January 23, 2020 at 2:43 pm #22692Colleen SteeleKeymaster
If you have been following the news than you are aware that the first case of the coronavirus in the US has been reported. I live in WA state where that person is being quarantined. It has made us even more nervous about what my son might be exposed to when he attends college every day.
I think most of us take precautions on a daily basis to protect ourselves, but with the threat of this new virus, are you doing anything different? Hopefully we won’t see more cases but if we do, my son might have to consider staying home and miss classes.
January 24, 2020 at 5:02 pm #22712Carol VolckmannParticipant
Colleen these viruses are really scary especially people whoes immune system is already compromised. We also call Washington our home. We lived in the Methow Valley where the population is so small we were not exposed as much as living in a major city.
We are now living in our motor home touring the country and for the first timr in over 3 years both have come down with terrible colds effecting our upper respiratory system. With my meds for PAH I have not had to use oxygen, but I sure need it now doing the smallest activity sets me off. I will be seeing my Pulmonologist at UCLA since we are in CA right now or if back in WA I would see my Pulmonologist there at UW.
I think you are right in considering pulling your son out of school until we know more.
Wishing you well.
January 27, 2020 at 6:24 pm #22734Carol VolckmannParticipant
To answer your 2nd question first – the challenges of receiving supplies and keeping up with medical appointments have been at times very challenging.
I have been getting my PAH meds and supplies through Accredo/Express Scripts. These include all my IV supplies for mixing. We found the most reliable was to have it sent overnight to a UPS Store with a “Hold for Carol Volckmann” with my cell number. The UPS store will ask for identification and charge a small fee for each package. We just have to know once a month where we will be. A Postal Annex will also work.
We do all our mixing ahead to cover 14 days so we don’t have to mix every 2 days.
From the very beginning I would ask the rep from Accredo if I would be able to place my orders with that one person. That has worked very well in 8 years I have had to deal with only 3 different people. The current person I deal with has been over 3 years. It makes it so much easier and you get to know each other and she has become a real advocate for me.
Doctor appointments are more difficult. We try and schedule them within the same week – get there and if we are lucky get back to our coach the same week. That does not always work as there may be more test etc. We just some how work around it.
As to your first question. Both of us are from the Northeast. Traveling across the country is beautiful. We try and stick to State Parks. The country is so diverse I would be hard pressed to say which I loved the most. Coming from the East Coast we thought we would have very strong pulls there, but it has become so crowded, roads so narrow – we founds ourselves longing to get back to the West. (We miss the lobster rolls and family).
We both love the mountains, love the ocean and find we also love the desert.
One of our disappointments is our National Parks. As breathtaking they are, they have become so over crowded you can hardly move and sad to say that some areas are trashed by people.
Suffice as to say we are going to keep traveling till ??? Won’t be forever and we will still have WA as home.
Be well be safe.
January 29, 2020 at 9:47 am #22767Brittany FosterKeymaster
@cdvol3gmail-com I think that it’s awesome that you stay as busy and active as you are! I would love to travel the way you do. And what better way to spend it than with someone that enjoys all of that with you and also looking our for your health. Even though I know that part must be hard too. Keep travelling for as long as you can! That is heartbreaking about the National Parks being overcrowded. My boyfriend and I just started doing some small hikes in the area and so far we really are loving it. Not sure if we are going to be able to go this weekend coming up because of Super Bowl weekend but I would love to be able to get out and get some fresh air and hopefully will be more recovered from my surgery by then.
January 29, 2020 at 5:33 pm #22794Colleen SteeleKeymaster
Wow, the arrangements that you have made so that you can enjoy traveling is fantastic! I’ve heard mixed reviews over the years about Accredo by my personal experience with them was always very good. We even had an Accredo nurse that attended a school meeting every September to help me discuss and explain my son’s medical needs to the staff. I’m so happy for you that your experience has been just as positive. Thank you for sharing. Someone might benefit from reading your experience.
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