Monday, 27 April 2015

First official Frimley appointment

Friday I had my first official appointment under Frimley Park hospital's care. I know it's not fair to compare the two hospitals because Frimley has such a small unit compared to the Brompton, but it was hard not to! Great parking, no queue times, people who had time for me, it was a welcome change :)

I did my usual tests- one of them being lung function. The nurse was using a new system and she told me by FEV1 was 73%! I was astonished! I thought a miracle had happened lol. Turned out she'd accidentally told me the wrong numbers and my lung function was back down to 53%. Still alright, but not great.

I'd had my height and weight done too- somehow I've got smaller lol, but my weight has improved so with those two things combined I now am just in the "healthy" borders of weight YAY. Still need to improve, as ever, so the lovely dietician (who Alex fancies hahaha) gave me a load of different supplements to try. One of them has a bottle a bit like people who are on protein shakes. I love it, I feel so macho with it lol.

The only long part of the appointment was the xray. It's on a different unit to the CF one and the lady who was working that day was soooooo slow with everything! From walking to talking. It felt like it was taking forever- although it probably wasn't but I was so hungry by this point everything was an effort.

Next I spoke with Dr Orchard, who used to work at Brompton, and discussed a lot of things. He asked why I decided to leave Brompton, so briefly went into that. I wanted to ask him the same question, but thought that might be too personal and just me being nosey lol. He asked how happy I was with where my CF is right now; I said I felt it was alright but in an ideal world I'd still have a much higher lung function! I'm sure most people with CF would say the same thing.

Within my friends, a lot of them are pregnant or have babies etc, so Alex and I wanted to clarify where we stand on that topic and what our options are. We'd like a family sometime in the future, if possible, and we have spoken to the Brompton a number of times about the ins and outs of this topic. It's always good to hear different medical professional's perspectives and get an update every so often as to what our options are in relation to my health. Also, in case there have been any medical advances that might effect us.

With CF, and I'm sure a number of other illnesses, pregnancy isn't straight forward and I don't think it's something to jump into without speaking to your medical team. At this point in my CF, I'd just be ok to go through a pregnancy without too many complications (of course this can't be guaranteed), but who knows how well I'd be after the baby is born. I'd hate to not be able to look after my child at all for goodness knows how long. Plus actually getting pregnant will be a struggle for me. So, Alex and I think that the most sensible way to go would be surrogacy. Unless a miracle happens and my lung function shoots through the roof! Anywho, we're not there just yet, but it's always good to know your options.

Then the dreaded blood test came. I am not great with needles. At the Brompton I had a lot of work with a psychologist trying to help me, and I am much better than I used to be, but they still aren't my favourite pass-time. I get quite nervous, which I think makes the poor person trying to bleed me nervous. The lovely nurse tried once but knew I wasn't great with needles, so didn't want to keep trying and got one of the doctors. Not the most relaxing environment for me to meet one of my new docs, but eventually she managed to get the job done so I immediately liked her! My port flushes aren't usually a problem and that was straight forward.

So overal, a good appointment. I'm hoping to last another month without IVs but I can notice my health changing quite fast. It's frustrating, but I have done so much better then I had been. It must be because of the orals I had a few weeks ago. So I need to try and keep up my eating and not overdo it with the dog grooming at the moment.

Speak soon! xo