Stories 2015

2015 starts here

John’s story

John HibbertHello, I am a 71 year old male living in the south of England near Guildford in Surrey. From small beginnings my wife, Phyllis, and I built up a wholesale picture framing business manufacturing for galleries, stores and contracted orders for hotels and ships. We have three children, all grown up and also running their own businesses. The eldest took over from us and is further developing what we started. Since retiring some twelve years ago I have travelled a long road of health problems beginning with a diagnosis of ‘Gerd’. Unfortunately I have been subjected to a subsequent trail of wrong diagnosis and arrogance through my local hospital with very little care and understanding of my progressive condition.

The National Health Service is a wonderful institution but it is no longer able to cope financially and lacks good management. Nowadays treatment standards depend upon the illness which you have and where you live according to the levels of expertise; but I believe this is much the same the world over. Another large problem is again universal, and this is the health and safety issue, with all employees from consultants downwards doing everything to avoid potential litigation. Never say ‘yes‘ when you can say ‘maybe‘.

I should add at this stage that my father was a pharmacist and I am reasonably able to understand basic health indicators. My doctor has been supportive and willing to go along with my own research which led me to suspect an auto immune disease. I finally obtained a diagnosis of Lupus (SLE) after consultations with two respected consultants, albeit privately outside of the NHS. My NHS consultant preferred to regrade me as ‘Undifferentiated connective tissue disease’ doubtless as it covered all possibilities and would be considered a safer option in case negligence could be proved against him. Surgery was initiated for bilateral total hip replacement as a result of my Lupus which did restore some reasonable mobility, but by that time I was troubled by respiratory problems which were noticed after the first hip replacement. Scans showed this to be the first stages of pulmonary fibrosis and I am grateful that this was noticed at this stage.

During all of this period it was evident to me that I became worse as the autumn approached and was rather perturbed to have strange periods when I became white all over and felt very ill. These ‘events’ became more frequent, and as I had retired at the age of 58, I decided that it would be sensible to spend some of the winter in the sun. This showed a marked improvement in my condition and I spent 5 consecutive winters in Australia.  Before I was diagnosed with Lupus my GP asked me if I noticed anything which showed an improvement in my condition. My reply was that on every trip I made to hospital by emergency ambulance they gave me oxygen and by the time I reached hospital I was feeling much better. He suggested that I have home oxygen, which in those days he could prescribe through the pharmacist.  As the Lupus progressed and when the fibrosis developed the oxygen became more necessary and I am now on 20 hours a day.

Unfortunately, oxygen may now only be authorised by the hospital and they threatened to take it away from me unless I fell in with their system of authorisation which I declined to do, particularly as my doctor had shown foresight and consideration to my case. By this time my doctor had obviously done some reading and suggested I look up cold agglutinin disease on the Internet, but was careful not to commit himself to a diagnosis which would be extremely difficult to confirm after all the wrong avenues which had been followed. I did a lot of reading and it became obvious to me that on top of my various other illnesses I must have CAD as it ticked all the missing boxes and I can report that my doctor’s nodded agreement was a welcome confirmation although certainly not documented.

The pulmonary fibrosis has now progressed steadily and I am approaching the final stages but I am also proud to have made 4 years after the first scan which I gather is better than average.  I then took the view that with my doctor’s support I could beat the system and save myself a great deal of anguish by accepting the inevitable outcome and therefore severed all communication with the hospital respiratory department. This following a consultation in which I was threatened with suspension of home oxygen. My reply was that it had originally been prescribed by my doctor who had known me for years and they would have to prove it to him first. My file was slammed shut in front of me and I walked out of the consultation. Hardly an example of good care! To anybody in the health service that uses the phrase ‘Take Care’ I reply; Thank you, but you have to give it first. I am still receiving my oxygen supplies and I am at home receiving excellent care from my wife and we are working together as a team. I am at peace with my condition and myself.  It is bad enough feeling very ill but far worse to endure and fight against a system which is simply unable to cope satisfactorily with the complexities of managing polsystemic illnesses such as Lupus and Cold Agglutinin Disease.

I do feel that all of us who are afflicted by a complicated and difficult disease such as ours cannot hope for the support afforded to the more dramatic cures of cancer and heart disease. With the comparatively low incidence of auto immune diseases there are not very ripe pickings for the drug companies, so research is unlikely to come easily.  I have always been, and still am an optimist; but I am a realist first and feel that we have to accept the system which is not yet on our side. I am no braver than the next person, but I do feel that we often put too much store by longevity and should therefore try to find enjoyment with those around us and face the inevitable end with a hope for those who are able to carry on with a positive message. I am only too happy to share thoughts and details if it would be of assistance. Sharing has to be an important part of caring. I have written enough and becoming tired so it must be time for my medication – a good red wine from McLaren Vale in Australia!   Cheers!

John

Albert’s story

Albert, Dublin Ireland, aged 73, Retired.

Albert BrooksUp to two years ago I had never heard of CAD. However I was no stranger to medical conditions as I had open heart surgery when I was 47 and also again at the age of 67. I came through both cardiac experiences exceptionally well, and during that period enjoyed a very active family and business life.

This changed in July/August 2013.

Following a prolonged dose of pneumonia I then experienced a six week period (July /Aug) during which I was losing energy at a rapid rate, becoming breathless even after the shortest walk, loss of weight, very strong urine, and nausea in the mornings. I felt it was high time I went to see my GP (my local doctor). His immediate response was “You’re anaemic!!   You need a full blood test now” (his next words next scared me).

He said “Be prepared to be in hospital in the morning for blood transfusions”.

Sure enough I had a telephone call the following morning with the news that my red blood count was 6 Hb where my norm should be 14. This landed me in the very fine St Vincent’s Hospital here in Dublin.

It was here I met up with my Haematologist Consultant, who over the past year and a half, has successfully guided me through some very difficult times. His skill and expertise along with the highly dedicated hospital team, and the very strong support of my wife and family, got me through many very stressful stages in my CAD journey.

In these first days in hospital following many scans and tests, the Consultant explained to me that I had CAD and that I was starting a series of blood transfusions immediately. Within a period of 4 days in hospital , and four blood transfusions, the blood had gone up to 10. At this stage I headed home but I was sure that I could be a frequent patient in Vincent’s in the coming months. I was in the fortunate position that due to my cardiac history I had signed up for a very comprehensive private health insurance that gave me the excellent private care and accommodation that the hospital provided

Having been discharged from hospital in early Sept 2013, I was given good instruction to look out for the symptoms if they were to return and it was explained to me how important it was to keep the body warm and keep clear of cold and flue infections.

However even with my best efforts by mid October I felt very unwell, the blood count was 7 and my energy was very poor.

One of the difficult things to cope with when you have CAD is how rapidly your blood can go down, and once again, the now familiar disease symptoms return.

So back into hospital and more blood transfusions. This time more successful and long lasting.

Now during the time between October and April, a period of six months, the blood levels stayed at approx 10.5 and energy levels stayed up well. During this period the blood levels were at first monitored on a weekly basis, and monthly as my condition improved. I really felt that my life was coming back to normal.

However by mid April 2014 I was in trouble again. This time more serious. On returning to hospital the beneficial effects of blood transfusions were only lasting days and the Hb levels slipping back down to the low sevens . The transfusions were just not working for me

My Consultant’s reaction was swift and immediate with the news that he was now going to prescribe Rituximab. He explained to me the drug had a very good track record in the treatment of CAD. However it was not always successful and there could be serious side effects.

Nevertheless it was obvious that at this stage I had no alternative but to go for the treatment, and I started Rituximab in early May 2014, being scheduled for four treatments over a four week period.

During the course of the treatment I was very fortunate that I had no side effects either during the administration of the drug or at any time afterwards.

The really good news was that there was that the drug worked very well!!! In a blood test at the end of May my Hb level was up to 12 from the level of 7 at beginning of the month. Equally positive was the fact that the Hb count continued to improve going to 12 in July and 14.1 by early October. I felt back to normal good health.

A very recent blood test in April of this year(2015) showed a very positive result of 14.2.

So during this period of almost 12 months the Rituximab was, and indeed still is, very successful.

What does the future hold for me? Who knows? One thing I do know, bearing in mind my Rituximab experience, I would have no hesitation to undergo that treatment again in the future.

I shall endeavour to update this account as the future develops.

Update September 2016

It is now the start of September 2016,and it is good that I update my story  since my last input in May 2015

It has been over two years since my last CAD treatment (Retuximab June 2014).  Having enjoyed the benefits of this treatment for the last two years I planned a very active 2016 summer with three overseas trips for the month of July for my wife and I.

All went well on these trips.  Nevertheless by mid-August familiar symptoms began to appear, mostly tiredness and lack of energy.  Suspecting the worst, I headed immediately for a blood test, since it had been well over a year since I had had one.  However good news awaited me: the Hb count was a comfortable 12.1, and I was assured by my consultant that there was no cause for alarm.

From this episode I learned two lessons on my CAD journey: firstly is is essential to have regular blood checks even to set your mind at ease that all is well.  I had got careless in pursuing this.

Also that the age of 74 it is unwise to live your life as if your were 10 years younger – your body slows down irrespective of having CAD !!

Update September 2017

In the continuous CAD experience one can never be sure that  you will be trouble free for any long length of time !!  By December 2016 my red blood cells were in trouble again..with Hb levels down to  8.  Immediate action with blood transfusions over a four week period, in and out of hospital, did not correct this alarming downward trend.

By early January 2017 the decision was taken that I would go on a further course of Rituximab,the last course having been very successful when I was given it over two years earlier.  Good news !  once again Rituximab did the  job,and by mid Feb Hb levels were up to 12 and remain there for the last months.    Great relief !!!

Albert

Evelyn’s story

Hi, my name is Evelyn and I am 48 years old and worked in retail management, but am currently on disability since 2009.  I was diagnosed with Multiple Sclerosis (MS) when I was 20 and managed it pretty well until 2009.  I live in Illinois with my significant other (Karen).

On December 1st, 2014 I woke up and my hands were blotched and purple, so I asked Karen to take a picture and send it to our doctor.  He called and said to take me to the emergency room, which she did.  This part of the story has been told to me by the doctors and Karen because I can’t remember anything from that moment till the 10th of December when I woke up in hospital.  Apparently the ER doctor after running tests and consulting with my doctor decided it was an auto immune problem and since I was not in any distress to see my doctor the next day.  My hemoglobin was 9 at the ER and had been 15 on the 21st of November when I had my physical.  So the next day we went there and he referred me to a Rheumatologist but she could not see me until the 4th.  On the 3rd we stayed home and I was tired and sleepy but otherwise my normal self.  On the 4th, I was not moving and when I did I would fall on to the nearest piece of furniture and try to go back to sleep so Karen decided the ER was better than the doctor. She got me to the ER and by this time my whole body was blotched and purple.  They brought in doctors from all departments and ran tests then decided to admit me.  My hemoglobin had dropped to 3.4 and they needed to do a blood transfusion so they put a central line in my neck.  The decision was made to transfer me to a bigger hospital who had a blood bank and could handle everything I needed.

By the time they got me to the big hospital my hemoglobin had dropped to 3.2, I was in kidney failure and my heart was in distress (BP over 200).  Karen made the decision to put me on the ventilator since I was no longer aware of my surroundings.  They had to use an incubator to get my blood to lab and they finally came up with the diagnosis of Cold Hemolytic Anemia.  They started dialysis, plasmapheresis, blood transfusions, Rituxan and methyl prednisone (steroids).  They took the vent out on the 8th and I woke up on the 10th.  The next couple of weeks my kidneys recovered, my blood count improved and my blood pressure was being treated with BP pills.  I left the hospital on the 27th of December and was very thankful I was alive.

I stayed on steroids until the middle of March, 2015 and am still on BP pills.  As of May 18th, 2015 my hemoglobin is 14.2.  I did find out at one of my numerous doctors appointments that I have Warm Hemolytic Anemia as well as CAD.  My Physical Therapist graduated me on June 12th.  I am still in Speech Therapy for cognitive issues from lack of oxygen to the brain, but I am getting better.  My MS is in remission for the first time in 10 years and my Neurologist is thrilled.  I saw a picture of me when I was in ICU with all the tubes and machines that were hooked up to me and realized how lucky I was to make it through.  I now watch myself closely for any symptoms of CAD or MS, but I don’t let it stop me from living my life.  Giving up a few things in life is worth still having a life.

I have discovered that living with CAD is difficult but manageable and having the CADdy Chatter site is wonderful.

Evelyn

Cliff’s story

Well, here it is.  My name is Cliff and, in January of 2013, I was 57 years old.  I grew up a runner participating in cross country; as an adult I participated in a number of marathons.  I started in-line skating in my 30’s and, until I had a torn Achilles tendon, had worked out and competed until 2011.  I could skate 15-20 miles at a pretty fast pace – 12 to 15 miles an hour.  And, at work, I walked several blocks almost daily – sometimes more.  So, I was in pretty good physical shape.

In the winter of 2012-2013, my first symptom was an episode of near frostbite at a soccer game in February:  nose, toes, ears, face – all turning deep purple.  A week or two later I was walking my usually distance at work when I became so short of breath I had to stop twice in one block  –  I could not catch my breath.  My primary care physician got me in and took blood – and decided I was anemic.  He prescribed prednisone which seemed to help a little, but not enough.  He referred me to a hematologist/oncologist who, after much testing, made her diagnosis.  And, since I am writing this here, you know the diagnosis – idiopathic cold agglutinin hemolytic anemia disease or CAD.

My hematologist wanted to try a second round of steroids – this time there was not even a little improvement.  And with my hemoglobin in the 7 to 8 range, options were limited.  Fortunately, she had worked with other CAD cases, and was at least familiar with the disease.  I did my research and, after much discussion, she recommended a series of infusions with rituximab.  It was pretty clear in the literature by that time that steroids would not be effective and that rituximab offered the best course of treatment – although we still discussed the use of rituximab either by itself or with fludarabine or other meds.

We decided to go the solo route.  So, once a week for four weeks I started receiving slow infusions of rituximab in a chemotherapy ward.  Many people far worse off than me had a great outlook – so I was happy to “only” have CAD.  Progress was slow.  I never thought a tenth looked so good as when I went from 7.6 to 7.7…….  Monthly follow ups showed gradual and steady increases.   By 6 months better, but not normal.  ‘It will just take time.’  By September of 2014 I was feeling pretty decent.  By March of 2015 I was “low normal” and released to start normal activity.  And, fortunately, I have been able to get back to the exercise I had missed.  But my thoughts turned to the inevitable ‘what happened, why me’ questions.

I have no family history of auto immune diseases.  From my 30’s on I got annual physicals and, other than hereditary high cholesterol, bloodwork was always normal.  So, I wondered:  What had changed in the months before I developed CAD that might have caused my condition?.  It took time, but ultimately I could pinpoint only one possibility – cholesterol medication.

I had been on name brand Lipitor with no problems for almost 25 years.  But, in the summer of 2012, the patents on Lipitor expired, and generics were flooding the market.  My physician recommended generics because the cost differential was several hundred dollars a month.  I started generics in August 2012 and by February of 2013 was noticing the start of my problems.  For those who might not know, one of the side effects of cholesterol drugs can be hemolytic anemia.  Something happened as a result of that medication change, but who would have suspected.  Until I did the research, I would not have known either.  My primary physician said it was coincidental.  But after almost a full year back on name brand Lipitor, my hemoglobin has stayed normal, and my oncologist agrees that it was a likely cause and effect situation.

The good news is my hemoglobin stays normal.  My feet are always cold though, and a side effect of the rituximab appears to be intermittent numbness and tingling in my feet (no, it is not diabetes).  I wear heavy camping socks year round.  I wear warm clothes to keep as warm as possible summer and winter – cold is not a friend to CAD.   But, I consider myself fortunate from many aspects:  I had good doctors who quickly identified the problem, treated it well and who tolerated my incessant research and questioning, and I have returned to good health with only minimal residuals.  And (fingers are crossed here!) – I hope it continues.

Cliff

For stories from 2007 (with updates) Stories 2007
For stories from 2008 (with updates) Stories 2008
For stories from 2009 (with updates) Stories 2009
For stories from 2010 (with updates) Stories 2010
For stories from 2011 (with updates) Stories 2011
For stories from 2012 (with updates) Stories 2012
For stories from 2013 (with updates) Stories 2013
For stories from 2014 (with updates) Stories 2014

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