DJ'S JOURNAL

HURRY UP AND WAIT!!!!

At the end of the last article, we had seen the Nephrologist and received approval for Pre-Transplant Evaluation. With this new chapter of our medical odyssey, we were hoping that progress would come much faster, but that definitely didn’t happen. Here is what has transpired in the last five and a half weeks:

*Wednesday, April 28: Since the Referral Counselor at St. Luke’s didn’t call us back after our appointment with the Nephrologist, I decided to call her. She wanted all sorts of info about Ron, so I called her back after gathering it all up. She explained a lot of the procedures that take place, the first of which is verifying our insurance. That can take 3 or 4 weeks because only one person handles that for 6 other people and only works 6 hours a day!!! Two books, one about the transplant process and the other about the donor process, are being sent to us here at the park, but the counselor explained some of the process to me on the phone.

*Saturday, May 1: It’s been raining off and on, lightly, all night, but now we are experiencing torrential downpours, booming thunder, and bright flashes of lightning. Talk about living in a drum!!!! Rain, rain, rain.....thunder, lightning, wind.....from 8A to 2P!!! Cassie didn’t even go out to pee until 1030A, 3 hours later than normal. At times the rain came down so fast that the lawn behind us was totally flooded. The temp definitely dropped as the storm moved through, and for now, it’s much cooler than previous days. This is probably the worst storm that we’ve had in a long time!!!

The Referral Counselor at St. Luke’s had told me that the books about the transplant process would take a week to 10 days to arrive, but they arrived today, much to our surprise. Ron has read most of the recipient’s book, but I haven’t looked at the donor’s book yet. He won't be able to drive for 6 weeks after the transplant, and we’ll need to stay in the area for 6 months for follow-up exams. He mentioned something about leasing a car for 6 or 8 months, but I said that maybe we should just buy something.

*Tuesday, May 2: Ron read snippets of the donor book to me, but I still have to read it myself. The transplant is starting to take on more reality for us. We want to get it all over with, but we are not looking forward to the whole process: the tests, the hospitalization, and the surgeries. I’m just scared that something will go wrong, especially something that will prevent me from donating my kidney to Ron.

*Monday, May 3: Ron picked up his referral to have his colonoscopy. This procedure is necessary, not only because he’s never had one, but because he is over 60, and it is a requirement in the evaluation process. I’m debating whether to have my “yearly” stuff done this month or wait until next month. I don’t need refills on my RXs yet, and I will need to have those test results as part of my donor testing.

*Tuesday, May 11: With thunderstorms and torrential downpours all day long, I was wondering if we should reschedule the pre-colonoscopy appointment, but we didn’t. The rain had let up when we left around 345P, but as we headed east toward the interstate and then south on the interstate, the rain really intensified. I realized about that time that we forgot the umbrella. By the time we reached the medical building, rain was pouring, thunder was booming, and lightning was flashing. Expecting the waiting room to be empty because of the storm, I was surprised to see three other patients and their respective families. I could hear the rain on the roof and the thunder rumbling. Shortly after sitting down, the power went out, leaving only a minimum of lighting, so it was difficult to even read a magazine. We waited for an hour before seeing the doctor, and we were the last ones for the day. He asked a few questions and explained the colonoscopy procedure. We then talked to the scheduler, but she couldn’t schedule the procedure because the phones were out. She will call tomorrow with more info, but it will probably be next week sometime.

*Thursday, May 13: Just before 3A, rumbles of thunder and flashes of lightning awakened me. It intensified over the next hour, but very little rain actually fell. I finally fell back to sleep, but was awakened again around 5A with more thunder. That was only the beginning!!!! Just after 11A, Ron went off to Sam’s, and I checked the Weather Channel, knowing there was more weather to come. Our location was in a “red box”, meaning “tornado watch”. Panic!!!! I went outside and looked at the sky to the north, and sure enough, there were very, very dark clouds. I calmly put up the awning, came inside, and watched for more info. Before long the satellite cut out, so I switched over to the local news, which was full of kinds of colorful Doppler radar pictures. The rain came down in buckets and buckets, and Ron was caught who knows where. He finally got back around 1230P, soaking wet. The rain, thunder, and lightning continued all afternoon, while into the night, there was just a steady, soothing rain.

During all of this weather, and since I had not heard anything from St. Luke's in two weeks, I called and left a message for the St. Luke’s coordinator. I also called the Gastroenterologist’s office. The scheduler had set up Ron’s colonoscopy for Thursday, May 20 at another St. Luke’s, just down the interstate. Because of the pre-procedure eating requirements, we won’t be going out to dinner for my birthday on the 19th, the day before. Later in the afternoon, I received a callback from the St. Luke’s coordinator. She had called Cigna and found that St. Luke’s in Houston is not their “preferred” hospital for transplants. (Why hadn't she called to tell us that before two weeks had passed!!!) She said that a Case Manager from Cigna would be calling us to explain everything. Later still, our Cigna Case Manager called and talked with Ron for over half an hour. She asked Ron a lot of questions about his specific situation and our combined situation. Memorial Hermann in Houston is the “preferred” hospital, but we are concerned about my laproscopic procedure and whether they use that procedure. She will check into that. She also asked about the possibility of going to Dallas instead, something that we never thought about. So many options!!!! One more thing.....Honeywell makes the decision about my coverage as the donor.

*Wednesday, May 19: Since we hadn’t heard anything back from Cigna after last Thursday, we decided that we’d better call to find out what’s going on. It’s been 3 weeks since we saw the Nephrologist, and absolutely nothing has been accomplished to get the testing process going. Ron called our Case Manager at Cigna, leaving a message, and I called the nurse at the Nephrologist’s, leaving a message. I spoke with our Cigna Case Manager when she called back, and she told me that Memorial Hermann does do laproscopic procedures. It is, however, on a case by case basis and determined by the examining doctors. I want the procedure because of the quicker recovery time. I need to recover quickly in order to take care of Ron, and she agrees with my reasoning. She is also waiting to hear from Cigna regarding my coverage as the donor. This question arises because of the wording in our handbook about donors. It states that “blood relatives” are covered as live donors.....period.....and Cigna will pay for that. With all the advances in transplant procedures, I feel confident that I’ll be covered, but we still need the formal approval from Honeywell, the plan administrator.

*Thursday, May 20: We left here about 720A for St. Luke’s for Ron’s colonoscopy appointment. (This was a different branch of St. Luke’s, closer to us than Houston.) After waiting for an hour, the volunteer finally gave Ron some paperwork to fill out, and then we were finally called into the admitting office. Ron was prepped, and about a half an hour later, all was finished. Ron’s reaction to all of this.....the drinking of that gallon of stuff yesterday took longer than the whole procedure!!! Never mind, the waiting before was longer than the whole procedure!!! Bottom line, however, everything is just fine!!!

*Friday, May 21: After missing a call from our Cigna Case Manager yesterday, I called her back this morning, and she gave us some very good news. Memorial Hermann Hospital has approved Ron for Pre-Transplant Evaluation. She also told me that Ron's Nephrologist needn’t be affiliated with that hospital, as the surgical team is in charge of Ron’s care until they release him back to that doctor. The hospital will call us about setting up appointments and mailing out paperwork, although I haven’t heard from them yet.

*Saturday, May 22: While walking this morning, I decided that I would go with Ron to find a car, even though I’m not real big on “car shopping” at all. He had seen a 2000 Honda CRV on the local Honda dealer’s website, so just before noon we headed off to the dealership. We spotted the car right away, with a lower price tag than expected, and sure enough, a salesman spotted us right away. His first question, however, was about our truck!!! He got the keys to the car, and Ron got into the driver’s seat very easily. The first thing that we noticed was the mileage.....just over 46000 miles!!!! I got in, and the salesman asked if we wanted to drive it. Actually, I drove it, and we were both really impressed with the smooth ride and the roominess of the interior, especially the headroom. Back at the dealership, we decided to go with it. So, after the paperwork and then lightening up our bank account, we own a “toad”!!!! (That’s “RV-speak” for a vehicle that is “towed” behind an RV, although we won’t be towing it behind our fifth wheel!!!) And it only took a couple of hours!!!!

*Wednesday, May 26: Good news day!!!! I’m covered!!! Our Cigna Case Manager called this afternoon to tell us that Honeywell approved my Cigna coverage to be Ron’s donor. Thank goodness!!! Ron wasn’t here at the time, and I was in tears.....happy tears. She also said that she had not heard from the hospital and was going to call again. About half an hour later, a Transplant Coordinator from Memorial Hermann, called asking where to send the paperwork. When I asked how long it would take to get here, he said a couple of weeks, so instead he suggested that we come down and pick it up. He then gave me directions to the “train” station, just south of the 610 Loop, and he gave me his phone number so that he can meet us when we get off the train. In the middle of all these directions, Ron came back from his errands. I was soooo excited with all the news!!!! Taking the train.....well, I don’t know if that’s going to be the easiest way to go, but we’ll find out more about the parking situation at the hospital today. Finally, we’re getting somewhere!!!!

*Thursday, May 27: We left at 9A for the hospital, arriving at the Fannin South Metro Station just after 10A. Everything is automated.....paying for the parking space and buying a ticket for the train. Fifteen or so minutes later we were in front of Memorial Hermann. I called the Transplant Coordinator, who met us and took us to the Transplant Center area of the hospital. We filled out some paperwork and asked questions, followed by lunch in the cafeteria and reading our transplantation booklets. After lunch, we met again with the Coordinator, along with a another one of the nurses. Ron asked about the determining factors as to when the transplant can take place and who makes them. She told us what we had heard before, 20% function, but she also said that the factor could be 30% if there is a living donor. We had not heard that before!!! Ron has been between 22% and 25% for quite a while, so we’re hoping that once all the testing is done that the procedures can be scheduled. The Coordinator is trying to schedule the first appointment with the Cardiologist and some other key people for next Tuesday, June 1. With the holiday on Monday, however, that may not be possible. There are lots and lots of tests and consultations to be done.

*Friday, May 28: Mid-afternoon, I called the Transplant Coordinator, left a message, and he called back a bit later. We had a couple of questions about how recent an eye exam should be....within a year....and what paperwork is necessary from the colonoscopy....the written report. Ron had already picked that up at the hospital. He told me that our records are now with Dora, the Insurance Coordinator. He also said that our case is now in the hands of another Transplant Coordinator. He had met with us because the new one was not available the other day, but he is aware of our case. I will call him on Tuesday to find out what’s next.

*Tuesday, June 1: I called our Transplant Coordinator at the hospital, but I had to leave a message. He finally called back around 3P. He did know of us, but I had to explain our situation, including where we live and how anxious we are to get on with the testing. He was supposed to call back today, but I didn't hear from him.

*Wednesday, June 2: The nurse from the Nephrologist's office called with Ron’s numbers from his last blood test. His Creatinine is 4.3, down from 4.7 but there was an increase in Potassium from 4.9 to 5.8. Basically, nothing can be done about the Potassium except read the food labels and avoid foods with it in them. She also questioned again about the hospital and why we weren’t going to St. Luke’s. Again Ron explained that our insurance doesn’t use that hospital.

By late afternoon, I was wondering if we were going to get a call back from our Coordinator, as he had said. Just before 5P, I called him, and to my surprise, he answered. When I asked him about calling back, he said that he did not have all the information that he needed. (Why didn’t he call and tell me that???) I then called and left a message on our Cigna Case Manager’s voice mail about the situation.

*Thursday, June 3: Our Case Manager called back around 10A, and I expressed my concern about the way we are being handled by the Coordinator at Hermann. She indicated that she would call someone in charge of the department about it. No word back from her during the day.....nor did we hear anything at all back from the Coordinator. We are both getting very upset about these circumstances, and we better hear something today.....that’s for sure!!! This “hurry up and wait” attitude is getting very old!!!!

*Friday, June 4: The Coordinator called around 930A to tell us that Ron’s “chart” is now with Scheduling. He said that it had already passed Finance. (I guess that would be because our insurance is basically paying!!!) He explained that the first Pre-Transplant Evaluation appointment involves consultations with a Social Worker, a Dietician, and a Financial Counselor, along with the Coordinator (that would be him!!!) sitting in. He also said that we should make a list of questions that we might have regarding the transplant process. When I asked him when we might hear from Scheduling about the appointment, he said “within two weeks”. I almost came unglued!!!! I explained to him that we had already been waiting far too long for all of this, that the first Coordinator had indicated that we might even have an appointment this week, and that everything had not been explained to us properly. In other words, we had already been misled about how things were to occur. He said that he would investigate and get back to me before the end of the day.

A short time later, I received a call from Scheduling. I almost fell off my chair!!! (What I said to the Coordinator must have made an impression!!!) She informed me that our Consultations appointment was scheduled for Wednesday, June 16, at 7AM. Why they need to make these appointments so early in the morning is certainly beyond me!!!! Anyway, she itemized what to expect from the appointment and how long would be there .....probably until mid-afternoon. Finally.....we are getting somewhere.....after five and a half weeks!!!!

To be continued..............