(An idea openly stolen from fellow blogger golightly )
1. Everyone tells you to make sure your case is packed for transplant. What they forget to tell you is make sure your family have cases packed too. I happily unconscious in a hospital gown whilst they telephoned various friends in an effort to gain clean clothes before they were asked to leave for hygiene purposes.
2. Waiting is hard. The hardest bit for me was feeling I couldn’t go on and realizing I had no choice; you just have to sit it out. But you’re stronger than you think and you can do it.
3. Start telling the truth. I mean when your friends ask “how are you?” instead of the automatic “I’m fine thanks” maybe tell them a few of the things going on in your head. Some people genuinely want to know, and those people are invaluable in your mission to stay sane.
4. Change your goals. So maybe you can’t do the big stuff anymore. Maybe your new goal is that next weekend you are going to leave the house and visit a relative you haven’t seen in a while. Maybe it’s to read a certain book. Small and flexible goals are so important to keep you pushing forwards.
5. It’s not over till it’s over.
6. Accept help. To me staying independent meant doing what I wanted to do for as long as possible. If that meant using a wheelchair, a carer and various other contraptions then so be it. Strength is knowing when to ask for support, not struggling on vainly without it.
7. False alarms are a hugely emotional experience. But can be positive; you know what the real thing will be like now, and are better prepared. It’s probably acceptable to buy yourself a frivolous and unnecessary treat following though.
8. After your transplant you will have to work harder than you have ever worked before. But it is worth it, a thousand and one times over.
9. When you wake up and panic that it is still hard work to breathe, do try to remember…they just cut you open and stuck brand new lungs in. Which will delay that feeling of “woooo I can breathe!” somewhat.
10. Two steps forwards one step back. Sometimes about 5 steps back. No matter how many times they tell you this is normal you won’t believe it. And no matter how much you don’t believe it it’s still true. The road to recovery is rocky and just because you have setbacks doesn’t mean you’re not doing well.
11. Oxygen tubing is less effective at delivering flow when the bedside table has rolled onto it. Same applies to suction power of chest drain tubing.
12. Hospitals are fantastic places full of people who work tirelessly to save lives. However they have hundreds of patients and there’s only one of you. Sometimes you need to speak up to make sure your voice is heard.
13. A huge amount of patients (including myself) struggle with negative emotions after the op. Don’t suffer it alone, don’t feel guilty and try to force yourself to be happy; get help.
14. Nebuliser machines are also fantastic for blowing up beach balls, lilos and other inflatable items.
15. Someone once told me your old life as a chronically sick person kaleidoscopes down so fast, you almost forget what it was like to be that ill. I didn’t believe him...it turns out he was spot on.