travellingondialysis

A fine WordPress.com site


12 Comments

A kidney is on it’s way!

Hi all,

Just thought I would inform you all that over the past month or so my beautiful sister has been tested and is perfect match (6/6) and will be proceeding with donating her kidney to me. As a family unit, we all so trilled about this news. After receiving this news, I got so excited that i had to leave work and hit the golf course for some thinking time.

I am so grateful for my sister to be doing what is about to do. No more planning the hours of dialysis on the machine with my life. No more Baxter boxes in my bedroom. No more excessive rubbish to carry out every Sunday. No more tenckhoff. No more a lot of other stuff!

I know this doesn’t put me in the clear and I am sure there will be other complications in the future however when you live with a chronic illness like kidney disease – you learn to celebrate the good days!

Peace 🙂

Advertisements

UK Wedding and St Andrews Golf Course

5 Comments

Hi guys, thought I would update you on my newest adventure travelling over to the UK for one my mate’s wedding. A brilliant experience spanning over 2 weeks flying into London via China and spending most of the time in Edinburgh, Scotland. I found this travelling experience a lot harder than previous travels and think this will be my last international holiday before getting a kidney. The flight over wasn’t great as I retained a lot of water and my feet were quite sore when I got into London. I would recommend really watching the amount of liquid been drunk during flight times.

The pictures attached are of the wedding and a few shots during the holiday. It was one of the best, unplanned holiday that i have ever been on. Edinburgh is simply amazing! So beautiful and every street in Edinburgh is like a post card! I organised a drop of Baxter dialysis bags in London and then took a train with 2 big suit case bags with the dialysis fluid in it. The London underground tube were not designed for people travelling with 100 kg of dialysis fluid – this part of the journey was tough but a good experience none the less.

Another great experience for someone travelling on dialysis. I think the illness is making it harder and harder to travel but hopefully I’ll get a kidney soon and travelling again will be seamless and stress free.

London Eye

Dialysing in the bathroom

Dialysing in the bathroom

The Old Course.

The Old Course.

Standing on Swilcan Bridge

Standing on Swilcan Bridge

Walking around Killikenny

Walking around Killikenny

Lisa with a few light bags

Lisa with a few light bags

Dialysing during the wedding speeches

Dialysing during the wedding speeches

Heating the bags

Heating the bags

Lisa's dress at the wedding

Lisa’s dress at the wedding

Edinburgh Castle

Edinburgh Castle

Essex Castle

Essex Castle

 


19 Comments

75 days + 250 dialysis fluid bags + 1 new fiancĂ© +millions of memories = trip of a lifetime!!!

As the saying goes ‘time flys when you’re having fun!’, we are now home in Melbourne after nearly 3months away in Europe – travelling on dialysis.

image

Thank you to everyone who has been reading the blog and special thanks to the fellow dialysis patients and nurses for their contribution. I hope my blog will inspire people on dialysis and with medical conditions that anything is possible with proper planning and that a serious medical condition does not mean you cannot do the things you want to do.

I’d like to finish my blog by putting together my top tips for travelling on dialysis. Please continue to send through your stories/ questions/ comments despite my trip being over.

Travel Tips

1. Make sure your doctors and nurses are fully briefed on your travel plans before you leave and that you have medical documentation regarding your condition/medication/treatment if something should happen whilst you are away. Some airlines will also require medical clearance forms to be completed weeks in advance of your air travel (I needed to do these for Qantas). Best to check with your airline when booking tickets to prevent any issues.

photo-5

2. I had all my dialysis fluid bags delivered to my various collection points around Europe before I left Australia by Baxter. This way I was sure they had been delivered and there would be no issues once I left. In Australia Baxter require at least 3 months notice for overseas deliveries and cannot deliver to all countries- best to speak to Baxter if you are thinking of travelling to get advice.

imageimage

3. Always carry all your medication on you as hand luggage and keep in original boxes with  medication details. Also carry your medical documents.

image

4. I used door handles/an S hook, a coat hanger on a curtain rail and even took pictures off walls to use the hook to hang my dialysis bags on. Other people have also recommended using a camera tripod if you have one.

imageimage

5. I carried a roll of garbage bags with me to put my medical waste in (used bags etc). This was very handy as hotel bins are small!

6. Hiring a car is a must if you are traveling around different places as carrying the dialysis is very heavy and bulky. We hired a roof capsule which was perfect for storing bags and held 3 weeks worth of fluid. Taking the bags out of the boxes is also helpful to fit in the car.

image

7. When we were traveling without the car we carried the dialysis bags in big bags with wheels. They were very heavy and hard to manage so we needed to get taxi’s to and from airports/stations. This can be expensive and needs to be worked into your travel budget.

imageimage

8. Excess baggage will most likely be required as most airlines allow 1 x 23kg bag per passenger. Make sure you organise this in advance and allow plenty of time at the airport. Despite many phone calls to the airline before I left confirming my excess baggage I had issues on every flight with the ground staff being unaware. It all was fine after explaining the situation to the customer desk but this took extra time.

9. I travelled with a Baxter heating panel to heat my bags. This was very easy and small to carry. Make sure you have adaptors for each of the countries you are visiting. I always had 2 bags on the heater at a time.

image

10. I had a mobile phone and Skype (calls made over the Internet) on me whilst travelling. This is a must if you have a medical condition. I used this many times to call the hospital back home when I had concerns.

11. I went into a dialysis unit in the UK as I forgot my mini caps on an overnight trip and they gave me some. If you run into issues search for a dialysis unit in the area- the first hospital I went to did not have a PD unit and so I had to go elsewhere.

image

12. This tip is something I wish I had done. I suggest have written down in the languages of all the countries you are visiting, a small blurb about your condition- what your tube is (I was searched at an airport and nearly taken into an interview because I could not explain what the tube was coming out of my stomach in Prague)/ what the fluid is/ what the heating panel is etc. This is helpful to show hotels/ airports or anyone who may question your fluid. It must have looked strange to the hotel cleaners when they saw it heating!

13. Wet ones or antibacterial wipes were handy to wipe down surfaces before dialysing and also generally for washing hands before meals etc. If you are like me with a weaken immune system this is especially important!

14. If you will be doing any activities outside your usual best to check with your nurse. I went horse riding in Spain and was told to go riding with no fluid in me as it could increase chance of getting a hernia if I had my usual 2LT inside me. I’m glad I checked this first!

image

Happy travels! Be sure to let me and other PD patients know how you are going by adding onto this blog!

Dialysis to live, don’t live to do dialysis!

imageimageimage

Cooking up a ‘real breakfast’ dialysis style and tips for dialysis ‘on the move’!

8 Comments

Cooking up a 'real breakfast' dialysis style and tips for dialysis 'on the move'!

After months of bread with cheese and ham for breakfast- the done thing through Europe, at least in budget hotels! We were excited for a cook up of eggs and bacon once we got back to London.

Running late I cooked up breakfast whilst doing dialysis! (I connected myself up in a clean environment first of course!).

Kitchen cupboards/ door handles/ taking pictures off walls and using the nail have all been useful to hang my bags on if you do not have anything else to hang them on. I did have an ‘S’ hook at the start that I was hanging onto curtain rails to do my bags, however I lost this somewhere early on in the trip.

Another thing I have found useful is to carry wet ones (antibacterial wipes) to wipe down surfaces before I dialyse. These are easy to carry and came in useful generally whilst travelling to wipe hands before food etc. At home I use paper towel and antibacterial spray however this was too bulky to carry and needs to be checked onto flights due to fulid restrictions.

Skating fun in London Town! Plus tips for air travel with medical condition.

4 Comments

Skating fun in London Town! Plus tips for air travel with medical condition.

Back in London after our 8 weeks travelling Europe.

We flew out of Rome to London on Saturday. Despite many phone calls to organise everything before we left and confirmation from British Airways that everything was ok for me to fly and have excess baggage once we got to the airport no one knew anything about it!
Luckily we anticipated this would happen and got to the airport an hour earlier than needed.

My advice if you are travelling with a medical condition is to give ample time at airports and do not assume that because you have had the ok from your travel agent or airline call centre that everything is ok! We had the same issue 8 weeks ago when leaving London for Prague. Everything was sorted after 30minuted at the airline desk and we were allowed to take our excess baggage (needed for dialysis heating pad, dressings, hand washes which cannot come on broad.)

Before I left I had medical clearance forms filled out for Qantas by my doctors, as this was a requirement. British airways told me this was not required to fly with them. Once I got to airport and they looked at my information and saw that Qantas requested medical clearance to fly- they decided they wanted the same thing! Not something I can just whip up from Rome airport with 2 hours until I fly! I showed them a letter I had on me from Monash and I was allowed on the flight.

Very good to be back in London- we keep going to say yes and thank you in Italian as habit, we are also getting quite confused crossing the road as we are back to looking the way we do at home before crossing!!!

Yesterday we went ice skating in London, without falling over which was a good result! 4 days left here and looking forward to some chill out time as we have already done the tourist things we wanted to do.

I had some dialysis left in London where we are staying at Lisa’s cousins (from when I was here at the start of the trip) so thankfully no more carrying around liquid!

Everything is buzzing with Christmas spirit in London, the xmas street lights are amazing. Also different to be in a cold climate at this time of year! Very fun!

The home of pizza

1 Comment

The home of pizza

After quite a number of days in Rome we have headed south to Naples where we have spent four days eating pizza, visiting the Amalfi coast and Pompei. The photo shows me in the ruins of Pompei which was distoryed by Mt Vesuvius in 79AD. This once vibrant city was covered by ash and volcanic dust for centuries and has been kept untouched for tourists like us to visit. This for me was probably the most amazing tourist attractions that I have visited on this trip. A must see for anyone that likes Indiana Jones.

We also went to the Amalfi Coast however the weather was quite inclement so we spent most the day in the bus. We were going to spend a night in either Sorrento or Positano but it was just too hard with all the fluid to move so we decided to simply bus there and back in one day.

We will go back to Rome for one more day and then fly to London to catch up with a friends before heading back to oz.