Changes!

Image via WikipediaThere are times in all our lives where things happen that are so huge  our lives change completely.The first big change in my life was when my mother died.I was living with her at the time, still in the same home I grew up in as a kid so when she passed on I had to learn to run my own life, look after myself and try to build a life for myself. It was very hard but I amazed myself at my ability to adapt and learn and I soon got use to this new life.
The one thing that amazes you with these events is that once they happen your old life which had just passed days ago seems like a lifetime away . It  as if you had just been reborn to start a new life.
When I was diagnosed  with my present health problems my life changed again in the same dramatic way. One day I was fit and healthy and walking my dog for a couple of hours a day the next I had difficulty walking a hundred yards and doing the simplest of things.You are effectively disabled in an instant with doctors telling you your going to need oxygen and a heart transplant to survive and for the first time in your life your falling asleep in the daytime through utter exhaustion.But life carries on. Not like before of course but you adapt and change and learn how to survive in your new circumstances and you fight on.You fight for your life!
That is the thing I think that unites all of us who have these conditions  we fight! We fight to survive and to carry on.Its something we should be proud of I think and something we should never give up doing until our dying breath!

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Cold Weather!

As I sit here writing this there is a crisp deep white frost out in my garden and we are expecting a lot of snow later today.The snow may be nice for the kids but for those of us with lung problems it is far from nice.I find  the cold weather does make life a struggle.I try to keep my flat as warm as possible and only go out when I have to as I find if I get cold its much harder to breath..
I know energy is expensive now and many people struggle to  keep there homes warm in winter but if you have lung problems then it is important that you do keep warm. If you get cold your windpipe tends to get smaller which is why you have greater difficulty breathing, so my advice to anyone is hang the expense and keep the heating on. Without it your going to make yourself more ill than you already are.
If you find that you have to go out then I find that it does help if you wear a hat and scarf.I also think you need to walk steady when out rather than fast, which it is so easy to do when cold, as a steady rather than fast pace helps to keep your breathing in check and doesn`t push you to the extent where your going to get your heart start racing as well.
I think in this country people with long term health problems are not helped enough with there energy bills in winter. I believe that the help given to old people with their energy bills should be extended to those with long term health conditions as well. This would not only make the system more just but also prevent many people becoming ill and even dying from the cold because they can`t afford to heat their home as well as they should be able.Its a scandal that in a country as rich as we are, and we still are regardless of what the government say,  that people die because they can`t afford to heat their homes.

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A Rant!!!

I am writing this post  basically to have a moan about something that I find intensely  irritating at times. Like a lot of people with Pulmonary hypertension I have COPD which is actually empathysema.COPD describes a group of lung diseases. Most people who have these illnesses are smokers or ex-smokers.
Whenever I see a doctor who I haven`t seen before there is always this  presumption that I am a smoker which I am not and have never been. I have told doctors I have never smoked but I can see by the look on their faces that they just don`t believe me which I find  extremely annoying.
It is as absurd to make this assumption as it is to make the assumption that everyone with Aids is gay.I find it extremely annoying and I wish doctors would not do it.
End of rant!!!

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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.

Another CT Scan!

Got to have a CT Angiogram Pulmonary scan on Thursday.Lost count of the scans I have had since I was diagnosed.
This one as been ordered to see if I have any blood clots in my lungs.It involves a injection in the arm, through a cannula, of radioactive iodine which helps them see the blood vessels more clearly.The amount of radiation they inject you with is very small and not dangerous although its best to stay away from children and pregnant women for a few days after the injection.They say that the best thing to do after the scan is to drink plenty as this helps wash through the iodine more quicker. The scan is not painful although you do feel a hot flush when they inject you which can be a bit disconcerting.Some people have been known to feel as if they have wet themselves but its only a feeling you don`t actually do it. Thank god!!
Always feel nervous about these things before hand but once I am at the hospital people are so kind and caring and try there hardest to relax you that I cease to feel nervous.Unfortunately when you have along term health problem it does tend to be test, tests and more tests. After a while you tend to get use to them and just accept them as a part of your life!

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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

The Future!

When you have a long term health condition life can be a struggle. I think the aim must be to make that struggle as easy as it can be by managing and controlling your problems as best as they can.I believe that there are certain aspects of the care of those with long term conditions in the UK that can be improved and i would like to put some solutions forward in this post.
Starting from the beginning when you are diagnosed. When you are diagnosed I think its important to know as much as possible about your condition and your problems. Without that knowledge I think that its an almost impossible task to know how you can best help yourself. At present in my experience hospitals tell you very little.They seem to believe that patients are little better than children and should be told as little as possible.I believe that when we are diagnosed we should be given a folder about all aspects of our illness with contact numbers of specialised charities we can contact for support and more information. I also think that our records should be online so we can easily access them so we can read at our leisure all about our conditions.This would give us the knowledge we so badly need.
Another aspect of our care that is badly lacking is regular  monitoring.Most people with long term conditions see a consultant every three or six months but in between that time you see no one and there is no monitoring of your condition which lets be honest is ever changing.I believe that all of those with long term conditions should be seen at least once a month by a community nurse to make sure that there blood pressure and oxygen levels are fine and that they have nothing that is worrying them.This would not only improve our care but I think stop so many people with long term conditions being having to be admitted to hospital because problems would be seen before they become serious.
Most of us who have theses problems get a crisis from time to time.Many of us have no one to turn to when these occur say at night or weekend when the doctors are closed and are forced to phone for an ambulance for help. I believe that we should have a phone number of a specialist nurse we can call for help. Often you don`t need to go to hospital but end up there because there is no where else to turn to. Having a nurse on call would help stop this happening so often and once again lead to less people ending up in A and E.It would also lead to people with long term illnesses feeling safer and less alone. It is frightening knowing there is no one to turn to when you are feeling unwell I can tell you. I know from experience.
These are just a few suggestions where I think care can be improved. Some of these would mean more investment but that investment would not just improved patients lives but also save money with less hospital admissions in the long run.Sometimes you have to spend money to save it!

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

New Blood Thinner!

Article about a new anti-coagulant that is more safer and stable than Warfarin.
Study: New blood thinner works as well as Coumadin - Yahoo! News

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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.

The Spirit of Caring.

Whenever I go to the hospital one thing always impresses me and that is the attitude of people there. They care and want to help people.They show all that is good in people.A concern for there fellow man.A willingness to put others before themselves.Just a brief thought wouldn`t it be great if everyone was like them! I am sure the world would be a very much better place if people were.

Tests!

When you have Pulmonary hypertension or any long term medical condition you are likely to have to have lots of tests. Not just when you are first diagnosed but continually so the doctors can monitor how your condition is progressing.
When I was diagnosed I had X Rays, CT scans,Echo`s, blood tests, V/Q scan, Pulmonary functions test, six minute walk test and blood gases taken.Some of those tests I have had regularly in the three years now since I was diagnosed.
Most people with PH also have the right heart catherisation performed but I couldn`t have this done as the risk to my already badly damaged lungs was too much.If anything had gone wrong it could have caused very serious consequences.The RHC is the gold standard of PH tests and as it is the one that gives the most accurate record of the pressure in the pulmonary artery.
No one enjoys these tests and if you are having them for the first time you do get nervous which is only naturally but there is really nothing to be afraid of with any of them as none are really that invasive or involve much discomfort.I think people fear these tests if they haven`t had them before  because its  simply just fear of the unknown. Once you have had them once then you don`t tend to fear them any more.
Just a few years ago most of these tests didn`t exist but now they are common place and part of a doctors armory to fight illness.We may as patients get fed up with these constant tests at times but I believe that the advances medical science has made over the last twenty odd years in diagnostic testing has benefit patients by helping doctors get a clearer and more accurate picture of our medical problems and making it easier for them to decided how best to fight these challenges we all face.Without them our prospects would not be as good as they are now.

Wise Advice!

This is a link to a blog I have just found which I thought contained some very good advice for all of us who occasionally think we know better than our doctors. http://pogosmom46122.blogspot.com/2010/11/tyvaso-bump.html

Do Positive People Live Longer?

An interesting article that shows how people can benefit by having a positive attitude.http://copdnewsoftheday.com/?p=4304&utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+CopdNewsOfTheDay+(COPD+News+Of+The+Day)

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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Insomnia!

I have always had trouble sleeping for as long as I can remember but since I become ill it has become worse and is a real problem for me.As I have sleep apena I have to wear a CPAP mask at night which doesn`t make sleeping easier.I have tried all sorts of things to help me, reading a book, hot drink last thing at night, staying off tea and coffee in the evening and none of them work.
You get so despearate for sleep sometimes you would like to take sleeping tablets, something I have never wanted to as I hate the thought of being out of control of my body but unfortunately or fortunately I don`t know I can`t take them anyway because of the Pulmonary hypertension.
This is a post without advice or a happy, optimistic ending as I have no answer to the problem.I just hope that one day I will hit that pillow and go to sleep straight away instead of the constant tossing and turning for hours on end I go through now.

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Keep Your Dreams Alive!

We need to stop letting disease divorce us from our dreams. We will find that patients don't just survive, we thrive." -Charity Sunshine Tillemann-Dick. Medical advances in pulmonary hypertension make stories like this possible: http://abcnews.go.com/Health/Wellness/soprano-lung-transplant-donor-lung-breathes-body/story?id=11978908&page=2

Get Set For The Winter Cold Season!

Some good advice here about how those of us with long term health issues can stay well through the winter!http://copdnewsoftheday.com/?p=4281&utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+CopdNewsOfTheDay+%28COPD+News+Of+The+Day%29

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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Listening at Last!

Image via WikipediaFor the last eighteen months or so I have been suffering from a very rapid heart rate and total exhaustion.I have been telling the doctors that these symptoms have been getting me down but they just haven`t taken any notice. They seemed to think that they were just down to my heart and lung problems and were to be expected.
Two months ago when I went to the hospital I saw a doctor who I hadn`t seen before and he did seem to take notice and started to think that the symptoms may be being made worse by other factors. He gave me a thyroid function test, tested me for diabetes and checked my liver and kidney functions.Last week I went back to the hospital and saw my consultant and he said that the tests had found that I have an over active thyroid gland.
Not great news as it will mean further tests and more drugs but it pleased me to think that at last they were taking things seriously and getting to the root of the problem.He has put me on beta blockers to slow my heart rate down and also increased my dosage off diuretics because I was also suffering more from fluid retention.
At last it was good to be listened to and taken seriously.As I have said previously on this blog doctors must treat the patient and not just a particular illness and be willing to think outside the comfort zone of their own speciality.They should not assume all the time that symptoms are connected with existing conditions.If they would just do that a lot of pain, discomfort and worry would be avoided by patients.

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