We sold everything, hit the road and felt confident that we had all of our ducks in a row and that we were prepared for anything. One year later, our confidence was tested when Haley once again had severe complications.
We were camping at the Valley of Fire State Park, in Nevada, with no cell service, and felt disconnected from her doctors and in unfamiliar territory. She had been doing well for so long. Now, what to do?
I drove out of the park multiple times a day, checked messages and communicated with Haley’s doctor back in California through the online patient portal. Concerned, the doctor advised us to get on the next flight out and admit her to her home hospital in San Diego.
As RVers, we don’t move quickly. We are like turtles, with our house on our back, and, in general, we can’t (and don’t) move down the road fast. Slow and steady wins the race for us, but, in this case, time was of the essence.
Luckily, we were near the major international hub of Las Vegas and able to schedule a flight out the next day for a reasonable price and considerably cheaper than paying for gas for the almost 800-mile round-trip with the RV.
I called ahead, and the doctor preplanned to have a room ready for us. We had family waiting to pick us up from the airport, take us to hospital, and we walked right into her room on the fourth floor.
She was admitted immediately and could receive the care she needed right away because her chart and history were waiting for us, along with the doctor’s orders and her specialists.
I’ve been fulltime for close to 3-1/2 years; two years ago my wife was diagnosed with metastatic breast cancer and a year ago I was diagnosed with multiple myeloma. My wife lost her battle with cancer in May and I’m still receiving cancer treatment, but with a good prognosis. Being fulltime allowed us to locate ourselves near the Mayo Clinic for treatment and our coach is a right-sized home for ease of living. Although distant ongoing travel is on hold for a while I’m still able to get in some short get-away trips. There will be challenges going forward but I’m still inspired to keep that dream alive. As Joseph Campbell said: “We must let go of the life we have planned, so as to accept the one that is waiting for us.”
We have been full timing since 2007. In 2001 I was diagnosed with multiple sclerosis and was born with an immune deficiency along with a few other comorbidities that I have to manage. My MS plateaued about 10 years ago. My immune system crashes periodically but I have been able to get by infusing SCIG. I have been infusing SCIG (Hizentra) every week. So far so good. We are using the physicians in Reno. I was referred to an immunologist and a nasologist in Reno.
Because coronavirus represents a risk to those of us who have an immune deficiency we avoid places like Las Vegas. Just too many people flying in from every corner of the globe.
AS with most CVID patients, I had a problem with chronic sinusitis but met an ENT in Reno who specializes in treating CVID patients. I have been antibiotic free for 9 months now and have been able to worry less about my MS. From what I can gather Haley has to manage something akin to an immune deficiency. Let her know that we live in a 29′ 1976 Airstream. It is tight but we try to spend as much time as we can outside.
The IG distributor I have been working with have allowed us to wander aimlessly around the US and Canada and we have traveled to Europe several times. In 2016 we took 5 months to drive to and from Kenai, AK. We just go slow and build in time for me to find a place to infuse and take advantage of the wilderness around us.