DJ'S JOURNAL

A MEDICAL UPDATE PLUS!!!!

Almost two months have passed since we arrived back here in Texas, and unfortunately, not much has changed on the medical front. The weather hasn’t been very good, with cold temperatures and windy and rainy days, until about a week or so ago. The ground has been so saturated with rainwater that it “squishes” under your shoes. The rain also contributed to another leak in the back of the trailer that caused yet more damage to the carpet. Last, but my no means least, the truck was in the shop for a week for an oil leak and transmission service. Here are some highlights from my journal:

*Thursday, January 22: We traveled down to Almost Heaven RV Resort, south of downtown Houston, to check it out, as we may have to move there for our medical odyssey. It’s about 25 minutes south of the Nephrologist's office, so it’s definitely convenient. The road to get to the park is in need of some repairs. The park itself is definitely older, but many of the sites have newer concrete pads and/or patios, and about half of the sites are 50A. The management is very receptive to those RVers that need a place to park while undergoing medical procedures.

*Wednesday, January 28: The Neurologist was pleased with Ron’s strength and kept him on the 30mg of Prednisone every other day. He said that it’s just enough to keep the CIDP stable. He also agreed that the major concern is the kidney problem, so he definitely defers to the Nephrologist. We made a follow-up appointment for 3 months, not knowing if it will be kept or not.

*Tuesday, February 3: Here's what transpired at Ron's appointment with the Nephrologist:

1. The doctor was very pleased that over the last 4 months, Ron has been holding his own with his kidney function, according to the most recent blood tests. The doctor estimated that he has 25-30% function, which is about what it's been for the last couple of years. Actually, I think the Mayo had it down at 22% when we were there in June. He said that a transplant would not be done until the function is down to 15-20%.
2. Because we have the same blood type, I can definitely be his donor. Many medical improvements have been made that help in the compatibility factor. The doctor used a specific word to describe all this, but of course, it's totally escaped my brain right now. Anyway, this was a huge relief to us!!!
3. Ron doesn't have to see either of his doctors for 3 months!!! He will still get those monthly blood tests however. Now, we get figure out where we can go.......obviously someplace WARM!!!!

*Friday, February 6: Ron saw an Orthopedist about his joints, his knees and fingers in particular. The doctor also drained his left elbow. The elbow was full of uric acid crystals, the cause of his gout problem and a side effect of his kidney failure. It had been bothering him for months, and no doctor in a walk-in clinic or hospital would touch it, considering his medical history. The Orthopedist took x-rays of these joints and found them to be fine, so he referred Ron to Physical Therapy for 3 weeks. Ron wasn’t too thrilled about it, but he was willing to try. A follow-up appointment was scheduled, so our plans to leave for the Gulf Coast were postponed for another month, much to our disappointment.

*Saturday, February 7: After a week of off and on rain and thunderstorms, Ron discovered a major leak in the other back corner of the trailer. He pulled back the carpet, and the wood floor was black with water soaked into it. The space heater was then on all night long, and while the situation improved, the heater was on all the next day also. The carpet was still quite wet. With rain expected for the next few days, we knew that we were in for some more trouble. Ron checked the security light, the source of the “flood” on the other side, and it was OK. He caulked the corner up on the roof, hoping that would alleviate the problem.

*Monday, February 9: When I called for Ron’s physical therapy appointment, the receptionist took down all his info, including insurance, because she needed to confirm it all before his appointment. She also explained that there were separate therapists for knees and hands, meaning that Ron may have to go there 6 times a week. I made a “knees” appointment for the next day and a “hands” appointment for Thursday. Later, in another phone conversation, I was told that Cigna would let him see two therapists on the same day, but we would have to pay $25 co-pay for each of them. OK, that was $50 three times a week, or $150, for three weeks, or $450!!! Knowing that Ron really doesn’t want to do this, I was not a “happy camper”!!! I later called another PT facility, and they confirmed that this was a normal procedure.

We had the back corner of the trailer all dried out…..until more torrential downpours came again. The back corner was again flooded and soaked. Obviously, the leak wasn’t fixed!!!!

*Tuesday, February 10: Ron had his first physical therapy appointment, and they are willing to work with us so that we don’t have to double pay. They measured his knees and showed him some exercises that may help with his flexibility. The exercises were difficult for him and very uncomfortable.

*Thursday, February 12: For Ron’s second appointment, he saw the “hand” therapist, who poked and prodded and then wrapped his hands with heat. He also had some pool therapy for his knees, walking on a treadmill in the water. He seemed to be very happy with that, but I still got the feeling that he wasn’t really happy with all this PT stuff.

*Sunday, February 15: Ron was moving very, very slowly when he finally got up this morning. His right foot hurt, and his legs just ached from his session in the pool on Friday. Later, at our usual late brunch, he brought up the PT situation. He’d had it!!!! He was definitely not happy with his physical situation. I’ve not seen him feel worse, move slower, and complain of more pain and stiffness than before he started all this.

*Monday, February 16: I changed Ron’s Orthopedist appointment to tomorrow. His right foot was swollen a bit, a result of his high uric acid level. In my mind, I was questioning the fact that the Nephrologist didn’t seem to take any interest in all these gout side effects caused by the kidney failure. I kept remembering what he said at the last appointment, something to the effect that it’s better to keep your own kidneys as long as possible. But what if getting a new kidney will lower the uric acid level and, therefore, alleviate all the gout and uric acid in his joints. After all, the Nephrologist at the Mayo said that a transplant is the only way to reverse all of Ron’s ailments that are caused by the kidney failure.

The rain has finally gone, and the temperatures are finally getting up into the 60’s, with 70’s predicted for later in the week.

*Wednesday, February 18: The Orthopedist said that Ron’s joint complaints were not in his “department” because the x-rays indicated no damage to any of the them. The problems are in the Rheumatology department, so we got the names and phone numbers of four Rheumatologists, one with a particularly high recommendation. He also said that it’s hard to get an appointment with her, but Ron was determined to try.

*Thursday, February 19: I called the recommended Rheumatologist’s office first thing, and was I surprised at what the person on the other end said!!!! The earliest appointment available was in September!!!! That’s seven months away, and that purely doesn’t make any sense at all!!! We were both dumbfounded and declined to wait that long; afterall, there is pain involved here, too. I called the second one on the list, but she didn’t take Cigna insurance. I located the last two on my Street Atlas 2003 mapping program, both of whom are in the Cigna directory. Determining which one was closer, and just down the interstate, I called and made an appointment for next Thursday. Just like that!!! I’m still shaking my head about that highly recommended doctor!!!

Ron got up on his ladder to check out where the leak was coming from. On the advice of our neighbor back at TTN, he checked out a “channel” with a rubber strip in it that has screws under the rubber. It is located on the side of the trailer, but almost up to the roof. Turns out that there were extra unfilled holes up there!!! He filled them all plus he took screws out, put some caulking in, and screwed them back in. He said that nothing can be done about possible damage inside the wall, even at the factory, but we will definitely have to get the carpet replaced. (Although we had some thunderstorms and rain after this, we did not have any more “floods” in the trailer. So far, so good!!!)

*Thursday, February 26: Today turned out to be a long and tiring day, especially for Ron, leaving the trailer around 915A and returning just after 3P. The appointment with the Rheumatologist turned into somewhat of a marathon. After filling out all the paperwork, he answered even more questions with the nurse. Then before even seeing the doctor, he had a bone scan since he had been on Prednisone for so long. The doctor asked even more questions, some of which had already been answered. (Don’t they read the paperwork???) Anyway, the consensus was that the only alternative that Ron has is a series of four weekly injections into his knees to help give him a better range of motion. We opted to wait until after we come back from Rockport.

Ron also asked the doctor about Uricase, a new drug that’s still in trials. He was aware of it and knew that it wasn’t yet available. Online Ron has found some studies being done Boston, Phillie, and NYC. Why can’t they do those things down here in TX???

*Saturday, February 28: Ron wants to get the truck in for service down in Houston next week, so after researching rental cars, and not knowing how long the service will take, we opted to rent a vehicle for a week. We picked up a Dodge Dakota truck at Enterprise in Conroe and then took our truck down to Houston. That way they could get started on the service as soon as possible. There was an oil leak to fix, the transmission needed servicing, and a general 75K service needed to be done.

Again, we discussed Ron’s kidney situation at dinner, and we came to the conclusion that the Nephrologist isn’t aware of or hasn’t grasped that Ron has other medical side effects of his kidney condition. After all, he’s only seen Ron twice, and this last time, when we thought that we were going to start all the testing, he poo-pooed that saying that it is best to keep that kidney as long as possible. He was either forgetting or wasn’t aware that there were other side effects that could be corrected if Ron had a correctly functioning kidney. So we’re thinking of possibly moving up the appointment, maybe, but in any case, we are definitely bringing up all this other stuff.

*Tuesday, March 2: Ron had a very bad day today. He wasn’t moving very well when he first got up. He says that he was just sore. That all got complicated, when Cassie refused to get in the trailer after our walk. Yes, she absolutely refused!!! Ron finally had to lift her little by little until she came in. I’m sure that he hurt himself even more by doing that because he was very uncomfortable the rest of the day. I gave Cassie one of her leftover painkillers, and she was pretty much out for the day. When Ron took her out in the afternoon, she walked right up the steps, like nothing was ever wrong!!! Go figure!!! I guess that painkiller worked!!!

*Friday, March 5: Leaving the trailer at 5P, we finally picked up our truck after its servicing……some $2100 later!!!! By the time we got back, it was 8P, thanks to the Friday night Houston traffic!!!! These trucks are not cheap to maintain, but then again, neither is a diesel pusher motorhome, plus there’s a toad to maintain. We stopped at Flying J for fuel for our truck and gas for the rental truck, which we returned the next day.

*Saturday, March 6: Ron called Cigna about his imminent transplant, and they said that the procedure can be done whenever we feel that it’s necessary. Now he’s talking about trying to move up his appointment with the Nephrologist. He has said that he really feels that he’s getting gradually worse, but he did manage to vacuum out the truck yesterday, probably the most that he’s done in a while.

*Sunday, March 7: We left the Conroe area for the Gulf Coast, opting to overnight in Victoria and then go on to Rockport. After setting up, Ron was really tired from the 170-mile trip, so he rested a while and then took Cassie out. When I looked outside, he was actually “sitting-resting” on one of the utility boxes, which surprised me a bit. All this stuff is really taking a toll on him, to say the least.

That pretty much brings y’all up-to-date with us for now. We will be here in Rockport at Bay View Western Horizon Resort until March 22 and then maybe over to Port Aransas before heading back to Conroe. As yet, Ron hasn’t decided whether to move up his May 4 appointment with the Nephrologist.

More later...........