I thought I would do an update as I haven’t done one for quite a while. I have been really busy with visits to various London hospital for tests and to see my specialists in POTS, Mast cell activation, nuero-gastrointestinal and urology issues and more locally I have been having another surgery on my shoulder. I think the easiest way to tackle this is one area at a time.
So, let’s start with POTS (postural, orthostatic tachycardia), I have had a range of tests, including exercise, test, 7 day cardiac monitor, echos and ECGs. All of these took place at a hospital next to London Bridge. We were there the day before the awful events happened and then back in the following week, it was rather harrowing to watch the events on television thinking we were there less than 24 hours before hand. The 7 day cardiac monitor was fitted just a few days after and with all the events that have been going on recently I must confess I was rather nervous to walk through Paddington train station with wires coming out of my chest and attaching to a small box, I had visions on armed police making me lie on the floor and all sorts. Thankfully none of that happened. The results of all of the tests is that my heart rate is high but at the time of testing I did not categorically have POTs, therefore I am borderline. The tests are interesting in that that even a negative result doesn’t necessarily mean you don’t have it, just that you didn’t that day.
The mast cell activation disorder, this one was a little easier as the test were all blood tests and urine analysis, again this came up as borderline. So, I am now on a strong treatment of anti-histamine drugs twice a day.
Gastrointestinal, well so far, I am still undergoing tests, I have had an MRI scan already and I am waiting for an Endoscopy and a hydrogen breath test. Unfortunately, the hydrogen breath test can’t be done within 4 weeks of having antibiotic, so I keep having to put it back, In the meantime my Professor has me on a diet, no gluten, wheat, dairy or added sugar. He also recognises the issues I have with malabsorption because I have had half my large bowel removed.
Urology has been the big one, my urologist is possibly the loveliest doctor I have ever met, he is truly wonderful. After a scan and an examination, he noticed that there
was an abnormality in the bladder. I was sent for a cystoscopy and biopsies under general anaesthetic, I had this done on Monday of last week, it was a very late night, we didn’t get home until 1am and it was a little painful. They found I have a massive infection and lots of inflammation in the lining of the bladder so I am now on enough antibiotics and anti-inflammatories to treat a rhinoceros. Unfortunately, they are making me feel quite nauseous and making me vomit. We are waiting the results of the biopsies.
I have also had surgery on my shoulder, it was a new technique that was in-fact so new they filmed it for teaching purposes. This surgery should tighten my shoulder and stabilise it, to help prevent subluxations and dislocations. Unfortunately, on Wednesday this week whilst I was sat in the GPs waiting room, my shoulder subluxed and then the muscles went into spasm, preventing the shoulder joint going back into the correct position. Fortunately, I was able to get hold of my surgeon’s secretary who was lovely and got my surgeon to call me. We spent a few hours in A&E trying to get the pain under control because no one would touch my shoulder to try and locate it. I cannot quite describe to you the pain of a joint that is not quite sitting in the right location, it was truly agony. Thankfully my surgeon put himself out to see me the next day, after his clinic at a different hospital. He did some x-rays and he manipulated the joint a little getting it back into a more normal position, still out but less than it was. He then explained that I have dystonia which means my muscle is in spasm and is pushing the joint out so that it is subluxed. My surgeon stayed an hour and a half past the time he should have left and gave me his mobile number in case of problems, he put himself out so much for me, he is such a lovely man and a great surgeon. After a lot of diazepam to relax the muscle, I woke up on Friday morning and my shoulder was back in a normal position. It is now just moving in and out of the joint freely. There is a plan to send me away for a couple of weeks for rehabilitation, treatment and physio on my shoulder to see if that will help at all. If not, I think we are now looking at a fixation, we would mean a loss of movement.
The one thing the last few weeks has taught me is that I am so fortunate and so grateful to have the most wonderful team of doctors who are treating me.