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!!!!!