’s our body and we know what is best for our bodies. I support your strong will. The damp weather also negatively effects me, even after my transplant. Take care, mark.

So agree with you Regina! I’m glad you got the vaccine, especially if you are going to be in and amongst the hospital. I shutter at the amount of germs circulating that environment right now. I hope you have a smooth biopsy procedure and please wear a mask in hospital for every added protection you can.

I’m so sorry to hear of the loss of your…[Read more]

Completely agree with you Suzanne! Thanks for writing. I ended up with influenza A in early December and as a result of that (combined with other things) my disease progression increased and my lungs took a major hit. While I don’t ever want to scare anyone, I do believe it is so important to be proactive in avoiding the flu whenever we can. I…[Read more]

@dreamer101

Hello there,

Thanks for writing and sharing with us a bit of your Mom’s experience. Though so sorry you both are having to deal with this cruel disease as a patient and caregiver duo. The side effects of both anti-fibrotic medications can be very difficult to manage, lots of GI-related issues unfortunately. Did her doctor agree to…[Read more]

I sure agree with you @mayid46 (Luis). The day they find a cure will be one to celebrate for sure! Keeping hope is important 🙂

Hi Jill,

Thanks for sharing your thoughts on this topic. I didn’t know Australia had laws/policies in place for the flu shot, good idea. I think many people here get them as well, especially those compromised and Canadian healthcare picks up the bill for it to entice more people to get it. The effectiveness of it is certainly a popular discussion…[Read more]

@warlock,

Hi Bill,

Thanks so much for writing about this topic, and I certainly agree with you! My Mom is a Pharmacist and she often takes a lot of crap from people about their beliefs in the flu shot. While it is a personal belief for some, sure, I don’t understand (like you) why it continues to be a huge conversation. Better to have it onboard…[Read more]

Hello John Styles, I was diagnosed with achalasia. Which is rare and is the opposite of GERD. Instead of letting food and acid come back up, the esophagus muscles won’t let the food go down it’s regular path. Many ipf and pf patients suffer with esophageal motility problems. I like it that you aware what’s causing you problems. Nothing shoul…[Read more]

Hi Thom,

Yes, it certainly can be hard to understand any genetic/familial links when families do tend to drift. Sorry to hear you suspect there may be that link for you. I’m still trying to understand where any type of ILD fits into my family too. So hard when we just don’t have answers, but you’re right, the only thing we can do is take care of…[Read more]

Hello John, thank you for sharing your expertise. I find your comments informative as I’m sure our forum members will as well. Your suggestions are helpful. Take care, mark.

Hello John, your mother sounds like an amazing woman. She probably suffered in silence as mothers do. I’m sorry your mom had to endure this disease. Take care, mark.

Hi Nan,

I am so happy to hear that your employer is accommodating of your needs for modified work. This is so important, and many agencies don’t do this with a willingness to help their employee. Glad you can still be in the office and contributing to a sense of accomplishment, though I know the role is different than before. Thanks for…[Read more]

@bmiller2653

Hi Bob,

Thanks so much for writing regarding oxygen needs during high heat/humidity. You aren’t ‘stealing’ the thread at all, I’m glad you wrote as this is a really good topic. I think it is just a prime example of how different this disease is for each of us, as I was in Hawaii in October (temperature was around 38-40 Celsius so…[Read more]

Hi Colleen,

So nice to hear from you, thanks so much for writing and sharing a bit of your experience with Esbriet with us! I’d never heard of patients getting the choice between Ofev or Esbriet – has anyone else had this/ is it common? Just the other day I was on a call with someone who asked me this same question, about how doctors choose one…[Read more]