I make promises re what I'm doing with this blog then promptly break them! But the aim is going to be to write shorter, more regular blogs, about life now. So not always transplant (although I'm guessing it will still feature prominently as its a huge part of my life,) but equally so is going out a bit more and trying to enjoy life, any singing or drama bits I'm doing, and other life stuff. I am also hoping that some of you will start subscribing or checking back each day/week (hint hint) so I can phase out tweeting that I've posted here. I want you to read because you want to, not bludgeon you with it! Also more comments and shares here would be great as I LOVE to hear from you.

Anyway onto the blog! So I went to Harefield on Thursday and it was a long old day that I'm still getting back to speed from. We left the house at 7am and returned home at 7.30pm, not unusual for transplant patients who come from all over the country to seek Harefields expertise. Anyway, due to emergencies in the hospital, my scheduled CT scan to check my bones was a two hour wait :( I went between departments to try to get things done, but everywhere was very busy! It all got done in the end and everyone is so lovely, the level of care you get is incredible so the waits are worth it. The blood room have nicknamed me trouble as the have such difficulty bleeding me after having awful veins that are repeatedly used for 28 years. It took 4 attempts this visit and a rather nasty bruise but at least we got it in the end and I do have a laugh with the wonderful blood ladies, affectionately known as the vampires! 

I did my lung function and then headed out for a little while before seeing my consultant in the afternoon. We took some toys and biscuits to the Dogs Trust because, those little furry faces are so cute and it's such a good cause. We grabbed something to eat and headed back to the hospital. 

I saw my consultant and fed back to him firstly about my other appointment with Rhuematology, then about how I've been feeling with my new medication regime.

 To cut a long story short, we think I have adrenal fatigue where I'm not producing my own natural steroids because I've been on manufactured steroids for so long. According to my test results it seems that even though I'm taking steroids because of my Cystic Fibrosis I am not absorbing them fully into my system, therefore I'm getting less of the actual dose I'm taking, keeping up?! We hiked up my steroids to 30mg which is a very high dose for long term. I can't be kept on that dose even though I feel so much better fatigue wise, because steroids are horrible, destructive drugs that cause a list of side effects out the door and round the block. My dr told me I'd have the skeleton and skin of a 90 year old (steroids dramatically thin both) in 3 years if I continued on that dose. So we are stuck between a rock and a hard place. We made a deal that we would both commit to getting the dose down but at the pace that was right for me, in other words extremely slowly. He said that he can't feel the way I feel so I need to be the driving force behind it and be very subjective about how I'm feeling. So if I'm becoming more fatigued again, to try and think if it's because I've been very busy, stressed etc or is it down to steroid reduction. I can't tell you what it means to have your consultant tell you that he trusts you to do that and that they realise you are the only one who knows how you feel. Simple but something lots of doctors miss.

The steroids will be weaned by 1mg a month so nice and slowly and I'm really hoping this is going to be something that helps me even for a while. I'm not needing naps in the day anymore and I'm able to think a bit clearer as to what I'm doing instead of being too tired to function. I still get tired and I have to plan my journeys to make use of public transport and lifts, not pack too much into one week but I'm better off than I was.

The side effects I get from Prednisone (steroids) are pretty grim, other than what I've already mentioned, moon face (fat face), weight gain, bloating (I look about 5 months pregnant at the moment) mood swings that leave my parents hiding under tables, depression, insomnia, water retention, hair thinning, skin thinning, bruising....not to mention the effect on internal organs. My diabetes is also affected so I'm definitely kept on my toes right now! And feeling the least sexy/attractive ever 😉

A couple of positives were lungs are doing great so not back for those for 6 months! Bones are actually slightly better than we thought, which again points to me not absorbing the steroid dose properly. And I'm being referred to get help with controlling my diabetes again now the steroids have made them go a little crazy and also referred to the pain team. 

It's quite hard mentally with all this going on as well as the moods/depression that the pred brings but I'm trying to take it day by day again. 

Anyway thanks for reading, share, comment, subscribe!!!!! 

Blogging just doesn't come as easily as it used to but I do miss it and hearing from you about your own stories and lives, it's what I love about blogs. Anyway a lot has kind of been going on and I thought I could probably write a coherent blog as a bit of a way of sorting things out in my head a little.

So far this year I have had 21 different hospital appointments. In the scheme of 'normal' folks that's a lot! But in the scheme of CF or other illnesses I guess it's not that bad. It's more confusing when you are transplanted so technically a 'healthy' person and getting used to not having to go rushing to hospital on a regular basis, learning to unclench a little. Then bam you're back and forth a lot again and the anxiety and tension creeps back in. It makes for quite a head f**k pardon the expression.

So, why so many. Well, in no particular order, I broke my foot and was in plaster/air boot/on crutches for 5 weeks. I have osteoporosis and am on Steroids permanently after transplant which also reduces bone density. I was walking along a station platform on a lovely sunning evening and suddenly felt a cramping in my foot, odd. Carried on to my train, had dinner in town, walked around London and came home with a sore foot. Basically I walked round on it for 3 days, decided it was hurting so I should go and get it checked and yep.... Fractured my 4th metarsal near my ankle doing....absolutely nothing! Once again the whole healthy back to being dependant again further exacerbated the head f**k scenario.

In addition to that, I have needed a review on my liver, something that was due but has always made me extremely nervous about since being diagnosed when little. I hate the word veins (hard to type it!) and anything to do with that makes me go cold inside. So appointment with new doctor and an MRI scan, but thankfully everything is ok. I am having a bone density scan on Thursday to check out what they are doing. I've also started seeing someone for problematic sinuses and found out they are inflamed, gungey, have polyps and a deviated septum. I have also been experiencing a lot of pain lately. Always had a lot of back pain but it has started to effect my hips very badly, my knees and joints, in particular my hands which are hindering my work as a cake maker. So I last week I went to see a rhuematologist. Very mixed results there! I am very hypermobile, double jointed or just extremely bendy. It means I can do stuff like this and bend forward to put my palms flat on the floor with ease (I genuinely did not realise that this was something not everyone can do). 

I am also at Harefield, my transplant hospital on Thursday. The fatigue which has been a part of my life for the last few years has been hideous these last few months. Combined with everything else I have felt like I'm going backwards. It's not a simple tiredness but bone aching exhaustion. I'm desperate to live my life while my lungs are good and I know how precious this time is but its like one issue has swapped for another and I am still very restricted. People don't see the days inbetween the ones where I push myself. Anyway, I have had more iron infusions but didn't help. My consultant could see how desperate with at my last appointment. He was stumped. After looking back through all the tests I've undergone he found an anomaly and decided to try me on ramped up doses of steroids. My initial reaction was panic. Steroids make me bloat up, make me crazy with emotions, cause deep depression and have some seriously horrible damaging side effects. The theory behind the decision is that patients on long term steroids can sometimes stop producing their own natural steroids, known as adrenal fatigue. Well, I felt better almost immediately, it was manic first of all as though I was a cartoon character zooming around, but that soon eased and I just felt better. For the first time since my transplant I felt that THIS was how I had always wanted to feel. It sounds so stupid but it was like a weight was lifted and inside I was dancing! With hope and possibilities. Anyway I was still contending with side effects and diabetes going out of control etc. steroids are too dangerous to remain on this dose but it seems we may have something that can be treated. I feel like I'm at the beginning of a long road to finding the right treatment vs side effects for me but there is a hope that I thought was gone. 

Anyway that's all for now but I already have a few ideas for blogs to come soon. Hope you haven't all fainted with shock by the fact I'm blogging!