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(The first part of this article was originally written 30^th August 2004 and has since had updates and photographs added)

Background:

I am a 54 year, old male, married with three adult children living in coastal New South Wales , Australia . I have always been quite fit, a non-smoker, non-drinker, and I have played field hockey on a regular basis every year for over 45years. I have never been overweight and I have been conscious of keeping to a healthy diet throughout my life. These factors I feel, have contributed to my perfect health (other than the occasional sporting injury) that I have enjoyed up until 27^th January 2004 .

The First Illness:

On the 27^th January 2004 , a headache started, continued for 24hrs a day for thirteen days, increasing in severity as each day passed. Up until this time, I rarely got a headache and if I did I would lie down for an hour or so and the headache would go. Normally I wouldn’t take a headache tablet (perhaps two tablets a year on average if that and it would have to be a pretty bad headache for me to take a tablet).

After 5 days of headache and countless painkillers that provided little relief, I consulted a doctor (a Monday morning) who ordered a blood test and prescribed really strong painkillers. The doctor thought I had a “common” virus. Three days later (Wednesday) I consulted another doctor who also thought I had a common virus and he also ordered a blood test. I received the first blood test results back two days later (Friday). The doctor reported that there were “No major abnormalities” with my blood. I have since re-examined the pathology report myself (now that I have a better understanding of blood counts). The report states low white blood cells WBC 3.2 (normal range 4.0 to 11.0) with Leukopenia and Neutropenia - Mono 0.1 (normal range 0.2 to 1.0), Neutrophils 1.4 (normal range 2.0 to 7.5), and Thrombocytopenia. My platelets were 82 (normal 150 to 400). To date I have not seen what the second blood test showed.

On the twelfth day of my headaches (Sunday) I had high temperatures and spontaneous vomiting whenever I tried to drink. On Monday morning my wife called the second doctor I had consulted. He hadn’t expected my condition to have deteriorated and arranged a CAT scan for 3.00pm that afternoon with a follow-up doctor’s appointment at 1.30pm the next day (Tuesday).

The CAT scan and Hospital Emergency:

It was a struggle of survival getting into a car and being driven the 10 km to the Radiologists. I came out of the CAT scan ashen faced, shaking and mentally not with it. My wife tried to call the doctor from the radiologists only to find that he had gone home for the day. My wife thought I was dying and that one of the receptionists at the Radiologist’s would surely call an ambulance. They didn’t, nor did they advise her to take me to the hospital. At this stage, I was beyond caring and told my wife to take me home. Lucky for me my wife made the decision to take me straight from the Radiologists to the Hospital Emergency Department. I believe coma, severe brain damage or even death may have resulted had we waited for the doctor’s appointment the next afternoon.

I was immediately seen to by a doctor at the Hospital Emergency Department and put on a saline drip and IV antibiotics (I was dehydrated not having drunk or eaten for over 18 hours). The hospital contacted the Radiologist for the results of the CAT scan. The Triage nurse had to argue with the staff at the Radiologists for them to release my CAT scan results, even though I had paid for them. The scan showed nothing abnormal.

While in emergency numerous blood tests were done as well as a lumbar puncture. About 7-8hrs after being admitted to hospital, the emergency doctor said that they had found something in my blood but didn’t know what. He also said that I had done “the right thing by coming to Emergency”. The next day (Tuesday) I was told they had grown yeast from my spinal fluid but had yet to identify it. By Wednesday the yeast had been identified as Cryptococcal (Fungal) Meningitis (very rare form of meningitis and usually only caught by HIV patients with severely suppressed immune systems). I wasn’t in a HIV risk group and a HIV test by the local hospital proved negative.  I was placed on emergency transfer by air ambulance to a major public hospital in Sydney for treatment of the meningitis. HCL had not been diagnosed at this stage.

Diagnosis of Hairy Cell Leukaemia:

More blood tests (including another HIV test) and another lumbar puncture followed in Sydney . When my specialist (in ‘Infectious Diseases and Microbiology’ - a “Great” doctor, I can’t praise him highly enough!) knew that HIV wasn’t the cause of my suppressed immune system he began investigating for another cause. HCL was eventually diagnosed and then confirmed by a bone marrow biopsy. I was the first case of HCL my specialist had personally diagnosed, as it wasn’t in his normal area of medical specialisation.

Before the HCL could be treated I first I had to beat the meningitis. My specialist informed me that the meningitis would eventually kill me if not stopped.  I spent 26 days in the hospital in Sydney being treated for the meningitis. For about 23 of these days I was on an IV Drip 24hrs a day with daily blood tests. One of the drugs normally given to treat Cryptococcal Meningitis could not be given as it would damage my bone marrow and consequently affect my blood (already compromised by the HCL). I had a third lumbar puncture just before discharge to make sure the meningitis was under control.

In hospital during treatment for Cryptococcal Meningitis February 2004

(It never entered my wife’s or my mind that I wouldn’t get better. It was just “Okay, what treatment do I have to have next to get me well”).

After discharge from the hospital in Sydney , my specialist maintained (and still maintains), his interest in the progress of my health (even though I am no longer under his immediate care). He had requested copies of weekly blood tests and rang me three days before I was due to start chemo. He was concerned about some of my blood counts from the blood test I had two days earlier. If the counts were accurate, he wouldn’t advise starting chemo. My specialist subsequently arranged (by phone and fax from 600km away) for me to have, within half-an-hour, another blood test at my local hospital. The results came back okay and he was happy for me to start on the course of chemo.   

The Chemotherapy:

Five weeks after being discharged from the hospital in Sydney I started Chemo as an outpatient at my local hospital. A visiting haematologist supervised my treatment. To date I have had 3 doses of chemo (Cladribine) spread over three weeks. The weekly interval between doses was due to the fact that I had been treated for meningitis and my haematologist wanted to go easy on my system. My haematologist originally planned for a total of 5 doses, each dose a week apart with a review after the third dose.  

Immediately before the third dose of chemo my neutrophil count was 0.8. The oncology nurse told me that normally they don’t go ahead with chemo once your neutrophil count gets below 1.0. The nurse rang my haematologist in Sydney for advice. He told her to go ahead and administer the chemo and also to start me on a course of GCSF injections (Granulocyte Colony Stimulating Factor – a genetically engineered product) to boost my white cell production. Within two days of the third dose of chemo I was in hospital with a temperature over 38 degrees and classified with neutropenia (low neutrophil count). Prior to admission I had also found I tired very easily. If I walked down the stairs at home and back up (total of 34 steps) I was exhausted and needed to rest.

Another life threatening experience:

This first hospital admission lasted 7 days. Three days before discharge my red blood count had dropped (explains the tiredness) and I had transfusions of three units of blood. As soon as I arrived home from hospital I felt hot and checked my temperature. It was again over 38 degrees. I decided I did not want to go back to hospital unless my temperature rose considerably higher. Fortunately it stabilised and after a couple of hours began to drop.  

I had been blowing up bloodstained mucus while in hospital and continued to do so at home. The day after discharge small blood blisters appeared inside my lips and a large one inside my right cheek (an ecchymosis). I also had red blotches all down the insides of my legs (petechia). At the time my wife and I didn’t know what these were caused by. My wife telephoned the oncology nurse and she said it wasn’t anything to worry about, that it was a “normal side effect of the chemo”. Consequently, we didn’t worry about these symptoms. I had my regular blood check two days later and kept my appointment with the haematologist the day after. By this time I had started to get bruising under my tongue from where I had been placing a thermometer when checking my temperature.  

Five minutes before my appointment with the haematologist the hospital oncology registrar checked my blood test from the previous day. I was immediately told that I would have to be admitted to hospital straight away. I couldn’t even go home to get an overnight bag and personal belongings. The blood test indicated that my platelet count was down to 1.0 (normal range 150 to 400). My haematologist (he flew up from Sydney every Friday for a Clinic) immediately set about ordering units of platelets from the Red Cross Blood Bank in Sydney .  He had three units of platelets flown up as a matter of urgency.  

The platelets arrived that evening but I did not have them transfused until after 8.00am the next morning. This was due to the oncology registrar forgetting to write instructions on my hospital medical chart for the transfusions to take place. The sister in-charge, consulted the doctor on duty who knew nothing about my case and wasn’t prepared to authorise the platelet transfusions. Obviously, for whatever reasons, neither the sister in-charge or the doctor on duty were prepared to ring the oncology registrar at home for a verbal authorisation.

At the time I remained ignorant of how serious my condition was (I have since read that with a platelet count of 0.5 you can have spontaneous internal bleeding). Following the platelet transfusion nursing staff were not allowed take my blood pressure for the next week in case the procedure caused internal bleeding. The extremely low platelet count was first thought, caused by a rare reaction to the blood transfusions of the previous week. However, testing proved that this wasn’t the case. The cause was eventually put down to an adverse reaction to one of the antibiotics I had during my recent hospitalisation.

Be aware of too many Antibiotics:

I must stress at this point that generally I have had exceptionally good doctors and nurses caring for me in the NSW public health system ( Australia ). For example, on another occasion my Infectious Diseases Specialist rang by phone from his sick bed (he was home ill) in response to a message left with his receptionist three days earlier by my wife (my wife was unable to reach the doctor because he was at home sick). At the time, I had been in hospital with an infection for three days. I actually had an infection on this occasion, as it was the only time since starting chemo that I have looked and actually felt sick.  

Three days after admission to hospital I felt better but my temperature kept spiking (over 38 degrees) each morning for the next three days. The oncology doctors treating me at the time were at a loss to explain the continuing high temperatures because I no longer felt or looked ill. They were not sure if there was still an underlying infection and consequently would not discharge me from hospital or take me off the antibiotics.

I suggested they contact my “Infectious Diseases and Microbiology” specialist in Sydney , as infection was his area of expertise. To their credit, they tried but were told he was home ill. This was on the same day my “Infectious Diseases and microbiology” specialist returned my wife’s call. He rang her mobile (from his sick bed) while she was visiting me in hospital. He spoke to me to find out what was going on. The specialist then rang the oncology doctor(s) and suggested that I be taken off the antibiotic regime they had me on. This was done and my temperature ceased to spike and I was discharged from hospital within 24 hours.

From what I remember, my “Infectious Diseases and microbiology” specialist explained it thus: You present with symptoms (eg. high temperatures), which could indicate infection (high temperatures could also only be a reaction to the chemo and not infection). The doctors will hit you with antibiotics to combat possible infection. They will try a number of antibiotics in case the infection doesn’t respond to any one particular antibiotic. If the doctors keep trying different antibiotics because you continue to present with symptoms, sooner or later the possibility exists that you will strike an antibiotic that you are allergic to. This may then inturn cause symptoms like high temperatures. At some point (a professional medical judgement), the doctors need to start re-testing your blood etc., to try and isolate the cause of the infection rather than go on treating the symptoms with one antibiotic after another.

I had allergic reactions to antibiotics on two occasions while undergoing treatment for chemotherapy side effects in hospital.  

The Good News:

The three doses of chemo I had really knocked by blood counts about. Five weeks after the third dose of chemo (and before any decision for further chemo was to be made) I had a bone marrow biopsy. The results were great! The haematologist told me I was in remission and that he didn't want to see me for three months. However, it has taken another ten weeks before my blood counts were back to at least minimum normal levels (Lymphocytes were still below minimum normal levels 15 weeks after the last dose of chemo. I have yet to have a more recent blood test).  A blood test when next I see the haematologist will, I expect, verify no HCL come back and all blood counts back within normal range.

Treatment Side-effects

I have been extremely lucky in that I have suffered very few side effects other than:

* 3 hospital admissions for infection since starting chemo. I have had neutropenia (required 6 self administered injections of GCSF). This was followed by a low red blood cell count (required 3 transfusions of blood), followed by a platelet count of one - caused by a reaction to one of the antibiotics (required 3 transfusions of platelets, cessation of all antibiotics followed by 6 transfusions of antibodies). In all, I had a total of 12 blood product transfusions within a week.

*My hair has thinned out a little but not significantly. I have experienced no feelings of nausea or headache.

*I did experience adverse reactions to antibiotics (a drop in red blood cells that made me tire easily and a drop in platelets). Also I suffered from skin rashes and itchiness that I feel were side effects of the antibiotic Bactrim DS. This antibiotic was prescribed as a prophylactic to prevent infection while undergoing chemotherapy.

*Weight gain, caused by eating too much in the weeks leading up to starting chemotherapy. My wife told me I would lose my appetite once I commenced chemo. However, I didn’t lose my appetite (except for hospital food).

Note: When on chemo the advice was to present to hospital emergency if my temperature went above 38.5 degrees C or was above 38 degrees C for more than an hour. The high temperature could be a reaction to the chemo or it could be caused by an infection. Whenever I was admitted to hospital with a high temperature the routine that followed was: a course of antibiotics by IV drip (to fight a possible but yet unknown infection) and a chest X-Ray to make sure it was not pneumonia. On each occasion I had to stay in hospital until my temperature remained below 38 degrees C for more than 24 hours.

Lessons Learned:

1. If you are really sick go straight to the Hospital Emergency Department.

Do not go to your General Practitioner if you are really ill. A GP cannot do the variety of tests as quickly as that of an onsite, hospital pathology lab. In my case the doctor in hospital emergency just ordered one test after another from the hospital pathology lab until he found out what was wrong with me.

2. Take responsibility for your own health.

My wife and I learned from this experience, that you have to take responsibility for your own health. Don’t necessarily expect others to always be aware, knowledgeable or concerned even though they are doctors, nurses or other healthcare professionals. You hope they will be but they are only human and may have other things on their minds or think that you are someone else’s responsibility not theirs.  

3. Personally take an interest in what is happening with your treatment both in and out of hospital.

Getting to know the proper procedures (by observation, research or questioning doctors and nurses) can prevent misadventures or at least their reoccurrence. For example, I had dosages of medicine written up incorrectly or not written up at all. I was able to correct the situations because I had listened to doctors and knew what should have been.

On another occasion during a stay in hospital, I had an inexperienced young nurse flush a cannula at too higher rate of flow.  Consequently the back of my hand became inflamed and swollen. The cannula had to be replaced and resited earlier than normal. Another nurse flushed a cannula with glucose solution straight from the fridge. This time the coldness caused the back of my hand to swell but not bad enough for the cannula to have to be replaced and resited. Having suffered the consequence of these actions and thus more knowledgeable of procedures, I didn’t let them occur again.

Yet on another occasion an agency nurse was going to connect saline solution to my IV line without flushing it first with glucose solution (apparently the IV antibiotic and the saline solution were incompatible). I had been observing and questioning my treatment since my first IV Drip and knew that this procedure was wrong. The nurse informed me that no one had told her about the incompatibility of the solutions.  

4. Research and find out as much information as you can or believe relevant to your illness and particular course of treatment.

For example, I now know the signs that indicate an extremely low platelet level. Thus in hindsight I would not have relied on (or at least questioned) the advice received from the oncology nurse. Likewise, I would have insisted on the oncology registrar being telephoned (or would have rang her myself) in order to get the platelet transfusion ASAP. At the time I didn’t realize I was in an immediate, life-threatening situation.

I also used the Internet to research every drug I was prescribed so that I would know what side effects to expect.

5. A word of advice on bone marrow biopsies.

My first biopsy was under local anaesthetic and the pathologist assured me that I would only experience “mild discomfort” with the procedure. I can tell you it was more than “mild discomfort”. It was “bloody painful”. Afterwards they asked me to fill out a questionnaire on my perceived pain level at each stage of the biopsy and marrow aspiration. In hindsight I think I must have been part of some trial of patients comparing those completely anaesthetized with those who only had a local anaesthetic.

My second bone marrow biopsy was in a different hospital by a different pathologist. This time I was knocked out completely. I didn’t feel a thing. I woke up two hours later and it was all over. I would recommend the last option if you have any say in how you would like a bone marrow biopsy done.

6. If in Australia , admit yourself as a public patient in a Public Hospital .

I have top Hospital Cover (Insurance) with one of the best Health Funds in Australia . However, I have found that you get better treatment as a public patient in the public hospital system. Public hospitals have pathology labs on site and can call on far more professional services and resources (or are willing to) than a private hospital and it doesn’t cost you a cent (already paid for in taxes and Medicare levy).

My advice is, if you have a serious illness don’t even register as a private patient in a public hospital. This is because even the top Hospital Cover may not cover you for all the medical costs involved with treatment for serious illnesses. As a public patient you also don’t have to worry about all the paper work that comes with claiming through your Health fund as a private patient.

The only advantage I can see in Private health cover is for elective surgery or if you want a room to yourself (you still might not get this in the Public system even with Private Health cover). In Australia , for treatment of HCL go public patient in a public hospital.

7. I am glad Australia has a Pharmaceutical Benefit Scheme (PBS)

I'm on 400mg a day of Fluconazole until March next year to prevent the meningitis returning while my immune system is slowly recovering. I'm glad we have a PBS scheme in Australia covering pharmaceuticals as a months' supply (56 X 200mg) capsules of Fluconazole costs me A$23.70 where as the real cost is A$1244.38. Most of the other antibiotics I have had to buy while being treated for HCL have also been at reduced cost due to Australia ’s PBS scheme. It’s pretty good and I haven’t appreciated just how good it is until now.

Chemotherapy, hospitaliation and blood Test Timeline:

·        Three doses of Cladribine each dose spaced one week apart.

·        Two days after last dose of chemotherapy - eight days spent in hospital.

·        Two weeks after last dose of chemotherapy - four days spent in hospital.

·        Four weeks after last dose of chemotherapy - ten days spent in hospital.

·        Five weeks after the last dose of chemotherapy - 8 blood counts remained below minimum normal levels but the individual counts improved gradually over the next three weeks. A bone marrow biopsy was performed at the end of week five.

·        Seven weeks after the last dose of chemotherapy - 5 blood counts remained below minimum normal levels.

·        Eight weeks after the last dose of chemotherapy - 7 blood counts below the minimum normal level.

·        Nine weeks after the last dose of chemotherapy - 3 blood counts below the minimum normal level. Given news that HCL appears to be in remission.

·        Twelve weeks after the last dose of chemotherapy - 5 blood counts below the minimum normal level.

·        Fifteen weeks after the last dose of chemotherapy – 1 blood count (lymphocytes) below the minimum normal level.

 A Pathologist told me that I can expect the blood counts to go up and down for a while following chemotherapy.  

Conclusion:

The only medication I remain on is 400mg a day of Fluconazole until March next year. This is to prevent the meningitis returning while my immune system slowly recovers. I am no longer a pincushion for cannulas and daily blood /weekly blood tests.

My wife and I consider that I am extremely fortunate to have a specialist who is so caring and goes beyond and above what would be considered his normal medical duties. Especially, considering that he would be one of the top Infectious Disease Specialists (If not the Top) in Australia (and elsewhere) and therefore would have enormous demands on his time. He has got me through the meningitis and beyond. Also my haematologist has shown great skill in his treatment of my HCL. It appears to be in remission after only three doses of cladribine (not the normal 5-7 doses).

Perhaps my greatest asset in getting me through the meningitis and HCL (besides my wife’s love and support, my previous good health and fitness, and exceptionally good doctors) has been my positive outlook. At no time have I let my treatment get me down. I just accepted the fact that I’d be a pincushion for a while, that I’d have to take all sorts of drugs (even though up until my illnesses I was virtually a drug free, no preservatives, artificial flavours or colourings type of person).  Denial that I was really sick at anytime also helped.

My goal at the moment is rebuild my fitness so that I can compete in the Australian Men’s Veterans Hockey Championships in Launceston Tasmania Sept/Oct 2004. Like myself, the State hockey team I am playing for this year had enough faith in my recovery to select me in their team. I won’t let them or myself down.

Update January 2006

            I have been meaning to update my story for sometime to let others diagnosed with HCL know that I am still “alive and kicking” and what has happened to me since my original story above.

            I did get to the Australian Men’s Veteran Hockey Championships in October 2004 playing for the State of Victoria . (I was hospitalized with an unknown infection following Chemo when my home State, New South Wales had their State Selection trials). I did not know how I would go in the first hockey game after my illnesses, whether I would last five minutes, ten minutes or longer before I would be exhausted. I had gradually built-up my fitness after the Chemo by cycling on an exercise bike for ten to thirty-five minutes every second or third day in the 5 to 6 weeks leading up to the 2004 Australian Men’s Veteran Hockey Championships.

In the end, I  played eight games of hockey over ten days consisting of 40 minutes in each of the first 6 games, 50mins in the second last game and a full 60mins in the last game (as by the last few games others in my team succumbed to muscle cramp or injury). Personally, it was my most successful Australian Championship to date. I won four of a possible eight individual trophies presented by opposition State teams to the player they considered the “Best & Fairest” in the opposition team. 

I’m in the foreground (yellow shirt) having just received the Best and Fairest Award ( an engraved, digital travel clock) from the South Australian team Captain

After the Australian Veteran Hockey Championships, life went along quietly until the 18^th of November 2004 when I developed a sore neck and shoulders for a couple of days. Initially I thought I must have strained a muscle chain-sawing and loading firewood. The soreness went but was simultaneously replaced by painless diahorrea. That is, no stomach aches or pains, cramp or nausea. The diahorrea varied over the next four weeks between runny, to just very loose stools but no real discomfort. Two and a half weeks into the diahorrea the aches and pains returned to my upper torso. It started first in the front left chest as if I had torn or pulled a rib muscle. This lasted a few hours and then went away. A couple of days latter I had aches and pains in the back, left shoulder blade. Again it only lasted a few hours or so and went away. A couple of days later I had a repeat of the aches this time in the front right ribcage before it migrated to the back right shoulder blade. Each time the aches and pains only lasted between two to six hours. A day or so later and I had aches and pains in what seemed like every muscle in my back (I now know what it might be like in very old age when you are bent over and walking around with widespread backache).

In the end I consulted my Infectious Diseases Specialist as I had to check with him anyway about the results of a recent blood check taken to monitor my Meningitis antigen level. He advised me that because I was experiencing no real discomfort caused by the diahorrea I could leave it up to four weeks before consulting my local GP. 

At about three and a half weeks into the diahorrea the muscle aches and pains began to start again in the front, left rib cage. At this stage I thought things are just starting to go around in circles so I decided to go to the hospital to have things checked out. This was two days before Christmas. I was admitted to hospital where I had a Chest X-Ray, ECG and various blood and stool tests done.  The afternoon before Christmas evening I was allowed home as I began to feel well again. My illness this time was put down to an unknown virus for the tests only revealed that I had at sometime in the past been exposed to glandular fever.

I recovered from this illness only to be hospitalized for seven days at the beginning of March 2005. This time I experienced extremely high temperatures (39C + degrees) everyday for about 4 days. Other than feeling hot and the un-wellness from the extremely high temperatures I had no other symptoms.  My haematologist couldn’t understand why I wasn’t writhing on the floor given the temperatures I was experiencing. On the afternoon of the fifth day a rasping in one of my lungs was audible in the stethoscope and another Chest X-Ray subsequently revealed a small shadow on one lung. I was diagnosed with “A Typical” pneumonia and treated with appropriate antibiotics.  I was discharged from hospital two days later. This was my last hospital admission to date (January 2006).

What Has Happened Since My Last Hospital Admission early March 2005 (There is life after HCL).

1.      1^st - 3^rd April 2005: Three days of hockey at the NSW Over 55’s State Hockey Championships. The team I played in won the 2nd Division State Championship (I have a State Championship medal) and I was selected as Vice-Captain of the NSW No2 Over 55’s State Team.

(Over 55, 2^nd Division NSW State Champions 2005. That’s me 5^th from the left, middle row, wearing the green & gold socks)

2.      22^nd – 24^th April 2005: Three days of hockey at the NSW Over 45’s State Hockey Championships.

3.      13^th - 15^th May 2005: Three days of hockey at the NSW Over 50’s State Hockey Championships. I Captained/coached the local Representative Team. We were beaten in the 2^nd Division final.

4.      3^rd - 4^th June Three days of hockey at the NSW Over 40’s State Hockey Championships.

5.      3^rd – 15^th October 2005: Nine games of hockey playing in the NSW No 1 Over 55’s State at the 2005 Australian Men’s Veteran Hockey Championships team (I was promoted from the NSW Over 55’s No 2 team). The team was undefeated and I now have a National Hockey Championship medal). For the first week of this Championship I played with a head cold – the only sickness I have had since March 2005. The good news is that my body was able to fight off this cold with out any outside assistance – other than the occasional cold & flu tablet.

NSW Over 55/1’s.   I’m in the centre, back row.

In total I have played about 31 hockey games to the middle of October 2005 since my last hospital admission in March 2005.  For the last 3 – 6 months I have felt the best physically that I have felt since about 3 to 4 years ago.

The residual Chemo is probably mostly out of my system now. My blood levels (last blood tests 12^th Dec 2005 ) are considered by my haematologist to be boringly normal (mild Thrombocytopenia) and the meningitis antigen level negative.

In hindsight, I think I must have had HCL for a while. This is because for a year or so before the meningitis I used to come home from work in the afternoon exhausted and have a sleep for half an hour or more. I used to think my low energy levels were due to old age creeping up on me. I now think it was poor blood levels caused by underlying HCL.

I have a blood test scheduled for 4mths time to check for HCL and one in 6mths time to check for meningitis antigen. If this next meningitis antigen test shows negative then my Infectious Diseases Specialist has informed me that we can assume that the meningitis germ has gone – and I will not require further monitoring for this illness.

Update July 2006

            Again I played hockey in the four NSW State Veteran’s Hockey Championships (Over 40s’, 45’s, 50’s and 55’s).

            Again I was Captain/Coach of the Over 55’s local Representative side but this year we won the ‘B’ Division State Championship. I was also again selected for the NSW Over 55’s No 1 team to play at the Australian Veteran’s Championships in Perth later this year.

Over 50’s. I’m in the centre, back row holding the trophy.

The last full blood test I had in April showed normal counts except for my Total WCC (white cell count) which was 3.6 ( Normal range 4.0-12.0). The haematologist wasn’t concerned and said that this was probably the level my body operated at now.

            The only illness I have had since the head cold in October 2005 was in May (2006). I had some strange virus which caused a very fine, extremely itchy rash. This lasted for about two and a half weeks. The rash and itchiness would come and go and was mainly on the inside of my legs and arms but not bad enough to send me to a doctor. It may have been a reoccurrence of a mild form of measles, or perhaps a mild case of shingles. Who knows, it eventually cleared up. I put it down to my immune system still re-establishing itself.

            For those of you who are reading this because you or someone you know has just found out that they have HCL my advice is to remain positive. HCL is not a death sentence, it does respond well to treatment (even though you might not), and it will help you refocus on what you believe is important in your life.

I enjoy life these days. I do light weight training twice a week with a mate to help me keep fit. My family life is great! My hockey is going from strength to strength and also helps me stay healthy. In the last six months I have felt more alive, with more energy and a feeling of well being than I have for the last five years. Life is good! Be positive in outlook, I am living proof you can feel and be better after HCL than before it was diagnosed and untreated.

Update September 2007:

            My health has again been excellent this year. Medical check-ups with my haematologist which include full blood counts are now 6 monthly instead of three monthly. My blood test of 8^th Jan 2007 showed normal counts as did the more recent blood test in May.

              I am still playing my favourite sport of field hockey. I have played in the usual three day NSW State Hockey Championships (Over 55’s, Over 50’s and Over 45’s). However, I didn’t play the Over 40’s this year due to a strained ham-string in my left leg. Again I have been selected to play in the NSW Over 55’s No1 team at the Australian Men’s Veteran Hockey Championships on the Gold Coast, Queensland in October this year.

Me at the Australian Men’s Veteran Hockey Championships Perth 2006  - Over 55’s Grand Final Medal Presentation (NSW lost on a penalty stroke play-off to WA after the game was 2 all at full-time)

My bout with meningitis and HCL now seems like a life time ago.

I wish you all the best!

            You can contact me at kookakj@hotmail.com if you have any questions. Please address the subject of your email starting with HCL to avoid it being thrown out with the junk mail.