DJ'S JOURNAL
A VISIT TO THE MAYO CLINIC
Arriving three days early in Rochester, MN at Autumnwoods RV Park was truly the best thing that we could have done!!! We managed to get acquainted a bit with the area, finding the Super Wal-Mart and Sam’s Club, and we also managed to get some rest and relaxation. Little did we know how exhausting the following week was going to be for both of us!!!
On Day 1, Monday, June 23, we awoke very early because the shuttle to the Mayo was picking us up at 655A. Ron’s appointment with Dr. McCarthy, the Nephrologist, wasn’t until 815A, but we had no clue where we were going once we got there. We were dropped off at one of the central buildings, the Gonda Building, and with our map of the “campus”, we figured out where we needed to go. The most efficient way to get around is the “subway” system of walkways between the numerous buildings that house all the departments, offices, and labs. Then, of course, the elevators take over from there. The buildings themselves are totally awesome…..shiny marble walls and floors, huge atrium sitting areas, and priceless artwork of every description displayed in the halls!!!!
When Ron was called for his appointment with Dr. McCarthy, I was told to wait until the doctor finished with his initial questions and examination. After almost an hour, I joined them to discuss all of the tests and referrals to other specialists, and the appointments were made. All of this information and Ron’s medical information was entered into the Mayo’s master computers, so that any doctor could access it as needed. He was given an “appointment schedule” detailing where he was to go for every specific test or appointment, including the time and building with floor and room number plus detailed special instructions on what to do or not to do before any test. In the next few hours, he “donated” about 12 vials of blood, peed in a cup, picked up the bottle for a 24 urine test plus had an electrocardiogram and a chest x-ray. All this happened before lunch!!!!
One appointment, a consultation with a Hematologist, could only be scheduled in the second week in July, which was way too far down the line. We were told that there was a possibility of getting in sooner if we sat in the reception room to wait for a cancellation. So, after lunch, that’s exactly what we did…….for a couple of hours at least!!!! But by this time, we were both very tired, so we asked the desk receptionist about what we should do. Her answer was to come back by 730A the following morning, meaning another very early and long day.
Very loud overnight thunderstorms didn’t help matters, but again, we were on the 655A shuttle on Tuesday morning, Day 2. Our diligence paid off with the "try and squeeze in (meaning sit and wait for a cancellation or no-show)" when Ron was called in to see Dr. Letendre, a Hematologist, around 915A. He spent an hour asking Ron some of the same questions about his conditions plus he gave him a physical exam. Unfortunately, some of the critical blood tests had not been completed, so a follow-up appointment was scheduled for the next afternoon. With a kidney ultrasound still to be done later in the afternoon, Ron couldn’t eat lunch, so a visit to the Mayo Store was next on the agenda. But, not wanting to make this day another long day, we decided to check in early for the ultrasound, and believe it or not, they called him in shortly afterward. After lunching again in the cafeteria, Ron now only needed to finish the 24 hour urine test, that bottle that he’d been carrying around in a bag. One of those huge atriums invited us to “sit a spell”; Ron read a book, and I did some needlework. A couple of hours later, that bottle was delivered to the proper place, and we were on our way back to the trailer.
More overnight thunderstorms didn’t help with getting a good night’s sleep in preparation for Day 3. But, then again, we didn’t have to catch the shuttle until 9A. On this day, Ron had a Renal Function Test that took 2 hours, and not only, was he able to watch TV, but I could be in there with him. After peeing in a big cup at 2 intervals, plus "donating" blood twice, he was done with yet another test.
After a Chinese fast food lunch, next stop on the schedule was a Neurology Consultation that turned into a marathon!!!! We arrived early, were called in on time, and then probably waited probably 45 minutes for a consult with a resident. Then, she had to go discuss everything with another doctor, and we were left hanging for probably another 45 minutes. This was getting old!!!! They both finally came back, with yet another resident, and repeated much of what the first resident did!!! What for, I'm not sure!!!! Anyway, the doctor confirmed the CIDP diagnosis of Ron’s Neurologist in Texas, but he made some alternative drug recommendations.
Our last stop for Day 3 was with the Hematologist, whom we saw yesterday,for blood test results, specifically about monoclonal protein in his blood. There was none detected, which is a VERY good thing!!!! Please don't ask me exactly what this was; let's just be thankful that none was detected.
A much cooler and windy Day 4 turned out to be a short day compared to the first three, with only a 930A return appointment with the Nephrologist. We spent an hour with him discussing the test results and what to do with the information. Bottom line, Ron has 22% renal function. Transplants are not considered until that level falls below 20%, so that will be a while off. The biggest concern is to control the pain and discomfort of the CIDP and gout, which has reappeared in the last couple of months. So, concurring with the Neurologist, the Nephrologist recommended CellCept, which will also help the kidney function. This cannot be prescribed at the Mayo because the drug needs to be monitored, so we will return to Texas for visits with the doctors there. Before heading back to the trailer, we moved up the scheduled Rheumatology Consultation to the next day at 830A.
Boarding the shuttle at 8A for Day 5, the appointment with the Rheumatologist would the last one of our visit to the Mayo. The Rheumatologist gave us a little hope, regarding the gout, with a new drug that is being developed. We will know more about that later. The problem here is that Ron's kidney situation prevents or interferes with normal treatment for the CIDP and/or the gout. Never mind, he is allergic to the most prescribed drug for gout.
After five very exhausting days at the Mayo Clinic, we were definitely ready to head on down the road!!!! We are thankful for the extensive explanation of many aspects of these three medical situations, which is much more than we ever got from the HMO doctors. The bottom line, though, is that there is no solution here because nothing can be "fixed"; we have to learn to live with the situation as best we can. So.......we are getting on with our RVing life!!!!
We left Rochester on Saturday, June 28, heading to the Travel Supreme factory south of Elkhart, IN, taking two days to get to White Oaks on the Lake Western Horizon park, just north of Indianapolis. I tried to get us in over the 4th of July weekend, but because I called so late, they were full for the holiday. So, we’ll just head up to the factory, which is just about 100 miles north. Once our visit at the factory is complete, we will be heading directly to Texas, probably stopping at a Thousand Trails park south of Nashville for a few days to rest.
One other thing, Ron got a call on Monday, June 30, totally out of the blue, from his Neurologist in Texas. He hadn't gotten the reports from the Mayo yet, so he was asking about our visit. He knows of the drug, CellCept, too, and he will probably be the one administering it. That's a good thing!!!!
On the other hand, Ron is getting sort of depressed about this whole situation, as, I must say, I am, too. He did read in our insurance book that Honeywell, his former employer, has the final say about any health insurance issue. He's threatening to contact them about this "below 20% kidney function" rule because of his special circumstances. I don't know when he's planning on making that call……in the next few days or when we get back to Texas!!!
That’s my report on our visit to the Mayo Clinic!!!! We were totally amazed at the size of the facilities, the speed at which everything was accomplished, the friendliness and helpfulness of the staff and doctors……………just everything!!!! Our only regret is that we did not have the time to take the tour of the facilities at 10A because we had appointments every day at that time!!!!
