Not The Best

Yesterday I had an appointment to see a hip surgeon to see whether or not he qas brave enough to operate on my stupid hip. The night before i was shitting my pants as ive stopped breathing on the last 2 surgeries ive had and they struggled to bring me back so i was meantally working out whether this is a wise choice.

My other half didnt come with me as i said there was no point in her not going to her volunteering as i knew what was wrong with my hip so it was just a yes or no to surgery.

Boy was i wrong.

The consultant asked me what I knew about my hip and what i had done so i said i had a plain xray that stated i had deterioration of my femeral hip AKA AVN. I then had a plain MRI that showed nothing more so they gave me a steroid injection into my hip in theatre. This increased my pain so they done an MRI that showed I had a laberal tear in my joint. And then i got told i needed surgery and here we are.

His face dropped...and then i started to worry.

He then said he was sorry but i havnt been told the full degree or extent of my hip. He then went onto inform me that i had an inpingement. I thought thats ok, wheres the worry in that I had one in my shoulder, i still have it as i refused shoulder...i can live with that.

But that wasnt all of it...

He then went onto explain that not only do i have the other 3 problems but i also have backwards hips. In other words, they are facing the wrong way. Erm hello, why is it i am 23 and this has never been picked up on before!?

Thats not all, he then went onto explain that along with the other 4 issues, my femurs are also protruding into my pelvis.

Fuck...i just wanted to cry...but sadly he had more to tell me.

He explained that my AVN is minor at the moment so hes not all that concerned and itll be a while before that needs surgical intervention ...  amazing, finally some good news!!

WRONG!!

As i also need surgery on my backwards facing femur proturding hip. He has orgered an urgebt CT scan to see how much bone is actually in the wrong place. I will then be seeing him in 8 weeks which is September 22nd because depending on how much bone is deformed will decided on how quickly and where i have surgery. He is about 80% sure though that i will needs the specialist surgery which he cant do as its to complex for him and hes never seen it in someone of my age before. So he will be refering me to the specialist. Wait for it...who is in London. I will have to go to the other side of the UK from where i live to have surgery.

But wait, theres still more...he also told me, my left hip is identical to the right hip (which is the painful one) so very soon i will be in extreme pain with that hip too and i will need surgery on this hip also.

im gutted. Not only should this have been picked up on at birth but i will be alone on the day of my surgery unless we cam save up a hell of a lot of money to pay for my other half to be in a hotel the whole time im in hospital.

Im absolutly devested and pissed off all on one.

I dont get why the last hospital i was under didnt tell me that my hips were facing the wrong wag and that my femurs were sat in my pelvis. Why didnt they see this as an urgent thing like this consultant in Cornwall has.

I got told in april that the pain is in my head and that there was nothing wrong...yet actually there is severe problems wrong.

I potentially cant have anyone with me during my surgery. What if this time they cant actually get my breathing going again!?

I cant wait for all this medical shit to leave me alone. I want it all to stop. I dont think i cant cope with much more

TTFN

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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

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