The Illness isn`t Me!

I am basically a nice guy. I care about people and I treat people right. Always believe that you should treat people the way you like to be treated.When you have a long term illness you tend to start to think I feel that the illness is part of you and that the only people you have things in common with are those who have the same illness as you but just because a person has the same illness as you it doesn`t necessarily mean that there like you with the same ideals and beliefs as you or frankly as nice as you think you are.
I was on a PH site the other day and I realised that the only thing I really had in common with the other people on there was that we shared the same illness and that a lot of the people on there were not really that nice.They were judgmental and intolerant of those who disagreed with them.They basically didn`t treat people the way I believe in treating them.It made me realise that my illnesses are not a part of me but just a part of my life!

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• I am still me. (brassandivory.org)

Exercise and Pulmonary Hypertension!

Image via WikipediaWith most lung and heart problems doctors tell you that the key to improving your condition and living longer is exercise this is not the case with Pulmonary hypertension.
With PH you are advised not to stop doing things but at the same time not to do to much. To listen to your body and stop whenever the symptoms happen. Chest pain, dizziness, breathlessness etc.
People with PH should always remember that there condition is not just a lung condition it is a lung condition that affects the heart and puts it under strain so caution is the watch word.We PH sufferers all want to live as long as we can so we must all be careful that we do nothing to make our condition worse so we must exercise caution in what we do.We must try to control the condition and not it control us by using our common sense not to let it win the battle!

Stem Cell Therapy.

Image via WikipediaIn Canada, India and elsewhere great advances are being made using stem cells to treat Pulmonary Hypertension. At present stem cell therapy is not providing a cure but some people are being treated with the therapy and it is not just stopping the illness from progressing it seems to be having some success in actually improving it.
I think a cure for Pulmonary Hypertension will come and  the evidence is that it will be found through this treatment.
Unfortunately other countries seem to be making more advances in this field then we are in the United Kingdom.More money seems to be putting into research and the doctors seem to be more willing to take the risk of failure by giving the treatment to patients. The treatment costs about forty thousand pounds and at present has to be renewed about every three years but considering some of the drugs used to control PH cost something in the region of thirty thousand pounds a year the cost savings to the NHS are there if only they would take the risk with the treatment and didn`t want to see proven success before authorising it here.
I think its wrong that some people from the UK are being forced to raise large amounts of money to get this treatment so they can extend there lives and increase the quality of their lives.Its about time that our doctors in the United Kingdom showed the same ability to innovate and experiment with new treatments as those in such places as Canada and India do and served patients in the UK with PH better by doing so.

Pulmonary Hypertension. Hope!

This is yet more hope for those suffering from PH and shows what strides medical science is making in not just the treatment of the illness but its eventual cure.
http://www.medicalnewstoday.com/articles/197600.php

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• Medical researchers at U of Alberta discover potential treatment for pulmonary hypertension (eurekalert.org)

Listen and Learn!

The problems people who suffer from Pulmonary Hypertension have are often complex because you often have a number of illnesses as PH is often caused by other problems and in turn  causes other problems.
Many doctors because they do not come across PH often fail to understand the complex problems and so either misdiagnose problems or fail to treat them properly.I feel doctors would learn more if they actually listened to patients more.Listen to how they feel and there opinions of what they think any problems are.Patients live with the problems all the time and they are I feel not just in the best position to talk about the problems but are also a wonderful font of knowledge about all that is concerned with there illness.
I read recently that one girl was told that she didn`t have PH she just had post natal depression. This is the sort of nonsense that goes on because of doctors failure to listen and needs to stop.As they say that there is none so deaf as those that will not listen and in my experience there is no better description of a lot of doctors than that wise old saying!

Medical Research Studies.

Yesterday I read about a study into steroid inhalers which said that when you use them regularly you run the risk of increasing your chance of getting cancer by twenty to thirty per cent.At the bottom of the article it said that this study was done with a very small sample of patients and needed much more research before any conclussion could be made from the findings.
Several months ago I read of another study about another type of inhaler that said that could give you a increased chance of having an heart attack or stroke and that again said that the study was done with a small sample of patients and needed much more research.In fact a far larger study was released soon after which actually showed that these findings were totally wrong.
These sort of findings frighten people and could lead to people stopping taking medication that is vital to them and therefore could mean there conditions becoming worse. I understand there is a vital need for continous research into the medications we use but I think the researchers should not release there findings until sufficient research as been done to give conclussive findings one way or another about medications.To do otherwise is totally irresponsible.

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Papworth Hospital.

Image via Wikipedia

Papworth Hospital is a specialist and heart chest clinic in the Cambridgeshire countryside in England.It was the first hospital in the United Kingdom to perform heart transplants and it is a worldwide leader in its field.
I  have been there twice as its one of the eight specialist centres in the United Kingdom for Pulmonary Hypertension. It is a large hospital but has the feel of being much smaller than it is. The atmosphere in the hospital is welcoming and immediantly relaxes you.It is an hospital where the staff seem to put the patients first which sadly is not like every hospital. It is set in beautiful grounds with its own lake and is a perfect environment for those recovering from serious operations or who are seriously ill which most who attend Papworth are.
There are plans for a new Papworth Hospital to be built on a site in Cambridge beside Addenbrokes Hospital and the medical university there.This will be a new state of the art medical campas that will make it one of the world leaders in Thorasic medicine.I can see the advantages of this happening but personally I think it is a mistake.
Papworth as a wonderful hospital with a great atmosphere, in a great setting and all that could be lost in the name of what some see as progress.I believe Papworth should build of what it has already and redevelop and improve the site it is on now not move into a brand new building where it could lose most of what makes it the magnificent hospital it is today.
Far to often in this country we destroy the old in the quest for something better instead of building on what we have and making it better. Far to often we lose what we have in this quest and end up regretting what we have lost. It will be a complete tragedy if that happens in Papworth`s case.