So, after sitting in a car for 3 hours, thanks to a huge, no reason, traffic jam at New Cross, we get to the Brompton hospital. I'm feeling so rough and we had to park such a way away that hubby digs out good old trusty (my wheelchair) and in to "Fort Sauna" we go. Why do they keep hospitals sooooo hot?
I check in and wait for the usual round of dietician, physio and then doc.
First up, dietician. I amble my way in and the dietician is clearly worried about me since i'd only seen her 2 weeks previous from when I was an inpatient. I say again that i'm concerned with how much weight i've been putting on since being on steroids especially as i'd been following (for the most part) her diet plan. As you may know steroids not only make you have the most enormous appetite they also make you retain water. Knowing this, i've pretty much cut out all chocolate and sweet things. I have 3 meals a day and no snacking in between YET in the space of 1 month i've gained 1 stone and since being put on steroids (last October) i've gained almost 2 stone. My body is so swollen it's disgusting.
She thinks that a lot of my issue is due to this water retention and puts a note in my file for the doctor that this needs to be addressed.
Next, on to the physio. By this time, i'm so hot, i'm really struggling to breath and I know she's gonna want me to do a spirometry (lung function) test. The problem is, since catching this cold, with all of the coughing i've been doing, I hurt. I can't take a deep breath in as it's too painful. I try, twice and although my total lung capacity is the same as before I got poorly (FVC 43%) my FEV1, which is the amout of air you can force out in 1 second was down to 19%!!! NOT GOOD.
We discussed that it was more than likely down due to the cold and the pain but will definitely need to be retested within the next few weeks to proove this.
We also discussed the potential for a "VEST" as use for my physio. This looks like a bullet proof vest that's attached to a compressor and (from what I understand) bubbles pressure around the vest and subsequently me to help move the yuck out of my chest. (Am awaiting delivery of it on a months trial to see if it is of any benefit to me.)
Finally onto the doc. She was concerned too with the amount of fluid retention I have and was amazed by the size of my legs and ankles. The only issue is that water pills can put a lot of pressure on the kidneys although they would help get rid of the fluid. She decided to give me a 10 course of water pills but I have to have a renal review and blood test on day 6 to see if it is ok to continue. She also gave me another antibiotic, Septrin, to try and help shift this new infection from catching this cold. It's only a short term antibiotic though, which i'm quite pleased about....don't really want anymore long term meds if I can help it.
We also discussed the big T (Transplant) think more highlighted from a lung function of 19%. To be honest, I've always known and done so much research into it I actually felt quite relaxed and matter of fact about discussing it. I think this is probably more because at the moment it's still at the discussion stage and not at the "time of an assessment" stage. Not sure how i'm gonna feel when it suddenly becomes real, if you know what I mean.
One piece of good news to come out of the consultation though was that I haven't grown a staph infection in over 3 years so the prophylaxis meds are working well and am now on minimum dose for those.
So not a really bad but not a great outcome. Have got to go back in 2 weeks for another blood test and spirometry and general review of health.
So we leave via blood test and pharmacy (who always take forever and we literally got back to the car as our 3 hour ticket ran out) and sat in traffic again for 3 hours to get home.
By the end of all of this driving, poor hubby had lost the will to cook and I was in no shape to be in the kitchen so to the rescue chinese food which hit the spot. Then early night to get over this busy day.
Blog more soon