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

Deflation

I couldnt blog yesterday after my clinic appointment because I was still trying to get my head around things.

Basically, in short, the tests my respiratory and immunology consultant have ran these past 8 months have shown that I was born with an abnormal immune system. As a result, because it has been undiagnosed for so long ive now got to the point i have no immune system which explains why im getting so many infections and also taking so long for things to heel. Ive got an appointment now on the 9th September with the immunologist because they want me to have atleast a years worth of IvIg infusions which is in theory a home grown immune system put through an IV drip and pumped into my body. Ill be asking whether this can be done at home and that myself and my partner can be taught to do it as these i fusions could possible be 2 weekly and i really dont want to be driving to plymouth each time which is just under an hour away from my home.

My respiratory consultant has also explained that this problem with my immune system is whats causing me to be both anemic and also have a critically low phosphate. He also explained that it is the cause for my oxygen levels to constantly drop at night. Although this is great news to hear, there is also a frustraiting element. He wont treat any of this for the long term as they wouldnt know if the infusions are having an impact. So i have to have atletast another year of intense migraines every morning whicb im a little miffed about.

After such a stressful and brain wrenching appointment followed by more blood needing to be taken, idecided i needed crap food to eat ha. Myself and my partner know of this amazing american food place in plymouth called goodbodys so we went there. We shared a death by chocolate milkshake which was monster size and is roughly 3 pints worth of drink in one. My partner then had an american breakfast and i had twister fries with cheese and also an american pancake with ice cream and nutella. Yum. Definatly hit the spot.

Today has been yet another shit day.

We woke up and i really didnt want to get out of bed as i was hurting and my muscles were weak from driving yesterday so my girlfriend went and made breakfast for us and we had it in bed. Although staying in bed didnt last long as it turns out that when my girlfriend went down stairs her parents staryed on her again and startted slagging me off big time so i needed to get out the house. We ate, got dressed, got dixie ready and just left. I just want to cry. Ive never been made to feel so shit before, and this time it was all over a bike to which my girlfriends dad then chucked at her that she shouldnt be riding a bike anyway as itll do her lady garden no good (shes got really bad problems with allergies there) i of course have no idea why riding a bike would cause a reaction. I decided it was yet another dig at her trying her bloody hardest to try and loose weight and its disgusting.

To top today off, just as we were leaving, i was stood by my car trying to get the wasps off my door as im allergic to them and a woman comes speeding around the corner and nearly knocks me over. As a result i shook my head a sheer shock as its a 30mph zone. This woman suddenly slams on her breaks, gets out the car and staryts screaming in my face waving her fists round my face. I ofcourse wasnt bothered. If she hit me fine, ill get her arrested. Weirdly, and neitther me or my girflriend dont know why but when she was leaving she shouted at me "go and get urself a road"...funnily enough we are still confuzzled by this comment.
Thankfully there was a witness to which at the time we didnt know about but it was our neighbour up the road that saw everything so if she did hit me, atleast i would have been backed up. He was so worried that the woman was going to run me over.

Oh, one last thing, similar to last December when i had a benign tumor grow on my lip, ive now grown something very similar on the underneath of my tongue. The lump is roughly 1.5cm in width and 3cm long and it is thicker than the size of my tongue which u can imagine is a royal pain in the rear. I cant talk or eat properly now. Im desperatly trying to get hold of the maxifacial surgeon that sorted my last lump as i trust him and no how supportive and helpful he is. Will update u more on this situation as soon as i know more

TTFN

XXXX

Anything Else Want To Come My Way?!

Sorry for not posting yesterday but I was so overwhelmed with information I just couldnt bring myself to sharing it.

I was at Musgrove park hospital in Taunton for a MRI on my hip.

I had to be there for 0920 in the morning as first up i had to have a massive needle poked into my hip joint again to have dye pumped straight into it. This was done under xray guidance. Initially all was going ok, then suddenly I felt very sick, went mega dizzy and from what i can gather, the colour drained from me and i went spaced out. Next thing i know both the nurse at my head and the consultant injecting me was asking if i was ok.

The whole team on this first stage was fantastic.

Following this i then went round to the MRI scanner. I got told that i would only be about 10 minutes...2 and a half hours later im finally back with my other half who had been going frantic and worrying mega because i had been so long.

off we toddled to the cafe though where i had a coffee to wake me up again for the journey back home. Fingers crossed itll only be a few weeks and ill have the result and find out what treatment i need.

Once home i had to ring my GP to update them on the new drugs ive started and i also wanted to check both my sputum and blood tests that i had done on Monday.

I was so pissed. The receptionst told me that yes the result were in but i had to physically come in to see the doc to discuss the result...and the next nearest appointment was 3 weeks away. I obviously refused this and said ill sort something, but in the meantime could the doctor ring me so i can tell them about my new medications...cheeky me then mentioned the blood results to the doctor when they rang me back and bloody hell im friggin glad i did. It was with regards to my phosphate again...and it remain critically low. Ulyour levels are meant to be 2.4 and above...mine was 0.6 so its no wonder im struggling so much so ive now been started on phosphate supplements and need regualr blood tests

As youve probable guessed following all this had 100% exhausted me so i went off to sleep...only to be woken up at midnight having a massive allergic reaction...gradually throughout the day i had been getting itchier and itchier and then by midnight i also had a full body rash. I could put my finger on what was causing it annd initially i thought it might have been the uniphylin...with taking this mornings dose and having no reaction it then clicked, it started straight after i had the dye put in my hip...and had been getting worse throughout the evening making me feel shit, so i guess thats another drug i can no longer have. Perfect.

I woke up this morning in agony though. I know the consultant warned me that with certain people, depending on what hip injury they have they can have bad pains through out the whole leg for the next few days..mand boy was he right. I could barly walk to day and i cant bend my knee without crying out in pain. I just hope it doesnt hang around.

Today i have officially made 35 baby hats so my first NICU box is complete. Im going to do another fair few amounts of hats though before i send them off as i want to get a great picture to send into asthma uk to show them the progress...please look through my previous blogs to find my just giving page...we really need more donation!!

TTFN

XXXX

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