Big Milestone

Well today has seen me reach a big milestone in my Vasculitis journey, l have had my last infusion of chemotherapy!! I can't believe how the past 6 month's have flown by.
All in all l have tolerated the treatment fairly well compared to other people l have spoken to, so I've been lucky :)

My journey does not end there though, it may be an end to one regime but l am not out of the woods yet.

The next phase of the treatment involves a drug which carries on where the chemo left off, not as toxic as chemo but acts by dampening down the immune system and slowing down the disease process.

Of course this drug comes with side effects :( Some people are affected more than others, having not yet started taking it, so l can't comment yet.
I have to have my blood monitored regularly while taking this drug so its still regular trips to the hospital.

Am also still on the dreaded steroids and have gained 2 stones in weight,  l am at the moment trying to lose the steroid weight but it is hard to do so, hate it though. I just want my old self back, its like looking at a stranger in the mirror.

So that's about it for now, will keep you posted.......

 



 

The last five months

Happy New Year!!

Sorry for my lack of posts since September I have just been getting on with coping with my illness. It doesn't feel like five months since all this started the time has gone so fast.

Since the beginning of August I have been having Chemotherapy every three weeks with a blood test ten days later, all done at the Royal Liverpool.

I have also been on Steroids since August and have gained over two stones in weight which I hate, I have the typical "Moon Face" Its like a stranger looking back at me in the mirror its horrible.
And the side effects have been horrendous, shaking, dizzy, no power in my legs.

I was started off at 80mg dose and have weaned down now over the period of five months to 7.5mg thank god, although this dose is indefinite classed as a maintenance treatment. Thankfully the horrible side effects have gone apart from the loss of power in my legs which makes climbing stairs difficult, unfortunately my doctor has told me this is likely to be permanent caused by the steroids.

I have my next to last Chemo this coming Monday and my last Chemo at the end of January, well that was the plan of treatment set out in August.

I was informed when I had my last Chemo three weeks ago my white blood count was up and my Kidney function had dropped to 48%, it was 52% when I was discharged from hospital at the end of August, so that came as a blow.

There is no cure for this illness but you can go in to remission and that is the aim of the treatment, so I'm keeping my fingers crossed for my last two remaining sessions of Chemo.

So that's about it for now will post again soon
Bye for now

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..........