Attending a medical appointment only to discover you have lost a piece of yourself, literally, is dispiriting. In Lucy's latest blog instalment she describes her visit to the rheumatologist, and preparation for PEG surgery, both reaping unexpected news.

Hi everyone! 

I hope you're all okay. I'm sorry I've been an absent blogger again lately. I just never seem to have the time or energy to sit down and write but I'm gonna try to make more of an effort to be a regular blogger this year. No promises, though, so don't hold me accountable, lol. I've got a few things to tell you, but I never know where to begin. 

I'll start with my rheumatology appointment last month, I was referred to a specialist because of the tricky situation I'm in with my severe osteoporosis. The consultant was lovely and thoroughly discussed everything from my medical history to my medications. He reiterated what I'd already been told about avoiding AA (Osteoporosis medication) due to my age and gastrointestinal condition, and he said that I needed to continue to gain weight, which will benefit my bones. I have a significantly low bone density and my risk of fracturing is quite high, so not treating it is concerning but taking the medication is too risky, so for now we've decided to adopt a wait and watch approach, which mean I'll be closely monitored for any changes. 

The appointment took an unexpected turn when the nurses came to measure me and we discovered I'd somehow lost some height since I was last measured. I tried to dispute this, as I hadn't noticed any loss of height, but the Consultant said it can happen with Osteoporosis due to a spinal trauma/ fracture or a slight spinal curvature. I already suffer from chronic back problems due to Marfan syndrome and protruding spinal hardware after major surgery to repair severe Scoliosis, so it would be hard to tell if I'd injured it somehow as I'm used to living with chronic back pain. We had a long discussion about what this new finding might mean for me, and he talked about referring me for a spinal X-ray to assess things. He's then going to discuss the results with his colleagues to see what they suggest about where we go from here. I'm hoping wholeheartedly that I've just lost a height due to osteoporosis alone, rather than another curvature or a spinal trauma. 

Now for the next instalment regarding my gastrointestinal health; I'm now waiting to be assessed by the nutritional team in preparation for my PEG surgery. I’ve got to attend an MDT meeting at the end of this month to discuss the complexity of my case. My dietician feels that I'll needs an extensive physical assessment before surgery because some people with Marfan syndrome have stomachs that are slightly higher up than 'normal', so they'll need to be aware of this when deciding whereabouts to fit my PEG. I also have a bowel prolapse, which hopefully won't complicate things but they'll need to get my consultants opinion first. My dietician thinks I'm doing really well on the feeding tube and although I eat what I can tolerate orally, it's not enough to sustain myself on without the tube. So it makes sense to switch to a more permanent feeding tube, however, it seems there are many hoops to jump through first.

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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