This question always comes up I think.
Again every one is different and will have situations that will stop them doing certain things or going certain places.
AT times we have to make that choice is it correct for us or is it safe for us to be going to certain place. I think when on dialysis the main thing is can i do dialysis, will i be open to high risk of infection.
I say this don’t let dialysis stop you doing certain things, yes it has to come first and be your top priority. You need to watch what you eat , drink etc..
Again only you can make those choices with the help of Hospital, but end of the day you have to choose what to eat or drink. Dialysis is a gift but we must remember never to abuse it , as its doing us a huge help, so why not let us help it as well.
Making decisions in life is hard enough but when on dialysis it can go either way, we can be strong and positive and do things that we never thought of doing.
Yes Dialysis does tire me out and when you are on end stage kidney failure like me then yo uare going to be tired, that is okay its normal.
How have i try to stay positive. I goto work, i work 30-40 hours a week, but i try to keep it to 35 hours where possible.
This helps me keep active mentally and also keeps me busy. Do discuss this with your employers, part time work is good thing or doing volunteer work , charity work, something to get you out and about. I can assure this will help you alot.
There are days when i am so exhausted that its hard to setup the Dialysis machine and and get connected to it. The worst part is when I make mistake its can really frustrate me as I know I have to start all over again, especially when my body is going down.
Being on dialysis does not mean you cannot go on holiday or travel, there is lots of opportunites of doing this but please do seek your Clinic / Docotor advise. There is lot of planning that goes into especially when going abroad.
Question what do I do when i want to go somewhere warm and nice, I am trying to travel to places I never been whilst I am Alive and my health allows me.
First thing is I look at what country I want to go, and speak to my clinic and understand the situation and can my Baxter supplier help and delivery my fluids to that location of country and does the clinic think its safe for me to go there and what medicines will i need etc.. Also we have to be realistic do we want to be in a high risk area , will we cope with that, dont be afraid. I am very cautious about those stuff.
Then I starto look for hotels and now I Generally go for 4 to 5 star hotel. Never book direct on the website.
The first thing I do is email 2 or 3 hotels I like with the following question if your on PD like me.
1: Can you accept fluids via my hospital team
2: Does the room have A/C
3: Does the room have movelable Tables
4: is there sockets near the bed
Also I check on reviews of the hotel which is normal.
Getting clarification on the 1st answer is always important and then you know which hotel you need. I then confirm my booking wih the hotel but note minimum 8 weeks to 12 weeks is needed with our Baxter/ Dialysis Clinic.
I would suggest to book Special Assistance with airline, it will give you the right help you need, as it is you have a disabilty. Taking the machine and lifting itself is very heavy on.
With any airline you can check your machine in and bag for your medical supplies. I always let the airline know about this and make sure.
Also get a letter from Hospital for your machine and a letter for any special meds , as they may ask at airports. Carry this letter with you.
Also if you are on the transplant list, note if you go abroad, they will want to de-activate you so you need to give your dates. also always make sure when you back you activated.
You will should then get a letter from your supplier to confrim all details and what stock they will supply normally 2 weeks before you fly. This will help you to pack what you need to take.
before you fly out it is good idea 2 -3 days before you make sure the fluids or medical supply has arrived at your chosen place.
when you are are abroad, you need to treat things like you do back at home, full safety and everything.
I say this ENJOY THE HOLIDAY. I know we still have to do dialysis but we lucky to be able to have a holiday.
life of Dialysis 