Kirsty’s Story 


2010
 Living with Neurofibromatosis (NF1) and Scoliosis continued.

15th January 2010:
I hope everyone had a great Christmas and that 2010 proves to be a great year for you all.

News on the operation on my knees is that it will be going ahead, I go for my pre’ op’ check on the 19th January when I should be given the date of my operation. The doctor said the operation will put me out of action for about 6-8 weeks as they are going to do both knees at the same time. The very nice doctor that I saw explained what they hope to do and said they are going to try an arthroscopic ‘lateral release’ whereby through keyhole surgery the tight lateral structures will be cut to allow the kneecaps to sit more centrally. He did say sometimes this procedure is not enough and needs to be combined with a reinforcement or double breasting (reefing) of the weakened medial structures including some of the quadriceps muscles (VMO advancement). He is not confident that it will work due to how my knees are looking when he bends them, he does not think the tumours that are in both my knees will cause any problems to the surgery, which was good news. He wants to give keyhole surgery a try first before going on to do a more difficult operation where they will have to put screws in my knees to make them stable.

The doctor also said if when they start the surgery and for any reason he thinks it will not work, he will stop the surgery and I will be taken back at a later date to have a different operation on the knees. My knees have got worse and have been giving way a lot more on me.

I received a letter from my spinal doctor (Mr. N Oxborrow) to tell me what happened at the spinal scan/x-ray meeting in which my results were reviewed. Mr. Oxborrow mentioned that I have a degree of junctional kyphosis at the top of my metalwork and the scan showed predominately dural ectasia. Mr. Oxborrow is going to send for me so I can talk to him more about the results and does not really know what to do next. He was also unsure if the pain I am in towards the top of my spine is related. I just wish I knew what the pain was then as it’s getting worse and I am getting so many headaches too. I am now taking 700mg Gabapentin, 3 x days to try and help with the pain as well as my other strong medication that I only try and take at night as it makes me lightheaded

I have also received a letter over the brain scan that I had, I am going to see the neurosurgeon to chat about the results at the end of January.

Apart from being back and to the hospital due to ear infection in both ears over Christmas I have not been too bad and managed to have a nice Christmas with my family.

1st February 2010:
 I went for my pre' op' check on the 19th January, I was sat in the waiting room with my mum waiting to be called in, we were messing on my mum ipod touch and mum was trying to beat my score on the game we were playing. One of the nurses called my name who introduced herself as "Heather". Heather was really nice and explained what was going to happen and after taking my medical history the poor woman was going mad and said "I thought you were going to be easy". Heather then said that I needed a blood test encase I needed a blood transfusion during the operation, I looked at mum with my sad eye look (needles and me just don't get along), I mentioned that I have a problem with needles and that they can never find a vein in which to put the needle and when they do the vein always pops. Heather said she would get there best nurse to do injection for me. I went in the other room taking my mum with me so that I could squeeze her hand when the needle went in. The nurse said she could see a nice juicy vein and that it would soon be over, the band went round my arm and made tight so the vein would pop up even more, I held my mums hand, the nurse put the needle in and started to move it round while in my vein, yes, I screamed, it really hurt, the nurse removed the needle and said she could not get any blood and would need to try the other arm and again she tried to get blood but was unsuccessful, after looking at both my arms again she decided she was not going to try anymore and that I would have to have the blood test done when I come into hospital as it was something that needed to be done. My arm was left black and blue.

I went back to see Heather who still had some more test to do. The nurse told Heather that she was unable to get any blood and Heather said that I was trouble. My B.P taken, which was good, then a trace of my heart, which showed my heart beat was very slow, 55bpm so I was sent down for a lung function test, which also came back showing my breathing was not so good (I wonder why when I had just been injected twice by needles).

After giving a full history of operations that I have had and other medical problems that I have Heather said she would need to speak with the anaesthetist as she was concerned about the gastro' problem that I have, Heather said I could not have a epidural due to my spine and that she had spoken to the anaesthetist who said he wants to make an appointment to see me before the surgery. So I am waiting on that now.

On the 29th January I went to see Mr Leach over the brain scan results, unfortunately I had been very sick during the morning before going to the hospital and felt a little drained. When I arrived at the hospital "Jim" my ambulance driver took me up to the clinic to make sure I was ok. One of the nurses put me in a side room while my mum booked me in. Mr Leach called me in and commented that I did not look so well, I explained that I had been a little unwell before coming to the hospital and that I was just tired. Anyway the first bit of good news I have had for while is that Mr Leach said I do not need any surgery on my brain and that he could not see any pressure on the brain, he still wants Dr S Huson to look at my scan and compare it with my previous scan to see if there is any change in the tumours that was found on my optic nerve and soft tissues. It was nice to end the month with some good news.
I have not got a date to see Mr. N Oxborrow (my spinal doctor) to talk about what he thinks should be done about my spine. The top part of my spine is still very painful and I am still getting some bad headaches. If I have not heard from him by the end of March I will give him a call to ask what is happening. He is a very busy man and I don't want to go bothering him at the moment.

I am busy now trying to get raffle items for my next charity event and sorting the mobile phone out that have very kindly been sent to me to help raise money towards my target for the poorly children.

9th February 2010:
 I received a phone call to say that I am carrying the MRSA bug and that I have got to be treated with two different creams that go up my nose and I have to bath in this liquid soap every day for the next three weeks, I have got to have three clear swabs before surgery can now take place. MRSA stands for Methicillin Resistant Staphylococcus Aureus. Staphylococcus Aureus is a bacterium commonly carried on the skin. My mum asked the doctor how I had manage to pick MRSA up and seam to think it possible that I picked it up when I was last in hospital in November. I can still attend my lessons and I don't have to be isolated, which is good. I am almost at the end of my treatment now so fingers crossed when I do my swabs it will be clear.

3rd March 2010:
 I went to see Dr. Watts over the sickness, she now wants me to start taking Domparidon three times a day a long side what I am already taking. Not sure it will have any effect myself as I tried this medication when I was in hospital for four weeks last year and it did not help then. I mentioned that I knew someone that does hypnotherapy and that I was thinking of giving that ago.

Hypnosis is thought to work by altering our state of consciousness in a way that the left hand side of our brain is turned off, while the right hand side is made more alert. For example, someone who consciously wants to overcome their fear of spiders may try everything they consciously can to do it, but will still fail as long as their subconscious mind retains this terror and prevents them from succeeding. I am willing to give hypnosis ago in the hope it will stop me from being sick all the time. Dr. Watts is going to refer me to the hospital hypnotherapist, but in the meantime I am letting one of my relatives who is a qualified hypnotherapist try and cure me.

I have also had one of three swabs done to see if I am still carrying MRSA and should get the results next week.

18th March 2010:
I have had a bad few days with the sickness and had to have some fluid via a drip and an anti sickness injection given at the hospital, I have also been given some more anti sickness tablets in the hope it will settle the sickness down again.

I am going away with my mum for a few days and will fill you all in with what is happening when I get back.

14th April 2010:
I had a really nice week away with my mum, the sickness was still the same and I kept being sick on the plane. Mum just asked the steward for a few extra sick bags.

When I got back home I had a few hospital letters waiting for me. Doctor Watts had been told about recent trip to A/E due to the sickness and she's asked to see me again next week, I was not meant to be seeing her again until August so I am not sure why she wants to see me so early really.

I have also got to see the anisetic doctor on the 20th April so he can have chat over the operation that I am having on my knees, I don't fancy being awake when they do it.

Over the next few weeks I have got my Hydro' physio', E.N.T over my ears, Hypnotherapy, to see if it will help with the sickness, and the pain clinic.

I have still not heard back from Mr. N Oxborrow over my spine, but I have been in so much pain in my back and had to wear my back brace a lot more over the past few weeks if I don't hear from him by the time I have had this operation on my knees I will give him a call.

I have got a busy few weeks ahead of me, but I will find time to let you know how things are going and I can always time to help anyone that wants my help or advice.

29th April 2010:
 I went to hospital this week to see the doctor over my continued sickness as I was taken into hospital on Mothering Sunday due to the sickness being so bad.

Mum took some pictures of my stomach with her as my stomach keeps swelling up like balloon and going very hard.

The doctors want me to have a Gastric emptying study done, this procedure will be done by the nuclear medicine physician using radioactive chemicals that will measure the speed with which my food empties from my stomach and enters the small intestines.

When I have the gastric study done I will have to eat a meal , normally scramble egg on toast is given, which will be mixed with a small amount of radioactive material. I will also be given some fluid to drink, which will also have a small amount of radioactive material. A scanner will be placed over my stomach to monitor the amount of radioactivity in my stomach for several hours after I have eaten the meal.  As the food empties my stomach, the amount of radioactivity in the stomach should decrease. The rate at, which the radioactivity leaves my stomach will reflect on the rate the food is emptying from my stomach.

I have got to continue with all my medication including the antibiotic erythromycin and the Domperidone.

The doctor also wanted some blood test doing and as everyone who has followed my story knows needles and me just don’t go together. Mum came in with me while I had my blood test and I asked the nurse to close the door encase I frightened and anybody waiting outside by my screams. I stuffed my jumper in my mouth to muffle the scream. But I only gave a little scream as the nurse who did the blood test managed to find to get the blood with her first attempt. Mum said I did really well.

I am not sure when I will get the appointment for this test but I will give you more information when I have had the test.

When I got home from the hospital I went to the doctors with my mum as keeps getting a lot of kidney infection, which just won’t clear up. While I was with my mum at the doctors, mum asked my doctor if she would look at my arm as I have had a painful lump in my arm that is made worse by my crutches rubbing on it. Four weeks ago the lump was only the size of a pea and now it’s the size of a conker, my doctor said it will be best if I have the lump removed so she is sending me to see a plastic surgeon.

I have not got the date for the surgery on my knees yet but I can’t have the operation done until after my exams now.

The pain in my back has been really bad recently and I have had to result to wearing my back brace more. Mum said she will contact my spinal doctor to find out what is happening.

8th May 2010:
The pain in my back has been really bad and my back brace is too small for me now, mum phoned the hospital to book an appointment for a new casting, but I can't go until the 9th June, I will just have to slim down. The trouble is, even after I have been for the casting for my back brace I still have to wait about four weeks for it to come back and even then it takes a couple of visits before I get the brace. The good news is I will have it before I go away.

13th May 2010:
I  spent most the morning at hospital today having my pre’ op’ check in preparation for the operation on my knees.  It looks like my operation will take place late June or early July as I am going away in September for two weeks and the nurse who did my pre’ op’ check said I will not be able to fly for up to six weeks after my operation, this could be even longer with me having both my knees done at the same time. She is going to phone me when she has spoken to the doctor who is doing the surgery. I was expecting to have a blood test so my mum put some emile cream (magic cream) on my arm, when I went in to see the nurse she never mentioned the blood test this and I was not going to remind her. She had been told that I don’t like needles and said that they will make sure they have some of the magic cream to put on my arm on the day I come into hospital for my operation. My blood pressure and everything else was ok, just have to keep my fingers crossed now that I am not still carrying the MRSA bug.
I was very unwell on the way to the hospital and kept being sick, I’ll be glad when I have had this gastric study done and maybe they can put me on the correct medication, which will help with this sickness.

When I got home a letter had come for me from Buckingham Palace, when I opened it, inside was an invite to the Queens Garden Party on the 22nd June for both my mum and me. So I have got something nice to look forward to. The letter states that we must wear a dress and a hat and unfortunately we cannot take any pictures as they will not let you take your camera in to the grounds of the Palace. But I will tell you all about it on my return.



This is our invite, but not the tickets.

28th May 2010:
I received a phone call from the hospital last week to say that my op' will have to be put back yet again as I am still carrying the MRSA bug, I am back on treatment for three weeks. They cannot do the op' while I am carrying the MRSA bug as if this infection got into my blood stream it could be very dangerous.
The tumour on my arm has grown again and I have received an appointment to see the surgeon on the
17th June (the day after my grans Birthday). I should of seen him on the 27th May but I have got other things on that day. I have a busy few weeks with hospital appointment in June so will let you know how things go.

Things are still the same with the sickness, I have not had any news about the gastric emptying study yet, but these things take time so I will just sit and wait for the letter to pop through my letterbox.

2nd June 2010:
 I went for my first swab this morning to see if I am still carrying the MRSA bug, I won't get the results for a few days, Mary, my nurse asked me to come back next Monday for my next one as I have got to have three clear swabs before I can have the op' on my knees.
No other news really, things are still the same with the pain in my back and the sickness, but I am doing ok and getting on with the things. I have just had a load of wristbands made for my charity so when you get time take a look on my Items for sale link and see if you would like to buy one from me, every penny from the sale of my wristbands goes to When You Wish upon a Star. towards my target.

25th May 2010:
 I have now finished university for the summer, and I sat my last exam today. I was not over keen on this exam if I am being honest. I will get my grades in July sometime; I will let you know what I got. I am now looking at what I can do over the summer to keep me busy, with charity and hobbies. I am in hope soon to start selling my silicone wristbands for the charity and I am hoping to go to my local Asda store and standing with the wish mascot “Titch” and selling the wristbands along with some pin badges   one weekend.

I know I am due an operation over the summer too, but I keep failing my pre op, but hopefully I will pass it soon and I can have the op’ before I go on holiday with my mum and dad.

10th June 2010:
Today I went along to meet Mrs Kirsty Craig in Chester. This is because not so long ago, I won a business connection award and Santander Community Award. This was because the style of work that I have been doing and the skills I have used are to a business standard. And due to do doing a lot of community work I was awarded the Santander award. I was unable to go to the event on the Friday. This was because I was in Ireland at the time. So I met Kirsty on the Friday. Please see the picture below of me reserving the business connection. I was happy and honoured to reserve both of these awards, and I was happy to get the £500 which is going to the charity when you wish upon a star.



Receiving my award

Handing over the cheque for £500.00 to Wish

13th June 2010:
I went for my casting for my new back brace last Wednesday as my other one is too small. You should of seen the outfit that Paul and Keith (the guys doing the casting for my brace) made for me, they put two white stockings over my body and one on my head to keep my hair out of the way, I looked like a Mummy from a horror film. My mum took some pictures on her phone so I will try and get them on my site for you. They then wrapped me in plaster cast to get the correct mould for my brace. I have decided to go for a white brace this time much to the disappointment of Keith and Paul, they wanted me to have one with teddies on it, which they nearly talked me into. 
Unfortunately my new brace will not be ready in time for me to travel to the Queens Garden Party so I will have to hope they let me into Buckingham Palace with all my pain killing tablets lol. 

23rd June 2010:
 last week I went to see plastic surgeon over the tumour in my arm, the doctor looked at my arm and agreed that it would be best to remove the tumour in my arm as it is growing, he also looked at some of the tumours that are just under the skin in my tummy and back, which are giving me some pain due to the band on my trousers pressing on them, he is also going to remove them at the same time. He was going to do the op’ under a local anaesthetic but because I have a phobia of needles he is going to do the op’ under a general anaesthetic. The op’ should be done before I go away in September.

I have now had two clear swabs from my MRSA bug and I had my 3rd swab taken last Monday, I just need that one to be clear too and then the doctor can make arrangements to do the op’ on my knees.

I have got the date for my gastro test, my first one is on Wednesday 21st July, I have got to attend the Neurogastroenterology unit. I am having hydrogen breath test, which is to investigate whether there is a bacterial overgrowth in the small intestines. I have got to drink a glucose solution and then give breath samples at ten minute intervals, by blowing into tube. The test will take about three and half hours to do. I just hope I can keep the solution down as the sickness is really bad at the moment.

My second test is on the 27th July in the same unit and is called a lactose intolerance test, this test involves me drinking a glass of sweet liquid (lactose) after which I have got to blow into a tube every 30 minutes to collect samples of my breath. This test will take 4 hours 30 minutes. I have then got to make an appointment with Dr Watts to get results.

24th June 2010:
 I went to see Dr I Lieberman this morning at the pain clinic, I had to wear my old back brace as my back is really giving me some pain at the moment. Dr. Lieberman is arranging for me to have another spinal scan using the contrast dye and I go back and see him in six months.

I should get my new back brace on the 7th July, which will help the pain in my back.

Take a look at my fun things that I get up to to read how my visit to the Queens Garden Party went and to see some pictures.

10th July 2010:
I went for my new back brace but it needed some more work doing on it so I have got to go back on the 28th July when it will finished, Keith did want me back sooner but I have got so any hospital visits over this next three weeks it'd really difficult for me to fit in.

The sickness as been really bad too so the sooner I have these other test the better, then maybe I can start on some treatment that will help with the sickness.

1st August 2010:

The last few weeks have been pretty busy with one thing or another. I have been back and to for hospital appointments and test.

I have now got my new back brace, which is much better than my last one, Keith and Paul did a good job this time (the guys who measure me for the back brace).

I have had both my breath test, one was to see if I was lactose intolerance and the other was to see if I had a bacterial overgrowth, can’t say I enjoyed the stuff that I had to drink for any of the test. I was a little sick after the first test but was able to carry on with the test and I am pleased to say both test came back clear. The sickness is no better and I still continue to be sick almost everyday. I am back to see Dr Watts at the end of August when I will find out what happens next.

I received a letter off Dr S Huson who has now received the results of my Dyslexic test. Dr S Huson wants to see both my mum and me at the end of August to chat about how our health is doing.

My mum phoned the hospital last week to try and find out what was happening about the operation on my knees as I have now had three clear results from the MRSA bug that I had and the operation on my knees can now go ahead. Unfortunately the doctor as now said that I cannot have the op’ on my knees before I go away as I will not be able to fly for six weeks after surgery, mum told him that she was told it was only two weeks but the doctor said because I was having both knees done that it would be six weeks before he would allow me to fly due to the risk of me getting a blood clot. He is now looking at doing it in September, which is a bit of pain as I start back at Uni’ then, we will just have to see how things go I suppose.

It does not look a so the operation on my arm and tummy will take place until after I get back from holiday either for the same reason’s but I will know more about that op’ next week after my has spoken with the doctor who is doing the op’.

I also went for the scan on my spine last week as the pain is getting worse, I was told that I would be having a needle, which I was not happy about, mum got a tube of magic cream for me so that the needle would not hurt, when I went in for the scan and I mentioned how scared I was of injection the doctor doing the scan decided he would not use the dye which meant I got away with having the injection.

There as been a delay on my book as I have been asked to resend it in PDF format, which is now going to take me a bit of time to do as I can only sit at the PC for a sort time before my back starts to hurt.

Also please don’t forget to visit my what’s for sale link as I have some great items for sale with every penny going to towards granting a wish for a poorly child who has a life threatening condition. Please help me to raise enough money to send a group of 30/40 poorly children on a five day holiday with their families while they can still enjoy some quality time spent together. You can also make a donation on my just giving link, which is safe and secure. The address where to send to can be found on the what’s for sale link too. “Thank You”

9th August 2010:
 I have got a very exciting item that I am going to be putting up for auction very soon, but as it will be also being auctioned by the press please come back next week for more details. thank you.

29th August 2010:
I went to see Dr Watts last week, Dr Watts is the doctor that I see for my gastroparesis, I have not seen Dr. Watts since I was in hospital as I normally see one of her registrar’s, anyway Dr Watts was really nice and we had a chat about how things had been going over the past few months and she gave me the results of both my last breath test, which had both come back clear. So I am not allergic to milk and I don’t have an infection in stomach.

After telling Dr. Watts how my sickness had been she said that it was important that I came into hospital when the sickness gets really bad, I told her that I felt silly coming into a busy A/E department just with sickness when there are people who are bleeding to death sat in the waiting room.

Dr. Watts said that it was very important that I did come into hospital as if I got too dehydrated it could be very dangerous for me with my condition and that if it made me feel any better that she would write a letter for me saying that I suffer from a severe form of gastroparesis and that she (Dr. Watts) as asked me to come into A/E department when the sickness gets bad and that she must be informed that I am in the hospital.
Dr Watts is going to send the letter to me for me to keep. I have got to go back and see her in three months.

 I also saw Dr Sue Huson this week, if you remember Dr Huson is my NF doctor and as I had not seen her for a while she said that she needed to see both my mum and me. We were running late like normal due to my transport being late, which was not the drivers fault, I am really grateful that they take me to all my hospital appointments.

Dr. Huson gave both my mum and I a good medical, mum had a couple of tumours that were giving her some pain and she going to see if they can be removed. Mum also baffled
Dr. Huson as to why her lips were so blue, Dr. Huson admitted that it was a new one her. So if anyone else with NF gets blue lips please let me know.

 My medical went ok, the weakness in my feet were no better and Dr. Huson said that it was important that I was kept an eye on every six months due to how my NF as affected things.

I had no new problems with my NF so I don’t have to go back for another six months now.

 I hope to give you a date for when my book is on sale, which should be very soon now, so please keep bobbing back to find out the date “thank you”.

Although NF is a wide ranging disorder, each of us who have NF shares a common bond. NF does not necessarily bring each of us severe complications, but it does bring each of us a measure of uncertainty. No doctor can tell you how your NF will affect you, because they don’t know. NF is different for everyone.

The sharing of information and support can be valuable. Each one of us has a unique life experience in living with NF which we may find beneficial to share. If you would like to share your story about life with NF, mild or complicated alike, then please sign into my guest book or email me and let’s help each other today.

My story, my journey continues and I will not let NF win! I hope one day to have my book published and that too can start helping people.

Will up date more soon
In the meantime please don’t forget if I can help you in anyway please let me know, I can't help answer any serious medical questions, but I can help you with anything that may be worrying you, or help you understand what will be happening to you. This website is not meant to be technical or full of medical jargon. I’m here as a support for you, to be a friend, someone you can sound-off at when you're feeling down. If you need any advice, or just want somewhere you can meet fellow sufferers then this is the place to be!

While people of any age will struggle to adjust to a life with pain it can be particularly hard for teenagers and those in their early 20s. At a time when the world should be opening up, offering exciting things, it can feel as if a door has slammed shut instead. Don't dwell on what you can't do, but concentrate on what you can, explore new interests you will be amazed how much it helps.

Anyone can tell you it won’t hurt tomorrow. But I’m here to listen while it hurts today.

I will keep checking my forum and e-mail while I'm in hospital so don't worry I will get back to you.

Thank you to all my doctors, nurses, family and friends for getting me through some of my difficult times.

Take care

Love Kirsty x x



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