Please Listen!

I am seriously ill with a number of things wrong with me that could kill me at anytime but I don`t look ill in fact at times I look quite well even when I am feeling awful which is basically most of the time.
It often drives me mad when people give advice about what you should be doing which usually involves lots of energy you haven`t got when they know you don`t feel well and the slightest excertion makes you exhausted.I even had someone tell me I should take up weight training! I have enough trouble carrying my own weight about let alone any extra!
Doctors are often the same. You can tell them how bad you have been feeling and all the different distressing symptoms you have been getting and you get no where as they just don`t seem to be listening.I told one doctor I was having chest pain and the next minute he was suggesting that I go on the exercise bike so they could see how far I could walk before I basically collapsed!!
So my plea to anyone who comes into contact with someone who has a serious illness please listen to them and try to understand how they feel and what they are going through.

The NHS!

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Over the last two and half years I have had to use the NHS a lot. When you are a patient you see the faults the service has and also its successes.
We live in a society where the focus is on failure and problems and not on success. We hear all sort of stories about bad practice in the NHS and of course in any organisation as large as the NHS you will get incidents where people and practice fail but in my experience the NHS gets more right than it does wrong.
There are some people in the service that are incompetent and there is waste and practices that could be more efficient but personally I have never come across anyone in the service who is anything less than dedicated to the care of patients and no one who lacks caring and doesn`t want to help people.The caring and dedication of the staff in the service is a shining example to us all. If our politicians who are so found of attacking the NHS were even half as dedicated or selfless as NHS staff the country would be a far better place than it is.

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Downs Syndrome.

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Children with Downs Syndrome are far more likely to have Pulmonary Hypertension than other children.When I was a baby I was suspected of having downs syndrome.In those days which is over fifty years ago now there were no tests and you were monitored during your early life to see if you showed traces of downs or if your development was not what it should be. I spent the first year of my life attending the childrens hospital Great Ormond Street but they did decide after a year that I did not have downs.
I was not told about this until I was an adult and then I was told alone by my mother and told not to say anything to my dad. I still do not know to this day if my father even knew the full story.In those days attitudes were different and disabled people were treated differentely and people often viewed it as something to be ashamed of if you had a disabled child. Crazy and wrong I know but we always  have to try to understand that times were different then.
I have always felt a strange bond with downs sufferers even before I was told about events when I was a baby. I find it strange  to be suffereing from something now that I may well have been born with if life had been a bit different as a baby.
I told my doctor about this and he said that although I don`t have downs I may have some sort of mysterious syndrome or a genetic fault that may have been caused by the fact my parents were first cousins.
Its strange the way life can work out sometimes!

Side Effects!

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When you have Pulmonary Hypertension or any of the other long term condition that tends to go with it you tend to take a lot of medications.These medications often tend to have side effects.For example I take steroid inhalers that give me severe cramp and a Fusomeide tablet for the problems with fluid retention and this can make you itch and also give you gout as shown in the image!
Whenever I am having a moan about the medication when I get one of the side effects I always stop and try to remember the benefits these drugs give you. They make you feel less tired, help your breathing and help to stop the problems with your heart and lungs from getting worse.
Always remember the benefits of the drugs far outweigh the problems you get from taking them.

Death!

Once I was diagnosed and I found out how seriously ill I was I accepted that it was certain I would not see my old age.I am fifty two now I will be lucky to see my fifty fifth birthday.I am not afraid, have no bitterness or anger and just accept that is how fate is going to work out.
I think its important that you die well. That you come to terms with it and are at peace with yourself and the world. That way when it does come you can go in peace and not be afraid. I saw both my parents die and death doesn`t frighten me.I think you have to use the time you have left to keep fighting, enjoy life and just find peace!

Exciting Development!

The link below details a very exciting development in the fight against lung disease.
http://wcco.com/health/lungs.stem.cells.2.1774895.html

Slimming Pills!

Both here and in America there has been cases of people getting Pulmonary Hypertension because of various slimming pills some of which have been prescribed on the NHS. I think people need to be very cautious about taking pills like this as I can promiser you its better to be fat than have PH!
Never understand really why people resort to pills.I have tried to lose weight in the past and have found the best way is exercise, healthy eating and basically just don`t eat so much.All it takes is common sense and will power and anyone can lose weight.

Fluid Retention.

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One of the biggest problems when you have heart failure, the graphic shows the main problems you face, is that you retain fluid.This can lead to your legs and ankles swelling up.I take a diuretic called Fuzomeide which helps to get rid of the fluid although my legs still swell up somewhat. The worse thing about Fuzomeide is that it makes you want to pee and this means that for several hours after taking it you really need to be near a toilet. Having this problem can also mean that you need to go to the toilet quite a few times in the night because when you lay down the fluid tends to go back into the bladder and so make you want to go to the toilet. Makes it hard to sleep some nights.
As the swelling tends to go up and down you do tend to lose skin on your legs which can make the legs itchy and sore. The cream E45 is very good for this.
A couple of tips if you suffer from this problem. Try to limit your fluid intake to about one and half litre`s a day as this will help you retain less fluid and try not to add salt to your diet as salt does make you retain fluid.Also always make sure that you have regular blood tests to check on your kidney function as these drugs can damage your kidneys.

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Regrets!

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When I become ill two and half years ago now I had to let my little Jack Russell dog Ben go into a dog rescue centre because I could no longer look after him.I had no alternative but its something I deeply regret and I still miss him greatly even now. I have had a dog nearly all my life and not having one is really hard as you miss having one around the place so much.Mine always followed me about and were never far from me so I do really miss that companionship.Anyone who has had a dog will understand how empty your home feels without one.Its a home without a heart!

Depression!

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Depression is common among people with long term health conditions.Its only natural when you feel unwell most of the time, you can`t do what you want to do and a lot of the time you are isolated because you can`t get out and about too much anymore.
How do you overcome it? I get depressed often and I have found that its best to keep yourself occupied. I read, go on the internet, watch television.You need things to stop yourself thinking about your illness, the new hospital or doctors appointment and worrying about the future. I also feel its important to get in touch with people who have the same conditions as yourself. Its often easy to think your the only one that has no energy, is finding it tough to breath etc which does make you feel isolated but once you get in touch with others you feel less alone and also they are a source of advice, encouragement and friendship which helps a lot.I also think its important not to look ahead to much. Just take one day at a time and  try to enjoy the here and now as best you can.
Above all never feel its wrong to feel depressed, its natural and you wouldn`t be normal if you didn`t feel down sometimes.

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