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.

ITP Conference 2014

low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp,

 An International ITP conference will be held in a couple of days at Manhattan Beach, California.  The conference, aimed at patients, caregivers and the medical community will be held from July 11th to the 13th at Manhattan Beach Marriott Hotel.

itp conference, Treatment for itp, treatment of itp, treatment itp, itp treatments, Side Effects Prednisone,
The 2014 ITP Conference will be held at Manhatten Beach, California

It will be the 14th Conference of it’s kind organised by the wonderful people at PDSA America, The Platelet Disorder Support Association.

The three day program will include authors, researchers and clinicians who all have a strong interest in helping ITP patients.  There will also be PDSA Medical Advisors who will present programs at the conference.  This conference provides a great opportunity to hear the latest information on ITP, meet others who are coping with ITP, and receive answers to any questions you might have. It is also a wonderful opportunity for carers of ITP children to meet other people caring for ITP patients.  There will also be a patient mixer on Friday evening and a special family-oriented party Saturday evening.

The Full Program for the Conference can be found on the PDSA website.

It will be a great opportunity, if you have a chance to go.

We are particularly interested in this presentation by Martin L. Rossman titled, If You Can Worry Yourself Sick, You May Be Able to Imagine Yourself Well?  Dr Martin Rossman is a pioneer in mind-body medicine. He is the founder of The Healing Mind, the co-founder of the Academy for Guided Imagery, a Clinical Faculty member at the University of California San Francisco Medical School, and an advisory board member of Dr. Andrew Weil’s Integrative Medicine Program at the University of Arizona. 

For the Complete List of Speakers who will be attending the Conference in 2014 Click Here. 

Registration

ITP conference 2014I believe there is still time for you to register if you are going to be in the area.  If you would like to Register for this years Conference simply follow the link.  

If you have any questions or require assistance while completing the registration form, please contact the PDSA office  at (301) 770-6636 or (877) 528-3538 or via email at pdsa@pdsa.org.

 

 

 

Meg Louise

In Post Image

Welcome to Meg's Story

We like to ask all sorts of questions here, from the diagnosis story, to how patients with ITP sleep.  How they deal with stress and how they feel when their platelets are falling, appetite, mood and how their life has changed since ITP – Funniest or worst injury and how they manage ‘being sick’…  Every ITP story is different.  Enjoy.

 A little bit about me…

At the time when I was diagnosed I was working in hospitality in Sydney.  Since then I have studied, become an Art Teacher, taught in High Schools, left teaching and am now working as a Freelance and Creative writer.  (See my very messy office above)  I now live with my partner on the south coast of NSW.

I was diagnosed… 
Screen shot 2014-04-04 at 8.56.02 PM
During a trip to NZ in 2010

With itp in January 2008, after I came home to Sydney from a three month trip over sea.  Long before I was diagnosed I knew there was something wrong with me.  People would comment on bruises on my arms and say that I looked and seemed quite tired.  A retired nurse was particularly persistent that I go to a doctor but I did not want anyone telling me I couldn’t travel.  I had waited and saved for so long to go around the world, that I thought – ‘What ever is wrong, I will deal with it when I get home.’ 

I was so lucky that nothing went wrong while I was traveling.  In Sydney I went to my doctor for a blood test to see if I was low in iron or something.  When the results were back he called me at home and sent me straight to emergency.  I was so scared.   I was admitted to the hematology ward and spent a sleepless night looking out the window.  

I was initially treated with 75 milligrams of Prednisone and responded really well to the treatment.  However, over 4 years my tolerance to the drug has increased and I am less and less responsive to the therapy.  

How I was feeling before I was diagnosed…

I slept a lot.  I have always slept a lot – But this was even more than usual.  I was very tired all the time and when I look back on it, I was also pretty sad.  I thought perhaps it was just the come down after an amazing trip.  I probably ignored a lot of my symptoms for a long time because deep down I knew that something was wrong and I was not ready for the bad news.

When my platelets drop…

Everything else in my life tends to drop too.  I am not always right about what my count will be, but often when I am sad, sluggish, stressed or tired – I tend to have a pretty low count.  When I am very low, I feel it in my wrists and neck, my body seems to ache a lot.  I don’t recover well from exercise, I want to stay in bed all day and I struggle to motivate myself.  

When I have the Flu...

My platelets are quite good!   I am not sure if this is true or not, but I think when I have an actual illness to fight, my platelets are given a reprieve for a few days.  As I write this I have a mild cold and my platelet count is up over 50!  

Stress is…

A hard one.  I wonder which comes first – The Stress or The Drop.

Am I stressed because my platelets are low and my body is rundown – OR – is my body rundown and my platelets low because I am stressed?  What ever it is, stress is defiantly something that I need to learn how to manage better.  Lots of people tell me that I should learn how to meditate but personally I find it boring (I know that is not what you’re meant to say).   I prefer dancing as a means to clear and focus my mind & body.  Also I love taking Rescue Remedy – I have a whole bottle ready for my wedding day.  

Heat…

I am always the last person to put on a jumper.  Lots of my friends always comment that I never get cold.  I need ice in my water and keep my coffee in the fridge.

When I went to see a Chinese Herbalist in Sydney, he told me that I have a fire within me and that I need to manage the heat in my body before I could start to heal.  I wondered if he was talking about my immune system being in over drive?  He was right though, I am always hot.

Sleep…

I am not a morning person.  If I could, I would stay up all night, and never be out of bed before 10 am.  When I do get up before 10, I find that I don’t ever get much done till at least 11 am anyway.  I sleep very heavily and rarely have trouble falling to sleep.  I think I also sleep quite hot, which leads to very vivid and often violent dreams.  I tend to need about 9 to 10 hours a night.  

Exercise…

I often take a little while to recover from exercise.  Ballet, Yoga and Walking are my favourite at the moment but as winter comes, I like to read and drink coffee on my exercise bike in the lounge room.  Doing lots of different types of exercise is the best way I have found, to make sure I don’t over work one part of my body.

Using a foam roller and rolling has helped a lot – My partner introduced rolling into our home after his physio recommended it.  It is like giving yourself a massage.

Appetite…

I don’t think I have much to contribute here, my appetite has always been pretty constant and doesn’t seem to change depending on my platelet count.

Moods…

My moods are strange – I once read that blood platelets are connected to serotonin

Serotonin secreted from the enterochromaffin cells eventually finds its way out of tissues into the blood. There, it is actively taken up by blood platelets, which store it. When the platelets bind to a clot, they release serotonin, where it serves as a vasoconstrictor and helps to regulate hemostasis and blood clotting. Serotonin also is a growth factor for some types of cells, which may give it a role in wound healing. 

This would make sense that my platelets and moods are linked.  As my platelets fall, everything else tends to get very difficult and sadder and less joyful. 

How has my life changed since my diagnosis?

Immediately after I was diagnosed everything changed in my life.  I think that has settled down now.  

I panicked when I first found out I had ITP and thought that I would never be able to travel again.  I was scared of busy stair cases and thought I would die crossing the road.  I was scared of heaps of stuff and thought I had to tell every one about my disorder. 

Thailand 2013
Thailand 2013

I have since found a travel insurer who will cover me, despite being on immune suppressants and have continued to travel with ITP.  

I am certainly more careful with myself, healthier and have a far better lifestyle than I used too (though I still drink and stay out too late).   The one big change that ITP has made for me, is about future plans and perhaps how this will complicate having children – when and if we are ready.

I also included blood donations on our wedding registry – Which I probably would not have done before having ITP. 

Worst / Funniest injury…

A few times since I was diagnosed I have convinced myself that I was going to die.  The first was after my first plane flight since being diagnosed.  I had a pain in my leg and lay awake thinking I had a DVT and was about to have a stroke.  Another time, after hitting the back of my skull against the open freezer door.  I told my partner that my time had come and lay down on the carpet in the lounge room to slowly die.  He laughed, gave me a bag of peas and we played scrabble till the pain went away – I did not die…  

Dealing with ‘being sick’…

As much as possible, I try and approach it with humour and joy.  Leona Lewis’ “Bleeding in Love” is my theme song and lots of people now joke with me about where I get all my bruises from.  

I am still open to a cure and expect that this time will end – I have not accepted ‘sickness’ as a perminant state in my life.  Hopefully it will be gone before I try and have children.  I have a medi alert in my phone in case of an emergency – it has all my information in it and emergency contact numbers and details of my medications.   

A little more… 

The other day I saw a surfer with a tattoo on his chest that said -Type 2 Diabetes.  I realised as I was looking at that tattoo, that I still believe that ITP is not a forever disorder, and that we dont need to get it tattooed onto our bodies.

You can contribute your story HERE – We would love to hear from you. 

 

Traveling Overseas with ITP

More Airports

Feature image from ITPANDME

Can you travel Overseas with ITP?

The simple answer is – Yes.

Travelling is one of life’s greatest pleasures.  Seeing new places can be eye-opening and awe-inspiring.  Lots of people I have heard from over the last few years have shared with me their worries and concerns about traveling with ITP.  I would like to register my response, formally.

I say yes to traveling.  I say yes to heading overseas with ITP, with your medications and your worries and your concerns and your letters from your travel insurance agent.  I am writing this article from a hotel room in Phuket, Thailand.

My partner and I are spending the next three weeks exploring Thailand.  Today I saw my first real life Elephant.

At my last blood count, I was just under 40.  I asked my Haematologist if I could still go to Thailand, and she said yes – She said, ‘Be careful but yes’.  Having ITP means that I take extra care to prepare for my trip.  It also means that I make different choices than I would have six years ago.  I don’t participate in ANY adventure activities while overseas – I don’t travel on the back of scooters, and I am very conscious of where and when I walk around on the road.

Here is my Check List, that made my trip possible

As always, the details will depend on your own doctor’s advice.

  • Take More Than Enough Medication: Make sure you have enough medicine to cover your entire trip, and then another month.  Never pack exactly the right amount on your overseas holiday.  You just never know what is going to happen with the weather or the planes.  There are so many factors that could prolong your return trip. (One being that you want to stay on)  So, if you are taking daily medication, make sure you have at least 3 or 4 extra days’ worth of medication (I say as much as possible).
  • Separate Your Medicine Into Two Different Bags:  Last night at the Phuket International Airport, my partner and I were waiting with a new friend for his bag to come off the plane.  Everyone else’s bags had arrived, and all we needed was one more – Jamie’s Bag.  It never came.  It might sound obvious to you, but it’s funny how many people travel with everything in one bag.  I always carry medication in my hiking pack and medication in my carry on.  I like to keep it with me in transit and try to keep it protected from temperature and moisture changes.  If my bag got lost underneath… no big deal. I also keep an emergency bottle in my partners bag just in case.
  • Inform Your Doctor: Tell your doctor.  Tell your Doctor.  Tell your Doctor.  Nobody on earth should travel overseas without first consulting their doctor.  Doctors know heaps or great stuff, like what vaccinations you will need, whether you can drink the water or how important repellent is for protection against Dengue Fever.  I travel with a letter from my Doctor at all times, and his phone number on my companions person.
  • Take a Letter Explaining Your Condition:  Take a letter from your Haematologist with you. The letter should identify you by name, summaries your medical history so that a layperson can understand it, identify any medications you are taking and have contact details of whom to contact.
  • Locate Medical Centres: Make sure you know where you could go for help in case something happens. Find out where the nearest hospitals are to your hotel. Also ask your doctor if they recommend any particular hospital or clinic – a personal reference is often a good thing to trust.
  • Ask About Reciprocal Health Care: Most countries are friendly with at least a few other countries.  I know that Australia has a few reciprocal health care arrangements with other countries, I think all the Commonwealth countries at least.
  • Register Your Trip: With friends and family – and also a government, travel agency or website.

Have fun & Get in the Sun! Try not to let ITP get in the way of your travels too much – Remember to see the sights, eat the food and have an experience you’ll never forget.  Vitamin D is good for your mood and will improve calcium absorption in your bones, so get into the water and under the sunshine.  Tanning also helps to mask and cover the bruises on your legs and knees.

Further Reading

FEAR OF TRAVELING WITH ITP and how to overcome it.

TRAVEL INSURANCE for people with ITP

Also – google a few forums where people are chatting and asking questions about traveling with ITP. I simply googled ‘Traveling with ITP?’ and lots of information came up.  There are lots of people out there talking about this right now.

Travel Insurance for people with ITP

traveling with ITP, ITP and travel insurance, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp, blood disorder

Can I get Travel Insurance if I have ITP?

While planning an overseas trip, I became confused about what my options where for travel insurance.  Can I get travel insurance while I have ITP?

I tried to read through the dense documentation on the insurance website, but that just made me more confused.  There was no information within the documentation about problems with a low platelet count, however, the insurance company seemed to be very concerned about my taking of immune suppressants.

My understanding was that I would not be insured for anything while traveling – Not because I had ITP but because I was taking immune suppressing steroids.

With that reasoning, I could jus stop taking my medication.  I could get travel insurance if I was not being medicated?  Sounds stupid! I am safer on the drugs (apparently)  Should I cancel my trip?

I called the insurance company and spoke to a real person about everything that was confusing me.  I learnt that with my insurance company ‘Teachers Health’, and many others, I would be covered for things such as accidents, car crashes and trees falling on my head.  I would be covered if my bag was stolen or I was mugged in the street.

I would not be covered for any medical expenses directly attributed to having ITP.  It was amazing to just call the company and explain yourself.  It was wonderful to have a real person explain all the details back to me.

‘Will I be covered for a broken leg, even if having ITP will make my broken legs a life threatening injury?’

‘Yes,’ he said.

‘Will I be covered for replacement medication if my bags are stolen, even if I only need to have the medication because I have ITP in the first place?’

‘Yes,’ he said.

‘Will I be covered for spontaneous internal bleeding for no apparent reason?’

No.

The most important thing, he said, was that I was telling the insurance company about my medical condition before I left.  I was registering with them that I had ITP.  He said that if I were to lie about having ITP, then my whole insurance policy would be void.

That means – If I did not tell my insurance company I had ITP before I left and I traveled to Indonesia and had my bag stolen with all my money, passport and identification – Boom – Void!!  I would have received nothing!  Cause I was a liar, and they hate liars.

Will my Medication be Covered while I Travel?

I was surprised and pleased to find out that any medication I needed to take on the trip would be covered by my insurance because it falls under the category of luggage/personal items/possessions.  So if I loose my script or my pills while I am over seas, my travel insurance will cover the cost to replace it in whichever country I am in.  Wonderful.

The best advice when looking for travel insurance that I can give, is to call them and talk to a person.  Offer each insurance company a few examples of potential problems and see what they say.  Since booking my trip, I have had great coverage and service from the Teachers Health Insurance Provider.

Has anyone had more  luck with Travel Insurance from Australia?

Keep reading about TRAVELING WITH ITP.  If you are super worried then you should read about how to manage FEAR WHILE TRAVELING with ITP.