One Step Forward, Two Steps Back

Well so much for resting this week and getting started on my plans…
Today was the day I had my meeting with my housing officer to change our tenancies over from sole to joint with both mine & my husbands name.
Unfortunately with short notice I had to cancel it as Exeter needed me to attend clinic to talk about my next course of iv’s.

Stefan & I were up a the crack of dawn making our way up to Exeter & it was freezing!! I’m having real bad tummy troubles again so was in a lot of pain & feeling very uncomfortable, I didn’t make much of an effort when leaving the house, I felt like shit & it certainly showed in my appearance!!

I actually saw both my consultants today, which rarely happens, even though one was in another clinic he still came into my room to let me know what the plan was.

Unfortunately they had some unexpecting news for me which I wasn’t best pleased about. Dr Carby had phoned them this morning to say that the bloods taken last week at Harefield showed I was very anaemic and that he wouldn’t be happy to transplant me with how low they were.

I am still on the list but have had a suspension for a fortnight which means if a possible donor became available they wouldn’t be able to call me.
Obviously after only 5/6 days on the list it’s a bit upsetting when your told this and feels like I’ve taken a step back.
Luckily I was able to have an iron infusion there and then on Yarty Day Case Unit (I’ve been there several times as this has been a problem for me in the past) so it’s a step in the right direction to get my levels up again.

I am from today also going to be on iv’s constantly alternating between the three that I am usually put on. I was started today on Mereopenom, will have a fortnight of that, then a fortnight of Colomycin and then a fortnight of Tazocin and back to Mereopenom and so on…

This will hopefully keep my head above the water whilst waiting for my call but being on iv’s just for a fortnight is a lot of work let alone to not have any breaks in between course’s so I’m a bit anxious until it becomes routine.

My CF nurse talked to me today about waiting for a call and being positive, to get on with life without jumping at every call and to think about planning things I want to do with my life now if the call never comes, because unfortunately it is a sad reality that it could happen.
I wouldn’t risk going abroad (although I would just love a summer holiday again…) but she suggested things like going for a weekend away and seeing a show at a theatre and such like so that’s another thing that I’m going to have to start thinking about over the next week or so.

Tomorrow my iv delivery should be here, I did have one dose today, and as much as I think Mereopenom is the best iv for my lungs it has awful side affects, I vomited almost immediately and it wasn’t pleasant. I’ve got this to look forward to tomorrow, but after a few day’s it tends to ware off.

I’m feeling quite low tonight, Stefan’s at work and I’m reflecting on the day and what was said. But, it’s me and speaking and thinking on a positive note, two weeks suspension gives me a chance to rest lots, get my iron level’s up, have my phone on silent so I don’t have to answer every call and work on getting as strong as I can.

I’m determined to get through it, it’s just one of those days you are glad to see the back of and you seriously need a hug.