My Double Lung Transplant

Monday, January 17, 2011

Tea = Zombie Fuel

Today Chronic Illness reared its ugly head and said, "Today is MY day, and there's nothing you can do about it. HA HA" and so I awoke feeling like a total zombie, taking an hour and a half to pull myself out of bed and do human things.

It's days like today that i wish I could reach inside myself, pull out my defective ADA gene, and fix it to make myself feel better.

Sure, you can treat it with my injections, and other meds, and lots of tea, and keeping warm, and having lots of soup and other stuff, but it's no match for It itself. Somedays it flares up, and those days, like today, leave me feeling like a zombie who does not wish to be peeled from the couch.

I managed to get myself my tea, which I have now named Zombie Fuel, and go to work, but luckily, frigid temps were on my side and most of the dogs didn't wish to walk today anyways.

I just feel blah...can't be motivated. Everything feels like a mountain of a task. I did manage to order meds, which I've successfully put off for a good week. I'll pick them up tomorrow. I also wish to make Beer Stew for supper, but alas, the ingredients aren't in the house which means I'd have to go to No Frills to get them...which means moving. So.....yeah.

Maybe tomorrow?


Speaking of chronic illness, we had this discussion last night at supper. My sister seems to beleive that since i had my transplant, that I no longer have a chronic illness. Sometimes I think she gets confused and forgets that my former lung condition is completely separate from my underlying primary condition. My underlying primary condition - ADA SCID - is the reason why my lungs got shitty in the first place. ADA SCID is genetic - I was born with it and it's embedded in my genes. Bronchiectasis was a result of SCID, the repeated and prolonged infections, but isn't embedded in my genes. It just coated and killed my lungs, but wasn't in my genes.

Get it?

So I got a transplant and bronchiectasis (and asthma) fucked off, but the ADA SCID is still there. I used to get IVs for it, but have switched to daily injections. Any condition that needs to be treated long-term is considered chronic. This condition will never go away. If it goes untreated, it is lethal.

Ironically enough, after telling my sister what constituted a chronic illness, the discussion of gene therapy and a cure was discussed. My dad and sister are all pro 'cure' and gene therapy, even though at Sick Kids they told me that I am too old for gene therapy. Which is fine. The injections work great and 95% of the time I feel amazing, it's just the odd day where it decides to flare up and there's not a lot I can do about it but ride it out.

Would I want to be cured if I was able to be? Honestly? No. I've lived with this for 25 years. It's all I know - the ups, the downs, the stagnant-ness of it. I don't know what I would do if one day it were gone. It keeps me humble. I feel amazing 95% of the time, it's just the odd day (like once a month) where it flares up and I feel like a zombie. And I need extra zombie fuel.

That doesn't mean that I don't want a cure or beleive in gene therapy. I absolutely do. But i'm too old for it and the way i get treated is totally fine :) I think if you spoke to a lot of ppl living with chronic illness they would agree. They would feel like how they are getting by is just fine. Chronic illness is a total learning experience, and like i stated before, it keeps you humble.

So I just ride it out, take it easy, and consume more Zombie Fuel.

1 comment:

maggie said...

wow, impressive that you would not wish to cure your chronic illness.

I'm Maggie and I am waiting for a double lung transplant. I've had chronic graft vs host disease that started after a bone marrow transplant in 1990. When I get new lungs, I will still have the same bone marrow and question is, will that attack my new lungs? We're hoping that with the right combination of anti-rejection meds, then no. But if not, then I might have to go through this whole process again, which I don't. I would do anything to rid myself of my chronic disease. I feel like if I didn't I would be virtually gambling with my life. Three children and a whole life left at stake? No way, that is nothing I would bargain with.