My Last Hope

Since being told in January that there was nothing left for me, nothing left trestment wise to help my asthma i was preparing for each year that went by for ny life to get worse. My lungs to get worse. Thankfully ive been given a lifeline. I change my local consultant when i move to Cornwall and they have done tests that show i have PID which is primary immune deficiency. As i have this, they have said this is the reason to which i am getting around 15 infections there abouts a year which is not only causing my asthma to flare but also my lung function to permenantly be done and ive now built up huge amounts of irreversable scar tissue in and around my lungs. It suck. The worst thing about it all is this could have been solved years ago. I first had this picked uo 4 years ago but was told there was no treatment when in fact therevwas and there still is. Im just so glad I moved to Cornwall as it now means ive been given hope. So my new treatment IgG transfusion. Its pretty technical stuff and again as I said before, without wonderful blood donors, my life wouldnt be able to have this. Each 20ml of my treatment is a few thousands worth of donors bloods and each week I will be recieving 60ml and that is for the next year alone. If the treatment shows improvement I will be staying on this untill they find an alternative. This could be life. For my first ever treatment, me and my wife watched the nurses set everything up and put the needle in my belly. Next week though its our turn. We will be taking a hands on aproach so that the quicker we learn how to set up the pumps and do everything in a safe manor, the quicker I wont have to keep coming to derriford hospital. Each infusion takes an hour to go through. I can only have a maximum of 20mls through each pump at a time into that specific area of my tummy to prevent damage. Yes it take a long time to go through but once its running, youre free to do what you like, well withing reason. On this occasion, I did have a reaction to the blood product but this was to be expected as it was a foreign body being placed into the skin surface of my belly. Today it is still pretty red, sore and bruised but itll settle. Im just praying this is the miracle treatment that could give me some form of life back. Im not banking on my life to be exactly the same as 5 years ago as thats impossible, I have far to much damage, but even if im semi there I will be impressed. Here is a picture of my treatment

TTFN XXXX

New Adventure But Yet More Stress

What a friggin hell bound few days.

Spoke to our housing officer yesterday who has asked us to get a letter from our mother in law stating we will be homeless by October 6th. 8 hours after i had asked for this letter, it still didnt get wrote so as  you can tell i was pissed. My father in laws answer was well they arnt going there till wednesday so theres no rush. They finally done it at 10pm last night and asked if it was good enough so my partner said yes. Nothing more or less came from her mouth yet her mouth still insisted on saying "oh well dont sound to enthusiastic by it then". I mean come on, are you for real, this is an official bit of black and white paper saying that in less than 4 weeks me and my girlfriend have no home.

On top of all this, our housing officer has stated that they should have given us more notice, what theyve done by leaving it this late is complete unfair...but to be honest, both u and i knew that.

We may have to temporarily get rid of Dixie also which we are gutted about and thats basically because 95% of temporary accomidation doesnt allow animals.

On a semi good note, i had another hospital appointment today with regards to my lungs and immune system. Not sure if you remember, but 3 months ago i had bloods taken, then 6 weeks post that i had an injection and then another set of bloods to see if the injection work. As i had another 3 infections i knew in my heart it didnt work. Aparently my first set of bloods showed my immunoglobbins to be at 38 (these are the bits that fight off colds and infections). Once i had the injection my level should have atleast trippled to 114...mine went up by 4. Yes FOUR. My level was a grand total of 42. perfect. So for some unknown reason my immune system doesnt want to function and even the flu and pneumonia injections i get every year, my body seems to be resistant to which explains why ive still had flu and still had a stupid amount of infections within the last year alone. So now i guess your wondering whats happens about this. Well, u know these amazing people who give blood (my girlfriend and a very good pen friend L(u know who u r)) the blood they donte get divided into three parts, the red stuff to aneamic people, the clear stuff (plasma) to people with low platlet count and the straw coloured stuff to people like me. This is their immunoglobbins so essentially its their immune system. Myself and my other half have chosen to do the treatment at home for atleast once a week for the next year. We will be taught how to administer it through a needle in my tummy and two syringe drivers. I will be gettong 2 very large boxes of fluid donations (yuk) delivered to me to make me better.

But heres the sucky bit, because of our housing situation, we have to do the first 3 months at hospital. Purly because if we got put in a hostel, for one we cant have the drugs delivered there and two if andrug addict sees ive got needles we are open to being attacked. So yet another shit pain in therear we have to deal with.

Well for now. Life goes on and i have to be extremly greatful that not only go i have my wife to be being enthusiastic to help me administer my immunoglobbins but also i have to be extremely greatful for the amazing people that give blood. Without them my weird immune system would kill me!!

TTFN
XXXX

Flipped Around

Everyones entitled to the otherside of the story, the good, the oppsite, the happiness... Well im glad you said yes because today has benn mine and my girlfriends day. Finally. For me, I have knitted 5 more baby hats which make 24 in total and on 4926 more to knit. I have also now raised £110 for AUK and I also managed to get out in my wheelchair for a stroll with my other half and Dixie. But thats not all- my amazing girlfriend has also had great news. Since weve change our diets to being beyond healthy and also stepped up the exercise game, her cholesterol levels have dropped. I was starting to get really worried last year as her level came back at 7.1 which is extremly high and meant she could literally dropped dead from a heart attack or stroke at any point. Last week she had this blood test repeated and her level is now 6.4. Ideally we need it to b at least 5 and even then thats at the higher end of the limits. So we have a little more work to go, but knowing that what we are doing is correct, and that her risk of dyeing from a heart attack has been reduced, we are that little bit happier. Now just to continue our fight with healthiness.I also managed to get my old phone changed over to allow an orange sim to work in it so she also has a nice new smart phone to which shes never had one before. Excitedly as well, the 5 caterpillars that we have been growing for the past 11 days have finally grown into thir chrysilists (please excuse my spelling). We have to leave them 3 more days in their little tub to allow their shells to harder and then we need to trasfer them to their new habitat where we will look after them for 14 days so their wings can strengthen and then we will release them. Being able to help the enviornment gives a sense of happiness in a different form. One you cant explain. Well, I am off to plymouth tomorrow for my lung review. Im praying I can get more treatment. Better control. We will see as only time will tell hey. TTFN XXXX Ps, please keep sharing my just giving page and also fly by with a donation. You would make me so happy. https://www.justgiving.com/Charlie-Hockaday-Williams

Another Appointment And Another Bit Of News

Firstly I forgot to say yesterday that I had the doctor ring me to update me about what they have found about my constant low Phosphate and that being: they need to do one more blood test to rule something out but ultimatly Im going to need supplements because my low phosphate is causing ny diaphram to not contract properly which in tern is reducing the amount of oxygen ive got pumping through my body...grand something else I have to battle with.

I also had another appointment in Derriford hospital in Plymouth today. It was with the immunology and allergy clinic. Initially I though this is going to be such a waste of time, they cant tell me anymore than what I know and as a result they cant actually do any more BUT that taught me.

The doctor was lovely, she talked through everything and explained why she had been asked ny lung doctor to review me. Aparently on the bloods they have taken it has shown that I have very little to if no immune system at all...lower than what it should be for a person on steroids so they have figured it is the huge reason for why I am contantly getting infections and constantly feeling poorly.

To see if they can find a treatment, I got given an injection on the spot and I have to have more bloods taken in 6 weeks time. It takes 1 month for the bloods to process ajd then ill get the results. If the bloods r still low following todays injection, I will either have to start more tablets or have an infusion or injections regularly all depending on my results.

She also stated me on a steroid nasal spray and changed me back to my old antihistamines but doubled the dose compared to what I was on.

Sadly though she did tell me that I shouldnt now or if at all every carry children. Not only could it kill me because my body wouldnt cope but half my meds would either harm my baby or cause further complications. Im gutted, there goes our plans for me to carry our first child. I mean its ok coz my partner can carry, but lets face it, its never going to be the same and ill technically never have a child of my own with my DNA etc. Theres always a bomb shell!!

TTFN

XXXX

Something New, Something Old And Something Different

Tonights title may or may not reflect on the actual string of events that im going to tell you about, but it sounded like a good title so I stuck with it. This morning I have to say, I wanted a lie in...what was I thinking!? 0730 came, and Dixie needed a wee and once I was a wake, I just couldnt re settled so I was up, dressed and breakfasted!! We had to do a quick mad dash to the post office though because with all that went on yesterday I had completly firgit to post mums card and present, so that was the first thing on our agenda sorted. After a spot of lunch, it was decided that the rabbits needed cleaning out and put in the run again to stretch their legs. Thankfully, it was only their potties and the bottom halves of the hutches that needed doing so didnt take to long to sort. Following this I needed a rest so decided to make the rainbow sock rabbit that I purchased at the campsite on Thursady. I have to say though it is very scary and looks very much like those rabbid rabbits if you know what they are. Whilst I was doing this, the girlfriend has started making wedding invitations. Yes, ok, the date isnt set yet, but theres no harm in preperation, especially as it has taken her all afternoon to do this one. Ops. Of course as usual, we took Dixie for a good old walk around the feild twice so she could stretch her legs as after a few days camping and being on her feet constantly I didnt want her cooped up for to long. So, the meaning of the title... Something new: making the sock rabbit Something old: cleaning out the rabbits Something different: we managed to put the tent outer canvas away as the sun came out and dried up the rain!! Update on the finger following yesterdays incident-bloody sore...that sums it up really...oh, that and it still keeps bleeping on and off. At last minute tonight also, weve just managed to book a table at pizza hut in Truro for my other half mum for mothers day. Im going to try really hard not to eat bad things though as I really reallyvreally dont want to put on to much weight this week!! For now though, im shattered and off to bed...dont forget the clocks go forward!! TTFN XXXX

Back To Reality!!

As your aware, it was mine and my other half first holiday not being in a hotel but in a tent and well I have to say, although it was blinking freezing, I really enjoyed it. Just being us with our dog in our own little world was fantastic. Ok, so what we done... TUESDAY: not the most adventurous of outings, we set up camp. The end. Only joking, that was just the start of things. Once our new home had been set up we decided to take Dixie to the beach. Blinking heck didnt she enjoy it. In and out of the sea, digging in the sand, trying to eat the sand that we were kicking out in front of us and she just generally really loved the experience. I did get photos but ive not uploaded them to the pc yet so youll have to wait to see our pooch on the beach. WEDNESDAY: as the weather was meant to be better for this day, we made a pack lunch and went to "The Lost Gardens Of Heligan". Although ive been here before with my mum last May, I struggled as I only had my crutches were as this time I had my wheelchair. Anywho, we went around as much as we could before I got mega exhausted. The flowers, scene, views and general prettiness was breath taking. I generally forgot how fantastic it was here. On our way back, we went via the shop and got ourselves a beautiful flower and a little hand crafted mouse sculpture made of wood (to which I named Murtle, I have no idea why though). We also got stopped by near on everyone in the shop because they could stop being amazed by our amazing little puppy. Admittedly she is lush. On wednesday night, I decided to go via tescos to pick up marshmallows, chocolate digestive biscuits and kebab stick...so I could treat my other half to a smore. Shes never had one before and lets just say, she loved them so much, we ate two...and then two more the next night. A picture will follow for this soon also. THURSDAY: ok, so on this day, the weather was not what we wanted. Rain. But we still went out on an adventure, though on our way there we had to do an emergency trousers and pants purchased as our pooch got a little overwhelmed and peed on my other halfs lap. Oops. Once all the change over had finished, we carried on our way to a place called "Wheal-Martyn" to which basically is a china and clay museum which also had a nature trail and a huge amount of history and mechanics for clay production in the 1800. Ok so if your not a history geek like me you wouldnt enjoy the history side as much, but thankfully its something we really enjoyed. FRIDAY: home time *sad times*. As always, we were up at 0730 as Dixie was hungry and needed toileting. We naturally got into the swing if things and started packing up after we had had breakfast. I think we were done withing about two hours. All was good, Dixie was in the car ready, and my other half was in the loo. I then took it upon myself to put the last few items in the backs seats, to wgich consisted of pine cones and a pair of orange wellies...and the disaster struck. Somehow, as I was shutting the door, I managed to shut it on my little finger whilst it was sitting on the locking mechanism. And off goes a slice of the top of my finger. I got to the toilet block as quick as I could to get the myd and oil off my hand so it didnt get into the now pumping with blood hole ive got. I shouted to my girlfriend to say I was there also, and when she came out, and I told her I had had an accident. The bleeding wouldnt stop and the whole cut was far to big for me to leave it so we had to divert via Bodmin minors on the way home. At the hospital I had to have an xray because it was a crush injury (thankfully nothing was broken or lodged inside), I then had to have it cleaned up, stitched and bandaged.

Ok so the picture doesnt actually show off the true extent to what happened, but believe me, it bloody hurt!! Only I could go on holiday and end up in hospital!! Well, heres a happy camping picture from day one...

So, ill try and get some more photos for you all to see tomorrow, but for now im off to make a rainbow sock rabbit!! TTFN XXXX

Vets, Pain and Feeling sad.

This morning was a blinking early start but sadly it had to be done. Our little girlie Dixie had to go to vets for her third lot of injections and also to be micro chipped. I was already worried about the pain it would cause her because of when I went with mum when she had a puppy. My partners mum went in with the nurse first and came out as if nothing happened so I guessed it may not be as bad now a days. In we both go with our pooch being optimistic about it all. First up was the injection, the needle itself didnt actually hurt her but the fluid did when it was going in. She wimpered and shuffled across the table to us both. We just looked at each other feeling helpless. Next up was the microchip. Looking at the needle, to me it just looked like an average size needle that I get stuck in me when I go into hospital. Again, the needle didnt hurt Dixie, but when they slid in the chip she yelled...and everyone in the pets at home store heard her aswell. We both looked at each other again, gave her lots if hugs and attention, and gave her the treat we braught with us. She bled a lot, which we are also super suprised by. The good thing is, that she does need any more needles being stabbed into her untill next year, and as of today she is now allowed on walks in the public. We are excited about going to the beach, this is great as shes a huge digger so will be right in her element and also gets to go in the sea. After our big ordeal at the vets, we decided that taking her for a walk this affternoon would be to much, so we settled down and watched a film. Myself and the other half snuggled on the sofa like the goid old days, these moments remind me just how much I love her. On the other hand, there are still massive issue with her mum and her attitude. She always has to be right, even though shes blatently wrong. She is insiting on cooking first every meal time which is also pissing us off. I change my nebs to 1730 because she would always cook from around 1800 -1830. Which generally meant we were having to eat stupidly late which wasnt helping our weightloss. But low and behold, the minute we change our arrangements, she changes hers, uses every pan we were going to use and then doesnt clean it up, so we are delayed even more. Like tonight, she cooked, then we had to, and whilst we were finishing off, she barged into the kitchen and started doing her pudding. Bearing in mind, the kitchen is bloody tiny and theres no room to swing a cat, let alone have three peaople cooking whilst also juggling 2 puppies. She then gets pissy at my other half about simple things like not scratching her mums bad on demand and also not looking after her pup whilst she has her pudding...even though weve not even started our tea. Everything else in life is plodding on...but bloody hell, her mum is doing my freaking head in, and I fear the stress may actually make it extremely hard for us to get pregnant. Oh well, only time will tell. TTFN XXXX