During one climbing trip I was fine, as usual, climbing the rockface - but at the end of the day carrying a heavy rucksack back up the cliff caused me some difficulty and I found I had to keep stopping for breath. The metal gear hanging from my harness also left alarming bruises on my legs.
Apalled and surprised at my lack of fitness I joined a gym when we got back ! At first this was not too bad but after a couple of weeks, when I would have expected my performance to be improving, it instead began to deteriorate with me having to get off the cardio machines because I felt so badly out of breath.
In May we went hillwalking in the Lake District but I really struggled on the steep parts. Once on the top of the ridge though I was fine and could have walked all day. Around this time I found that after climbing two flights of stairs I had to sit down. Eventually even one flight of stairs began to leave me breathless.
I was reluctant to go to the doctor in case I was wasting his time and I was merely unfit.By the time you get to 55 years old you do expect to slow down a little!
The concrete evidence I needed came in June when I went on my usual 11 mile cycle route. Having joined the gym I hadn't done any outdoor cycling for a while so decided to test myself on the circular route with which I was very familiar. I had cycled it when fit and unfit, in good and adverse weather but on my test run when I came to the first minor hill and had to dismount after 10 metres I knew that something was definitely wrong and at last made an appointment at the GP's surgery.
I saw the Practice Nurse at the GP's surgery and she said that it looked like anaemia. I had blood taken and was asked to come back in a week for the results. However on the same afternoon I received a phonecall from the surgery to say to attend the next day to see the doctor.
Things moved rapidly from there. My haemoglobin was 7.5, my white blood cells were low and my platelets were 23.
JULY 8th 2008
I was referred to the hospital consultant who carried out a bone marrow biopsy which suggested a diagnosis of aplastic anaemia. Another bonemarrow biopsy was taken which confirmed the diagnosis.
As my consultant was away for some days I was put on steroids (dexamethazone) along with a host of other drugs required to deal with side effects. This was a holding measure till my consultant returned. Usually I balk at taking any tablets so it was a bit scary to have a carrier bagful! - not to mention the cost of course which came to £35 + (I now of course have a prepayment card which has helped considerably.) I also received blood and platelets as required.
Our holiday plans had been to go kayaking in the Outer Hebrides and to have a few days in France. My main holiday was to have been in October - trekking in Nepal. However these had to be cancelled. We did however manage to negotiate 10 days in Scotland.
19th AUGUST 2008
Plans were put in place for ATG treatment. After some discussion with Professor Marsh at King's College Hospital in London, the decision was made to have the treatment done at the Royal Bournemouth Hospital (about 1 hour from Weymouth where I live) The consultant there - was someone who had done research into ATG and had worked with Prof Marsh at St George's Hospital on Aplastic Anaemia. She was on holiday until 22nd Sept so it was agreed that I should go into hospital on Mon 22nd Sept.
22nd SEPTEMBER 2008
I was admitted to the Royal Bournemouth Hospital, settled into my isolation room a room about 12 ft square overlooking a courtyard. There was a sink, television and radio (free) a wardrobe and shelves.The private shower room was opposite. After the usual paperwork blood was taken for tests.
Tuesday 23rd Sept was to have been the first day of ATG (rabbit) - the horse serum having been discontinued. However it transpired that the bloods showed that I had tested positive to
toxiplasmosis and I was sent home pending a confirmation of the virus.
Toxoplasmosis is a parisitic disease, carried by around 20% of the British population and can be caused through contact with cat faeces - often through gardening without gloves or through eating undercooked lamb or pork. It usually remains undetected but can be problematical in someone with a compromised immune system.
It was indeed confirmed and discussions took place with the toxiplasmosis expert in Swansea regarding the viral loading, how long I'd had the virus and the safety of continuing with the treatment.
6th October 2008
It was decided that the treatment should go ahead so I was re-admitted to the Royal Bournemouth Hospital. I had had a Picc Line inserted into my arm earlier but this showed a leak so it was decided to remove it and replace it with a Hickman Line in my chest.
8th OCTOBER 2008.
The preparations were done and the treatment started with close observations carried out particularly for the first 2 hours. Thus began my cosy relationship with the ivac machine!
I had a powerful headache, a temperature of 38 degrees + and felt a little shivery with achy joints
However, at 9pm there was a diversion - the site of the Hickman Line began to bleed...and bleed..and bleed! The ATG was stopped and platelets given. The site continued to bleed off and on through the night and into the next day. Eventually, after various measures had been tried, the bleeding stopped around 5.30 pm. The line had been pulling on the wound and keeping it open.
10th OCTOBER 2008
I woke with a sinus headache and a slight temperature and had a quiet morning snoozing due to lack of sleep through the night. I had some visitors in the afternoon - it was great to hear some news of the outside world and talk about non-medical subjects. The ATG was restarted in the afternoon and continued for 18 hours or so with regular observations. I had one short rigor during the night but otherwise everything was fine.
11th October 2008
Apart from some diarrhoea there was nothing much to report. Being a Saturday the hospital routines started later and the day was more relaxed. My next ATG was started at 8pm and I slept through till 8 am when the buzzer went off to indicate the end of treatment.
12th October 2008
Another fairly relaxed day. The ATG was started around 5 pm and went on through the night. Observations were taken less often as things had settled down
13th October 2008
Last day of ATG - all went well with the usual blood test etc throught the day. Medication was readjusted and reduced since my "big bleed". I had a sinus x-ray and therefore got a trip through the hospital before being hooked up to the drip stand again for the treatment. I was taken in a wheelchair and had to wear a mask. It was a novel experience with lots of people looking and wondering what I'd got that I needed to wear a mask. Of course it was what they might have that was the problem! All in all I was feeling pretty good.
14th October 2008
The last ATG finished around 5 am. I was feeling pretty good and managed to wash my hair in the shower and got dressed in day clothes. The platelets I'd been given had incremented and were at 40, neutrophils were 0 and blood was low so 2 more units booked for the next day. I felt pretty good. I had some more platelets as the level was low. Now began a period of waiting and watching to see if the serum sickness was going to kick in. The most exciting event was that my bed was leaking hydraulic fluid and had to be changed for another one. The beds were remarkably comfortable and I generally slept well.
18th October 2008
I woke up with a stiff neck and a temperature of 37.8. My lymph nodes were enlarged. The temp went up to 39 and I felt tired and a bit rough. After painkillers I felt fine again.More platelets as my level was 15.
19th October 2008
I woke up with a headache again, my neck was tender and I had a temp of 38.6. Didn't want to do much as not feeling great. More platelets as level was 10
20th October 2008
Well into serum sickness with a temp of 39.2 and a headache. Lots of blood blisters in my mouth and an all over rash. The petechiae in my groin were particularly impressive! I had a shower but felt spaced out and it turned out that I had very low blood pressure - 75/ 40 - so low that I wasn't even allowed to sit up in bed! I also had swollen lymph nodes. My liver count which had been 30 (it should be under 40) went up to 250 and then to 900! So everything was checked - all sorts of scans. The docs were not sure if these symptoms were caused by toxoplasmosis, serum sickness or a reaction to the different medications. However the scans came back showing no major problems. The medication was adjusted again - now on another set of antibiotics.
21st October 2008
Woke with headache, stiff and swollen neck and sciatica. Hips also stiff. Temp 39.3 Very dotty rash which was slightly itchy. Still had the groin rash and blood spots in mouth. I looked a bit yellowish with the beginnings of a cushenoid face - not my best look! Prednisolone has now been stopped. Liver enzyme count had gone back to 450. Felt very sleepy all day and unable to concentrate for long. On 3 different intravenus antibiotics. Had platelets in late evening.Put on 3kg in one day! - due to the fluids I've been on.
22nd October 2008
Woke up feeling a bit better with only mild aches and pains. Neck still stiff and still had rash in groin. Other petechae on neck,hands,arms and back. Also blood blothches in mouth.In afternoon had CT scan for chest and lungs checking for fungal infection. This was negative so lumbar puncture tomorrow. Nearly had someone else's lunch by mistake - a yummy salad which I wasn't allowed. Platelets given and one unit of blood - another tomorrow. Had put on a huge amount of weight in the previous 2 days - now nearly 11 stone (usual weight 9 1/2 stone) officially whale sized - swollen knees and ankles.
23rd October 2008
Woke early at 4.30 with all the bones in my face aching - relieved by paracetamol. A bit of difficulty swallowing, there seemed to be a soft swelling down in my throat but the docs couldn't see anything when they looked in my mouth. The giant magnesium tablets were the worst to take. Still on all the antibiotics and now on fruzomide to get rid of the excess fluid. Had my 2nd unit of blood and 2 pools of platelets in preparation for the lumbar puncture! Temp back to 36. Had lumbar puncture - no problem it wasn't painful in the least.
24th October 2008
Had a good night's sleep apart from the need to call a nurse at 4 am for pain relief for aching face.Woke up again at 6.45 am feeling good Blood pressure was high 180/90 which they put down to fluid as my temp was fine. They found a lymph node in the chest x-ray so arrangements made for full CT scan. The lumbar puncture looked fine but it was sent off to Swansea for the toxoplasmosis expert to have a look. Back on prednisolone and still on 4 antibiotics. Breakthrough on the food front - found out that certain foods could be brought from outside ( avocado, greek yoghurt and maybe even a supermarket curry!) and also that the hospital does gluten free bread! (I am wheat intolerant) - sandwiches at last!
25th October 2008
Felt a bit down with a sore bottom caused by diarrhoea bottom but nurses offered help with specialist creams etc and the situation was much improved.It was interesting that in all the different treatments and reactions this was the only thing that ever got me down. Some drug changes - a potassium drink which tasted vile and one antibiotic stopped. Fluid balance improved too . Temp was good but blood pressure was high.
26th October 2008
Still on 3 antibiotics + cyclosporin,acyclovir,transexamic acid (anti-bleeding), codeine, magnesium, potassium and fruzomide. Had a pool of platelets - count was 19
27th October 2008
Felt good and even managed a bit of exercise on a pedalling machine which was available. Nil by mouth from 10 am due to full body CT scan - very simple procedure the worst part being having to have a cannula put in! Had platelets (count 13) Was put on a prophylactic anti-fungal. The highlight of the day was a supermarket curry brought in by my husband and microwaved in the evening.
28th October 2008
Had a good night's sleep. Went for a shower and hair wash with the drip stand still attached! I was shampooing my hair with my eyes closed when I had a Psycho moment! I opened my eyes to see the shower screen awash with blood - the cannula had fallen out of my hand! - soon sorted though. Good news - could now stop measuring urine output and more medication cut back - off the iv antibiotics. The "lymph node" did not show up in the CT scan so all clear and although the results were not yet back from the lumbar puncture the doc thought it would be fine as I looked so well.
29th October 2008
Good night's sleep. A quiet day with further drug adjustments and reductions. Blood pressure quite high but it fell through the day. They thought it was probably due to the cyclosporin. Had platelets (count 9) Good to be free of the iv antibiotics and thus the drip stand!
30th October 2008
Blood pressure a little high 170 / 90 - talk of going home! Had platelets (count 9) Weight down to 62 kg but still have the cushenoid face. I did feel thinner though
31st October 2008
Slept well and found out at doctors' rounds that I was to be discharged the next day. Had platelets. Weight down to 61 kg (around 9 st 7 lbs) Significant atrophy of muscles - not surprising after a month in an isolation room with virtually no exercise. - a long way from my usually very active life. I was very excited about going home but also sad to be leaving the hospital. I had really enjoyed my time there - all that reading and relaxing completely stress free, not to mention the excellent care and attention I had received.
1st November 2008
Gathered up all my personal belongings, dismantled my library of books etc ready to go with my huge carrier bag of drugs and another of mouthwashes. However no quick getaway as the platelet count was 5 and so more platelets needed to be ordered and were not administered until 4pm. The docs suggested that my platelets had become refractory and that I would need specially tissue matched ones from now on.
The plan was that the aftercare ie blood and platelet transfusions were to be given at my local hospital with monthly checks at Bournemouth. One of the nurses said that what often happens after so long in hospital is that the patient bursts into tears when they get home. The weather was shocking - driving rain and howling gales a bit of a change from the air conditioning in my isolation room ! We drove the one hour journey home but no tears!
2nd November 2008
Woke up with a mild sore throat and although a bit wobbly slowly got back into normal routines - shopping, cooking etc. Was slightly breathless climbing the stairs - the first for more than a month! Had a look at my weird body shape - scrawny arms and legs, plump stomach and no waist. 9st 3 lbs, face like a chipmunk!
November 2008
I felt very weak for the first few days, unable to walk far without wanting to sit down. By the afternoons I was ready for a rest. I attended the hospital a couple of times a week to have cyclosporin levels checked and be cross matched for blood transfusions as well as receiving platelets - now tissue matched. By the end of the month my levels were: HB 8.2 WBC 1.8 N 0.6 P 10
December and January 2008
I gradually gained strength and coped with the usual Christmas stresses of buying, cooking and house keeping for a houseful of family (I have 2 boys at Uni and one in the armed forces). We usually host a walk for around 25 people with hot food to follow back at our house but decided to give it a miss this year. However I did manage to host a Burns Supper in January for 16 people. Visits to the hospital settled into a routine of once a week for blood count, cyclosporin levels and platelets on the same day with blood later on in the week if required. (Blood was needed once every 3 weeks approx)
Returning to work was still out of the question as I am a teacher and cannot mix with children and their associated coughs, sneezes, chicken pox etc while I still have a compromised immune system.
Around mid January I began to take up some gentle exercise. We joined the gym and I exercised on the treadmill - walking - as well as using other machines for arm and leg strengthening with a view to returning at some time to my favourite sport of rock climbing. I also started yoga. I found that my performance was greatly affected by my blood level - good for the week after a blood transfusion but declining as my haemoglobin went below 8.5 ( I am usually transfused around 7.9)
Current Situation
February 2008
I continue to become stronger and have taken up further exercise at the gym, using the crosstrainer and some very gentle rowing. I always wear a heart monitor and make sure that I don't over exert myself. I have received different advice on exercise from different doctors - from no exercise other than walking to gentle exercise as long as there is no chance of an impact injury which would cause me to bleed. For some people exercise is not very important but for me it constituted such a large part of my life before aplastic anaemia (rock climbing, kayaking, cycling) that it is essential to my general well being that I am able to take some form of exercise. I have certainly felt much better since I started back to the gym. I seem to need more sleep than previously - going to bed an hour earlier than I used to and sleeping for an hour later in the morning. Particularly on the weeks when my blood level is below 9 I find I have less "get up and go" and prefer to stay around the house and am less keen on going out at night though this may change as the weather improves.
I am now into the 5th month since the end of my ATG treatment with no real significant rise in blood levels - my latest being HB 8.9 WBC 1.7 Neut 0.9 and Platelets 12.
My main frustrations are not being able to climb at present and not being able to plan ahead as transfusion requirements are variable. There is also the possibility of furter treatment. At present, platelet transfusions are weekly so it means that only short breaks are possible and have to be carefully arranged.
We thought we'd treat ourselves to some winter sunshine staying with friends in Spain for a few days at the end of Feb. I checked with a couple of doctors who thought this would be fine as long as I had health insurance. This I got (£156 for a year for trips within Europe and with AA being covered) and went ahead with flights etc. However when my consultant found out he was less than keen.His concern is the return flight with depleted platelets . I hadn't even thought of that but he has now warily agreed and so the trip is on . I shall be topped up with 3 units of blood and platelets on Thursday before departure on Friday 27th.
