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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Raising Funds!

Please support this great guy who is trying to raise funds for the Pulmonary Hypertension Association!http://www.justgiving.com/Kevin-Pinches0

A Song for All of Those With Pulmonary Hypertension.

Let Me Breathe by J. Paul Adams from phatoronto on Vimeo.

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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Please Support This Event and Raise Money For A Great Cause!

News

This is Great News!

Image via Wikipedia Another great breakthrough in the fight against Pulmonary hypertension.
http://machineslikeus.com/news/breakthrough-achieved-treatment-pulmonary-hypertension

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Annual Flu Injection!

Image via WikipediaEveryone who has a long term condition like Pulmonary hypertension, COPD etc should have the annual flu injection.For normal healthy people flu can be nasty and make you feel really unwell but for those with long term health problems it can be far more serious.It can put you in hospital or worse. It is wise to bear in mind that thousands die each year because of the flu and many of them are people with long term health problems.
This year for the first time a vaccine for swine flu will be in the injection with two other flu virus`s. I have heard a lot of people say that they were considering not having the injection because of this because they were frightened of the fact that the injection contains swine flu.Don`t think twice about having it and there is nothing to be concerned about at all.The only reactions to the injection I have heard about is a slight sore arm for a couple of days and mild flu like symptoms for forty eight hours. Considering the risks you are taking not having it this is a small price to pay!
My advice as someone who has had the injection is get it now there is nothing to worry about!

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Good News Story!

This is a great story about a very brave and talented man who as overcome the odds Pulmonary hypertension has thrown at him and is making his life a real success.http://www.businesscornwall.co.uk/news-categories/awards/joey-pouch-beats-the-odds-123

Empathysema and Traffic Pollution.

This is a link to a very interesting article that will probably be of interest to those with PH who also have empathysema which I know a number do. I think it shows the importance of us reducing car use as its clear that this is having an effect on some peoples health.We need to  this to happen not for ourselves as for us it is too late but for those who come after us who deserve cleaner air to breath and not to have to  live their lives with the risk of contracting something as dreadful as empathysema.http://www.nlm.nih.gov/medlineplus/news/fullstory_104423.html

Stem Cell Treatment and Pulmonary Hypertension.

This is a link to a story about Pulmonary hypertension and stem cell treatment.It shows that much progress is being made with this treatment. Patients are being helped by this treatment now and I am sure that in time many more will be when the treatment as been fully developed and is more wildly available It gives real hope to all of us suffering from PH..http://medical.presslib.com/alternative-medicine/1671234.htm

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Waiting!

When you have Pulmonary hypertension or another long term condition you tend to have regular tests blood tests, CT scans, MRI`s etc etc. Most of these tests are noninvasive and are nothing to worry about the thing that gets to me  is the waiting  for the results.
Sometimes you have to wait three or four months before you get these results as you have to see your consultant for them and I think that is terribly unfair.The delay worries people who are ill and already have much to worry about unnecessarily I think. When you have had a test you should get those results within weeks not months. If consultants are not able to see you and tell you the results  then their juniors should be able to give you the information. If not I see no reason why the results could not be sent to your GP for them to inform you of the results.
Its about time that doctors thought more thoroughly about how they treat patients and tried to reduce the stress to a minimum they have to go through.Stress does no one any good but it can do great damage to anyone suffering  from a long term condition.

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A Good News Story!

Think this is a great story that gives real hope to everyone suffering from lung problems and shows the unbelievable progress of medical science.http://www.starnewsonline.com/article/20101007/ARTICLES/101009718/-1/news38?Title=Early-double-lung-transplant-patient-celebrates-20-years-of-breathing-free

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Interesting Fact!

 Every day, the average American takes 3,000 steps. Before treatment, the average pulmonary hypertension patient can get winded after just 3 steps. Breathe life into a good cause and spread the word about pulmonary hypertension! Spread the word:http://www.phassociation.org/AwarenessMonth2010

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Respiratory Tonic Tea to Support the Lungs.

Haven`t tried this yet but it sounds as if its worth trying.
Respiratory Tonic Tea to Support the Lungs | Sara Pope Agelasto

Mind Over Body!

Image by Pieter Musterd via FlickrI have always believed that a healthy mind leads to a healthy body. I think if you are positive and happy then that does help you feel well and to fight illness.When you have a long term illness like Pulmonary hypertension it is hard to be positive and to feel happy because of the simple fact that you often feel so awful. Its hard to be positive if all you want to do is to sleep or your heart is racing so fast it often seems as if its going to take off and enter orbit!But you have to try as it is the key I think to feeling better about yourself and your life.
I find that there are several things that can help. Firstly you have to put yourself and your needs first. Most of us spend our lives putting others first but I think you have to change when you become ill with a long term illness.You have to put your needs and yourself first. It may sound selfish but I think you have to put yourself first just to survive.I think you have to use your time to do the things that you enjoy and give you pleasure.You don`t have to do a lot physically just perhaps sitting on a beach looking out at a beautiful scene like that in the photograph can really lift your spirits. I also think its important that you try to keep occupied and busy as much as possible as this helps keep your mind off your troubles and stops you delving into self pity which I know from experience is so easy to do.It is also good to have a hobby that you enjoy and put a lot of your efforts into that. I research my family tree which is I find interesting and enjoyable and keeps my mind occupied. It is also a hobby that doesn`t take up much energy which is an important factor when you feel so tired all of the time.
The more positive you feel the more happier and contented you feel the better you will feel in yourself.Its amazing how much we can cope with and how easy it is to overcome even the biggest of obstacles when we are at peace with ourselves and our soul is happy and contented.

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Computers, New Technology and Disability!

When you suffer from a long term illness such as COPD, Pulmonary Hypertension etc you become disabled and your life changes forever. You find it harder to get around as much as you did and you inevitably come into contact with other people less.Your life  changes but it doesn`t end so you try and find ways to make life easier and to carry on with some semblance of a normal life. I have found the computer has played a big part in this.
My computer is my lifeline to the world. Its where I do my shopping, banking and all the other every day things people find easy to do but because I have a job getting about I don`t. I have also found that it can act as a great way to socialise and to communicate with others. To me and I do know to many others who are disabled our computer is as vital to us as our cooker or fridge!
I think its a pity that those in the business of caring for the disabled, health care professionals, doctors etc do not recognise the impact computers and other new technology could have on the quality of life of those who are disabled with long term illnesses.I also think that if new technology was used more then costs for the health services and local social services could be brought down.
I believe that anyone with a long term illness should be put online by the health service.Many people with long term illnesses need home helps and carers to get there shopping, do there banking etc if they were online this would not be needed in many cases as they could do this themselves online.A saving in cost and I suspect benefits to the disabled by making them feel more independent.I also think you should be able to order repeat prescriptions and book doctors and hospital appointments online. This again would save costs in paperwork etc.
Going on from this you could have what is termed home medicare where people take their own pulse and oxygen levels and also their own blood pressure everyday at home and put the results online or over the phone to a nurse who would then be able to see if the patient needs to be seen rather than have to take up her or the doctors time in surgery.
New technology and computers have opened up countless possibilities for improving and enhancing the lives of the disabled and the long term sick.The disabled and the long term sick have recognised this and are using new technology everyday to improve their lives. Sadly I don`t think health professionals have so far recognised the possibilities and played their part in using this technology to help their patients and clients.

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Sleep Apnea.

Image via WikipediaLast October I was diagnosed with Obstructive Sleep Apnea.This is a problem that quite a number of people with Pulmonary hypertension suffer from. In broad terms it is a condition that  causes your windpipe to close up when your asleep which stops you breathing. The body tends to wake up when this happens after about ten seconds and in itself it can`t cause any problems but it puts an enormous strain on your heart and body and can cause strokes and heart attacks. I stop breathing about thirty six times per hour, some people do it much more often.
The condition is diagnosed by a sleep study.The photograph shows a man wired up ready for one. A sleep study is a simple non invasive procedure that most people do at home where you wear various monitors over night which take readings and finds out if the illness is present or otherwise.
If the condition is judged to be severe which is if you stop breathing more than thirty times per hour when asleep or you have an heart condition or another illness like pulmonary hypertension that puts strain on your heart then doctors will usually treat it by getting you to wear what is called a CPAP mask at night. This is a mask that covers your nose and mouth and pumps concentrated air into you to help keep your airways open.It is very effective in dealing with the problem but it does take a time to get use to wearing it and sleeping while it is on.
When you have sleep apnea your body tends to wake up every time you stop breathing although most people don`t remember this as you don`t come fully awake and most people with sleep apnea do find themselves feeling extremely tired. Once they use the CPAP mask they do notice a real difference and it can make a big change to there lives.
I found the best way to get use to it is get use to it gradually. First just wear it for a couple of hours and then slowly build up until your on it all night. Most of the machines have counters on them that record how long you have been using it so it is also a good idea to use that in setting yourself goals when you first start using it. I found that it also helped just to sit with it on for a couple of hours in the daytime just to help get use to it.
The thing you have to remember that although the mask can be a bit of a pain it is really your fiend as it is helping you avoid far more serious problems.

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Controlling Your Weight!

When you have a serious long term illness like Pulmonary Hypertension, COPD etc it is hard to control your weight.You tend to exercise less because of your illness and tend to eat more because you have more time on your hands so it is hard to keep your weight under control.
It is of course really important that you find ways of controlling your weight as this will help your condition, make you feel better and also put less strain on your heart which is always put under strain by the symptoms that you get such as breathlessness, exhaustion etc when you have PH, COPD etc.
A year ago I weighed eighty kilograms now I weigh sixty nine. I can`t say that I feel any better for it but that is down to other factors but I am sure that it has helped me losing this weight. My BMI indicated I was overweight when I was up at eighty kilograms but now my BMI is in the healthy weight range which is where we all should aim to be.
Starvation and fad diets are not the way in my opinion to lose wight its just down to a few simple rules and commonsense.You need to train yourself not to snack in between meals and if you do eat a piece of fruit rather than a packet of crisps or some biscuits.Far to many of us skip meals and eat snacks rather than having three good meals a day and I think that is unhealthy and what leads to many being overweight. I also think you need to think what you eat. Try to eat fruit, vegetables, rice, salads etc. Keep away from the high calorie unhealthy processed food  things such as pies and pizzas etc.I also think its important to restrict your fluid intake especially if you have PH and have a problem with fluid retention.Don`t go mad on that and adjust things if the weather is warm but try to restrict your intake to one and a  half to two litres per day.We just need to follow a few sensible rules, show a bit of self discipline and we can help ourselves by making sure that we don`t balloon up with weight. I am a great believer that we must always remember that the doctors can do so much to help us but we have a role to play in controlling and managing our condition as well and we should not neglect our part no matter how awful we feel at times.

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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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Natural Liquorice!

Image via WikipediaIf you are taking diuretics which many people with Pulmonary hypertension do you would be wise to stay off products that contain natural liquorice, shown in its plant form in the image.. A new study as showed that patients eating three ounces of liquorice twists a day for a few weeks can have their blood pressure raised, get increased edema and lower their potassium levels. The liquorice contains the chemical Glcyprhizin which retains sodium and makes you lose potassium, both are potentially dangerous, especially if you have PH or other heart problems.
Not good news. I love liquorice but I think its always best to play safe with these things.Those of us with long term health problems have enough to cope with without causing ourselves more problems.

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Great News!

This is a link to some very good news about a patient who has COPD who has received stem cell treatment. It seems that it has been so successful that the patient concerned has even be able to stop using his inhalers.We have seen similar breakthroughs in this treatment with Pulmonary hypertension so it seems that medical science is really making huge strides in making stem cell treatment effective. Congratulations to the medical team concerned.http://www.prweb.com/releases/XCell-Center/COPD/prweb4481494.htm

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Long Term Oxygen Therapy.

Image via WikipediaWhen I was diagnosed with Pulmonary Hypertension I was put on oxygen for at least fifteen hours a day.This wasn`t basically to help me breath but to help my oxygen levels stay up above ninety and so stop me becoming breathless and having such symptoms as giddyness, pain in the chest and a very rapid heart rate.It is basically more a preventive measure than anything else.
The oxygen is delivered via a oxygen concentrator, shown in the photograph, which is basically a machine that produces liquid oxygen.Nasal canulas are generally used which is a tube you put around your face with tubes that go up your nose.Most people have long leads on the concentrator so they can move about the home easily. At night people tend to have the machine away from the bedroom because it can be noisy.
Oxygen at a high level for a long period of time can damage peoples lung function but most people on oxygen with PH are on so low levels it cannot harm you at all. In fact oxygen can be of great benefit to sufferers as it not only guards against breathlessness it can also lower the PH pressure as oxygen given for fifteen or hours or more can help open up valves and reduce pressure on the heart.
Some people find it hard when they are told they need oxygen as they tend to think its a constant reminder they are ill and a sign there time is ending but I think they are wrong. Long term oxygen therapy is just one of a number of treatments that people are given with PH and it can make a big difference to peoples life.  People should always look on it as a friend rather than a enemy.

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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.

Warfarin.

Warfarin is an anti-coagulant drug that many people with Pulmonary Hypertension take to stop clouts occurring  in their blood. I was on it for about a year after being diagnosed and it can be a bit of a pain but it didn`t give me many problems.
You have to be tested quite regularly so the medical people know the best doze to have you on so that you keep in a range of what is called INR. Basically if its too low then your clotting too quickly, if its too high then your clotting too slowing.Obviously if you are clotting to quickly there is increased chances of a heart attack or stroke and if your not clotting quick enough then there is a danger of an internal bleed occurring.
When you first go on the drug the testing is fairly regular but after a time when your body has got use to the drug the periods between testing can be as long as two or three months. The drug is an effective drug that will not give any problems as long as you respect it. Eat regular meals, don`t drink things like grapefruit and cranberry juice, stay off the drugs like asprin for instance that the doctors will tell you to and don`t drink alcohol except for special and rare occasion's.
There are risks going on Warfarin as it can occasionally cause serious complications but the risks you run not taking it when the doctors say you should are even greater.

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Chocolate Can Help!

Image via WikipediaInteresting article about the benefits of dark chocolate.We always think of chocolate as being harmful to our health and being responsible for making us over weight but this study has shown that dark chocolate can lower hypertension which could be of particular benefit to Pulmonary Hypertension patients.
My old gran use to say that a little bit of what you fancy does you good, in the case of dark chocolate she could very well have been right!
http://www.medpagetoday.com/Cardiology/Hypertension/6084