However, should I have a flare with my symptoms, then obviously more medical appointments will follow.
Due to the complexity of scleroderma, the medical team required for optimum care is quite large with all of the differing medical care specialities involved.
I went in to more detail about this on Day 30 Scleroderma Awareness month.
I wrote more about my ‘tin-man’ symptoms, here
I have also taken part in eating a barium radioactive meal to assess my stomach emptying, which showed a decrease in motility. I have not repeated these tests since.
How optimistic and wrong I was! I had to take 4 days off work, which was of extreme inconvenience at the time, as my work diary had been booked for weeks’ in advance and taking days off from court at the last minute, caused all sorts of problems!
In July 2016 I attended my local hospital for my annual lung and heart test.
This requires lying on your back leaning slightly on the left side. Again, this procedure requires no clothing from the waist up, which may induce a Raynuad’s attack.
This is an ECHO machine which requires a trained technician to operate properly. Mark, was my technician last time, and to whom I am grateful for his patience, as the body position required to gain the best ECHO results, I find to be quite uncomfortable.
This is covered in petroleum jelly to allow the electric signal to be conveyed to the machine, which displays an image of your heart on the screen, and luckily my mine was beating satisfactorily with minimum fibrosis and scarring.
|Lung Function Testing Equipment|
I am extremely grateful to Rachael, Mark and the rest of the team, for making these tests as easy, comfortable and patient focussed as possible.
And, funnily enough, Rachel had seen me out and about on my electric scooter walking my brown dog Daisy, with my white dog, Mitzy sat on my knee, the week before!
The lung test takes about 20 minutes in total. At the end of which, I was delighted to see that my lung test results had improved slightly from last year. I did not ask for the exact result, as I was so overjoyed that an improvement was seen.
An edited version of this article was published here, in my Column with Scleroderma News.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice