July 27, 2020 at 5:35 pm #15355Jenny LivingstonKeymaster
In the beginning of this pandemic, I took quarantine very seriously and took all the recommended precautions. I stayed home, didn’t see anyone outside my household or let others inside my home, sent an extended family member grocery shopping for me, sanitized groceries and mail/packages before bringing them inside – the whole shebang! Also, since my partner is an essential worker and continued to work outside the home, we were being very careful about our interactions. We weren’t kissing or sleeping in the same bed. We even debated having him temporarily live in our camping trailer in the backyard.
As time has gone on, we are still taking things very seriously, but the activities I’m willing to participate in have changed. At some point, I started seeing some of my extended family in town. My partner and I once again share a bed. I’ve done my own grocery shopping several times now. Over the weekend, my daughter and I had a tiny overnight get-away and, today, we even went to the zoo! (Our zoo has special hours set aside for the elderly and high-risk. I was so pleased with the level of precautions that were implemented.)
My question is this: how much “risk” are you taking? What level of social distancing are you practicing? Are you still quarantined or are you going out into the world? What is your comfort level with activities outside the home?
July 28, 2020 at 9:00 am #15358
Hi Jenny! Hate to start my first post here on such a sour note, but do be careful please! I’ve actually gone the opposite route you have. I largely ignored the fear and paranoia.. I’ve left CF behind so to speak (double lung tx) and now another illness was going to isolate me again? nope.. I wasn’t reckless, but I went out, saw family, friends, etc, as much as one could while everything was closed..
Now to the sour part..
Ok I’m pretty isolated again.. It brings back memories. CF can be/is a very isolating disease. At least now most people are somewhat isolated so the pain is spread so to speak. I’ve really never spoken to anyone with CF (save my first girl friend long ago who passed, and we never spoke about CF, which was odd wasn’t it/). I guess like a lot of people I tried obsessively to pretend I didn’t have it, and I guess she did too. 3 things changed me for me after all this time:
1) Now that I’m home all the time I’ve spent more time on online and came across Claire Wineland who I had never heard of until last week.. soul crushing, but encouraged me to be more active in CF..
ok the really sour part..
2) My transplant dr at columbia/nyp, has told me 33% of his transplant patients who got covid have died from it..
3) someone I know recently died of covid. She had CF, and her husband without any symptoms, gave it to her.
So, be very careful please.. Seems like a vaccine might just be around the corner, so keep those lungs healthy in the mean time!
July 28, 2020 at 4:24 pm #15363Jenny LivingstonKeymaster
Glenn, you truly have no need to apologize for your thoughts! Thank you for your response here. A few things:
1) Wasn’t Claire amazing? I’d followed her online for years before her death and still occasionally catch updates from her mother.
2) I am truly sorry to hear of the passing of your friend. I’ve heard of similar stories where a loved one was the person who infected another, and I can’t imagine the pain that person is left with.
3) I appreciate your concern, truly. The steps we’re taking to re-enter society so to speak have been gradual and with much consideration. We in a pretty remote are of central Utah where cases have been very few and far between (although, as is the case with most Western states, Utah is seeing an increase in numbers). I am completely willing to re-evaluate and change our plan and level of activity as things continue to progress.
I’m glad to hear that you’re doing well. I’d love to know how many years post-transplant you are!
July 29, 2020 at 12:46 pm #15373
Jenny, I’m glad you are in a place with less virus! Hoping it stays that way, and you and your family stay safe and healthy! I’m sure you know what’s best for yourself, but still, be careful 🙂
Yes Claire was hard not to like.. I had wondered why they don’t give blood thinners as a prophylactic after transplant surgery since I think blood clots are not uncommon. Have to ask my dr that question next time.. Like Claire, I also had blood clots after surgery, but oddly enough they all settled near my biceps. I guess they felt I was sorely lacking in that area.
Definitely need sour and sweet to survive! I’ve really enjoyed reading your articles here. They are witty and insightful.
I’m close to 13 years post transplant. I’ve had a few infections in those 13 years but I can count them on one hand. I don’t cough, my lungs feel clear, I have energy most of the time, and I can sleep laying flat! I have diabetes, which started immediately after transplant, but it’s really nothing. Overall it’s pretty unbelievable. I’m lucky as hell. If you’re considering it or have questions feel free to ask me anything!
July 31, 2020 at 12:33 pm #15383
I can’t seem to reply directly to you Bailey. Clicking on “reply” sometimes works and sometimes doesn’t for whatever reason.. To answer your question, my kidney function is a bit worse than normal due to the transplant meds, but I still feel pretty well, so I take no notice of it. That’s pretty much it.. I take insulin/creon, but otherwise my pancreas has never really given me any problems/pain,etc..
I read from your articles that your CF is atypical, and actually called PCD. I had never heard of it before. Maybe I’m wrong, but I don’t think CF clinics, which I no longer go to, are really equipped to handle all the related issues that can come along with CF, let alone atypical CF.. You must be playing quite a bit of specialist ping pong, which is the worst kind of ping pong!
August 3, 2020 at 8:27 am #15391
“Hey Glenn! I am so sorry that I’m glitching on your end for some reason. Jenny and I have been texting about this, and I am for her sometimes too… So we will get to the bottom of it, promise!
Yes, I have atypical CF. I was once diagnosed as PCD, but that we before I went to a CF clinic. Since then, they actually shifted it to CF (or CFTRD)- so now I’m classified more classically, haha. I am super lucky that my current CF clinic is amazing and seems to have a lot of patients who fall at ends of the spectrum…. Thank goodness! In terms of actual symptoms and bugs, I’m really pretty “typical”. I get culture the usual CF type of stuff. But, for me, my digestive system is impacted much much more than my lungs. What about you? Has it mostly been lungs throughout the years?”
No worries Bailey.
CFTRD was new to me.. I did read that you had a lot of trouble with your digestive system. None of the new modulators help with that I suppose? It sucks when your options are limited to surgeries, but if they actually help then obviously it’s worth it. Glad to see you are happy with your CF clinic. That can make a world of difference. I guess I had typical CF in that it was primarily lungs for me with a side of pancreatic insufficiency, though I have no right to complain about my pancreas as all it did was refuse to work. It never caused pain and I never really had any serious digestive issues. As time went on and I got closer to transplant I had a lot more issues as my lungs turned to mush – multi organ failure and a massively enlarged heart that attacked me several times. It all healed after transplant which was amazing…
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