2. Alcogel is your best friend. After clinging on for dear life on the tube at rush hour, a little squirt of alcohol gel on to your hands stops the guy next to you with a stinking cold ending up destroying your immune system.
3. Avoid at all costs wearing heavy belts or jeans whilst doing the pre-dialysis weigh in. Or if you do, remember to take that in to account when working out your 'wet weight'*. I lost count of the amount of times where this slipped my mind and I would end up taking way to much fluid off and not being able to move without fainting after dialysis. Not much fun.
4. Bras are for tucking in your permacath tube. Obviously.
3. Avoid at all costs wearing heavy belts or jeans whilst doing the pre-dialysis weigh in. Or if you do, remember to take that in to account when working out your 'wet weight'*. I lost count of the amount of times where this slipped my mind and I would end up taking way to much fluid off and not being able to move without fainting after dialysis. Not much fun.
5. APD machines are awesome for heating up your clean underware for the next day. Toasty pants are the best.
6. Cathater bags and chair legs should avoid meeting at all costs.
7. Never ever ever leave off the 'fragile' stickers when putting your APD machine on a plane. Clearly flight attendants throw cases on to the plane without a care in the world. In my case I reckon they jumped on it for a bit of fun too. The machines are quite hard to get hold of I found, especially when stuck on an island less than 3 miles long.
8. Again on a similar note never ever ever forget the two main componets for your APD machine whilst half way to Paris on the Eurostar. Fortuantly Baxter, the medical company who supplied all my dialysis equipment, as I soon found out, have an office in central Paris. Phew.
9. Keep a careful eye on quantities of medicine you are supposed to be consuming. Taking 8 times the recommended does of Lactolose certainly cleared up my constipation...
10. Don't listen to your renal councillor if she (constantly) tells you life will never be normal again and you will never feel well again. You will get better, you will feel normal again and you will appreciate life all the more for having gone through so much. I never saw that renal counselor again.
11. Always talk to people about how you feel. After 3 years of silence I finally started to tell poeple about my illness. I can't describe how good it felt not be carrying the burden completely myself.
12. Train someone else to be able to do your APD machine for you - then put on your nicest voice and ask them ever so nicely if they could mind, kindly, setting it up for you if you are going to be home late. I lost count of the amount of times my mum did this for me when I was living at home, it was always such a relief.
13. Don't be fooled when the hospital tell you that you only need your APD machine for doing dialysis on holiday - they forgot to mention the little fact that a 5kg transformer box was coming with me too...
6. Cathater bags and chair legs should avoid meeting at all costs.
7. Never ever ever leave off the 'fragile' stickers when putting your APD machine on a plane. Clearly flight attendants throw cases on to the plane without a care in the world. In my case I reckon they jumped on it for a bit of fun too. The machines are quite hard to get hold of I found, especially when stuck on an island less than 3 miles long.
8. Again on a similar note never ever ever forget the two main componets for your APD machine whilst half way to Paris on the Eurostar. Fortuantly Baxter, the medical company who supplied all my dialysis equipment, as I soon found out, have an office in central Paris. Phew.
9. Keep a careful eye on quantities of medicine you are supposed to be consuming. Taking 8 times the recommended does of Lactolose certainly cleared up my constipation...
10. Don't listen to your renal councillor if she (constantly) tells you life will never be normal again and you will never feel well again. You will get better, you will feel normal again and you will appreciate life all the more for having gone through so much. I never saw that renal counselor again.
11. Always talk to people about how you feel. After 3 years of silence I finally started to tell poeple about my illness. I can't describe how good it felt not be carrying the burden completely myself.
12. Train someone else to be able to do your APD machine for you - then put on your nicest voice and ask them ever so nicely if they could mind, kindly, setting it up for you if you are going to be home late. I lost count of the amount of times my mum did this for me when I was living at home, it was always such a relief.
13. Don't be fooled when the hospital tell you that you only need your APD machine for doing dialysis on holiday - they forgot to mention the little fact that a 5kg transformer box was coming with me too...
14. If when starting on hemodialysis you continue to have horrendous headaches and sickness afterwards, try turning the temperature down a degree on your machine. Worked wonders for me.
15. Take a crash course in Doctor-Patient lingo...here are some to get your started -
Uncomfortable = massively painful
A little sore = nasty bruise lasting a few days
Sharp scratch = get ready to be jabbed by big needle
Groggy = totally out of it
Gets a little noisy at night = you'll be sleeping next to our resident champion snorer
Your appointment is at 9am = your appointment is actually at 12.30pm
(disclaimer - please don't take some of these too literally! These are based on my experiences alone.)
*weight + amount of liquid consumed pre dialysis.
*weight + amount of liquid consumed pre dialysis.
Posts
4 comments:
Love this, I'm sure it will help many kidney patients! x
Fantastic stuff! You should post it on intoto too! Am thinking of nicking your idea and doing a lungs one ;)
Thanks guys!xx
I have loved reading your blog so much! Thank you for sharing your experience. I'm having my transplant soon so it's great to know what is "really" going to happen!! I hope you, Oli and Kasper are all still doing really well. Tracy xx
Post a Comment