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 🙂

75 days + 250 dialysis fluid bags + 1 new fiancé +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.

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.

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.

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

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.

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.

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.

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.

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.

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!

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!

When in Rome…!!

Hello from Roma! The past week has been very busy and I am back to carrying my dialysis as we dropped the car off in Rome a few days ago- that 6 weeks flew by!

After Bologna we drove to Tuscany. What an amazing place. Exactly what we imagined but more beautiful. We stayed in Siena, a medieval town and did day trips from there. A day in Florence, and a few days exploring the little villages of Tuscany and taking in the views with a few cheeky stops at vineyards!

We are now in Rome and leave tomorrow for Naples. Rome is one of our favourite cities we have been to, so many ancient wonders! Thanks to those that gave me tips, we have been to The Pantheon, Vatican, Colosseum, Forum. Two friends of ours from London have been with us for the weekend which has been lovely. Apart from the sites we also went to an Opera, some awesome pizza/pasta restaurants and a few nice cocktail bars- including cocktails from the top of the Sofitel which would be one of the best views in town (and tapas with your drinks!). 

I am once again travelling without a car and am carrying the last 8 days fluid on me. 3 massive, heavy bags full. My hotel was very suspicious when we arrived as to what was in the bags. One of them was a big long bag and i think they thought it was a body! The manager came and questioned me after the porter helped me carry them to my room. I tired to explain that it was dialysis fluid (it would have been handy to have it written down as per my last update tip). Finally he understood what it was and it turns out his Father is on hemodialysis. Small world! He has even offered to hold some of our luggage for us as we go to Naples for the last 4 days and then to London on Saturday via Rome.

Looking forward to heading down south to the home of Pizza and hopefully getting to the Amalfi coast. We cannot believe that in 2 weeks our big adventure will be over!