Dr. M had mentioned that I might consider switching to a new rheumatologist the first time we saw her after the second stroke. She gave no reason, just a suggestion. A strong suggestion. Tommy and I discussed it and weren't really sure that we wanted to introduce a new party into the mix, but I had been seeing the old rheumy for 19 years and was kind of in a stalemate so we figured what could it hurt to get a new set of eyes on my charts and history.
Again, for the past 19 years I have trusted Dr. B with my aches and pains. He's seen me through the disintegration of my left ankle and the fusion and recovery from that. He, or rather, his staff, has guided me through the plethora of arthritis medications and side effects. After my stroke last year, we contacted his office to find out if he thought that it could be related to any of my medication or anything and I was quickly told that there was no way it was related and to "keep on keeping on". So I kept on keeping on. This year after the second stroke, Tommy, while I was still in the hospital, contacted their office and let them know what was going on and he was told to continue with my medication when I was released from the hospital. They didn't seemed to see a relevance or relation.
The first thing after Dr. M made the referral we got a call from the new office letting us know that we wouldn't be able to get in to see Oz because he was no longer taking new patients. What on earth? Why would Dr. M refer us to somebody that wasn't taking new patients!?! But, the receptionist that made the call to us told me that I could get in to see one of his counterparts, but it would be September to see one of them and October for the other one...(like that was any comfort? I couldn't see who I wanted and the second string was so far behind it wouldn't really matter I thought) OR the receptionist told me, I could see Oz's nurse practitioner. I had no clue what a nurse practitioner (thought it sounded like a beginning level RN just out of school...after all, what are they practicing?) was so I called Dr. M's office back to make sure that was what she wanted. I was told it'd be fine, so yet another phone call was made and before long I had an appointment with the NP.
Tommy wasn't so sure about seeing NP either. He said he'd reserve judgment until after the appointment but he wasn't holding his breath that this was a good idea to be switching. I reminded him what my grandmother used to say about holding one's breath...you shouldn't do it, because blue is NOT your color. I called Dr. B's office to get copies of my medical records the week before we were to see NP. I just told Dr B's nurse that my primary care physician wanted to see the records so that we could go over them and see if there were any patterns or medication changes that might be indicative of something causing these strokes (didn't want to say at this point that we were switching because if we didn't like the practice nurse, we weren't staying). The nurse asked me if I wanted all of the records or just the past 2 years. I asked for all of the records and assured her that we would pay for any copying or duplication costs that were incurred. It was a Monday. I was told Tommy could go by on Wednesday to pick them up.
Wednesday came and Tommy ran by Dr. B's office on his way home from work before PT to pick up the records. When he got home to pick me up for PT he handed me a regular sized envelope with my name on the front of it. I asked him what it was and he said, "your medical records from Dr. B". I thought he was joking. I had seen the man for 19 years. How could it all fit in this regular mailing size envelope like the gas bill comes in? I opened it up and inside were 4 pages. Yep, my entire 19 years of medical records I had requested amounted to 4 pages obviously in their world. It went back to 2012.
Now, keep in mind, this is now 2014. I will be 40 years old in November. According to the paperwork in this envelope in October 2012 (which was NOT the first time I saw him...so not sure what happened to the first 17 years), I was 34 years old and had had my right ankle replaced 3 years prior (or some craziness like that). I went on to read the next page. It said in 2013 I was 38.5 years old (I age quickly obviously) and had a left hip replacement or some other ludicrousness! Needless to say, none of the 4 pages was of any relevance since it seemed to be filled with erroneous data. I was angry and grateful all at the same time. Grateful that Dr. M had suggested we make the move and angry that my medical history was not documented better by a professional that I had trusted.
The day arrives that we are to go see NP and I truly had no idea what to expect. I didn't know what a nurse practitioner was and I didn't know anything about this new clinic (other than it was a lot closer to home than the old place) and I just wanted answers. As we sat in the little exam room waiting to meet NP, we heard voices outside the door. We could tell that it was a man and woman and they were discussing my medical history (that they had received from Dr. M). Then, in comes NP.
She was a short blonde woman and very naturally pretty but had the look about her that she was taking no crap off of anybody (later found out she had been a military nurse). She spoke with Tommy and I at great length and then asked if we had brought our xrays from Dr. B's. I had never had xrays done at Dr. Bs. When my ankle joints disintegrated, he had sent me to a specialist and they had done those xrays but Dr B's office had never done any. NP sighed deeply. Couldn't tell if it was exasperation or amusement. She said, "Well here, we xray your entire body once a year so that we can progress any disintegration of joints." Made sense, I suppose.
Then, she asked about medications. I had previously been on a medication that was given intravenously (like chemo) once a month. However, the only good vein that they could find was on the top of my left hand. After going to that vein for so many months (every month for more than 2 years), it just became too scarred and weak and we had to quit taking that medication that way, even though it worked really well. I was relegated to weekly injections of a lesser version of the drug that was effective but not to the extent that the IV version was. We had asked Dr B and his staff many times about inserting a port so I could continue with the good medication and he insisted that they get infected too easily and it was too dangerous. NP excused herself from the room for a few minutes after hearing this. Tommy and I weren't really sure where she had gone or what was going on, but we just hung out in the exam room.
Within a couple minutes, the door flies open again and this older, white headed man that resembles the Wizard in one of my favorite movies of all time, "The Wizard of Oz" came into the room. He was loud and robust and very confident in his presentation. He introduced himself as Oz (the same guy that was not taking any new patients!) and told us that he had been reading up on my case and he personally wanted to introduce himself to us and talk to us about everything that had been going on. Tommy and I exchanged looks of half-excitement, half-bewilderment. What on earth could be in my chart that caused this man to come in to THIS case? Whatever it was, we were grateful to be seeing the actual doctor, no offense to NP, but being new here, it just felt a little better.
He went over much of the same questioning that NP had already covered. When he got to the question about the previous IV medication and why I was no longer taking it and we told him about the bad vein and the port issues, he said, "nonsense! They only get infected if people don't know what they are doing. We've had people have them in for 10 plus years without a problem." He also asked about the 2 strokes that had occurred in such a short period of time. We affirmed that that was correct and that nobody seemed to know why they were happening because all the tests had been turning up negative or without cause. He, very matter of factly, almost like the 5 year old that comes running into the room in his superman under-roos and announces he is going to save the world, said, "I will tell you why you are having multiple strokes at such a young age." Then he took out his prescription pad and wrote a word that had more letters in it than any words I had ever seen. He ripped the top page off of the pad and handed one copy to me and one to Tommy. He said, "we are going to test for that, but I guarantee you, even if the tests come back negative, you have all of the signs of this and THAT, my dear, is what we are going to treat." I was still trying to pronounce the words when Oz disappeared out of the room.
NP told Tommy that he could wait in the waiting room because they were going to take me back to the lab and the xray area to start testing. He was ushered out of the room just as quickly as Oz had left. An older woman (LH) came and fetched me for the labs. We trapsed across what felt like a mile long rambling corridor and finally got to this area that was pretty nice. It had at least a dozen super luxurious recliners in it and a couple large flat screen tvs mounted up on the wall. I was told that this is the lab area and also where they give the IV medications. Much nicer than Dr. B's setup had been. We had practically been stuck in a chair in a coat closet there with one little tv to share.
I dread any time that I have to have lab work done. Does not matter how much water I drink or what I do beforehand to try to prepare, my veins just never want to cooperate. I asked how much they'd need to get and they told me that they had to have 11 vials of blood. Not the most that had been drawn at a single time before but still quite a bit. I told LH that usually they could only get the top of my left hand because the other veins rolled and blew too easily and that she'd have to warm the hand up before she tried to get the vein to pop up to easily manipulate it. She was perfect. She got all 11 vials out of that vein with no issues. While I was sitting there Donna, the head nurse, came and looked over my arms and gave me the good once over to figure out where they might have the best shot of introducing the IV. She found a few viable options and then made notes. That would not start today.
Finally I was trotted, as best as I could trot with Jack, down another series of hallways to the Xray facility. I was given a lovely pair of navy paper shorts because my pants I had on had a metal zipper (I hear that they are all the rage this summer). I can honestly say, I have never ever been xrayed so much in my entire life. Stand this way, turn that way, squat like a duck, turn around, hold your jaw, lower your arm. I felt like it was a weird version of Twister. One particular part of my body required 8 different angles and views. And then it was announced that all the fun and games were over and I could leave. I was escorted back to the lobby where Tommy had started to think that I had disappeared into the abyss back there (it had been the better part of 2 hours since he had been sent to wait in the lobby). We were given an appointment for the following week to come back and they would discuss all the results from today's tests and we would determine how to move forward. I didn't know if I should feel relieved or panicked. In one week we might have the answer to all of the strokes, but then again, we might not. In the meantime, I needed to see Mama and Rabbi and LittleBit for some cheering up.
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