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 Beginnings

Before I go onto the main subject of the post i thought i would share with you all that last monday i finally got that lump that was growing pretty quickly in my mouth removed. I had to have surgery to have this done and i was awake throughout it all. It was not nice at all but its gone so im please. Sadly though because the surgeon had to remove soooo much tissue because of the size of the lump, there then wasnt enough tissue left to stitch the two sides together so i now have a huge lump in the floor of my mouth. Its weird as i can stick my tongue in it lol.

On other notes though, and back to the title, as of 1330 pm on Thursday 13th November,my self and my girlfriend offically became married. It was absoulty amazing and everythibg went as planned. I was so please and happy.

We stayed in a 4 star hotel for 4 nices and blinking heck we wasnt use to it. It was so strange saying can you add the meal to our tab etc instead of paying straight away. Weve decided though that we must go back. The treatment there was amazing and we went swimming aswell as it was all included in the price.

Our next big suprise is my wifes 21st birthday. All her presents are wrapped and ready, Now we just need the big day to arrive.

TTFN

XXXX

A Positive End To The Week

Im starting off with Tuesday because its quick and breif and doesnt really match the title. As you know, we have now been without our princess Dixie for five weeks and its making us beyond sad. For one we really wanted her at our wedding next Thursday that it would be a miracle to have had her back. So instead, I had found on of the top tattoo studies in England and pleaded with them with our story and the managed to have a cancellation on Tuesday and we got it. I can now say that both me and the other half are the proud owners of a new tattoo and it freaking killed. We have it in the same spot, on our left hand side on our ribs parallel to our hearts. Its a unique tattoo that noone else will ever have because its Dixies name and her exact paw print. I bruised mega bad and it is still heali g but here is a picture 3 hours after we had it do.

Wednesday we were super lazy and couldnt be bothered yo do anything majorly important so chilled and watched tv,oh and my friend set me a challenge to knit her son some mittens, and I gave to admit, these too are amazing.

On Thursday I drove us both up to my mums to have a pre wedding hen meal type thingy. We also picked up my sister along the way and of course my ickle nephew who has and is growing up far to fast. Of course I had lots and lots of cuddles and cant wait to see him again next week for the wedding. I really loved being with the three main ladies of my life. Our relationships are getting far better and we literally get on amazingly. I couldnt wish for a better family. To top of the day, to be even more amazing, my sister asked if I would be my bephews hod mummy, to which of course I said yes. Wasnt refusing that task. Today was the day for the council lady to come around because our temporary flat has started to grow mould. We all know irs down to a build up of condensation but sadly this shit of a flat has night storage heaters so it will alwas have these issues. I have purchased today an electric heater to see if itll help keep our electric down but also hrlp us out. We also learnt today that the council has yet again failed us. Our homeless officer rang the department and learnt that despite having higher rate dla, I hadnt been flagged up as an even more urgent priority for having a fit, safe and stable home. Thankfully this has now been done and should help us move quicker. Bloody hope its soon. Five days till the wedding aahh TTFN XXXX

Bones!! I Guess We Need Them

A few months back if you remember I told you a breif bit about my hip being crap and causing a lot of pain. I mad an MRI scan with Dye to try and figure out what was wrong following a steroid injection in theatre that didnt work. The scan showed that I had A labral tear that needed fixing. My current consultant was in Musgrove because of living in Somerset when I was refered there. They told me that they only do open surgery there. As i was now a resident of Cornwall they said they would transfer my care to a Consultant in St Austell because he can do the surgery via key whole. Perfect. Figured all i would need was a little hole being stitch up and on I go.

I had a consultation with him to which he asked me what it was I knew about me him to which i told him what I just told you. But he told me to wait there because it wasmmore complex than that. Wait what I never got told this. Why is this new to me!? He told me a breif outline about my hips not being thw right way. He thought at the time it was my sockets that was backwards so he done an xray on the day which showed my femurs sitting inside my pelvis which in itself isnt right. As these results werebt good he requested an urgent CT scan as noone seems to have wanted one of them yet.

Inwas supposed to get these result 5 weeks ago but he rang to cancel because he didnt have all the results back.

I finally got the appointment to go today at 0940.

I took my other half with me as its only fair that she knew what was going on and i figured that the consultant would be able to explain it easier than me.

So clinic. We sat down and to be honest i was shitting myself. I was mega scared but didnt show it because i didnt want to worry my other half.

He pulled up my CT scans (which might i add was bloody amazing) and showed us the results. Firstly he apologised because he said it was more severe than what he first thought and told me. So whereas we thought i just had the tear and high sittong femurs it turns out ive got:

A lip of overgrown bone at the back of the ball head of my femur which is causing the ball to catch on the socket which in turn is causing my hip to pop out of place multiple times a day.

I next got told that my ball itself is facing the wrong way by 15degrees which is why i cant put my legs into certain positions and why when i sit certain ways my right leg is shorter than my right because as its rotating its rotating the wrong way.

As all this was supposed to be found when i was a child and fixed it has now caused severe artheritis in my hip because of all the damage.

The consultant has stated he has never seen this extent of damage and mis growth in someone of my age. Great.

I will need surgery i cant be like this.

He said he will focus on my right him first as it is causing the most pain and once the right side has healed he will move onto my left hip.

So, the surgery, the first stage we are trying under spinal block a key hole procedure to which he will scrap away the lip of overgrown bone and hopefully get a better picture of the artheritis and try and sort it out abit. If this doesnt really do much it then leads us to stage 2 of the surgery. This is even more major surgery than before and i will need a general to sedate me. During this procedure he will break my femur in half and will take the top half of the femur out, rotate it by hand to the position it should b and then re put it back into the socket and reattach everything. The 3rd stage in many many ears to come is total hip replacement which the artheritis will cause.
Like i say once the right side is done i will then need all of this on my left.

What pisses me off the most is the fact that not only was this ignored throughout my whole childhood but for the last 2 years ive been told constantly that the pain is psychological and that theres actually not anything wrong. As a result of their neglegence i am now suffering the consequences and getting chronic pain and needing major surgery twice over.

I dont understand how our lives can be so miss treated through the hands of people we are supposed to trust.

Its shocking and shouldnt be allowed.

TTFN

XXXX

The Joys Of An Asthmatics Life

Ventolin, salbutamol, puffer, inhaler, reliever. Recognise these words!? Im sure you have!! These are just what asthmatics use because they get out of breath right!? Overweight and dont exercise so use their "puffer" and carry on as if life never stopped. WAIT!!!!!!!!!!!!!!!!!!!!! Blinking heck well I have a shock for you. If you think that this is asthma defined you need to spend a day in my shoes, actually scrap that, ill give you the morning or the afternoon, you pick as you wouldnt cope a day. Asthma is not a few puffs of the blue and carry on where you left off. My life has been destroyed by asthma. My asthma is very different and suprisingly not many people have it which is why its not as well known. I have severe brittle asthma. I could be sat watching telly and then within a split second my lungs could decide that actually they didnt like that cold air that ive now started breathing in because of the winter months. Within that split second my oxygen levels will plummet, my co2 levels will rise to dangerous levels, I will become exhausted, tired, confused, SCARED. My life is hanging in the balance once again. I need drugs wuick. Quicker than quick infact. I need an ambulance, shit wheres the phone, shit I cant talk. Phew my girlfriend has walked into the room, 999 "ambulance"...amazing paramedics come within minutes because ive an emergency flag on my address alerting them of my asthma. They put a needle in my veins, they push drugs into my blood stream, they put and oxygen mask on my face with more nebulisers. The get me into the back of the ambulance, hook me up to all the monitors, the pre call the emergency room, blue lights go on, sirens blaring, 90mph down the dual carriageway, arrive in resus, consultant;nurses;junior doctors;itu team all waiting form my arrive, fuck where they taking my girlfriend please dont leave me on my own, doctors listen to my chest, its silent and no air is shifting, the stab a needle into the artery in my wrist to draw special blood, they test the blood and get instant result, results arnt good, more iv drugs being pumped into my system, muscles working harder than they should, doctors start getting really concerened, I move from resus to intensive care, they stab my artery again with a more perminant lline, they attatch a tighter fitting mask to my face, I remain like this for hours, finally drugs start kicking in, it becomes easier to breathe, my life is coming back to me. Ive survived another. Attack!! I guess me going through a breif outline of my life is like trying explain to a man the real pain women go through with Labour and sadly they will never know for real. For you, there is a very similar way to know how I feel, tape up ur nose so u cant breathe through it, put a normal average size drinking straw between your lips, now tape up the rest of your mouth so no air can get in other than through that straw. Struggling yet!? No, ok, now go and run for 20 minutes flat. You wish. You wouldnt make it 2 minutes!! Thats how I feel daily and when an attack shows its ugly face this struggling and fighting for breath feel intensifies. Ontop of this, I take many medications. These have side effects. I need to devide, do I want these side effects ir do I want to breathe!? Im not an idiot, I choose to breathe. Unfortunatly though this brings me to todays appoinyment with the doctor. One of the side effects from my medications is a muscle wasting disease. Ive now been told that theyve looked into my case. Theyve assessed everything. Theyve looked at alternative drugs. THERES NOTHING THEY CAN DO. My muscle disease I am told today will get worse. The only way it can remotely get better is by coming off the medications, but like I say, I dont and I cant breathe without these drugs. Currently its getting to the stage im struggling even more to hold my head up. Ive been given exercises to try and strengthen my neck muscles but im told not to do them too iften as I can rip them and then they are permanently damaged beyond repair. Inevitably I will end up like a newborn, I will not be able to hold my head up. So, back to my earlier question, do you want to spend a day in my shoes!? TTFN XXXX

Little Thing Mean A Lot

I just want to rant first to get it out the way. Cornwall Council literally should be under the definition for complete and utter PRICKS in the dictonary.

2 days ago I looked on our account to see what position we were at for the 3 proporties we were wanting for this week. We noticed that 1 had disappearded abd yet it was still stating we had made our maximum bids for this week. So the usual pattern happened, i emailed them telling them how pissed I was that something is wrong yet again. They replied stating that actually there is no issue and that we had still bid on the 3 proporties and they were still there. So last night I re checked the system and oh still not there so I took a picture and re emailed them stating if its still there then why has it still vanished, i wanted answers and ASAP as this weeks bidding was shutting at midnight last night. Funnily enough i had no reply, untill today. They said that actually, the owner of the proporty had decided that they didnt want to let out the flat anyone and had been removed, yet on the system they hadnt re allowed us to bid on another 3rd property meaning that now this week we have missed out on the chance to get out of this flat. Lets just say the council have had the full blown of me today. Ive questioned how they think they can get away with treating us like this. Asked them why they said we wouldnt be here long and yet 4 weeks on we are still here. Thats now nearly 4 weeks on that uve not been able to have a shower. 4 weeks that ive been isolated in this flat because i cant get my wheelchair in and out with me in it as there is steps and that 4 more weeks that our family has been torn apart. Ive questioned them how they would like to be honless for 4 weeks now not knowing where you are going to end up and worst of all would they allow theirselves to live in a flat that is unsuitable for them and has not started growing mould. Perfect. lets just say im still waiting for a reply!!

In other news, ive been buying more presents. Not for my other half this time but for Dixie. We know that we will be missing her first birthday and it fucking sucks. Each time i think about it i cry, u wouldnt miss ur childs first birthday!! So anyway ive been buying her presents. 2 that we are sending her in the post. 1 of them being an edible dog friendly birthday card and also a birthday cake thats dog friendly. Weve then got all her ither treats and toys stacking up ready for when she gets home as no doubt we will b missing her first christmas too so they shall be joing the pile on the side.

Tonight i have lit 13 candles on the window ledge because scarily and pretty soon myself and my other half are getting married...13 days to be exact ahhhhhh

Also, finally, we are hopefully meeting with our new donor on Monday to see if hes happy with who we are and if so, to sign contracts. All being well then, next Thursday we are restarting the journey of becoming a family. Yay.

Well, im off now, bloody tired!

TTFN

XXXX

Suprises!!

I know its super early for a blog but I figured I would use the clocks going back to my advantage. The lovely lady is still asleep and this blog is about her and I cant risk her seeing it!!

A few weeks ago my other half had said whilst watching Janie Olivers fifteen minute meals that she would love to go to his resturaunt as shes heard its amazing and top quality food. (I agreed as ive been to one). She said "if only we could afford it for my 21st Birthday". Told her that unfortunatly that more than likely wouldnt be possible simply because it cost so much and we can nooooo way afford it.

Hehe

Well, a few days ago I have just made it happen.

I got in contact with the reservations team through email (as when your other half is with you 24/7 because they look after you, it makes ringing very difficul) and they have been amazing.

They told me of everything that was available and what I could do.

Sooo, on the 25th of Novemember (which is her actual birthday) we have a table book at the Cornwall resturaunt for 7pm. as I told her it was for her 21st birthday, they said that on their plates during pudding etc and other little occasions, they will write birthday messages to her from the chefs. (Amazing!!!!!). Ive also had it arranged that they will be baking 12 cupcakes that will be displayed on a lush cake stand and brought over to our table at the end of the meal hehe.

They are amazing there. They have gone all out and really made her Birthday seem that little bit amazing.

Now all I have to do is try and keep it a secret for another 30 days else itll all be ruined.

TTFN

XXXX