I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: tigtink on May 21, 2020, 05:36:47 PM

Title: Wondering how this is all going to play out
Post by: tigtink on May 21, 2020, 05:36:47 PM
This board has been so quiet lately. Just curious to hear what other transplant patients feel when they look ahead with this virus outbreak. I am staying home except for monthly visits to the pharmacy and lab. Fortunately my labs are only monthly now and so far--more than eight months out--they have been great. This month my creatinine was .84 and my hemoglobin was a whopping 12.8 without Procrit. I just see so much uncertainly looking forward. Hopefully they will have a vaccine within the next year or so, but there is no guarantee when or even if that will happen. We have had over 53,000 cases here in Michigan, with a death toll approaching 5,200. That's the third highest death toll and the highest mortality rate in the nation. I am concerned now that restrictions are easing up, people will stop using masks and observing social distancing. Many are defying our Governor's orders even now. We may be fine for a while, but what happens in the fall if it comes back with a vengeance along with a bad flu season? To date, I have received very little guidance from my transplant center. I think they are trying hard to understand the risks and how to minimize them. So how do I make these decisions going forward? Will it be okay to get a haircut or go to the dentist? I live alone, is is safe for me to see friends if they have tested negative, assuming there are enough tests for everyone to be tested? How reliable are these tests? Will I ever be safe going back to the YMCA and the pool? Will airline travel ever be safe for me until there is a vaccine? So many uncertainties and so few answers at this point. Are some of you struggling with these issues? How are you coping with the anxiety?
Title: Re: Wondering how this is all going to play out
Post by: Simon Dog on May 21, 2020, 06:01:15 PM
I try to take my inspiration from this guy:
Title: Re: Wondering how this is all going to play out
Post by: iolaire on May 22, 2020, 05:43:45 AM
I'm starting to look towards my three year transplant anniversary on July 13th. I'm very happy to have a job, and one that allows me to work from home.  My wife is doing most of the shopping, I've been in stores four times since March 9th. Only one store that week of March 9th was very busy, all the other trips were off hours.  We have visited with friends outdoors, with separation about five times, which has been nice, both in our patio and at another house with a firepit and more space.  It was nice to see friends within talking distance. 

There is big debate on our neighborhood boards about if each condo association will open the pools. I think consensus is the chlorine will kill the virus.  The main barrier, beyond state rules, is the lack of the ability to import foreign summer labor and the liability to everyone if there was an outbreak linked to an association.  My worry with the pools is crowding, an off time with lots of space might be ok.

I skipped my labs and a nephrologist check-in in April because he was not responding/sending orders, so this month I contacted the transplant center were he also works and they ordered the labs and I got them done yesterday.  I figured the nephrologist would be very busy at the hospital with all the Covid related kidney damage.  But I'm still looking forward to seeing my tac level, I've lots 10 lbs eating at home and I don't know how that will affect things.

Luckily with this risk I do think each of us personally can do a lot to protect ourselves with the masks, staying in, and washing hands etc... Other people may delay the true back to "normal", i.e. going out with much lower risk, but we can keep ourselves safe.

So in summary I'm not stressing about things, but I completely understand your anxiety.  No major recommendations other then stay away from the crazies and keep yourself safe by your own personal protective actives.
Title: Re: Wondering how this is all going to play out
Post by: Cupcake on May 22, 2020, 06:15:07 AM
Tigtink-Great transplant numbers. I had a transplant 19 months ago. I am very worried about catching COVID and feel like a little gopher; I stay at home, plotting my forays and pop out and pop back home. I'm disgusted by the ignorance and lack of leadership of some of our elected officials. What depresses me is the thought that maybe these vaccines in development won't be indicated for transplant patients-there was discussion earlier on this forum that the vaccine was going to be live; does anyone know if that is the case? That thought is very dismal.

Airplane travel-nope, not anytime soon. Gym-not for me, even though I miss it terribly. Wish I could see the dentist for a cleaning but gonna avoid that for now. Movie theaters, crowded restaurants, wakes, weddings and fancy balls-no way! I have had all my doctor appointments via telemedicine and recognize their limitations.  I am looking forward to swimming in outdoor pools and dining out of doors as much as possible. I try to avoid public restrooms and this lovely new kidney Little Susie makes me pee about every 2 hours, so I will have to plan accordingly. I have mastered zoom but don't enjoy it as too many moving parts/talking people/ background noises.

I just finished a biography of Winston Churchill called The Splendid and the Vile by Erik Larson-it was very good-and the Winston quote I keep hearing is "when you are going through hell, just keep going." I think that is always good advice. Hang in there, everyone.
Title: Re: Wondering how this is all going to play out
Post by: justagirl2325 on May 22, 2020, 08:29:11 AM
My husband (Kidney 2017, Pancreas 2018) is somewhere in the middle.  He's been working construction either alone or with his son and is not afraid to go into stores (although here that's pretty much limited to the grocery store and Home Depot).  He's been staying away from his daughter as she's  nurse. He washes hands a lot but will not wear a mask.  His attitude really hasn't changed that much as he's lived with the "you're going to die any day" mantra since he was diagnosed T1 diabetic.  He outlived his sister (who was always really worried for him she died unexpectedly at 59).  Our local city has had 1 death and currently only 3 active cases.
Title: Re: Wondering how this is all going to play out
Post by: MooseMom on May 22, 2020, 08:51:09 AM
Gosh, I had a long response written out that got eaten when I tried to post it.  Probably just as well; you know how wordy I can get.  I don't have the time to recreate it all right now, but I had included this link to a FB Q&A sponsored by the National Kidney Foundation.  If you are on Facebook, check it out.  I found it to be informative and reassuring.