I wasn’t really anxious about seeing the doctor but I wasn’t looking forward to it. After sending him the update email and his very abrupt call I just felt that maybe our meeting wasn’t going to go all that well. I had needed to change the planned hospital visit from Windsor to Slough as we were away for the original appointment, this can mean only one thing, the clinics never run on time. We got to Wexham ten minutes early, the traffic was easy, so was parking and we checked in nice and promptly. We waited and waited and waited. I was called to have my weight checked after ten minutes we got all hopeful thinking we were going in, no such luck, I finally got in to see the doctor over 45 minutes after my appointment time. It didn’t help I was tired after my sleepless night, or that I wasn’t looking forward to the appointment I suppose.
I shouldn’t have worried, Dr Mayadunne gave us a very warm welcome as he had the first time. We ran through how I had been since our first meeting and had I experienced any syncope attacks. I explained that I didn’t faint as I always take steps not to faint, I sit as soon as my vision darkens, or my hearing goes, I know my warning signs and I follow them. I never let it get to the stage where I am on the floor. The only time I have a real problem is when I have a Reflex Anoxic Seizure when I have no control over my blood pressure and I just don’t have the warnings. We discussed whether I felt the Ivabradine was doing any good, I admitted that my resting heart rate was much better, but as soon as I moved it started racing, I told him if I made any attempt to stand for longer than five minutes I would have a heart rate of 120-140 BPM. This was a concern so he asked me if I would consider changing over to Midodrine, I have read peoples posts on forums about side effects on that drug and on of the main ones is a blinding headache. Bearing in mind I live 24/7 with a headache I do not wish to exacerbate it. So I discussed it with him, that I would not be happy to take a prescription for an expensive medication, that I would not be successful on. I think he appreciated that I was aware of the drug cost. So we agreed to try it out for two weeks. I would stop Ivabradine, try Midodrine and see what happens, it might work, it might not.
In the meantime, he was trying to get the results from my 72 hour urine analysis, they were on “hold” at the microbiology unit for some reason. He wanted them released immediately, however that didn’t seem to be possible during our appointment time. I couldn’t work out why a test that I had completed back in May would be on hold for so long? So Dr M said he would look into the results and let me know.
Then we discussed my cortisol levels, he admitted that they weren’t great, and he wanted me to have the Short Synacthen Test. This is the test the hospital are objecting so much about. So a second request has now been completed and submitted to the Medical Investigation Unit. Let’s hope they listen this time because obviously he is concerned about something and with over six stones of weight lost, meaning I am now underweight on the BMI scale and the new adrenaline surges maybe there is something wrong with my adrenal system?
We talked about how much I am not getting out and about, but mentioned my new crutches, he was impressed with them. Then we told him about the new wheelchair that was on order, explaining that the last twelve months had been a huge lifestyle change and I needed some quality of life back. I think he actually got it at that point. Then we agreed to meet again in a couple of months unless anything came up in the meantime, with a couple of handshakes the appointment was over, we had been in there for quite a while and it had gone really well I think.
So now it is a case of waiting for the appointment to come through for the SST, or shall I not hold my breath, because I think I may have a battle on my hands for that, considering I already have a letter from the chief executive of the trust telling me I can’t have it. We will see!