Sleepless nights.  I’ve had a lot of those lately.

I just have so many things going through my head that I often find it difficult to sleep.  The end of my college career is drawing near, which means it’ll be time to start job searching.  In fact, as I wait to go back to work now that my hip is getting better, I’ve been looking at the job postings at my work…basically just to see what’s out there.

I’m afraid that I won’t be able to keep up with a full time job.  I’m afraid that I’ll get too tired, or I’ll get sick..or the chore of doing dialysis all the time coupled with going to work will zap the energy out of me.  I’m quite lucky in that I have a wonderful and supportive family who helps me out a lot.  But eventually..I imagine that I’m going to have to get to a point where I’m self sufficient. That scares me.

But, my thoughts that have been causing me these sleepless nights go even deeper than just my future career.  First and foremost…it’s my health.  The transplant team is still in talks with my oncologist in regards to my potential transplant.  The transplant nephrologist has emailed my oncologist a couple of times but she has not answered him yet.  I imagine she is quite backlogged as she was away for a week or two.  Luckily I’m seeing her this week for a follow up appointment so I’ll be able to talk to her then.

I guess one of the main concerns the transplant team has is the potential repercussions of the transplant medication I’ll have to take after I receive a kidney.  Some of those medications could possibly trigger or “activate” my currently “smoldering” myeloma.  If it does…then that’s a whole new set of problems that I’d have to deal with.

So what do I do?  Forget about a transplant altogether because of the slightly increased risk of triggering these myeloma symptoms? If I do that…I’m just being honest here…I’d be pretty miserable.  Don’t get me wrong- in spite of the work that goes into setting up, stripping, and maintaining a dialysis machine, it’s much better to me than the alternative, which is going to the hospital for treatment.  I don’t think I can do that anymore. At the same time, I feel like I have a ball and chain attached to my ankle.

I’ve missed out on a lot in terms of vacationing with friends and such because of dialysis.  The last thing I want to do is inconvenience my friends by having them drive me to dialysis units in different countries.  What’s more…It can be scary going to outside dialysis units.  Every unit has their own way of doing things…and their ways may not be something that I’m used to. And what’s more…whenever I do “in-centre” dialysis, I’m pretty drained afterwards.  I’d have to go back to the hotel, eat, and take a nap.  I don’t want to put that on anyone.  Not to mention..dialysis in a different country is pretty expensive.  When I went to Florida once…I got a “deal”.  I paid $300 per dialysis session. The actual cost was more than $600 USD per dialysis session.  OHIP only reimburses $210 CAD.  It’s a huge cost to bare in my opinion.

In spite of the risk…having a kidney transplant is something that I want.  I’ve young…and I kind of feel like I’ve lost a part of me in terms of the carefree person I used to be.  Bike riding for hours on end throughout the city with my brother and his friends or me and my friends…as I mentioned before, hitting up vacation spots…I’ve never been able to experience one of those “let’s just go to Montreal for the weekend” or “let’s go to the States for the weekend to shop” adventures…

I just want everything to be…”right”, you know? It’s been so long that I’m not even sure exactly what that is.  All I know is that my “right” does not include being hooked up to a dialysis machine for 40 hours a week.

I don’t even know if what I’m writing is making sense anymore, so I think I’m going to lie down and try to get some shut eye.  I hope I can.

2 comments on “Sleepless Nights

  1. I know exactly what you mean…I worry about the exact same things. Especially about being self sufficient & if I'll be able to keep up with a “real” job. I too worry about getting too tired, or sick. But I'm still eager to get out on my own and start living like a person my age should be living. I feel like I'm missing out on a lot and wasting time in my life that I'll regret later.

    I also worry about health but I try not to bc it makes me feel depressed. I didn't like in center dialysis either. It's still annoying, but I agree that doing it at home is still better. I think it's crazy that they make you pay per treatment for dialysis. Do they still make you pay if you stay in Canada? Don't look at it like inconveniencing your friends. It's not an inconvenience when they have to stop and get something to eat! Why? Because food is a necessity. Dialysis is a necessity for you so if they're, smart they'll understand. I know it's easier said than done but just think about it.


  2. Thanks for your words of wisdom,Shay!

    Nah, I only have to pay for in-centre treatment outside of Canada. In Florida they wanted me to pay almost 600 USD but I managed to talk them down to 200 the first time, 300 the second time. In England I paid 200pounds/treatment. gah!


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