Other Peoples Experiences

A VIDEO TELLING OTHER PEOPLES STORY OF THIS RARE DISEASE

Treatment day yesterday

Good Morning

I had my 3rd cycle of chemotherapy yesterday the treatment for vasculitis, and due to the wonders of anti sickness pills not been ill this time, always dread having the chemo its side effects are unpleasant, but this time so far so good :)

Stunned was not the word

I had now been ill for 5 months with excruciating nerve pain, pins and needles and numbness in both of my feet, after numerous visits to my GP with not much joy at first I might add, he decided finally to have all my bloods done. So around 2 months in I got my blood results back. "Your inflammation marker is high, looks like you have developed Rheumatoid Arthritis I will refer you to Rheumatology".

I was happy at last something would be done. At around the 3rd month my feet started ballooning up with oedema which made them more painful, and prompted a couple of visits to the A & E,  listening to my history they too said it was more than likely Rheumatoid Arthritis and sent me on my way still in agony!!

I was now just living on pain killers, and spending more and more time in bed, I started loosing my appetite and ended up loosing a stone in weight, I had no energy and felt so tired that even the easiest of tasks was like climbing a mountain.

I finally got my Rheumatology appointment through was examined and a diagnosis was made of Rheumatoid Arthritis so at long last treatment could begin, I just wanted my life back to normal.

Treatment would begin the following week with a steroid injection, followed by a further 2 over the next 3 weeks.

The day of the first injection I felt really ill, so tired even less energy, breathless and so light headed, but off I went to the hospital for the injection.

On arrival they could see how ill I looked, "we need to do some obbs is that ok" " yes fine". I was put on the blood pressure machine, the machine started and as the blood pressure cuff started to tighten WOW really light headed felt faint which then triggered off a massive panic attack, gasping for breath!!

Thank god the nurse was there, who started immediately to calm me down, "I can't breath, I can't breath" "You can breath you are talking, its a panic attack, deep breaths, deep breaths" Her calming words eventually brought me round, it was a horrible experience.
When I was recovered they went ahead and gave me the steroid injection and sent me on my way.

Following the injection the week ahead seemed to get a bit easier I didn't feel quite as tired and a bit more energy, but unfortunately the pain in my feet was still there in fact it seemed worse, I was holding such high hopes it would be a miracle treatment, maybe the second injection might work more.

The following week I started noticing strange marks appearing on my feet, ankles and lower leg, strange "What have I got now"!!!!

My second injection was due so once again off I went to the hospital, on arrival the usual obbs were taken, remembering how I had been last time with the panic attack the nurse asked me how had I been, " Ok but I have developed these strange marks on my feet" The nurse took a look, "If you want to wait in here I will tell the doctor, she will take a look at it"

I was given a cup of tea :) and waited for the doctor. After nearly an hour the doctor came to see me, "Right lets take a look Catherine, how long have you had this rash"?    "A few days"  still examining me "I am going to get my colleague take a look she is a Dermatologist ok Catherine"? "She is in clinic at the moment but when she's free she will come to see you".

Eventually the dermatologist arrived along with my doctor and together they started looking at the rash I had developed, discussing between them selves an opinion what it may be.
Then quite suddenly they both agreed almost simultaneously it looks like a vasculitic rash, "Right Catherine, I think we need to do a skin biopsy to determine the cause" Oh my god not the "biopsy" word again, my heart started racing I hadn't even got my head around the Kidney Biopsy, and now I have to have a skin biopsy!!!! "I will see you in clinic later and we will have a chat"

The dermatologist left the room and the doctor proceeded to order blood tests, urine test
and a chest x-ray!! Why all these tests? I had only come for a steroid injection!!  What unnerved me more was the what seemed the constant asking by the nurse was I ok, with a concerned almost worried sort of expression, "Would you like another cup of tea catherine" because after all a nice cup of tea solves everything....

Then it began the first blood test of many more to come, also a urine sample was required, then off I went for a chest x-ray, by which time my blood tests results were back.

On the way back from x-ray I was met by a nurse who instructed me to go straight to dermatology as she was ready to see me.
.
I was called through and sat down, "Right Catherine looking at the rash it may be Vasculitis but the rash is not got the classic appearance because its not raised, so to be sure I want to do a biopsy, could you come back Monday for it done"?  "Err Yes" Then suddenly she blurted out "You know what Catherine have you got anywhere to be now"? Oh no I just knew what was coming next,  "Um no" "Well if its ok with you I will do the biopsy now, then we can get it sent off" God all this was too much to get my head around, what had been a long  slow 5 months of being ill had all of a sudden gone in to hyper drive things were now moving at a break neck speed, and my head was whirling as to what was happening to me!!      
I suddenly burst out crying I had held it in all day but no longer, it was all to overwhelming, too fast.

The consent forms where already being filled in by the doctor explaining the procedure to me as she was writing, I would be given local anaesthetic in the area of the biopsy and a lip shape incision would be made around 2cm wide which would leave a small scar she explained. "Is that ok Mrs Bibby"?  Wiping my tears away I replied yes. "Right could you just sign here then"?  My hands were shaking holding the pen god I am such a wimp I remember thinking to my self, deep breath, sign, done!!

The anaesthetic needle really hurt going in numbing the area, "Look away, can you feel that"?  no, she then took the scalpel and started to cut, "OUCH I CAN FEEL THAT"!!!!!  "Ok sorry Catherine" and continued to use more anaesthetic, "Right Catherine can you feel that"?  Warily I replied  no, so once again she picked up the scalpel and this time was able to complete the procedure. It took under 10 minutes including the six stitches, "All done"  So glad that is over I replied.

"Ok Catherine the sample will be sent off and we will be in touch, so you can return to Rheumatology now"

I remember thinking my appointment had been at 1pm for a simple injection which I was in and out for last time, and now its 4.30pm I just want to go home. Coming out of Dermatology my Daughter had arrived, and together we went back to Rheumatology, where the nurse was waiting for me.

Hi Catherine she greeted me, "right we've completed all your tests and you will be need to be seen by  the kidney specialist", KIDNEY SPECIALIST???? WHAT??? WHY???? were all thoughts whirling round my head!!! "" this will be done at The Royal Liverpool, the doctor will give you a phone call tonight". Doctor's phoning their patients at night this is not usual I was now thinking to my self, what the hell is going on here, this sounds serious to me!! "Ok Catherine we are all done here so you are free to go"

So glad to be out in the fresh air, my daughter telling me well at least they are doing something now mum, you have been wanting answers long enough, agreeing with her with a feeling of dread that this was beginning to be built in to some big, was it cancer Is all I kept thinking.......

True to their word I received a phone call later that evening from the doctor, surprisingly quite brief informing me they had all my test results back, and would I attend the day unit tomorrow (Friday) at the Royal Liverpool ward 9B and that was that.

Not another hospital appointment I thought feeling fed up.

The following day I woke to the usual excruciating pain in my feet, feeling tired, no energy the usual stuff I've been feeling for the last 5 months, but this morning I had woken with a few new symptoms, fear, worry and dread :(

I arrived on the day unit as expected was greeted by the staff and taken to the ward. After a short while blood was taken and a urine sample, I was free now to go off the unit for a couple of hours to wait for the results to come back, so the hospital café it was for lunch.

We came back on to the unit around 1.30pm bloods were due back at 2pm, 2pm came and went, 3pm came and went then finally at around 3.30 a team of around 5 doctors arrived on the unit, 3 of which turned out to be students, The Royal is a University Teaching Hospital, "Catherine Bibby my name is Dr Saxema these are my colleagues, would you mind students taking part"? "No its fine"  "Ok well Mrs Bibby you have been refered to us by St Helens after you were seen by them in clinic yesterday is that correct" "Yes" "Ok, well the reason you have been refered to us on Renal here, is because we strongly suspect you have a condition called Vasculitis, we have all your test results back, and your urine sample shows a marked level of blood and protein mark 4 which is quite high, so together with your blood results we want to get a kidney biopsy done, because you are on aspirin we will have to wait 5 days because of risk of bleeding, so an out patient appointment will be made for you next week, is that ok Mrs Bibby"?  "Yes"  "Ok then Mrs Bibby you can go home now, we will be in touch".

The following day Saturday, I had my son due to stay over a welcome visit under the circumstances, I didn't want to dwell on yesterday's events too much. Around about lunch time, the phone rang, "Hello can I speak to Catherine Bibby"?  "Speaking"  "Hello Catherine its Doctor Saxema at The Royal Liverpool, I think you were told yesterday we would be in touch"?  "Yes"  "We will have a bed ready for you later this afternoon say in a few hours, its on the Renal ward floor 6 ward 6B"  "What I'm being admitted"?!!!! "Yes you will be in around 10 days"  tears had come ADMITTING ME IN A FEW HOURS FOR 10 DAYS!!!!!! I was told as an out patient yesterday!! God its sounding serious.  Gathering my thoughts, "I will have to try and sort some one to bring me in, I will have to ring you back, we live about 16 miles from the hospital", "Catherine we need you in lift or no lift, now sooner than later, we want to get treatment underway",  "Ok then bye".  Stunned was not the word....

Just What I Don't Need

Good Morning

Spent the evening in A&E last night due to a fall I had at home clumsy clot I am, lost my balance and down I went on the floor twisting my ankle in the process, blinking hurt me too I can tell you.
My grandson Miller who is 8 made me laugh though, " You will do break dancing nan " LOL

Any way no broken bones thankfully just sprained, but just don't need it on top of every thing else.

Oh Well..........

So What The Hell Is Vasculitis?

This is the question I had whirling round my brain when the doctor had delivered my " Based on the blood tests and urine results and presentation of other symptoms, we think you may have a condition called Vasculitis , but to be sure we want you to have a Kidney Biopsy" The words "Kidney Biopsy" I remember made my eyes widen and a sort of wave feeling went up my body, these two words were now locked in my brain Kidney Biopsy, Kidney Biopsy. I now felt scared for the first time since becoming ill, but strangely not in the way you may think, no not scared in case my Kidneys had been damaged but scared of having the Kidney Biopsy procedure itself, its I all I could think about,  the doctor was still talking to me but I wasn't listening. I remember thinking I don't want to have a Kidney Biopsy :(  After what seemed like an age my ears were back with the doctor and she had moved on to the we will speak to Renal and an out patient appointment will be made for you, probably in one weeks time because we need to stop your aspirin for 5 days for this procedure because of bleeding. "Bleeding, Bleeding"? Bang straight back in a world of my own again slight panic and tears beginning to well up in my eyes. "Mrs Bibby are you ok"?  "Yes well I think so ( am I hell ok) just a lot to take in" " Ok then Mrs Bibby we will be in touch" and with that  the doctor and her team were gone.
I was now just sitting there quietly staring out the window thinking what the hell had just happened to me focusing again on the Kidney Biopsy when bang the word Vasculitis suddenly popped in my head, what the hell is Vasculitis?  I asked myself, didn't have a clue, never even heard of it, couldn't wait to get home from the hospital to google it lol.
Our journey home of around 16 miles was mainly in silence while I tried to process the events of the day. What started as being ill with horrendous pain in my feet (more of that later) now to be told I have to have a kidney biopsy didn't make sense, what the hell did my kidneys have to do with my feet?
On arrival at home I couldn't wait to fire up the laptop to gather more information on my diagnosis. How do I even spell Vasculitis? Google filled it in for me, click and there it was. Some websites full of over your head medical terms and jargon, so did not bother with them, still looking I came across a website Vasculitis Uk, more up my street, simple language and all information you need.
Finally I learned what I needed to know about my newly diagnosed condition.

So what the hell is Vasculitis?

Vasculitis is inflammation of the blood vessels. The blood vessels involved can be in any organs and may be different in different types of vasculitis. The skin, joints, kidney and lungs are often involved in some of the more common types of vasculitis. The overall prognosis varies depending on the organ involved and the severity of the disease. Treatment varies depending on the actual vasculitic disease present, the severity of the disease and on the organs involved.

Different types of vasculitis will usually affect mainly one size of blood vessel. Takayasu's arteritis and giant cell or temporal arteritis are called large vessel vasculitis because they mainly affect the aorta and the biggest arteries as they branch off. Polyarteritis nodosa and Kawasaki's disease are called medium vessel vasculitis because they affect the middle sized arteries as they go into the organs. Most of the other types of vasculitis, such as Wegener's granulomatosis, microscopic polyangiitis which I have, are called small vessel vasculitis because they cause inflammation in the smallest blood vessels, the capillaries, as they supply the insides of the organs. Vasculitis is an auto-immune disease where the body's immune system attacks blood vessels instead of defending them against infection.

Wow suddenly the fear of a kidney biopsy was the least of my worries, I really had all this going on inside of my body? My body is literally attacking its self?  OH MY GOD.........

My Vasculitis Journey - The daily onslaught of medication

A very good morning and another fine day, managed get 5hrs sleep last night that's a "lie in" for me lol.

I was just sat quietly thinking to my self, this time of the day 7am
 is when I probably feel my best, although a little tired, but from a pain and well being point of view I actually feel quite normal what ever normal may be lol.

Really enjoyed my breakfast
this morning

Which consisted of bran flakes, toast and
marmalade, well it was the bank holiday
after all, you have to treat yourself lol
and a lovely cup of tea.

I love my tea but that first one of the day
is delicious, well I think so anyway.



Not looking forward to my "2nd" course of breakfast though the dreaded daily onslaught of
medication :( Which this morning consisted of 22 tablets!! With in an hour the side effects will begin to kick in, the pills make you feel more unwell than the illness itself.

The main culprit being #Prednisolone a steroid 60mg daily which is a high dose.

My other daily tablets consists of pain killers one of which is for nerve pain, anti-biotics, heart meds and gastric meds. Phew no wonder l feel rough lol.

Well an hour has passed now beginning to feel drowsy and shaky, this will last most of the the day now

Then more medication to follow tonight, only
another 5 pills this time though!

God when I think back at one time I didn't even
like taking Paracetamol, I had a real phobia until
quite recently about taking prescription drugs,
just don't like putting them in my body.


Now I have no choice in the matter its either take the pills or....I don't even want to
think of the alternative, so rattle away I shall lol.

 

Can't sleep

Well its 1.07am here in the UK, and not a wink of sleep has yet passed my eyes, so tired though  :-(
Last night was the same 4hrs sleep I managed, not good I need all the beauty sleep I can get! lol.

Well just a short post I really do need some sleep....Good Night

Could this be history

Just to be sticking to my sport theme for this morning, was wandering if this is history in the making.

Wigan Warriors Chairman Ian Lenagan & Wigan Athletic Chairman Dave Whelan with the Trophy's




Two major trophy's have been won by the town of Wigan this year.

The prestigious #FA Cup won by #Wigan Athletic Football Club in May this year.

The equally prestigious #Challenge Cup won by The Wigan Rugby League team #Wigan Warriors yesterday

Both clubs share the #DW Stadium in Wigan in which both cups shall be housed

Good Morning

Well what a beautiful sunny morning, it makes you feel so much better a bit of sun shine. Although I have woken with a beam on my face anyway this morning, remembering my beloved rugby league team The Wigan Warriors lifted The Challenge Cup
at Wembley Stadium yesterday for a record 19th time,
so proud of them!!

Myself and my 2 gorgeous
grandsons Dylan 12 and Miller 8
waiting for the match to start
                                                                                                                                            

http://www.youtube.com/watch?v=BWyW1VfWyFk

My Vasculitis Journey

Hi
 My name as you have gathered by now is Catherine, but wait..... that is not quite correct....I am know as Lorraine by my family, friends and just about everyone who knows me.

Confused? Yes you and me both lol,

Talking of being confused I am new to this blogging lark, so I am learning by trial and error, please bear with me I am sure I will get the hang of it eventually.

More of my story to follow....