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Mitigating Risk as a Patient with Pulmonary Fibrosis
For the last few weeks, I have been toying with a difficult decision that is travel-related, and no matter what efforts I put forth, there are risks associated with travelling right now amid the pandemic. I’ve sat down and made a pro’s and con’s list while considering this decision (which is something I often do, as it helps gather my thoughts) and I know there are things I can do to reduce my risk of contracting COVID-19, but not eliminate it completely. While this is scary, and can be an argument for the ‘con’s’ of traveling next month, I also have a couple arguments that would fit into the ‘pro’ column:
- The pandemic is not likely to go away anytime soon, potentially years. My transplant team has said that even when a vaccine is found, it’s not going to eradicate the virus entirely. Instead, it will be similar to the flu vaccine which is developed every year to be as effective as possible but simply cannot be 100% accurate. That is just my medical team’s opinion of course, however, there are few others I’d trust more than them regarding pandemic-related information. Does this mean I hold-off traveling or doing things I enjoy, indefinitely?
- I have pulmonary fibrosis: will I ever fully mitigate the risks of having a life-threatening lung disease? I recently wrote about this in a column called, How Much Risk Can Pulmonary Fibrosis Patients Mitigate?
I want to truly live my life with IPF, not shy away from doing quality things with friends and family. That doesn’t mean taking unnecessary risks, but to me, it also doesn’t mean staying home and sheltering from the world either. Alas, my dilemma and trying to decide how to proceed continues….
What are some of the ways you mitigate risk as a patient living with IPF/PF?
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8 Replies
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I have just had this dilemma, well no not a dilemma because I had already decided I was going to live to the fullest possible within limits, what ever life I had left.
I have just been offered CellCept which after looking up the common side effects of which there are about 30, I have absolutely refused as it would wipe out completely my immune system and even vaccinations would not protect against flu and certainly not Covid 19, so even if not taking such poison does shorten my life at least I will be able to enjoy it and not be stuck at home to scared to go out because I would have to plan where the next loo was (already a problem because of the scleroderma) and being too scared to go shopping or meet people even masked/face shielded up.
I do live out in the sticks where the virus is not a all widespread so of course that makes decisions easier.
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Hi Susan,
Thanks for sharing! Yes, it can be such a difficult balance between doing the things we need to in order to manage our disease(s) (ie. sometimes taking a medication) vs. the quality of life it will give us if we don’t. Glad that decision came easy for you, and hope you continue to do as well as possible.
Sincerely,
Charlene. -
I wanted to respond to this thread about weighing risks and benefits during covid. My husband and I (both in our early 70’s) recently flew from Minneapolis to Baltimore. I had not seen our daughter and her family since Feb and I really couldn’t stand it any longer. I could tell I was getting really down, not smiling much, not caring what we did during the day, etc. I have never, ever had a problem with depression but this pandemic is challenging all of us! At the same time, I happened to read a column by a physician in the Atlantic magazine — he was answering a grandma who was desperate to see her grandkids in Baltimore too! I was thrilled to read his answer which basically was that it is as safe to fly right now as it ever can be. I then saw a video showing the cleaning and sanitation process on Delta airlines and we were so impressed, we booked our flights that night. Our trip was so easy, the plane impeccably clean, passengers seated as far apart as possible (no booking of the middle seat on Delta!!). Airports are basically empty so no waiting in a crowd for check-in or security. Oh, and they are boarding from the back of the plane, so no one is going by your seat, wrestling luggage over your head! All in all, a super easy flight both ways and BOY OH BOY, was it ever worth it to see our family and feel the love…in person instead of on a video call.
We also go out to dinner in our small city neighborhood. We eat outdoors at separated tables, but we’re not getting out a measuring tape to see if they are 6 ft — I’m thinking they probably are not but it’s so important to treat ourselves.
The bottom line is that we are trying to be as careful as possible, but we are also living our lives. We shop at the mall, at Target or Trader Joes, etc … everyone is wearing a mask, most people are considerate when they see our silver hair! We can’t shelter ourselves forever, or even for the next 6 months — it is simply unhealthy for our emotional and mental well-being!
Libby
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I know many do not agree with me okay, but I totally believe the America’s Frontline doctors group who tell of the hundreds of people that cure with three medications they give including people with comorbidities. Have you heard them? And there is another doctor in Dallas named dr. Bartlett who also has a cure call budesonide. These doctors are all board certified, and one, a woman, is a doctor and an attorney. I have seen them on other shows besides what they first came out with, which was quickly taken down by Google Facebook and Twitter. However in the few hours it was online 17 million people saw it. The next day after those groups took it offline the doctors reposted in ways that they could not take it down. Since then I’ve heard there another one or two that are finding cures and it’s quick. I know with the hydrochloroquine, zinc, and z-pack the doctors said and I’ve also seeing patients his made videos describing how quickly it healed them. Within four to five hours they’re almost well. I have already called my doctor and asked her if I were to contract covid-19, would she give me those medicines. She assured me she would. Some of the doctors also said taking it a couple of days a week was a preventative. I don’t know about that one but I trust that they would not lie because they have not lied that I know of and are very well qualified medical people who would not usually tell a lie. However, I did contact my doctor to ask if she would give me those, which is the same three meds I believe, or it may be just the Hydrochloriquine. I know most people have a hard time believing that we’re being lied to, but we are. Dr. Fauci in the beginning said we did not need to wear masks and later changed it. But the front line doctors were on Joni Table.Talk or it could have been the show she does with her husband, Marcus. The,shows are Christian shows if you arent familiar with them. I also saw them on a show other than that but I don’t know what the name of it was. In 2005 there was a coronavirus that was very similar, 78% the same as this one, and I’ve seen a report that Dr. Fauci at that time stated that mass would do no good. Then one of the doctors stated on one of the show’s I saw that the pores in the masks are from two hundred times to A Thousand Times larger than the virus, and therefore, that it would be like trying to keep an ad out of a backyard with a chain link fence. They have set up a website, the doctors,flds.com, which stands for Frontline doctors. You can go to that website if you’re having trouble getting your doctor to agree to give you the meds, and fill out a questionnaire about your health, and then the doctor will teleconference with you is my understanding and will recommend doctors in your state that will handle those. However there is a $90 fee for it. But they’re just trying to help because they know that the politics of it is trying to keep it from people. It’s horrible to know that people would do this but evidently, and I believe it, Bill Gates and doctors out to stand to make billions of dollars as well as do the drug companies if they get a vaccine. So I know some people don’t believe it but I do because I’ve also seen, like I said, the videos of people who have had the medication given to them to them when they thought they would be dead before morning, and they were almost well within four to five hours. So this may not be something that you want to check on, but I wanted to put it forward in case you do. When the doctors did put it back on line the next day I caught it and emailed it to myself and I still have it, the one where the doctors were telling of their cures. I’m really bad on computers and then knowing what to do but I may be able to email them to people if anybody wants it. I hope this helps and I hope you don’t think I’m a kook. I’m just stating what I’ve seen and heard and I believe it.
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@travelingnana
Hi Libby,
So nice to hear from you and glad you’re keeping as well as possible. I couldn’t agree with you more re: mitigating as much risk as possible but also living your life so our emotional and mental health isn’t compromised. I believe that is what makes our lives a quality one, and these things are so important. I’m so glad you got the opportunity to spend time with family in person, wonderful to hear. Keep enjoying these moments while taking the proper precautions, that is all we can do I suppose. Thank you for sharing, it has inspired me with the decision I referenced in this column. Keep in touch 🙂
Sincerely,
Charlene. -
@carolcarmack
Hi Carol,
Really interesting post here, thanks for sharing. I’ve not heard of these doctors or the trio of medications, but the purpose of this forum is to share information so thank you for taking the time to put it out there should others be interested in seeking more information about this topic. I know posting to the forums can be tedious sometimes, so I appreciate your efforts in sharing here. Thank you!
Charlene. -
If you search America’s Frontline Doctors Summit, it is online now.
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Thanks for circling back and letting us know, Carol. I hope you’re having a nice weekend!
Sincerely,
Charlene.
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