Tuesday, 1 September 2015

Blog Q&A

I know, how much blogging am I doing?! 

I'm actually loving writing again and it's part of my plan to get out of a pretty dark place I've been in. Anyway I've been enjoying thinking up ideas to blog about and taking photos of what I'm up to ��

I've had some lovely comments and messages from you guys. One actually reminded me that I kept saying I would do a Q&A session here with anything you wanted to know. Well I'm all organised now, I even have a book I'm writing ideas etc in so if there is anything you fancy asking, fire away. 
I think there is some wariness about what you can and can't ask, what might upset me etc, but please, let me be the judge of that. When I get enough questions I'll do an answer blog. You can tweet, email, comment on this post (you can also do so anonymously if you'd prefer). This blog has always been a very cathartic and healing place for me so it seems that this might be a good idea. If you know someone waiting for transplant or anyone who needs support, send them here to ask anything they want to know, I might not know the answer but I'll try my best. 

Also, doesn't have to be transplant related! 

Right, steroids are keeping me awake with nightmares (hence blogging at 02.15am) but I am absolutely exhausted so am off to try and sleep ��������


Saturday, 29 August 2015

Steroid wars

Had some lovely tweets and messages about my ladt post, it's lovely to know you stick with me even through the quiet times. 

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!!!!! 

Monday, 24 August 2015

Trials and tribulations

It's me! 

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). 

Combined with my harsh medications means this can cause a lot of pain and problems. I need to see a physio to tell me how best to deal with this because bending them too much will cause me more issues. I also need (get ready...) a spinal MRI, X-rays on hands, Ct scan on hands, possible assessment for sprints on my fingers, referral to a pain team because even all that is causing problems, there are no real answers for what they can do. The pain does get very bad and brings me down a lot. 

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! 

Wednesday, 18 March 2015

Random acts of kindness

I decided to keep going with my #40actsof kindness blog because it got a good response last time and I want to encourage others to try it! Do something generous today, I promise you'll get back more than you give out. 

11) Gave out lots of hugs, took more biscuits for my classmates, and ran after a lady who dropped her babies hat.

12) Offered someone my seat on the train.

13) picked out some special friendship quotes that fitted my closest friends and text them to them :) 
14) I sent a card to my friends little boy who is lovely! 
15) I sent another card to a couple of friends in hospital.
16) I drew a special birthday card for a friend.
17)I bought an Easter egg for a local appeal.

18) I wrote to a young cf lad to try and encourage him to stick to his meds routine and to eat which is always hard when you feel so poorly

19) I have a few friends going through hard times, so I've been trying to support them and let them know I'm here to help if I can.

20) I bought some 'just because' presents for people today.

21)After my clinic visit I  bought my mum an ice cream from @ScoopGelato.

22) literally cannot remember this one but I definitely did one! 

23) Missed my good deed for the day so I will make it up when I can.

24) Today I've donated to Comic relief. 

25) today I took these cakes for my special Irish girl ;) gave out a lot of hugs, and bought some comfort food for a friend who's having a tough time. I also received an RAK from the wonderful Roberta Pudney and her lovely girls. 

26) Mother's Day, so snuck down in the early hours to hang some best mum bunting ;) went to stay with my friend Gemma and her beautiful baby Louis, I bought a couple of little gifts with me.

27) I helped cook 1 meal, and made another myself for baby Louis so his lovely mummy could freeze them in portions. 

28)Was up for another scan at my hospital and sent a little care package up to a friend who's staying on the ward.

29) Mummy Tremlett's birthday today so I made her her favourite berry pavlova :) 

I would LOVE to hear if you do a random act of kindness, comment and let me know :) 

Friday, 27 February 2015

Give a little love!!!!

Ok so I'm not really religious, and I don't usually give up anything for lent. But this year I heard about an idea which I've kind of adapted for myself. Basically instead of giving up for Lent, you give OUT in the form of giving to others. This is something I feel really passionate about. I've been in some very bad situations in my life, it's been tough, and scary and horrible and exhausting and some days it still is; but there have always been people who have given an act of kindness at those times to let me know I'm not alone. I've been very lucky and have already taken steps this year to start giving back but this was a more official route. There is so much hatred and sadness every time you turn on the news, why can't we all in our own small ways make people's lives better each day? It really doesn't take much.For me, a chat with a nurse while I'm in for treatment makes me feel loved and welcomed, someone pulling out a mat for me in drama class because I'm knackered means tonnes because someone cares, a hug, kind words, being polite, a lovely text, a little card (post in particular makes my day!). All cheer me up. Most of these things are free or less than a couple of pounds. Anyway here are my last 9 days of RAK's random acts of kindness, I hope they inspire you. 

1)  donated to charity and held the door open for someone who struggled to walk.
2) bought my mum some flowers and gave money to someone collecting for charity
3) sent some pretty cards to friends who needed cheering up.

4) took homemade cookies for my drama group
5) treated my doggy to a new chew and donated to comic relief.
6) I bought tea and a brownie for a homeless guy on a freezing miserable day. By far my favourite so far.
7) I forgave the dog for scratching me, made my nephew his favourite cheesecake and bought him and his sister some sweets.
8) signed my dad up to eBay and PayPal.
9) said thank you to someone who has helped me with flowers, cookies and a card.
10) today I am donating to a friends just giving page and due to popular demand from Facebook I am being kind to myself while I'm not feeling so good watching a film and having a bit of a rest. Being a bit kinder to myself keeps coming up so maybe I'll incorporate it a bit more despite feeling it's a bit of a cop out ;) 

 This sounds kind of corny but, as someone who has been there, when you look back on your life at the end you will be happy to know you made a difference, it's what will matter. You will also remember those who stuck by and were kind to you. So let's all make the world a little nicer, do something nice for someone today, it doesn't have to cost you but make someone smile!  Xxxxx

Monday, 16 February 2015

The future?

I haven't really known what to post here. I wasn't sure if I wanted to talk about myself particularly because it feels strange no after transplant. I am incredibly grateful for my second chance and there isn't a day that goes past where I don't thank my donor for giving me this extra time. I also know that there are many people who weren't so lucky. Either they didn't get the chance at a new life or things went badly for them, or they are experiencing serious bumps in the road. 

So in a way I feel that if I post about negative points post transplant I will be doing others a disservice, will appear ungrateful or would dissapoint others. But this blog was always supposed to be honest and if I can't be honest there is literally no point writing. Also I have recently realised that by sharing negative as well as positive times doesn't diminish a gift that even if no one else believes me, I am eternally thankful for, neither does it diminish other people's struggles. 

At the moment I'm having some bumps in the road. As I have mentioned before I have a virus Epstein Barr virus that is related to glandular fever. Because I am immunosuppressed I will never be rid of it and the level in my blood will jump up and down randomly. Unfortunately this makes me feel pretty bloody awful. If you have had glandular fever you will know the crippling fatigue that comes with it, imagine that this just randomly hits you for weeks or months at a time for the rest of your life and that's what it's like right now. Recently the level doubled in a week and was the highest I've experienced. It's been a scary time not feeling well and not knowing what's been going on. My hospital were awesome and got me an emergency appointment to check me over. I spent time with my consultant who was amazing taking time to reassure me. As a result of high levels of EBV you become at higher risk of developing lymphoma, which is also pretty scary. So I've been placed on a drug, not specifically for EBV but which might help, there is very little that can help with this particular virus. I'm also getting a Ct scan to check for anything untoward. 

I'm not done yet though. I have low iron levels so just got an iron infusion to hopefully boost those up. Constant headaches have been revealed to be the result of severe sinus disease so I have also been referred to ENT clinic to get that investigated, it could also mean a sinus surgery at some point. 

Side effects from iron and virus meds are making me feel even worse. I can nap and sleep all night and still be exhausted in the morning. I have tonnes of headaches, stomach aches, joint pain, muscle weakness, nausea, and this bloody uplifting fatigue that makes me want to shut out the whole world and just hibernate. 
I want to maintain a life. But it's very hard to balance this and the fatigue. I miss friends, book stuff in, cancel it, get down from being stuck inside. It's really hard physically and mentally. I do a drama course on a Saturday and it's been unbelievably hard to get to it, the people are amazing, the tutors are fantastic and I adore it but it's hard too. Drama, singing etc is what I've always wanted to do with my life. It's kept me going through some god awful times. But even now on the other side of those times it still seems like a dream that won't ever come true. Not because of la k of persistence, effort, etc but because my body and energy is letting me down again. I know people who work, study, live independently post transplant and I feel a world away. I couldn't work or study full time, I definitely couldn't run a home. Im still reliant on my mum despite not wanting to be. It is very hard. The life you see opening up before you is limited and worse than that limited by the body that's always caused you problems. You hope that this is behind you now. I also feel a need to do what I can while I can. There are examples all around me of lives cut short or broken by illness. You are always aware this could happen to you. 

It's a really tricky road and hard to navigate some times. It's great to have a drive within you, it's what's for me this far, but does it become a bad thing when you are thwarted by something maybe you can't overcome? 
I hope I don't offend anyone with this post it wasn't intended to. I just need to vent some of these feelings in the hope it might help. 

Tuesday, 6 January 2015

There but for the grace of God go I

Being a member of the cystic fibrosis and transplant community is a huge honour, to know incredible people, to follow their journey's, sorrows and joys, share in triumphs and have a degree of understanding that no one else who haven't experienced these things possibly can. CF sufferers aren't able to meet much face to face as they can cross infect each other with dangerous bugs so relationships are formed online and become just as strong to us (if not stronger) as people who see each other physically on a regular basis. They are supportive, caring and have created some beautiful friendships.
 There is a black side to this though. You see a lot of friends suffer, battle and die. It's a risk of making such friendships but makes it no easier to handle. I will be 28 this year and off the top of my head I've lost at least 9 good friends plus a lot of faces and names that while not talking so often to you still follow their journey and stories and it still hurts to hear that they have passed.

I think the common misconception is that you expect it to a certain extent when dealing with serious illness, that friendships online can't be THAT close, that you somehow get used to it. But you don't. It hurts, a lot and aside from the loss of a wonderful person, it makes you fear for your other friends and for yourself. It is a shock reminder of what a tightrope CF and transplant are, one slip is all it takes before things tumble away and that is bloody terrifying.

Recently the world has lost two bright souls. Sinead, a lady I didn't know until last year when she got in touch and asked me some advice as she had been having biopsies because of EBV, the virus I have that gives you a greater chance of developing lymphoma. I was lucky that my biopsy came back clear, sinead was not so lucky and was diagnosed with post transplant lymphoma. A lymphoma which is surprisingly common because of our harsh immunosuppressants. Sinead regularly contacted me asking how I was, what I was up to. She was caring, friendly and truly grateful for the time her transplant had allowed her. I was gutted to hear that just before Christmas she lost her battle. She was a lovely, kind, generous woman who in her last message had simply said that she "was finding things tough".
We also lost a major member of the transplant community, Emily Thackray. You may have heard of her as she campaigned for CF and transplant awareness with a fiery passion. She did tonnes of media work and with her friend set up transplant charity LLTGL. Emily was everyone's friend. A pink and sparkly force to be reckoned with. I followed her blog and journey before I knew I needed a transplant. Her blog inspired me to start this one.she had some bloody hard times, I met her in hospital when she was very sick, I can remember her walking slowly waving to me in a sparkly pink glory. She always had a smile for you and supported everyone. She got her transplant 8 years ago and it was a privilege to watch her recover and get stronger, to see her journey progress as I started my own. Later Emily visited me a couple of times for LLTGL work while I waited for my transplant. She was also one of my first visitors after transplant assuring me it would get easier when she knew I was struggling through a hard recovery. Emily used every minute of her time supporting, helping, caring loving others and making the most of her amazing gift. She got married bought a house, worked as a teacher, and recently thanks to a surrogate became a mummy to a beautiful girl called Sophia. It broke my heart to see her struggle in the last few months with pneumonia, see her improve then plummet again. She received a second transplant but this is an even more difficult operation second time around with many possible complications and recovery longer than the first. Unfortunately these complications became too much and the woman who was so bright, resilient and beautiful passed away. It was only then that you realise the extent of how many lives she truly touched, there were so many amazing stories. She will be greatly missed.

These weren't just online profiles, they were people, brave, caring wonderful people. People I called friends as did many others and they are missed and grieved as friends are.

Being around lives that hang in the balance whether when Ill or waiting for transplant or post transplant is a strange experience. It's uplifting, inspiring, wonderful, difficult, frightening and heart breaking. There is definitely a sense of worry and "there but for the grace of God go I". There's also the stories that inspire and you hope will live on with friends when you are gone. For me it certainly reminds me to live as much as I can, to try and make people happy and do good deeds when I can, and makes me value those who support me. Unlike some I know, I tell people a lot more how I feel for them, I let them know they are loved, or that I appreciate their friendship or value them. And if the one thing my wise friends leave behind its that gift.

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