Living a long way from Medical Care

ITP Medical Care, Living with ITP, Traveling for ITP Care, ITP and Me

ITP Medical Care, Living with ITP, Traveling for ITP Care, ITP and Me05 August 2013 – I don’t know if I have told you but I have recently moved out of Sydney, down the coast a few hours back to the town where I grew up.  It is so lovely here.  We have everything we could possibly need, accept for one thing.  Haematologists.

What if you don’t live close to a hospital?

Today I went to get my car key fixed.  Standing in the lock smiths workshop I had a clear view of the town airport.  Looking out onto the run way I saw a helicopter land and an ambulance drive out onto the tarmack.  I got to thinking.  I was called away from the window to pay, so I never saw who or how they were loaded onto the NSW Ambulance helicopter.  I turned back in time to see the front lift off slowly, methodically, and then the back, lifting level, It hovered there for a moment appearing like it was struggling to get higher, just a metre off the grown.  Waiting for something, suspended and then it was gone, buzzing through the air, up and forward, north to Sydney I thought.  The image stayed with me – and inspired this post.

Traveling over 6 hours for visits

For me to get to see my Haematologist I have to travel for more than 6 hours in a car – each way.  I thought it would be fine.  We made the last trip up, and it all felt like a holiday really.  Now that my next appointment is coming up, I don’t think I have the strength.  It feels like we just got home and now we are turning around and driving back to Sydney.

Long term Solution?

There is no other solution for us, other than to move back to the city.  We understand the risks, and so must you, if you choose to live away from Expert Medical Treatments.  Don’t get me wrong, this can be scary.  Watching that ambulance drive out onto the airstrip I was overcome with fear that that might be me one day, or a member of my family.  I am just so grateful that we live in Australia and I guess I cant complain at all when you consider everything that is afforded us.

This is just part of my life, Living with ITP, and I am getting used to it – as Shit as it all is.

Smartphone Apps for Managing ITP

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp. Famous people with itp, celebrities with itp, low platelet count,

There are a lot of apps available at the moment for both Iphone OS and Android.  As of June 2014, there were one and a half million apps available for download to your smartphone.  It is no wonder that there is an app for everything.

Below are my favourites for managing and living with ITP.

 

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.   Famous people with itp, celebrities with itp, low platelet count, Apps for ITPITP Tracker

Free

The ITP tracker was developed by the people at Health Monitor Network.  It is aimed at being a complete Platelet Disorder Resource.  It is designed by people who know what you need.

There is a place to record your platelet count, which automatically graphs the data making it easy to read; a calendar for treatments and appointments; as well as a place for symptoms, moods and side effects.  I have only just found it, wish I had it from the first day, I could have kept all my records together…

 

apps for ITP, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.   Famous people with itp, celebrities with itp, low platelet count,BloodFeud

Free 

Bloodfued is a game. A funny and informative game.  This game is hilarious and yet very educational.  I found it hard, at first to get my red blood cell moving, as I’m not a computer game person, but I must admit I might be addicted.  I have been playing it all afternoon and still haven’t moved on to the next level.  I’m not even sure there is a next level.

This game is designed for children, obviously, providing a much needed visual resource for understanding platelet disorders.  The game is centred around a red blood cell shooting platelets with protective IVIG before the immune system destroys them.  There are three settings – Leukaemia – ITP – Sickle Cell Anemia.  A great way to spend your time, waiting for IVIG infusions,

 

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp. Famous people with itp, celebrities with itp, low platelet count,

ICE Emergency Medical Info

Free

There are a lot of Emergency Medical Apps in store to choose from.  They range in price and functionality.  Some cost money to download while others are free.  I think they are all fine, it just depends on which one you like.  I use I.C.E Emergency Medical info.

The important thing to look for is that the Medical alert information is accessible after the screen has been locked.  there is no point in having all that information if nobody can access it.

Itp on Pinterest, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp. Famous people with itp, celebrities with itp, low platelet count,Pinterest

Free

Pinterest probably seems like an unlikely addition to this list, but hear me out.  My sister actually drew my attention to a number of pin boards dedicated to rare autoimmune disorders.  When I started to investigate, there were a lot of people on Pinterest talking about ITP.

A simple ‘ITP’ search on Pinterest will bring up loads of Pin Boards and Accounts from people sharing photos, articles, blogs, websites and event information on ITP; all from Pinterest.  You will need a pinterest account to log in to the app.

 

 

 

 

Fear

ITP Symptoms treatment

Feature image from HEALTHYPLACE

There is a part of being chronically ill that a lot of people don’t talk about – Fear – but I thought we should have a little chat about it now. Why not?

I can remember when I was first diagnosed with ITP (5 years ago now) I became afraid of the strangest things.  So many aspects of my life that I used to take for granted where suddenly fraught with danger and worry.

I was a ‘sick’ person and standing at the top of a flight of busy stairs was a frightening idea.  I became scared of riding my bicycle on the road around the city, and crossing a busy street.  I was afraid of knives, blades and hitting my head on the kitchen cupboard doors.

The blood rushed, I grabbed my foot to my chest and held it so tight my knuckles turned white.

I was scared of hurting myself and bleeding in front of others, of having them stare or fuss over me.

All of these things were always a danger – but I had been made aware of them now, and I was finding it hard to ignore.  Eventually – over the years, a lot of these fears have moved to the back of my mind, replaced with other worries like being late, or loosing my wallet, but there is one fear that is still with me.

I am still afraid of being alone. I don’t mean romantically, I mean actually alone.  I am scared to live in a house on my own.

A few years ago I was at home one night, rearranging our house.  We must have just moved in, because I had been to Ikea and bought a few photo frames to frame so old sketches from Art school.  I was so careful removing the glass and  unscrewing the sides, leaning everything against the end wall as I went.

I stopped mid project to make dinner – and when I returned to the lounge room, I walked carefully around my projects admiring how a frame can lift a drawing so dramatically – When I heard a dull crack and felt a hot white slice – burn through my foot.  The blood rushed, I grabbed my foot to my chest, and held it so tight my knuckles turned white.

One glass plane had slide silently down the wall onto the carpet and lay invisibly on the carpet.

To this day, I still feel sorry for my mother, for the horrible phone call she received from me that night.

I have not found any way of making that fear go away. Sometimes, I think that there is no cure for fear, you just learn to be ok with its presence.

If you know someone that does suffer a chronic illness perhaps ask them about their fears, get them talking about what they have become afraid of.  It can reduce the power, if fears are known and understood.

You have your own fears without getting caught up in the fears of others.  In the past I have been influenced by other people being scared for me.  Like the nurses when I went to get my contraception changed, or friends not wanting me to do silly or exciting things.  Family not wanting me to travel too far away.

They will only be worrying because they care or they are interested in what you have, either is a compliment that you should just take and shut up about.

First Aid

first aid for idiopathic Thrombocytopenic purpura

FIRST AID INFORMATION

ITP is rarely a fatal disorder, however, it does have the capacity to complicate even minor injuries and quickly turn them into major ones.   If you have a bleeding disorder or live with someone who does, you will already know that even the smallest cuts and bruises need first aid and attention.  Taking a serious approach to minor injuries will not only, minimize the bleed, keep the bruise small but also hasten the recovery.

Bruises

A bruise does not involve a break in the skin and as there is no visible blood, bruises are often seen as less critical than a cut or abrasion but they do still need proper first aid.  If you take the time to get to know your bruises, you will soon realise that there are a variety of types of bruises that can give you an insight into your bleeding.  The colour, size and location of the bruise are all indicators of your health and platelet count.

In terms of location, the difference between a bruise on the front of your body and the back of you body is huge.  As most bruises are caused from blunt trauma they will appear on the front or side of your body as you are more likely to hurt yourself moving or falling forward.  Therefore a bruise on the back of the calf is very different to a bruise on the knee or front of the thigh.  A bruise on your hand is very different to a bruise in your armpit.  Unless you can remember being struck there, bruises in hidden locations tend to be a spontaneous bleed that will indicate a lower platelet count.

first aid for idiopathic Thrombocytopenic purpura Treating a Bruise

Treating a Bruise is as simple as following the RICE Method.  Rest, Ice, Compression and Elevation.

REST – To Rest the area, you may need to stop what you are doing, sit still or lay down.  A resting body has a lower heat rate this will help slow the blood flow to the injured area.

ICE – Apply ice or a cold pack to the injured area to reduce swelling and slow the flow of blood.  This will help ease the pain of the bruise and the sight of it, over the next few days.

COMPPRESSION – Apply a small amount of pressure if it looks to be a big bruise, but try not to hurt yourself further.

ELEVATION – This is about getting the injury above the heart.  If that seems difficult, remember that you can always lower the heart, by lying on the ground.  By elevating the injury, you tend to be still and focus on the injury.

Cuts and Abrasions

Minor cuts and abrasions tend to take longer to dress because of the presence of flowing blood.  With ITP, you know the injury is going to bleed a lot so allow yourself more time.   Be patient with yourself, or someone with itp, trying not to get fed up with how much blood is flowing, or how much more difficult it is to fix in comparison to a ‘normal’ person.

If you or someone with itp has just injured themselves and needs help, the last thing they want is to feel like a bother.  What might look like a tiny injury to you, will be a big deal to them.  What people with itp need is someone who will embrace the bleeding, hold you finger in the hair, make you laugh and make a decent call about whether or not you need a doctor.

Treating a Cut or Abrasionfirst aid for itp, cuts and abrasions

Treating a cut, bleed or abrasion follows the same steps as treating a bruise, however, you will need to consider, at the end of you initial first aid, weather or not the patient with itp will need a stitch, a doctor or a professional to dress the wound.

REST – To Rest the area, stop what you are doing, sit still or lay down.  A resting body has a lower heat rate and this will help slow the blood flow to the injured area.

ICE – Apply ice or a cold pack to the injured area to reduce swelling and slow the flow of blood.  During this step you can clean the wound quickly with cool water or a cool cloth before you compress to stop the bleeding.

COMPPRESSION – Apply pressure to the area until you can see a visible reduction in the flow of blood.  This may take up to ten minutes.  At this point if you feel uncomfortable with the amount of blood loss, call a doctor immediately.

ELEVATION – This is about getting the injury above the heart.  If that seems too difficult, remember that you can always lower the heart, by lying on the ground.  By elevating the injury, you tend to be still and focus on the injury which is great to help the resting as well.  Compression and Elevation should ideally be done at the same time.

Try and stop the bleeding for ten minutes and if nothing changes, see a doctor to get a stitch or a professional dressing

Blood Test Bruises 

When patients with itp get their regular blood tests, they are often left with an unsightly bruise in the corner of their elbow.  These bruises are obviously from a blood test and tend to draw a lot of attention from others.  These are the bruises to try and avoid.  To reduce the size and colour of a Blood Test Bruise, remember that the needle has not only put a hole in the surface of your skin, but it has punctured the vein deep in your arm.

When the Nurse asks you to apply pressure to the blood test site, apply pressure to the vein deep in your arm, not the surface of you skin.  I used to get really bad blood test bruises until it was explained to me that I should apply a lot more pressure than I thought.  I was just trying to stop the blood coming out the hole in my skin, not the hole in my vein.

Serious Injuries

When does a small injury become a serious injury?  Patients with itp may worry about being too much of a bother to others, and may down play their symptoms or injuries.  But when should you call for help?

I have decided on this rule.  I call for help the moment I feel like I am not in control anymore.  If I have injured myself, I call for help if I feel confused, out of my depth, worried, sick, faint, uneasy, irrational or scared.  I call Doctors, or friends or family members just to get a second opinion.

 

EQUIPMENT

  • Band Aids and Bandages – These are great for in your bag or pocket because they are so small.  I always have a couple on me so I don’t have to make a big deal of little cuts and ask others for help.  I feel far more self sufficient with band aids in my hand bag and can pop a band aid on my finger, no problems.
  • Pads and Tampons – Tampons and pads are fantastic at absorbing blood and applying pressure with.  Pads are easily taped to injuries and help keep a wound clean until it can be properly dressed.  Tampons are good for nose bleeds, and dare I say it . . . .Gum Bleeds (I know, I know). You can also never tell if a period will be on time.
  • Strapping tapes – Good for applying pressure when band aids don’t quite go on as tight as you want.
  • Antiseptic wipes – tissues – For quickly cleaning the wound, so the dressing can stay on after it has been applied.
  • first aid for idiopathic Thrombocytopenic purpura
    Click here for Ice Packs

    Portable Instant Icepacks – It is easy to keep Ice packs in the freezer at home.  Every school and work place will also have a freezer somewhere you can keep a cold pack in, remembering that ice packs kept at school should be kept in a freezer that the student with itp can access at any time.  For travel, weekends, heading out for the day or when children are staying away from the home, there are also portable instant ice packs available.  They are something that my sister recommended to me, as she has them in the first aid boxes as a High School teacher.  They are fantastic to get ice onto a bleed or a bruise really easily.  They work as part of a chemical reaction within the bag that begins when you break apart the crystals with your fingertips.  They are a bit large, and not reusable, but very worth it.  I have always traveled with a couple in my carry on.

In Case of Emergencies – ‘ICE’

Conceived and promoted by a British paramedic in 2005, the ICE program encourages people to enter emergency contacts in their mobile phone under the name “ICE”.  Alternatively, a person can list multiple emergency contacts as “ICE1” and “ICE2”.  The popularity of the program has spread through English speaking countries in Europe, Australia and North America.  The number saved as ICE in your phone should be aware that you have saved them as your ICE contact and be able to verbalise you medical condition quickly, ideally knowing your blood type and most recent blood count.

itp in case of emergency idiopathic Thrombocytopenic purpura The problem with this program is that for security purposes, many mobile phone owners have a lock on their mobiles, that require a password to access.  A few phone companies have addressed this with ICE information and lost & found information being accessible when the phone is still locked.   Some handsets provide access to a list of ICE contacts directly from the “locked” screen.  In the iphone 4S, the Siri service can access the ICE emergency contact details by asking Siri verbally to ‘Contact ICE’ even if the phone is locked.  Check with your mobile phone carrier or device manufacturer to see what your options are.  These details may help you choose a phone for a child with ITP.

Medical Alert Bracelets

blood disorder medical alert bracelet
Click here for Medical Jewelery

You can also consider getting a medical alert bracelet that carries details of your condition, blood type and ICE contacts.  You may even include the details of you hematologist or GP.    I personally do not wear a Medical Alert Bracelet, but that is a personal choice.  A number of styles, necklaces and bracelets are available.  Check them out here

Children with ITP – First Aid in Schools

There is a great deal of information out there for Teachers, Staff and Students dealing with illness and bleeding disorders in the class room.  A full article about Children with ITP in schools is available on this website here X.  Teachers and staff are trained to deal with first aid and having taught as a teacher myself, I know the care that is taken in schools with other peoples children.  As a parent I would not under estimate a teachers ability to deal with an emergency.

Call an Ambulance if. . . Youu or anyone you know with itp has suffered a Head Injury of any kind.  Call the Ambulance if you feel uncomfortable or out of control.  Call the ambulance if there is a lot of blood.  Call the Ambulance if your emotions are getting in the way of your ability to deal with the injury or bleed.