We are finally home. It's strange to be here. It feels almost as if we're visiting.
When we had our doctor's appointment on Monday, we simply expected Dr. B. to review the test results that he requested and give us a plan of action. We were floored when he said everything looked good. The gene test showed no abnormal chromosomes at all, which means that the Myeloma is not reproducing he explained. That is very good news. There is still Myeloma in the bone marrow from the bone marrow biopsy, but what little bit is left can be stomped out since it is not reproducing.
Since Pete's numbers from his daily labs were not very good, we expected that we would need time to get these up. We were also a little concerned since it had been over a month since his transplant. The doctor wasn't too concerned, but said that he believed that Pete needed a break for a month to relax at home and see how things go. If the numbers don't go up, then he may receive more stem cells. The doctor weighed giving him more now, but due to the amount 'in the bank' he decided he'd rather wait until he really needed them for another transplant in the future.
The white count has been down some because Pete's had a little bit of a cold. Nothing serious and no fever. I have been giving him Musinex and he's doing well. He feels fine cold wise, just has an occasional cough or some chest congestion. The red count does pretty well. The platelets are always the last to come back after a transplant and there was some indication that they were trying before he received a dose of Velcade that is known to send platelets into a nose dive for a couple of weeks afterwards.
The orders we received were to have Pete's Quinten Port removed from his neck, to have labs drawn here in Roanoke on Monday and Thursday with the results faxed to UAMS, to have blood serum drawn and and sent via next day service every Monday with urine sample every other Monday, and to take 50 mg. of Thalidomide with 12 mg. of Dexamethasone on Monday's and Thursday's. We were then to return in a month to be tested again with MRI, PET Scan, and bone marrow biopsy and see the doctor. Then he can determine whether we are ready for a maintenance program or need something else.
We were given a bag full of supplies and a fist full of paper and instructions and appointments were made. They sent us over to the outpatient clinic with doctor's instructions to give Pete 2 units of platelets and then pull the port there. We arrived there at 3:00 PM and waited. I don't remember what time we got called in, but Pete received the platelets and had labs drawn. We were done after 5:00 and ready for them to pull the port. Well, to our surprise the nurse refused. We explained again that these were doctor's orders. They were adamant that platelets had to be at least 50. That is why the doctor wrote the order because it is impossible for Pete's platelets, which have been in the teens, to reach 50. So for him, the best choice is to give him the 2 units and then immediately pull the port.
We spent and hour and a half arguing about this and the doctor's order. They wouldn't budge. The supervisor said that their orders are to never do this without platelets at 50 and we would have to wait until they hit 50. It didn't matter that this was holding us up to leave for home. We couldn't leave with this because it needed to be flushed every day, but more importantly because it was such a huge risk of infection...been there, done that!
Even though the clinic was closed, I knew a nurse would still be there. I walked Pete back to the car because he'd already walked a lot from the clinic to the outpatient center and I didn't want him to have to walk it twice again. I put him in the driver's seat with the key so he could start the car and keep warm. Then I walked to the doctor's office and found a nurse. I had to return anyhow to pick up the prescriptions. It wasn't the nurse that had helped us earlier, but she knew of the instructions. She called the clinic for us and explained the doctor's orders. They had her call the doctor at home. This was 7:00 PM now. She called the doctor and of course he said that was exactly what he wanted done and even though they had gotten his platelets to 35 he wanted the port pulled with that platelet count. She called back with those orders and they still refused.
She told us to go back to the clinic in the morning and get more platelets and try again. I asked about us just going home and she was insistent that we could not. She said if they refuse tomorrow, then we were to go on to radiology to have a surgeon remove it.
We had not eaten all day since breakfast and we were very tired physically and mentally and went to have something to eat and sleep.
Tuesday morning we were so tired we just couldn't get up when the alarm clock went off. We slept a little more and then got up and sauntered over to the clinic. We skipped breakfast and I drove through the Burger King next to the hospital and got us each a breakfast sandwich to eat quickly.
We were told to be at the clinic at 8:15, but it was just about 9:00 when we checked in. We also figured that since we always sit at least an hour without fail and sometimes longer that it wouldn't be too big of a deal. Boy were we wrong. At 9:15 the cell phone rang. It was the nurse from the doctor's office. She wanted to know why we didn't show up at the clinic. I explained to her that we were sitting right there in the waiting room! She said the clinic contacted her at 8:30 and said we were 'no shows'. They have their nerve! All the times we sit there for hours and within 15 minutes of our appointment they call to complain about us? The nurse also said that she'd made an appointment for us with radiology to have the port removed so we were to go straight there immediately when we were done there at the clinic.
We sat there in the waiting room until 10:30. Then we were taken to the main clinic room for vitals and weight and sat waiting for the nurse and platelets. We waited about another 30 minutes. Then the nurse came and told us that we would not be receiving platelets that day because the hospital had run out of platelets. There would not be any that day. Great! She took a sample of blood to send to the lab for a check of platelet level. What difference did it make if they wouldn't pull it if it was less than 50? She said she had to send it to the radiology department. She wanted us to wait for the results, but I informed her that our instructions were to go to radiology and that is exactly what we were going to do. On top of that, the nurses we had were the same pair from the night before so there were very obvious hard feelings on their part. My attitude probably didn't help.
We had quite a walk to radiology and Pete made it fine with his cane. We signed in to discover that the hospital didn't have our insurance information on record. The girl at the desk was very helpful and looked all through the computer records and said that when Pete was admitted back in September his insurance card was entered as 'expired 2005'. It's really EFFECTIVE 2005. Slight difference. She made copies of his cards and corrected it. She said that we may receive bills for our hospital charges prior to that because of this error. Great. Just what we need to deal with in calling to straighten out soon.
We went back to the room where he'd been to have his port installed. We had a little wait while the nurses got to him and then noted that his platelets were only 25. So they dropped the normal 10 points overnight. They refused to treat him without platelets. Here we go again!
We explained the lack of platelet availability at the hospital for the day, our need to get to Virginia that day, and the doctor's orders. They called the surgeon 2-3 times and explained the situation while he was in a surgery. The port would only get pulled if he agreed and it wasn't looking promising.
When the doctor came in from surgery my face lit up. It was the same doctor that had pulled Pete's infected port at bedside back in October. I remembered him well. I immediately started to talk to him about it and remind him of this fact. Of course he didn't seem to remember since he sees so many people. He explained the risk and I explained that Pete had platelets well below 50 when he pulled the last one and that he didn't have any problems. I told him we had complete confidence in him. He wanted to be sure we understood the risks and joked about how if things didn't go well he'd be holding pressure on the site well through New Year's with us. We both agreed that we understood and accepted the risk.
The doctor got out all sorts of supplies and then yanked the port. Pete didn't even know he had pulled it. Immediate pressure was put on the spot, which was very uncomfortable for Pete since this was against the jugular vein in his neck. The doctor held pressure, shifting hands several times, and joked with us for 20 minutes until it was considered safe to apply a dressing. There was no bleeding. The doctor was a young German with a great sense of humor who shared some interesting stories with us. A most enjoyable doctor.
They gave us instructions to wait for 10 minutes to be sure that no bleeding started, to notify of bleeding immediately as well as applying pressure to stop bleeding should it occur, not to fly for 72 hours, and not to lift anything at all for 72 hours.
There was no bleeding, but since it was now early afternoon we decided to have some lunch. Pete didn't want to get in a hurry to leave so I made phone calls in the afternoon to set up appointments in Roanoke and get our utilities back on line and such. I did laundry and started loading and packing the car.
We went to bed fairly early Tuesday night since we were still exhausted and had trouble getting up Wednesday morning. We got up about 9:00 and took our time taking the last things to the car and cleaning our room before leaving. We left Little Rock about 11:00 AM Wednesday, New Year's Eve day and drove straight through arriving in Roanoke about 2:45 AM on New Year's Day, Thursday.
Right now Pete is feeling fine. We went to our local clinic today and met someone there that has also been a patient at UAMS. We recognized their UAMS tote bag. We also ran into our favorite doctor that retired two years ago while he just happened to be there visiting.
Pete's platelets have dropped further to 9, which is dangerous, but he is showing no signs of low platelets like bleeding and the doctor's orders we have in writing from UAMS show to give platelets only for bleeding. The clinic double checked all of this. The good news is that Pete's red count is up as is his white count.
It's good to be home!
