So not to be a downer, but the last few months of dialysis haven’t been going great.
We have a measure called Kt/V that is used to determine how effective my dialysis is going, and unfortunately the last few times I’ve failed mine. This has resulted in tweaking my prescription (e.g. the amount of dialysis that I do), however we’ve hit some roadblocks and I’m not able to make any more changes until after a surgery that I’m currently working on for January…
…so instead, Monday morning I get to do another surgery to install a separate catheter to enable me to switch to hemodialysis in the interim.
Which is something that I’ve honestly been fearing for quite a while because I hate needles and blood and the whole process of taking the blood out of my body, cleaning it, and putting it back just creeps me out something fierce!
Yet I’m trying to look at it as a means to an end because I’m going to have to temporarily do it for a month after my January surgery anyways while I heal, so really it’s only a couple of extra weeks and then after that, I should be able to go back to peritoneal dialysis unless I have a living donor and we can do my transplant. Which is a whole separate ball of anxiety with the concern about possibly removing my old and gigantic kidneys at the same time, even though that’s really the end goal of this all.
This week has felt like a lot with appointments just about every day – Thursday I had three in a row! – yet it could pale in comparison to next year if I end up with one surgery after another plus the months of follow-up that come with a full-blown kidney transplant. Still, it’ll be worth it in the end to have some semblance of a life back again – I’ve really missed things like swimming with the kids and being able to do things in general without them leaving me winded and exhausted entirely too early.
Seriously, I get winded just taking out the garbage right now because my lungs have limited room to work thanks to how big my kidneys have gotten, so something’s going to have to give if they expect to stuff another kidney inside of me!
Admittedly it’s been a rough couple of months, especially during Christmastime because I love this time of year and want to do as much holiday stuff as possible. Our decorations this year were pretty much limited to a wreath on the door and an inflatable in the front yard, and even that had me dizzy to the point of having to sit down while I was staking it down. I did take Christopher and David to look at lights in Lakeland the other day, which was a lot of walking but probably good exercise for me! Other things like baking cookies and visiting theme parks, I’ll have to forego this year because I simply don’t have the energy for them, so I’m trying to make my peace with that and tell myself that next year will be different…
To that effect, I’ve also started thinking about how I want my life to change after transplant – namely being more active and taking better care of myself through diet and exercise. It’s hard knowing that somebody is getting up at 4:30am to go to the gym to try and be an organ donor for me without saying that I need to do better myself to make all of that sacrifice worthwhile! And part of me misses it as a good stress reliever, too, so that would be a nice change. It’s not like I’ll be able to do much for a while anyways because especially if they do a full nephrectomy (remove both kidneys), that’s a BIG abdominal cut that’s going to take months to heal, but looking ahead to the future is a big part of it, too.
So that’s where I’m at as of now. I’ve done PD for nearly twelve months and at its best, I felt probably 90% and managed to get quite a bit done. Unfortunately, that was back around April – June and it’s been downhill since summertime, so I can’t say that it’s not time for a change. Which is scary, but dying of kidney failure is even scarier, so I’ll suck it up and push through the best I can.
Like I told the social worker with the transplant clinic the other day when she asked me during my interview why I wanted a kidney transplant, I still have a lot of life that I want to live, and I want to see my kids grow up and spend time traveling and exploring with my wife, because I’m nowhere near ready to die yet.
And missing out on all of that is way scarier than any needle or sign of blood with ever be.