NZPAH Trust and Support Group

Supporting, educating and promoting awareness of PAH

Tips for PAH Patients

We have put together some tips here that have been contributed by our members, or by the speakers who attend our Support meetings.  We hope you find them useful!

Visits to Specialists

SpecialistI find it very interesting every time I go for my Specialists Appointment at Greenlane Hospital. I am eager to learn all I can about PAH and for them to tell me hopefully there is no deterioration since my last visit. I really look forward to it (not the six minute walk, mind you, I don’t think anyone enjoys it). On my last visit, I walked an extra twenty metres, which I was very proud of. My husband and I have been going to our local pool at Pukekohe three times a week and walk up and down for an hour. Maybe this is helping, I am not sure but it surely can’t hurt to try. The Doctors and Nurses I see are very nice and help you to understand what having Pulmonary Arterial Hypertension is all about. Thank goodness they are there to help us with this not so nice disease.

One of the best items I have is a diary

DiaryIn this diary, I write down everything I want to ask the specialist on my next visit on the date of that appointment. It could be excessive mucous in my throat, to a pain here and there, spots on my skin, whatever has happened since my last visit. A couple of weeks back now, we had friends over for dinner and I ended up being not well, so I jotted down what was happening and asked about it on my next visit. Everything was alright, thank goodness. Every morning I take my blood pressure and write it at the top of the page and when I get my INR results I put it in my diary and my little red book. Sometimes I have to take a Warfarin dose of two one day and three the next. It used to get a bit complicated so on my husband’s suggestion, the even days I would take two and on the odd days I would take three. I found that helped quite a lot. My diary gives me a reference as to what has been going on over the last year, and if I need to look up something, it is there.
I could not do without it as it takes a lot of stress out of my life.

Sleeping Tips

Sleeping tips

Here are just a few tips to improve the quality and quantity of your sleep so that you can wake feeling more refreshed in the morning.

 

  • Keep your weight down.  Excess weight can have a big impact on your sleep.
  • Make sure you don’t sleep on your back as your throat is more likely to block off when your jaw drops down and back in this position. Don’t sleep on your stomach either.  This puts a twist in your airway which is very small.  It can also push your abdomen up under the big breathing muscle and stop your lungs expanding properly.
  • Lying on your side is the best for a patent airway.  Most people will sleep on their back at night even when they think they don’t.  To make sure you stay on your side you could try an old fashioned remedy.  Put two tennis balls in the crotch of a pair of pantihose, tie a tight knot on either side of the two balls to keep them in place and tie the top of the pantihose.  Have the tennis balls sitting on either side of your spine, high up.  Pull the ends under your arms and tie them firmly in the front with a bow so that you can undo it easily in the morning.  This will make it uncomfortable if you turn onto your back.  After two or three nights it probably won’t disturb you any more.  You may notice a big difference in how you feel when you wake in the morning.  Give your partner a rest and let them sleep too.  They shouldn’t have to keep waking and elbowing you to make you turn over.  If using this stops you snoring it is good for the rest of the family and means that you are also breathing better and getting more oxygen to your organs while you sleep.
  • REGULAR HABITS and times for going to sleep and getting up in the morning ARE VERY IMPORTANT.
  • You should not drink tea or coffee or green tea after midday as the caffeine stays in your system for some time and can still affect your ability to sleep well that night.Don’t exercise in the evening as exercising increases your core body temperature and can stop you from sleeping well.  Try to complete vigorous exercise by 3pm.
  • Turn TV and computers off at least an hour before you go to bed.  Looking into a bright light will stop your brain from producing melatonin which is what allows you actually to go to sleep and maintain sleep.
  • Looking into a blue light (TV & computer Screen) keeps your brain alert and awake for some hours afterwards. It is the sameas morning light. It stimulates your brain for a couple of hours afterwards.
  • Go to sleep in a dark and quiet room so that your sleep is not disturbed.
  • Do not have a TV or computer or radio in your bedroom.  Keep your bedroom for sleeping.   Keep it dark and quiet.  Allow your brain to have a rest from stimulation.
  • Go to sleep as early as possible before midnight, preferably by 10pm.  The earlier you go to sleep the longer and better quality of sleep you get and the easier it is to lose weight.
  • An hour before you got to bed (at a regular time each night) turn off your TVs and computers, turn off all the lights in the house you don’t need and preferably turn off all overhead lights.  Use a reading lamp (if you have one) to read by – or have a quiet conversation with your family and have quiet gentle music playing in the background.  This starts to calm you down and prepares your body and brain for sleep.
  • A shower or bath is also very soothing just before bedtime.
  • Good night time drinks are hot milk, hot chocolate (no sugar added) or hot milo.  If you have diabetes, try hot cocoa with no added sugar.
  • Keep your chin in a neutral position on your pillow so that you don’t block off higher in your throat.  Don’t tuck your head down when it is cold and don’t cover your head with any bed wear.  You may wake with a headache.
  • Avoid turning the light on if you have to go to the toilet in the middle of the night.  The lights will wake you up properly.  Use a night light for safety - plugged in to a switch low on the wall.
  • If you wake in the night do not drink tea or coffee or turn the TV on.  This will wake you completely.
  • If you do shift work put sunglasses on as soon as it starts to get light in the morning and wear them until you go to sleep in your dark bedroom.  If you need to go to the toilet during the day WEAR YOUR SUNGLASSES.  Keep as much light out of your eyes as possible.  Do NOT turn on the TV or computer as soon as you get home from work.  Save these for when you get up – in your morning.

The above is called sleep hygiene and is a very important part of the treatment for obstructive sleep apnoea (OSA) – but it is good advice for everyone in your family.

Information supplied by Guest Speaker: Christine Little - RGNON - Clinical Nurse Specialist - Respiratory - Sleep. July 2010.

Sleep deprivation

 

One of the best items I have is a diary.
In this diary, I write down everything I want to ask the specialist on my next visit on the date of that appointment. It could be excessive mucous in my throat, to a pain here and there, spots on my skin, whatever has happened since my last visit. A couple of weeks back now, we had friends over for dinner and I ended up being not well, so I jotted down what was happening and asked about it on my next visit. Everything was alright, thank goodness. Every morning I take my blood pressure and write it at the top of the page and when I get my INR results I put it in my diary and my little red book. Sometimes I have to take a Warfarin dose of two one day and three the next. It used to get a bit complicated so on my husband’s suggestion, the even days I would take two and on the odd days I would take three. I found that helped quite a lot. My diary gives me a reference as to what has been going on over the last year, and if I need to look up something, it is there.
I could not do without it as it takes a lot of stress out of my life.

 

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