In my defence I've had a rough start to the year with our first IVF cycle with our surrogate ending with a chemical pregnancy (see surrogacy blog for more details). So my head has been all over the place, one minute I thought I was going to be a mummy and the next minute I wasn't. Anyway we are going to be trying again very soon and I hope to have better news on that front next time!
So it has been my birthday and I'm very quickly heading towards the 30 marker! At least I'm an even number now, I'm slightly strange I know...!
Pete and I went for a short trip to the lakes after our bad news regarding the pregnancy, to spend some quality time together, alone and away from everything. I know i really needed it, I'm not sure about Pete. Amongst other things, one thing I hate about not working is the loneliness and troubles it brings. Sat in the same building day after day with only a dog and your thoughts for company. It's dangerous and I really, really want it to start getting warmer so I have the ability and will to get out of the house more often! It's simply too cold to venture out very often, its not worth it with the coughing and breathlessness it brings.
Last Monday I went to see Girls Aloud, yep, fourth time! I think I may possibly have seen them every time they have done a tour. I also booked tickets with my friends last night to go see The Big Reunion tour in May. If you haven't heard about this, it is bands from the 90's reuniting like 5ive, 911 and Atomic Kitten and putting on a massive cheesy concert, it's going to be great!
In CF news I have been told I need insulin treatment and then been told actually I might not do. It's all slightly confusing and annoying and has been dragging on since October! My gluclose tolerance test last October came back saying I have mild diabetes, so I monitored my blood sugars for a week and the dietician decided she wanted me to wear a constant monitor for five days. A small catheter is put in your stomach by using some kind of stapler device (really small needle) and then a small probe is attached which constantly monitors your sugars. You still have to prick your finger four times a day to check the monitor was working properly. You can still shower and even go swimming with this device attached to you so it's not too bad to have attached. I then removed it on my own and posted the probe back to the hospital. Here it is
I then caught a cold and as usual started to get chest pains, was sleeping lots and had very little energy, after taking oral Ciprofloxacin for a week I went to the hospital for a check up. My lung function was slightly down to 40% so nothing major and the consultant decided to have a good look at my medical history and test results whilst I was there. He decided I could need insulin looking at my results and he wants to try me on a new nebulised antibiotic called Azli (nebulised Aztreonam) rather than having Tobi (nebulised or inhaled Tobramycin). He said I needed to be admitted to start the insulin and he wanted me to have IVs on the ward rather than home IVs to get some rest as I looked stressed (I was). So I was put in the waiting list and said to wait for them to call me.
After a week of waiting I felt much better and decided I didn't actually need IVs afterall, looks like two weeks of Ciprofloxacin had done the trick for once, seriously, its a miracle! So I called to let them know and turns out my name wasn't even on the board, someone had forgotten to put me on!
The dietician said I still needed to come in to start insulin as I needed to be monitored. Fast forward two more weeks and several phone calls later and I still didn't have a bed due to lots of emergency admittances and I was getting rather annoyed as I wanted to start the damn insulin and also the nebulised Azli.
The main CF dietician who was now back from her holidays decided she wants to retest me as the probe didn't collaborate very well with my own monitoring. She was very apologetic and explained it seems there has been a lack of communication and misunderstanding with what was happening with me. So yesterday I went for the monitor fitting again and to try the new Azli nebuliser.
She explained everything to me and I will try to explain in how I understood it however I do find the whole blood sugars thing very confusing..... I do get high sugars (over 10) but not really high and not in any clear pattern, I also get low sugars (under 4) so she is worried if I had insulin I would get even lower sugars which is dangerous. If I do need treatment they need to work out what type of insulin I'd need, I didn't even know you could get different types! My HbA1c (a measurement taken from your blood) is 48 which is above normal but a good number for someone with diabetes (apparently the aim is between 48-58). So once they get the results from this monitor they are going to decide what to do with me.
Diabetes is something that many people with CF develop and is called CF related diabetes (surprisingly!). From what I've read it's a combination of type 1 and type 2 diabetes. Mucus in the pancreas damages the cells that produce insulin over time and the body becomes insulin resistant due to chronic infection.
So I go back in two weeks to get my results and pick up the Azli they have ordered for me as I tolerated it fine (I can't get if from the GP as it's too expensive).
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