The Road We Travel!

When you have a long term progressive illness like Pulmonary hypertension and COPD people think that the road we travel is basically straight down and we just get steadily worse I don`t find that to be the case.
I have had theses illnesses now for about three years and I get long periods where I don`t feel too bad and then suddenly things   get worse and I really struggle for a while but when I get through that I tend to pick up and then things are not to bad again.
I think there is a tendancy to think when you get a bad turn that its all downhill from here and things are never going to be as good as they were but although I suppose we get worse over time the difference is so slight and gradual that you don`t really notice it.
The thing to always remember I think is that the road we travel may be rougth at times but its not all down hill and there are good and happy times to be had along the way and the road is a succession of hills not a steep cliff!!.
These things are never as clear cut and  straightforward as we are lead to believe that is why many of us tend to live for far more many years than the doctors expect us to.

Exercise and Pulmonary Hypertension!

Image via Wikipedia When you have any long term health condition exercise benefits you but with Pulmonary hypertension you should always been cautious when you are exercising as it can make the condition worse if you do to much. This is a link to a very good article about exercise and PH that explains things very well.
PHCentral (Pulmonary Hypertension) Features: Exercise and Pulmonary Hypertension

Hope For Those With Heart Failure!

Interesting article about research going on involving stem cells and heart failure. Gives real hope to all of us who are suffering with heart failure.
Stem cells from aged, damaged hearts could be used to treat heart failure

Faith Middleton Show: Pulmonary Hypertension.

Take a listen of this.Very interesting.
Faith Middleton Show: Pulmonary Hypertension | yourpublicmedia.org

Diuretic Pill Cuts Deaths in Heart Failure Patients

Interesting article for all of us on diuretics because of heart failure.
Diuretic Pill Cuts Deaths in Heart Failure Patients

Heart Failure.

Image via WikipediaEveryone who has Pulmonary hypertension has also got right sided heart failure. This is because the PH as put pressure on the heart to pump harder to get oxygen through to the rest of the body and this as caused the heart to stop functioning as it should.
Heart failure are two words that can panic people when they are told they have it by a doctor but it is not as bad as it sounds. Heart failure does not mean your heart is about to fail it just means that your heart is not working as good as it should be.
The symptoms of heart failure are basically swelling in the legs and ankles, tiredness and breathlessness.The illustration shows the symptoms of heart failure in detail.Doctors tend to control the swelling by diuretics which help you get rid of the fluid causing the swelling.You can also help this yourself by having a low salt diet and restricting your fluid intake.
The goal of the doctors is to stop the heart failure getting worse. By treating the condition causing the heart failure like for instance PH and encouraging the patient to eat a healthy diet, get exercise and with drugs like diuretics  doctors are pretty successful in doing this now and the prognosis for most heart failure patients is not as bad as it use to be in the past.
The major thing to remember is that having heart failure is not a death sentence its just another health problem that you with the help of your doctors can control and overcome.

Live For Now!

When you have a long term serious illness like Pulmonary hypertension you know in the back of your mind that the future is going to be tough, that you will get worse as time goes on and probably not live as long as you would like to.They may not be very optimistic thoughts but they are facts and there is no point ignoring them or believing that they are not true as that is just deluding yourself and I don`t think that does anyone any good.
I think that the trick to surviving and being happy is to live for today.Treat every minute as your last, enjoy life and let the future take care of itself.A cure may be found who knows but its pointless spending time worrying about what might be you just have to get on and enjoy what is and make the most of your life.The happier you are and the more content you are the better you will feel physically as well. The mind is a powerful organ and it can help us overcome and cope with many things so use it to help yourself feel better.
There is no better saying than don`t worry about the things you can`t change only those you can!

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Seeing Through The Clouds!

I was diagnosed with COPD, Pulmonary hypertension and heart failure when I was forty nine years old.Got very ill over a three week period and was taken into accident and emergency, admitted and then diagnosed by my consultant after a series of tests.Looking back I can see now the warning signs of illness but I had no idea at the time that I was becoming ill. I use to walk my dog regularly every day for a couple of hours and always thought of myself as being pretty fit and healthy.
Looking back I can now see those warning signs.Getting out of breath walking up stairs and hills, feeling tired and putting on a lot of weight which I now see was fluid retention rather than middle aged spread.When you reach middle age you think of these signs as those most get when they reach middle age not signs of serious illness. I suppose like everyone who had gone through life without any major illness you always think it can never happen to me!
I think my case is not unique and happens to many.Through lack of knowledge or a failure to see signs people often only seek help for illness when its very late and  harder for doctors to treat then.Early diagnoses and treatment is the key to a successful outcome with all serious illness.
The question has to be asked how can we stop this sort of thing happening so often.The answer I believe lies in more screening and medical checks.There are many different types of screening that can be done now for many serious illnesses but many are not readily available on the NHS when they should be. I also think that everyone should be offered regular medical check ups to test blood pressure etc so any early warning signs can be picked up by doctors.
The NHS needs to put far more resources into preventing ill health than it does. This may mean that a lot of money may be needed to invest in new programmes and initiatives to prevent ill health but I think that investment would be money well spent and could actually save more than it would cost by preventing a lot of serios illness.

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Pulmonary Hypertension.

Very good article about how people are often mis-diagnosed when they have PH.
Pulmonary Hypertension Association - Press Releases

Treat the Patient!

Image via WikipediaI have Pulmonary hypertension, empathysema and heart failure so am under a consultant specialist in heart and lungs Being under a specialist is a blessing of course  but can at times be a problem.
If you go to your specialist and tell them you have different symptoms there is always this presumption that the symptoms are problems caused by your heart and lung problems and this is not always necessarily so.There always seems to me to be a reluctance to think outside of the box and this ignores other possibilities.
I have problems with rapid heart beat. For nearly eighteen months I have had this and there has been a automatic assumption that this is caused by my heart and lung problems but now they believe that the problem could be caused by a thyroid problem not by my heart and lung problems.I have a problem with fluid retention and have been having to go to the toilet a lot during in the night. This was presumed to be a heart and lung problem but now they believe I may be diabetic and that may be causing it.
I would like to see specialist consultants treat the patient and not just the illness. Treat us as a person and be prepared to think outside the comfort box of there own specialism for the benefit of the patient.Health, as is life itself, is complicated and often the obvious is not the solution to a problem.

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Knowledge!

I know a lot of people with Pulmonary Hypertension and other long term illnesses don`t really want to know all the in`s and outs of their illness and would rather be ignorant of many of the facts of the illness they are suffering from. I can understand that point of view as having an illness like PH can be frightening and make you fearful of the future but personally I think they are wrong and are not doing themselves any favours by remaining ignorant.
With these illnesses the key to managing them and remaining alive and well is in fact knowledge and self help. The doctors can do so much but you also have to help yourself as well and you cannot do this unless you understand your condition and the illness you have. Knowledge someone once said is the key to power and that is very true. By having knowledge about your condition and your illness you have the power to help your self and control and manage your illness.Ignorance may give you some comfort in the short term but in the long term knowledge is the key to survival!

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Constipation!

Image via WikipediaWhen you have heart failure you tend to take diuretics for fluid retention and because of these two factors you can easily become constipated.It can happen quite quickly and its something that you need to guard against in your daily life by eating the right things.I find having wholemeal bread instead of white bread and eating  plenty of vegetables, fruit and salad does help to guard against this.It also of course helps you feel better as eating a healthy diet keeps your weight down and gives you the protein and vitamins you need.
When you have long term health problems the doctors give you all the drugs and treatments they can to help you but I do feel strongly that we all have to do our bit to help ourselves and to stop our lives being disrupted and made worse by the inevitable side effects of the drugs we take and the illnesses we have.

Fluid Retention.

Image via Wikipedia

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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Becoming Disabled!

When I become ill I become disabled as I can now not walk far and every day tasks are either hard or impossible. I am on oxygen for most of the day and my life is built around inhalers, drugs and visits to the hospital or doctors.
This is a dramatic lifestyle change and how do you cope with it.Firstly you should never be ashamed or afraid to say that you are disabled.This is what you are and none of us should be ashamed of what we are. Secondly you should not feel guilt about not doing things if you don`t feel good or you simply cannot manage it.You have to realise that now is the time to put yourself and your health first as if you don`t those around you who you love and who you have always put first will not have you around for much longer.

Pulmonary Hypertension and Other things!

Most people with PH have other illnesses as well. I have COPD which is empathysema and other lung problems as well as sleep apeona and heart failure. Most PH sufferers have heart failure on the right side of the heart.
It can make life complicated as what is good for one problem can make the other worse. Your suppose to drink a lot for instance when you have COPD but having heart failure you are meant to limit what you drink because it gives you problems with retaining fluid.
Its complicated but can be interesting because you need to know about your illnesses and understand them so you can help yourself and manage your condition so you do tend to learn a lot about medicine and drugs and different treatments. Life sure is complicated with PH but never dull.