The week of Dr Chris and the Broken Rib.

And like that, another week has come to an end. Another busy and eventful week with A&E visits, The rather fabulous Dr Chris at the RFH Emergency Dept, a broken rib, an overly opinionated man on the bus telling me I was dressed inappropriately for this time of year...and no- it had nothing to do with the lack of clothing I had on. More the opposite. He told me that my need for my winter coat and scarf was ridiculous- but, what he didn't know is that I am always cold. And I thank my not-so-perfect kidneys for this. I think I once read that impaired kidney function not only leaves you exhausted, full of water retention (even though you're on limited fluid intake)- it apparently makes you feel cold even during the summer. So thank you kidneys for yet another unwelcome symptom.

Anyway, the kidneys are becoming old news. I mean, they are still the reason I am writing this blog, but come on, lets focus on Dr Chris. He's far more interesting and good looking. And plus, there has to be some silver lining to a late night A&E visit. It's just such a shame that you (I or anyone) never looks their best in a hospital waiting room. I hadn't planned on visiting last Monday night, cos trust me, if I had, I'd had bothered to do the full outfit change, make-up and hair just so I could spend 2.5 minutes with him while he reported back on my X-Ray. He casually told me there was nothing to do for the rib- other than to continue to breathe and take pain killers. He did remember me though (BONUS) and after a brief chat, I managed to find out that since I was last on a ward, he has been permanently placed in A&E. (Good news- so next time I do find myself in the emergency dept, I will make sure he knows that I have more to wear than an extensive range of Primark and Minion themed pyjamas). I was kind of hoping he'd need to examine me a little bit further- but no such luck this time. I joke, but I'm actually doing well for me. No hospital admissions since February (If we don't count the 3 A&E visits).

In other news, I've been happily Tweeting away still trying to make it big and live the Social Media dream. I managed to find a man who had the same operation that I am waiting for 8 years ago. He is still Diabetes free and generally doing well after living and battling with Diabetes for 31 years. Secondly, (and quite excitedly) I was contacted by the NHS Transplant/donor people (through Twitter) and they have asked me to get on board their Organ Donation Awareness Week campaign. They need me to tell my story; submit a photo and explain how I ended up here- in this whole mess.  
I may be required to talk to journalists, chat on the radio, do interviews etc. So another exciting thing to add to my bow- another step towards meeting David Beckham!!! (IF, IF, IF anything positive is to come out of this experience) We need to inform people and make them aware about the current need for organs;  that we need more people to Opt In and join the Donor Register. There are currently 6.500 people actively waiting on the transplant list today and 500 people died last year while waiting on the list last year. This is why I agreed to do my part. And what's horrendous, is that I would never have even considered joining the donation register if I hadn't have been one of the people actually waiting for organ(s). It never even crossed my mind to enquire/ do my part to help save a life. I'm sure I'm not alone in this thinking, but since I am faced with this situation, I need to turn it in to a positive and do something worth while with my life while I still can.

I also contacted a guy on Facebook that shared his experience when someone accused him of injecting recreational drugs at the bus stop, not realising it was Insulin. I tried to offer my support as I've had a similar situation in a restaurant a couple of times. Anyway, I had a brief conversation with this guy called Ben over social media. He's currently trying out this continual blood glucose monitor and I asked him about that as I am getting one fitted next Friday. I have to wear it for 2 weeks (as a trial) but it means that I just need to scan the gadget to get my latest sugar levels and not prick my fingers each time. This isn't available on the NHS yet and is fairly pricey to run on a full time basis- but if the trial goes well, maybe I'll end up investing in this super-sleek-state-of-the-art-diabetes-scanning-systems. However, when I weigh it up, it's this or 3/4 new pairs of trainers a month that I'll be spending- and tbh, I know what I'd prefer to be buying right now! 

I can't believe it's been a month since the last time I was writing/ moaning about this- but this coming Tuesday is the Kidney consultant again. Its the day when I have 4 appointments one after the other. The consultant, the psychologist, the co-ordinator etc. How can it be here again? Who's around to celebrate surviving another month of Kidney interrogation? Anyway, I think I am going to invent a show called I'm a Patient Get Me Out of Here. I'll sell the concept to ITV or Channel 4...

I've been trying to find other bloggers out there in similar medical situations to myself. I just think there is so much we can do if we club together. I'm just one very small person trying to take over the illustration world while simultaneously trying to teach all diabetics (and non diabetics) that Diabetes is no joke. That Diabetes can be life threatening if not managed and taken seriously. That's one big task for one relatively little person. 

Thanks for checking in with Kev this week. The fight continues. Much Love xx

Getting Real

Near enough another week has passed since the last post. I haven't managed to post nearly as much as i had planned to/ would have liked either but, it has been another exceptionally busy week- but its been a good busy; by which I mean I only had one morning of appointments. I therefore had plenty of time to do what I wanted to do for once and not waste time sitting in a waiting room at the hospital. So now the summer hols have started, I've completed my first year as a qualifiedTA; the sun is out and the coffee is flowing. I've also managed to do some drawing this week too- so all in all its been a pretty good damn week.

I know that you're not reading my blog to get a minute by minute run through of my life events, so now lets get onto business...Tuesday night I attended a Transplant talk at the Royal Free. It was lead by two leading consultants from the Kidney and Urology department and three transplant patients. Amazingly, I didn't know either of the consultants as I've normally met most the doctors at least once before!

The talk primarily focussed on Live Transplant Donors/donations, and although this isn't personally relevant to me, it still lead me to ask questions and gain more of an insight into the overall procedure involved with a transplant. Two of the guest speakers were brothers. One brother had given the other a kidney nearly 4 years ago and the other speaker was an Italian lady who had received a kidney from her mother. She was lucky as her mother flew to the UK to donate the organ, but also that her husband also proved to be a successful match- if need be. She actually said that she decided to go for her mother's kidney over her husband as she was older, and therefore she would keep her husband's kidney for a later date for when/if she needs a second transplant. It brought some humour to the room if nothing else!

The hospital had informed me of the talk weeks ago and I had planned to always go. However, on Tuesday morning I began having very strong doubts. I wasn't sure whether I'd loose more than I'd gain. Did I really need to know the ins and outs of the whole procedure? Do I need to know what the scare will look like and that I'm going to have a Central line in my neck for 4 days after the op? And please note- I'm not talking about the Central line on the underground either. I mean a fucking great needle in my neck. Something I have had once before, and something I REALLY do not want to happen again.

It does seem that the live donor transplant is much more straight forward- if you can find a match. The waiting time for a live transplant is less than a year and the patient can be out of hospital in about 4/5 days. I however, do not have this option as the doctors said that due to the way my Diabetes manifests itself, any new kidney would not survive as the Diabetes will attack it like it has my own kidneys. The new pancreas is to give my body a break from the strain of living with Diabetes (for 17 years already)  and allow the new kidney to work properly. On average, a transplanted kidney lasts 12 years if there are no other medical issues. For me, my chances of the new kidney lasting that long are significantly reduced due to the possibility that my Diabetes will return after 5 years of receiving the new pancreas. When I heard this, I wasn't sure whether it was worth going through the double op, the double scar and more than double the stress for something that doesn't seem to have lasting results. However the doctor said that my body needs a break if only for a couple of years being Diabetes free.

I learnt a few new things at the talk; like what a complex and complicated system this is. The way that potential matches are identified from blood types and tissue types; how there is a partner pairing/ swapping system in the UK; how the organs get allocated and that the Transplant Head Office is located in Bristol etc. Moreover, HOW VITAL IT IS THAT WE ALL (IF WE CAN) SHOULD BE ON THE DONOR LIST. There are so many thousands of people just within the UK waiting for a kidney. It should be an 'Opt Out' system rather than an 'Opt In' system. It just should be law that everyone should be on the donor register. Until this whole thing became relevant to me, I never ever realised the importance of being a donor- I suppose like a lot of things, until something impacts you or a loved one directly, the significance of something is not realised or acted on. Over 8,000 people are currently active on the transplant list needing a kidney.

Sitting in the crowds, I counted myself as one of the lucky ones. So far I've managed to avoid Dialysis. So far, I am still able to carry out a 'normal' daily existence. Yes, I get overly tired but I am still able to go out, see friends, work a bit, draw and see friends. I was also the youngest one there so hopefully my recovery will be faster and smoother than some of the 60 year olds in my position.
Actually, apart from stupidly hurting my rib this week, medically I've had one of the best weeks I've had in a while. I've been less tired and I've actually managed not to have a nap in the afternoonS. This means I'm WINNING AT LIFE this week- lets hope it continues. 

The talk lasted 2,5 hours and gosh, I felt like I'd been there for days by the time we left. (My best friend came with me). And, thankfully he did as I would never have managed to get home without him. By the way- Best Friend, if you're reading this, you know who you are and thank you for being with me. 

So, for now, I'm going to say too-dah-loo, farewell and please come back to read the next instalment of Finding Kev. Heres to another glorious weekend and if you want any further info about registering to be an organ donor, be in touch.

What's Up Miss?

Good afternoon folks!
I've been away from my screen for much longer than anticipated due to unforeseen circumstances. Circumstances that involve job hunting and general adult-life-stuff. Stuff that stresses me out.

So this week, I've had a lot on my plate. Not only have I had the appointments, I've been applying for TA jobs ready for September. No application or interview is particularly pleasant, but I have so many gaps in my CV for taking time off for hospital stays or operations- I hardly look like the most reliable applicant. I also never know how much to declare at interview. Do I play down my Diabetes and related issues or do I tell them everything? Oh by the way Mr .........., my kidneys are about to full time fail on me and therefore, I maybe here one day and gone the next. I.DON'T.THINK.SO.
Realistically, it does look like I have about a year to 1.5 years until anything is really going to happen (if things stay as they are).

I never know whether to push myself that bit harder- Maybe, by being SO busy and distracted, i'll shock my kidneys into working again as they won't have any other option. Maybe I will be one of those miracle stories in Love It! that headline- Girl With Failing Kidneys and on Transplant List Makes Full Recovery. Who knows? If I am currently doing 2 days a week at work, with a few more early nights and less socialising,  maybe 3 won't be a problem. I'll just have to be disciplined about making healthy lunches and getting enough sleep. BUT, WHO THE HELL AM I KIDDING??
I can't stay awake long enough to have one day at work and then go to the theatre in the evening. I fall asleep every time i take a bus, sit on the sofa or sit at my desk to write. How the hell am I going to manage 3-4 days a week a work? I hate doing nothing. Just the thought of 'nothing' stresses me out, but I also know that 1. I have these medical issues that don't make things straightforward or easy and 2. I totally understand that I am a big risk for an employer at this moment. However, the last few weeks, apart from the tiredness, I haven't been too bad. My weekly iron injections have now been increased, so hopefully this will improve on the tiredness, and soon enough I'll be back giving Wonder Woman a run for her money. We can keep dreaming...

I have my big Diabetes appointment tomorrow. Not seen the consultant in 5 weeks- that's a long time for me. I also have the nurse who I see weekly. I have a big decision of my outfit for tomorrow's appointment as the last 2 weeks when I have gone to the hospital, I've had various comments from both nurses and consultants about my handbag, shoes and trousers. All wanting to know where certain items were from etc. I also seem to have the same pair of Ash shoes as 2 of the docs. At least I now I'm bang on trend with the RFH crew!

A Week On- Bloggo no. 5:

I've now survived my rather intense day on the third floor Kidney department. It’s now all over until next month- August 1st to be precise. (The appointments always fall on the same day). Thank you to all the kind souls that went out of your way to message me to ask how things went. Just knowing that I’m in your thoughts makes everything that little bit easier to cope with. This heat however, is not so easy to manage. I’ve been on a 35 minute bus ride and I’ve had to come home to shower. Bring me my winter coat over these temperatures any day of the week!

So, if there is any good news in all this, its that the kidneys are currently remaining stable. There are no significant drops or changes since the last lot of bloods. The down side is that I feel shit most of the time, but until things deteriorate a little bit more, there is nothing to be done. I think I am happy about this. I was dreading hearing the word DIALYSIS yesterday, and thank goodness G-d heard my prayers. I suppose, we just need to hang on in there and remain busy and positive. On the downside, it means that my life is sort of on hold for a bit longer. It means that I could be hanging on for about 18 months before I have the transplant- and then the recovery is a whole other issue. At least if the op was done sooner rather than later, I could start focussing on the future. I feel like I’m stuck in a limbo at the moment. All my friends are getting married and waiting for babies; having their bags packed by the door ready to give birth and I have my bag packed….ready to receive Kevin and Patricia. Lets hope we get the call. 

I’ve become so nervous answering the phone recently (especially when it’s a number I don’t recognise- the Uber driver must have thought I was barmy when I kept telling him how pleased/relieved I was to hear his voice, and that he wasn't the Oxford hospital call I thought he was)! One thing I did forget to mention is that my double transplant happens to be in Oxford and not at the Royal Free. I will be whisked away up there for 2-4 weeks approx depending on how smooth the surgery goes. So, if you’re planning a weekend away or a trip to Bicester, try and hold on. You can combine it with a visit to see me at the Oxford University Hospital! I do like a good trip to Bicester Village, I have to say…

Today i was asked to attend a course at Jami- It was on Borderline Personality Disorder. It was interesting and informative as well a good distraction to everything that’s been going on. I met some fascinating people that shared their struggles; and although they are completely different from my own, it was a great reminder that we all have our own battles to fight. Facebook is great, I use it regularly, if not too much, but the lives we portray on social media might not necessarily be the full picture. It’s easy to think that everyone is having a dandy time, out partying and holidaying out in Israel, but remember there are always people worse off than you. I try and tell myself this- especially on a bad day. I try and keep strong by looking at the good things in my life. Actually, I like to note the developments in my life from where I was this time last year or 2 years ago. I know my kidneys were not in such a mess this time last year, but last year I had not qualified as a LSA, I was not in a job that I actually love and don’t mind going to each week; I have some truly amazing friends- as well as now having a couple of extended/ adopted nieces and nephews that I get to watch grow. So, when push comes to shove, its not all bad. 

The one thing that does get me down however is when I see young girls with their mums and dads. I had a wonderful childhood, but I miss those times. The fun and easy times where all this serious adult stuff didn't get in the way. I wish I had kept more memories and appreciated the family times more when we had them. I remember my dad taking me to school on the bus each day. He would walk me to my classroom and read the lunch menu for the day. He would joke by telling me that we had monkey eyeballs with frog pasta to eat or cat tails with broccoli. All the other girls in my class loved my dad, and to this day, he is still one heck of a person who doesn't deserve the shit I put him through. That goes for all my family though. I don’t think my dad has read my blog yet, but if he has, I LOVE YOU DAD. Or, if he’s not reading it, and you are AND you happen to see him, just remind him that Jess thinks he’s a very special person…

Keep reading folks as I’m genuinely finding these entries really beneficial to me and my current state of mind. Keep drinking water in the heat and catch you soon. Love, Jess

So, I’ve had a few days away from the screen due to being at the hospital on Friday and having my best friend’s wedding yesterday. Although I’ve not been physically typing, the blog has not been far from my mind. I have been thinking about my feelings; whats been going on medically and just general life events related to my Diabetes that you might find of use/ of interest.

I am however just going to take a moment to recognise something completely unrelated? 

My Uber rating has increased from 9.4 to 9.45. I’m on my way to great things- I can just see it…

Seriously though, there has been a lot going on. I had some bloods done on Friday and I’m praying for my results to be stable. I will receive them in one of my appointments this week; the one with my amazing consultant Dr Woolfson (not the psychologist). Each time the Creatinine drops, I feel that bit closer to Dialysis, that bit more concerned for what my future holds. I just hope I have a future. Each time my kidney function declines, the margin between being well and being ill decreases and everything becomes that bit more crucial. My margin for having ‘an off’ day is constantly on the decline as I don’t have the luxury of anymore ‘lucky escapes’- my body can’t handle any more ‘off days’. An iffy tummy for me usually results with a mid-night visit to A&E and another missed day at work.

I have found that my only way of coping is by taking each day literally as it comes. I break my day in to 3 segments- a morning, a lunch time and an evening. Each third I remain out of hospital has been a good day. I no longer plan a month ahead, or even a few days in advance as I have learned not to push time away; not to take time for granted- just to focus on the now rather than ‘the next’. How can I enjoy the now if I am always looking beyond and what I am going  to be doing in a few hours or tomorrow? I’ve learned the hard way as on more than one occasion, the ‘thing’ I was so looking forward to, has had to be cancelled or postponed due to an unexpected hospital admission. 

If anything vaguely positive has come out of this transplant, its me learning to appreciate what I have now, in this present moment. I used to fall into the crippling habit of looking back, regretting my past and my previous decisions and say to myself….If only I could go back to when I was 10, I’d do everything so differently’. I’d look through rose tinted glasses and think that ‘if I found that perfect job’ or ‘earned X amount of money’ then I would suddenly be happy and all my woes would miraculously get fixed. This is only damaging and unhelpful, trust me.

I can’t allow myself to think about the transplant and all the \what ifs’. It maybe naive or burying my head in the sand- but at the moment I need to put all my energies into getting through the next few months and staying out of the RFH. Jill, my Diabetic nurse once told me that the patients of hers that had a successful transplant were always going to do well as they had the right mental attitude. Similarly, those that didn’t make it, were never going to. This was caused by their inability to focus on the positive outcome, the end goal, the good in their lives. I have to envisage the future I want, the future I see myself having- whether that’s me walking my 5 dogs on a beach or me running a global illustration company or me sitting at home with 4 children. It doesn’t matter what the goal is, as long as I have one far away from the hospital dominated life I’ve been living for way too long.

Over the past week, I have noticed many of the common side effects of Kidney failure as listed on the internet and in the leaflets. I’ve become increasingly tired/ shattered/ exhausted/ knackered etc- so much so, that I’m requiring an afternoon nap most days at the moment; and this lack of energy is really getting me down. Your twenties and thirties are meant to be when you’re at your most vibrant, most energetic, able to party all night etc. I can party until 3.30pm before needing a snooze. I know this as I keep falling asleep on my friend’s sofa-  and thats after the nap I’ve had on the bus ride over to my dear friend! I’ve also been experiencing pain in my legs. They ache constantly and feel like they used to after a major leg session at the gym- although, who we kidding…we all know the closest I’ve got to the gym recently was to the gym cafe!

The doctor said that all the symptoms were normal side effects, so I suppose the relief comes in the fact they are not worried. I just need to keep busy, stay positive and keep doing more of what makes me happy…