Monday, January 26, 2009

15 Top Tips for Lung Swop Op-ers

(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 turns out he was spot on.


Holly said...

Ah they're great! Love the one about blowing up beach balls with the neb machine - totally want to try that!xxx

Anonymous said...

Nice tips :)

Number 11 also applies when Grandma is standing on the tubing :p

Tori said...

lol no 14 I used to blow up inflatable beds with my nebuliser :)

Emmie said...

Fantastic idea! However I think you may have overlooked a few of the most important ones...

- Eat sweetiebobbles on a regular basis

- tie pink fairy lights around your hospital bed

- get a friend to bring you posh afternoon tea in hospital (with slightly dippy husband of said friend carrying a huge carving knife sticking out of a bag to cut cake and narrowly avoiding being arrested for carrying an offensive weapon)

- avoid licking the bottom of Haribo tubs and getting them welded to your head - this does not improve flow of oxygen to the lungs

- wear funky socks

- have regular visits from small white fluffy dogs

- occasionally do something unusual like creating a giant liquorice allsort or a super-sized pink sugar will keep people on their toes



Jac said...

Great idea :-) The one about family packing bags is really important too!

...oh and everyone should pack straws. Very useful when can't move much and can also be used as stirrers for all the post tx potions they bring you!

jac xx

Emmie said...

I think you should post these on Intoto with Holly's fab tips (and perhaps a similar thing from Molly or Strawbz) under a special "Top Tips for Transplant Patients" heading! They are fab x