DJ'S JOURNAL

PROGRESS....SLOWLY, BUT SURELY!!!

Finally, we're making some progress.....slowly, but surely!!! Here are the exerpts from my Journal about that progress:

*Wednesday, June 16: Today, we left right at 5A, and the rain was very light. But as soon as we got on the interstate, the downpour began, all the way through Conroe and into The Woodlands, changing to a light rain all the way into Houston and the train station. We arrived there about 615A without much traffic, which really surprised me. Fifteen more minutes put us at the hospital. After checking in at 7A, we waited almost a half an hour before we first talked with the Financial Counselor. She informed us about Medicare coverage for the transplant that we weren’t aware of. (We will check further with our Cigna Case Manager.) Then we met the Social Worker, along with two other transplant candidates, followed by individual consultations with the Social Worker, a Physical and History with a Physician’s Assistant, and our Transplant Coordinator. He explained the donor procedure to us and gave us more of a timeframe for this whole process. We finally got some answers to our questions!!!!

Ron will see the Cardiologist first, hopefully by the end of this month. Then his further testing will be scheduled and, hopefully, completed in one day in July. I need to get some tests done with our PCP, and then I will have some other tests done at the hospital when Ron’s are completed. Our coordinator expects everything to be presented to the Board of Review by the end of July. He also expects that everything will be approved. The transplant will be scheduled for sometime in August, and although he said “late” August, we’re hoping for the middle. Turns out that the head of the transplant team is the surgeon that does the live donor transplants, and they are done every other month....June, August, October, etc. So let’s hope that all goes well and August it is!!!!

*Thursday, June 17: Ron woke up with a very sore and swollen left ear, possibly a result of his hearing aid. I thought that it was a bit strange since the PA had looked in his ears the day before. Anyway, he put an ice pack on it, and it seemed to get better. But, later in the day, the pain and swelling flared up again.

I called our PCP’s office to make my appointment for my Well Woman checkup and to get my first donor tests done. I was first told July 13 or July 20, which was way too far away, considering that everything needs to go to the Board before the end of July. I further explained the situation, and she managed to find an opening on June 29 at 9A. I thanked her profusely for that. Ron’s appointment with the Nephrologist is later in that same day, so we’ll have another long day.

Our Transplant Coordinator called, after I left a message about two appointments on the same day, and he made the appointment with the Cardiologist on July 6 instead. I questioned him about the “timeframe” for everything else, and he said that everything would be fine.

Most all of my day was spent wrapping my brain around the “information overload” from the previous day. So much to think about, phone calls to make, emails to write, things to do....it’s like I don’t know where to start. I’m just so glad to be stitching again....it’s my therapy, my diversion....to take my mind off all that’s going on.

*Friday, June 18: Ron again woke with a very sore left ear. He even had me get him a Vicodin around 630A to ease the pain. I called our PCP and got an emergency appointment for noon. She said that ear infections can literally just flair up, so it was possible nothing was there when he had his physical on Wednesday. She gave him an RX for some antibiotic drops in individual doses, but when we went to Wal-Mart to fill it, they didn’t have them in that form. To change the RX, they needed the PCP’s approval, but her office had closed for the weekend when we left. So....he took the RX to another pharmacy. Later, Ron barbecued something for dinner, but he couldn’t eat it. Whether it was the antibiotic, the pain, or just still some lack of sleep, he just didn’t feel good. He promptly fell asleep in his chair for an hour and then went to bed. We're just thankful that this infection happened now, before the transplant testing.

(By Monday, Ron’s ear was feeling much, much better, but we are completing all the doses of eardrops.)

*Tuesday, June 22: Around 1030A, our Transplant Coordinator called, telling me that there were appointments available with the Cardiologist in the afternoon. Since the first one was only 2 hours away, we took the one at 2P, giving us plenty of time to get there, knowing that the weather could be a factor. Heading for the interstate about 1145A, the skies were looking very ominous, with very, very dark gray, almost black clouds. Traveling south, although we had intermittent rain, most of these dark clouds seemed to be behind us. That is…..until we reached the Flying J to fill up with gas!!! More ominous hug black clouds were coming right at us. As soon as Ron was back in the car, and back on the interstate, the wind came up, pushing our little car a bit, and the skies opened up with torrential downpours, bolts of lightning, and booming thunder. Usually, thunder can’t be heard while traveling in a car, but this time, we definitely heard it!!! The traffic slowed to a crawl, and wipers could barely keep the windshield clear. Fortunately, all this didn’t last too long as we traveled into downtown Houston. By the time, we reached the train station, the rain had let up quite a bit.

We arrived at the hospital with time to spare, so the cafeteria was our first stop for a bite to eat. At the Transplant Center, we checked in early, but in anticipation of being called in right away, I didn’t pull out my stitching. Wrong decision!!!! We sat in that waiting room for over half an hour!!! Once we were in the exam room, I pulled it out. Turned out to be at least another 20 minutes before the doctor finally came in. Next time, and there will be many more, I’m pulling out my stitching as soon as we arrive....period!!! They can wait while I put it away....when they finally call us in!!!

Anyway, the Cardiologist asked the usual medical history questions plus a few others and listened to Ron’s heart and lung functions. He then explained that the two tests required for Ron’s clearance....a stress test and an EKG....would be scheduled for yet another day. (We thought that everything was going to be done in one visit.) This whole process took maybe 20 minutes. The nurse will call us with the appointment later.

All in all, we spent approximately 4-½ hours traveling to and from the hospital and waiting for our 20 minutes with the doctor. As I've said before, this “hurry up and wait” stuff is already getting old, and there’s much more to come, I’m sure!!!

*Thursday, June 24: Around 415P, the nurse from the Transplant Center, called to give us information about Ron’s heart tests. A stress test and EKG are scheduled for a week from now, July 1, at 8A, at the Heart Center in the hospital. These are “fasting” tests, meaning no caffeine for 24 hours prior and no food after midnight. He does take his blood pressure meds, however. She also said that the tests would probably last until noon.

To continue......

*Tuesday, June 29: I had put off my Well Woman checkup because of the possibility of some donor tests with our PCP. That turned out to be the case. In order to get a medical clearance from the PCP, I was to have my blood pressure taken three different times, to measure for consistency. Also, I was to have an ABO and RH Factor blood test and a Creatinine Clearance test. Before I actually saw her, the nurse was taking all my vitals and asking a number of questions. When she asked me how old I was, and I told her, she had the most astonished look on her face. She thought I was about 45!!! Made my day!!! Anyway, I endured the “required” yearly test and received all my test orders, including a mammo and bone density referral. Our next stop was at the lab where I found out that I didn't have to "donate" my blood until I returned with my Creatinine Clearance bottle. Works for me!!!!

After a yummy lunch at Red Lobster, we arrived at the Nephrologist's office about an hour early, so we just stayed in the car. Ron took a nap, and I stitched. After signing in, we were called in right away, but ended up waiting in the exam room for probably 45 minutes before the doctor came in. His “detail, detail” demeanor is starting to get to me; I don’t know about Ron. He really doesn’t say a whole lot; he just pours over all those lab numbers. He is saying that Ron’s kidney function is pretty much stable since he’s been seeing him.....two and a half months short of year. He still insists that the transplant should not be taken lightly.....wait as long as we can. He also said that there’s no guarantee that Ron’s uric acid level will come down, to relieve his gout problems, with a transplant. When we told him that we had to go to Memorial Hermann because of our insurance, he looked a little disappointed.

After making another appointment for August 31, we left, talking about what we were going to do about the situation. I suppose that Memorial Hermann could refuse to do the transplant after all the testing, if they use the Nephrologist’s reasoning. We definitely need some additional answers from DOCTORS as to what Ron can expect after the transplant. I suggested that we try to find someone who is or was in the same situation.....gout problems and allergic to allopurinol.....on one of the forums or bulletin boards online.

In between my appointment and Ron’s, we drove down to Almost Heaven RV Park to put in our tentative reservation for August 2. In talking to the lady in the office, the same lady that we talked to before, we found that there is a question about the “size” of our dog staying there on a “monthly” basis. After explaining that Cassie is a “lover, not a fighter”, and she only goes outside twice a day to do her business, she said that she would explain the situation to the manager, possibly to get an exception. I would like to talk to the manager myself, but she won’t be there on Thursday when we will be in the area again. We’ll see.....

*Wednesday, June 30: The lady in the office at Almost Heaven RV Park called to tell us that the manager agreed to let us stay there with Cassie, assigning us to a spot where we can walk her out on the road, away from the campers. Believe me, I thanked her profusely!!!

*Thursday, July 1: Leaving at 6A for Ron’s 8A appointment at the hospital, I turned on the radio, and before we even got to the interstate, we heard that there was an overturned big rig in the southbound lanes, just south of Conroe. I didn’t hear all the details, but we entered the highway anyway. After traveling only 8 miles, the traffic came to a complete stop…….and I had just passed the last exit. Wouldn’t you know it!!!! Moving very slowly ahead, some vehicles started taking advantage of an upcoming onramp by entering it the wrong way and u-turning onto the access road. Knowing that we had to make some progress, somehow, I did the same thing. Not much further down the access road, the interstate traffic was being diverted to the same road. Fortunately, everyone was moving slowly, until we passed the accident site, when the “starting gate” opened. Traffic was back to normal!!!!

Despite the delay, we arrived at the hospital in plenty of time to pick up Ron’s paperwork in the Transplant Center and check in at the Heart Center for his tests. When we were called in, I was directed to a waiting area, complete with a TV, and Ron went to be prepped for his tests. Because I wasn’t in the room with him when all these procedures occurred, I asked him to give me a run-down of what took place.

First of all, an IV line was put into his arm, and a “highlighter” type liquid was injected. After waiting a half an hour, the technician took a series of 3-D pictures of Ron’s heart. Next, a drug that would dilate the blood vessels into the heart was injected. This simulated the same stress on the heart that running or jogging would do, but without stepping on a treadmill. Ron said that this was a very strange sensation. While under this “stress”, an EKG was done. Another drug was then administered to reverse the stress simulation. The first process with the “highlighter” was then repeated. Lastly, an ultrasound of his heart was done, and even the sound of his blood pumping through his heart was recorded. Three hours later, the IV was removed, and we were one step closer. The next tests will be scheduled after the Fourth of July holiday, next week sometime.

Before heading home, and because we had some questions that needed to be answered, we went off to find our Coordinator. Fortunately, we didn’t have to go very far.....just around the corner…..there he was, in the hallway. All of us went back the Heart Center waiting room, where we discussed what we can expect after the transplant and whether the transplant can be postponed if Ron’s numbers aren’t low enough. He gave us some good answers and advised us to continue with all the testing procedures. When those are completed, he will set up an appointment with the actual surgeon, and we can get his opinion of Ron’s situation at that time.

To continue......

*Tuesday, July 6: I made an appointment for my mammogram and bone density scan, one after another, which really surprised me. I realized after I got off the phone that the date is the day we move to the other park, but it’s in the early afternoon, so I should be okay. I also made an Ophthamologist appointment, another routine medical clearance, for Ron next week.

*Thursday, July 8: Finally filling my bottle for the Creatinine clearance test, I returned it to the lab and gave my blood “donation” for the ordered tests. I forgot that I was supposed to fast for the tests, but she drew the blood anyway. This time, the “blood drawing” lady was good.....didn’t hurt at all. The cholesterol test was the only one that should have been a fasting test, I think. I didn’t have the paperwork, the lab did, so I wasn’t reminded about the fasting.

I called our Transplant Coordinator and left a message, but we heard nothing back from him all day. So basically, there’s been no progress at all since the testing a week ago.

*Friday, July 9: Our Coordinator finally called back to tell us that Ron’s chart was now in scheduling and that the Scheduler would be calling. He also gave me her phone number, so I called her first. Ron’s next appointment is Tuesday, July 13, at 9A for an abdominal ultrasound, “meta bone” x-ray, EKG, and chest x-ray. She also tried to throw in barium enema, but I reminded her that Ron had just had a colonoscopy, and that wouldn’t be necessary. All of this should only take a couple of hours, and unless something unusual is found, that should be it for the testing. Then it will be my turn!!!

*Sunday, July 11: We’ve got a problem with Cassie. When I took her out in the morning, her first poop was fine, but the second one, a bigger one, was almost runny. I left her outside because I wanted to make sure that she cleaned herself before I brought her inside, but when I looked out a bit later, she had diarrhea. That new arthritis med was taking it’s toll!!! That wasn’t the end.....many times during the day, she had to go out.....until all she was passing was liquid. She did not eat any food at all, so was nothing in her system to absorb the liquid. Ron was up with her during the night, finally coming to back to bed around 3A.

*Monday, July 12: Cassie is still not doing very well. We are so lucky that she “tells” us when she needs to go out. She got me up shortly after 4A to take her out. I put her food out again, but she didn’t touch it until mid-afternoon. I worry that she’s going to get dehydrated. I called the vet’s office around 830A, and the girl took some notes and told me that the vet would call back. What she didn’t say was when!!!! After waiting all day, I called again about 330P and got very upset with her. Hoping to get this situation turned around, Ron ended up going over to the office to get some anti-diarrhea pills, but he could only get one dose down her. She refused to take the pills.....even disguised in cheese!!

The more the Cassie situation continued, and didn’t get any better, I knew that I was not going to be able to go with Ron down to the hospital the next day. He’s only having tests that won’t incapacitate him, so he should be fine.

*Tuesday, July 13: Ron left earlier than necessary for the last of his tests at the hospital. With only light traffic, he arrived way before 9A, but he was able to start on the tests without too much waiting. An abdominal ultrasound was done, along with an ultrasound of his kidneys. Some x-rays, termed Metabolic Bone Series, of his entire torso and his hands were taken. (He’s not sure why his hands were x-rayed.) With those completed, he returned to the Transplant Center where 14.....yes, 14.....vials of blood were drawn for probably every conceivable test known. Before leaving the hospital, and since he had been fasting for those blood tests, he had lunch, before heading to his Ophthamologist appointment. This appointment was for a general clearance required for the Pre-Transplant Evaluation.

Also before leaving, Ron talked to our Coordinator about what transpires next. He was told that all his information would be presented to the Board, probably within a week. In the meantime, I need to get my test results faxed to him, and my testing would begin maybe next week. I again called our PCP’s office to inquire about my test results and was told that they weren’t there yet. I won’t go into the details of the “mix-up”, but after more phone calls between the lab, the doctor’s office, and me, everything has been faxed to our Coordinator. Now to wait to hear from the Scheduler!!!!

Cassie still isn’t any better, but Ron got her to take a couple of pills with peanut butter, of all things. Something has got to give here!!! Three days with diarrhea just isn’t good, and if she won’t take the med, what are we supposed to do.

*Wednesday, July 14: I picked up my copies of my test results from the PCP’s office. The girls in the office commented that when I called the lab, I got results in getting those results to their office. I explained....been there, done that....too many times!!! They wished us well on our transplant quest. Everything is fine, as expected, and my cholesterol is down about 40%....big improvement from a year ago!!! Later, just after 5P, I called our Coordinator to make sure that he received my test results and the letter from our PCP. Expecting to get his answering machine, he answered. He confirmed that he had the faxes, and he said that once Ron’s tests are reviewed, he would be put on the transplant list. Then my testing will be scheduled, hopefully starting next week sometime.

We still have no improvement in Cassie’s situation. The vet’s office called in the afternoon, and I calmly updated the situation for her. Again, she took notes with a promise that the vet would call……didn’t happen!!! Most of the time, Cass still won’t take the pills……only twice in three days has she actually taken them. I’m beginning to think that Ron needs to go over to that office and confront them, to give us some other “palatable” medication, one that Cassie will take.

Thursday, July 15: The vet finally called back, and although I answered it, I gave the phone to Ron. After he explained the situation, the vet agreed to give us a different medication instead of the pills. So, on the way to his dentist appointment, Ron stopped at the vet and picked up some liquid anti-diarrhea medication. It turned out to be a bit difficult to get it down her the first time, but Ron managed to get another dose down just before he went to bed. Despite this, I was up around 130A to take her out and again around 530A. Neither one of us has been getting a whole lot of sleep!!!

*Friday, July 16: Good news!!!! Ron managed to get a couple more doses of medicine down Cassie, although in another attempt, she absolutely refused to take it. But, late in the afternoon, when Ron took her out for her normal walk, all was much improved. Thank goodness!!!! This had gone on for almost six days. Her appetite has returned, and she’s just about back to her old self. And for the first time in almost a week, neither one of us was up in the middle of the night to take Cassie out!!!

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