My Story So Far - Whiskers (John) and UPDATES

[whiskers]

o:) Whiskers Posted: 31 March 2009 19:46:53 and Updated 14 August 2009 and Updated 24th October 2009Rank: Advanced Member
Groups: Member o:)

Joined: 31/03/2009
Posts: 14
Location: Herne Bay, Kent

Hi there, my name is John but affectionately called 'Whiskers', if you are reading this then I presume you may well be suffering from Myelodysplastic Syndrome or something closely related as I presently am; welcome to the club! I am a 64 year old male with asthma, spondolosis, arthritis and other less nasty health problems that many of my age suffer. i thought I would put down the history of my health deterioration over the past twelve months since was diagnosed with MDS.

I was diagnosed as having refactory cytopenia with multilineage dysplasia (RCMD), or Myelodysplastic Syndrome, in late February 2008. I initally felt unwell and just did not recover from surgery on my prostrate gland in July 2007. I was very tired and lethargic, finding work as a professional archaeologist almost impossible but struggled on. I kept getting infections, however, and had to have time off of work and treatment with anti biotics from my GP. because I did not get well progressively after my operation a series of tests and exmainations by various doctors and hospital consultants. Anemia came out as a major reason for the lck of recovery and continuing exhaustion so a number of investigations were carried out to see if I was bleeding internally. I had to have a gastroscopy endoscopy; a barium enema; X-Rays, ultra-sound scans, MRI and CT scans, numerous blood tests, further urology investigations and other physical tests; but nothing in particular showed up. In the mean time I was suffering continual infections both urinary and a growing number of chest infections. This meant even more time off of work and continuing and worsening exhaustion. The anemia seemed to be of a non iron-deficiency basis, and eventually, with my GP at a loss, my wife asked what else could be wrong with the blood. The GP doubted anything sinister but upon my wife's insistance he referred me to a haematologist and our local general hospital. Here after further blood tests and a bone marrow biopsy they diagnosed myelodysplastic syndrome after having been tested for everything but over a six month period!

I ws then referred to King's College Hospital at Denmark Hill, finally I had arrived at the centre of excellence, but with a worrying future. things had got so bad that I had to stay off work completely, I still have my job but cannot do it at all, even after working less hours, working from home and trying anything I could do at all, but exhaustion and feeling sick, dizzy and in pain, prevented me from doing anything in the end. I also have asthma, which combined with the MDS causes great problems with breathing and oxygen intake making any exertion difficult and uncomfortable. King's College kept a period of observation and supportive care. I was for a long time independent of blood transfusion treatment until December 2008.

By October 2008, I was having problems with my prostrate and bladder again and tests and an internal telescopic examination were carried out; this showed a blocked bladder and that further prostrate surgery was necessary. In mid-December I had the operation on my prostrate and a blocked bladder, but again I did not recover properly whilst still in hospital and on top of the problems I contracted a bad chest infection, and my haemoglobin levels had dropped to 7.6, so I had to have two untis of blood by transfusion; so my stay in hospital and treatment with anti-biotics and blood transfusions, was longer than expected.

In early January 2009, I again contracted a bad chest infection, and again was treated with anti-biotics and steriods, until it cleared up. In mid February I had to go into hospital to have a minor operation on my knee, normally a day ward proceedure. in my case, I again did not recover properly and again contracted a nasty chest infection, and my haemoglobin levels had dropped to 8.6; thus another two untis of blood were transfused. So this meant another two weeks in hospital on anti-biotics, etc. I was released afte two weeks and was home for just four days when another, even worse, chest infection was contracted. this time my GP visited me at home and immediately sent me by emergency ambulance to the A&E Department at our local general hospital; I was transferred into an observation ward and then put on to a special ward. My infection was that bad that I did not think I was going to recover. I was on oxygen; nebulizers; very strong anti-biotics; steriods and pain killers. then they found my haemoglobin levels had fallen again so another two units of blood were transfused. Thus I spent another two week in hospital. two days after getting home I contracted a bad bout of sickness and diarrhoea, further weakening my situation. Oh what bliss!!

Last week I visited my Haematology Consultant at King's College Hospital, worried by my deteriation, particularly as I have suddenly become blood transfusion dependent and all of the infections, they decided to put me on erythropoietin and GCSF treatment (NeoRecormon 30,000 units, together with Granocyte 105 mcg) self-injected subcutaneously weekly. I have to go to my local haematology department for regular weekly blood tests to ensure that the treatment does not overstimulate my bone marrow, or effect the white blood cellls or platelets. It is believed that only 20-30% of patients receiving Epo & GCSF treatment show any meaningful reduction in transfusion requirements, and that there is a risk or more rapid progression of the MDS; if any of these problems appear then the treatment will be adjusted or stopped. I feel, however, that trying anything, under medical control, to reduce the gradual deterioration of my health is better that sitting and thinking about it and doing nothing!

There is more of my story to come (see below as added), but this must await results of the treatment, or other events to come. I would be most interested to hear from anyone having similar problems, or having had similar problems and have got better or worse; and to hear from anyone at all who can either be supportive or even need someone in a similar situation to converse with. I do try to be positive about the illness, but being human I also have periods of worry and concern of where it is all going. I intend to try and contiue my travels to various parts of the world where and when possible, but now of this is governed by how well one might be; how expensive is any travel insurance; where one can now visit or not due to other risks such as mosquito carried diseases and whether I am able to have certain vaccinations (certainly Yellow Fever is out of the question).
You may have seen from a previous message (4th May - above) that I have been contemplating going on a summer holiday this year but have been somewhat uncertain, mainly because of my MDS, where would be most suitable from my selection.

***Update to My Story So Far -- August 2009[/bo:)

I have finally booked a two week holiday in September to a 5* hotel by the sea in Kusadasi in Turkey. My consultant at King's College said that this was alright and was happy that I am trying to carry my life as best I could, that's very comforting. He did advise, however, not going to Egypt because of the higher infection possibilities and particularly in some areas the lack of good medical facilities, which is very sensible.

I though it might be useful at this point to add further information on travel insurance for people with similar health problems as I know it can be difficult and costly getting travel insurance. I tried several of the recommended insurance companies that insure people with existing medical problems as discussed in previous messages (see other areas of the Forum site), the results gave various quotes between about £100 to £300! The one I settled on in the end is 'Saga Travel Insurance'. Their travel insurance, which if you declare existing medical problems, covers existing problems, including MDS, etc; and includes costs treatment for any problems with MDS or anything else, including flying you back home if the treatment you require is urgent and cannot be met satisfactorily in the country you are holidaying in; and full cancellation cover (including return of deposit - less £10) if you cannot go because of illness, whether it be due to declared existing problems , or something new. Their quotation for both myself and my wife, for two weeks in Turkey was a total of £78, now I thought that was very good indeed for a very good comprehensive travel insurance.

This includes the following cover for 'each person' travelling with nil excess except where noted: Cancellation Charges of up to £5,000; Missed Departure up to £1,000; Scheduled Airline Failure up to £1,500; Delayed Departure- £35 for the first 12 hour period, £15 for each 12 hour period after that (maximum of £215); Emergency Medical and Associated Expenses up to £10,000,000 (£50 excess); Hospital Benefit £25 for each 24 hour period (£1,000 maximum); Personal Accident up to £30,000; Baggage up to £2,500; Delayed Baggage £250; Abandonment (having to return home before your scheduled return date) £5,000 (£50 excess); Personal Money up to £500 (£300 limit for cash; £50 excess); Loss of Passport £350; Legal Expenses and Advice up to £50,000; Personal Liability up to £2,000,000; Hijack and Mugging (if you cannot reach your destination or return to UK due to hijacking of vehicle/plane; and or if you are in hospital due to injury through mugging) £50 for each 24 hour period (£1,000 maximum); Pet Care £25 for each 24 hour period (maximum £300) for Vet's fees if your pet takes ill or is injured whilst you are away. Cover starts immediately you take it out i.e., from now.

I hope this gives some satisfaction and hope for others who are thinking of travelling abroad, it does not have to cost an arm and a leg if you shop around, but make sure it is a good policy with a well known insurance company. Why I didn't think of Saga Travel insurance before I do not know, we have had several excellent holidays with their company in recent years and always recommend them for their holidays, although they appear expensive sometimes they have a lot of hidden extras. All travel to USA or the Caribbean, however, is much more expensive to insure because of their much higher health care costs (Private Health Care), so be prepared to pay 7 or 8 times the insurance premium compared to European or many other deestination holidays.

The EPO and G-CSF treatment I was on did not make any improvements to my condiditon and has now subsequently been stopped because of the side effect risks it can cause. Now I am solely relying on regular blood transfusion treatment, in four weekly sessions averaging three to four units of blood per month and soon will have to start having iron chellation treatment to disperse the excess build-up of iron gained from the transfusions; this is vital otherwise if left untreated it can cause liver and heart failure!. The regular blood transfusions seem to help me gain some more energy for about the first two weeks after the transfusions but then the haemoglobin levels start dropping again and recently dropped to 6.4., although it mainly drops to about 7.4 on average. This and regular feelings of extreme nausea, as well as pains in the chest (feels like someone standing on your chest restricting ones breathing) are now adding to the effects of the illness; I am having a heart scan this week just to be on the safe side, but they really think the chest pains are due to low haemoglobin levels (I hope so, I do not want any further problems). So the transfusions are only partially helping the condition, but for a shorter and shorter period as time goes on, but I am gradually finding that I am getting more and more exhausted and virtually unable to do very much at all more rapidly, than say a year ago, thus the condition is worsening.

A month ago the Kings College team decided it might be wise to start tissue testing in view of seeing how easy or difficult it might be to find a suitable donor from the Anthony Nolan Trust, with a view to the likelihood of carrying out a mini-bone marrow transplant in the not too distant future. They are going to review my overall situation in mid October after giving the regular blood tansfusions a run for their money. They have however, said that the risks of survival are about 50/50 to 60/50, so not a decision to make lightly. Still at least this is another avenue to follow if the condition gets too bad, time will tell.

Well my wife and I are now looking forward to our holiday in four weeks time, Turkey here we come, we shall endevour to make the most of it, as it could be my last, or at least last chance of a holiday for some time.

:d/ UPDATE 24th October 2009

Hello again, just thought I would update 'My Experiences' to let you all know what has been happening over the last few months. Well we managed our fortnight's holiday to Turkey and good it was, although towards the end I was becoming extremely weak, nauseated and fatigued, the last two days virtually lying around in the shade with zero energy and pains.

The day after we arrived home I had to have emergency blood transfusions as my haemaglobin levels had dropped to 6.4. Last wednesday 21st October I visited the clinic at Kings College and was informed by my consultant that they would have to alter my regime of blood transfusions to fortnightly instead of monthly as the present arrangement was no longer sufficient, as my condition was worsening; my haemaglobin levels had already dropped to 7.8 in just two weeks after my last 3 units of blood was transfused and that I was gradually becoming weaker, more tired and suffering pains in chest and head, and severe cramps in my feet and hands. Also that they were still searching for a suitable donor for a mini-transplant, but so far with no success, but felt that it would be advisable perhaps by spring 2010, avoiding the winter months as I always suffer severe chest infections during this period and become hospitalised.

8-[
*****UPDATE 20th November 2009*****

I have just made a visit to my consultant's clinic. My full blood count two weeks ago showed some drastic changes, so I had to have an instant bone marrow aspirate and trephine biopsy the same day (my third so far). This has showed that the disease has progressed and has moved onto the next stage from RCMD (MDS) to RAEB-1 (MDS) and that if it worsenes in the next few weeks, or couple of months, then I will have to have chemotherapy under AML 16 Trials. I knew that things had changed somewhat as I was feeling extreemely tired and exhausted, despite an increase in blood transfusions, far worse than before, plus I am getting cramps in my hands and feet, chest pains and headaches. So at the moment I am trying to take this next stage on-board, it seems every so often things suddenly worsen and you have to start coming to terms with new issues, it is not easy. Anway, at least it is under scrutiny and attemps are being made to stabalise the condition unti a donor can be found.

So life goes on, but at a much reduced rate of health and quality of life. I know that getting a donor and a subsequent mini-transplant is only part of the next major step forward, and includes chemotherapy sessions and graft-versus-host problems, and other complications are all part of the future. In addition that if the transplant is eventually successful it could take a year before I become any better overall; although recently I must admit that I have struggled with the worsening condition, I have not given up hope and have every confidence that I will, with the help of the Kings College team and my local haematology team at Kent & Canterbury Hospital who are also great, beat this disease eventually.


Well that all for now, best wishes to everyone, keep you spirits up and look to the future as well as today.


Good luck and improved health to all who read this.

Whiskers (John). :d/


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