So it’s been dead on this website for a long time. Some of that is the just the normal getting behind on updating it, but for the last six months something else has been going on. This post is to explain that, and to ask for some help.
UPDATE: This post has been updated with new information.
At the beginning of November of last year, I was diagnosed with Stage 4 chronic kidney disease – IgA nephropathy to be more specific.
To simplify things a whole bunch, it’s an auto-immune problem with my kidneys. The little filtering units in the kidneys called glomeruli are damaged by abnormal deposits of protein called ‘IgA’. These deposits have gunked up the kidney filtering units and they have progressively lost their ability to filter out the waste products in my blood. Over time, they have created scar tissue and as a result my kidney function has dropped drastically and has fluctuated somewhere in the ballpark of 20-15% the last six months. It is steadily decreasing, and eventually my kidneys will fail altogether.
Although I’m halfway through Stage 4, luckily I’m at a point where things are bad, but they aren’t as bad as they could be. I don’t feel sick, though the biggest symptom noticeable symptom I feel is fatigue. I feel tired all the time and don’t have much energy and have trouble concentrating and focusing. All the energy I do have goes into teaching, and as a result my art-making has been at an all time low the last six months. I’ve only managed to muster up a few freelance projects and almost no personal drawing. It’s been a hard lifestyle adjustment as we deal with all of the changes.
What all of this means for me is that there are only real two options: dialysis and a kidney transplant. For those of you unfamiliar with the process of dialysis, it seems like it is pretty much the worst (see UPDATE below). It basically involves me having a machine do the work that my kidneys can’t anymore to filter out the waste in my blood. This can be done by either going to a clinic a couple times a week and sitting in a chair unable to do anything but sleep for 4-5 hours, or having a catheter installed into my body and either manually or having a machine filter out a saline fluid to remove the toxins in my body or manually filling and emptying the saline fluid.
Dialysis would be only a stop-gap with the end game here being a kidney transplant. Here too, there are two main options. One is getting a kidney from someone who dies and has their organs donated and the other is a living donor, or where someone living offers to donate one of their kidneys to you. There are some drastic differences between the two. The biggest being that the average wait time in the state of Oregon for a matching kidney from a cadaver is two years. The wait time with living donor is as soon as both the donor and myself run through a series of tests to make sure there is a match and are healthy enough for the procedure.
I have been on a special, renal friendly diet the last six months that is low-protein, low-sodium, and, low-phosphorus, as well as a nice mix of drugs to counteract all of the effects my kidney failure (high blood pressure, anemia, vitamin deficiency, etc.). The hope here is that we can keep my current kidneys functioning at the level they are at for as long as we can while we get the transplant procedure moving along. Hopefully we can avoid dialysis altogether and do what is called a‘preemptive kidney transplant.
I have already started the transplant process and have the procedure greenlighted. I’m going in for my first round of tests to make sure I’m physically able to go through the procedure myself and we’re at the stage where it’s time for me to try to find a living donor. Besides informing anyone who knows me about my current situation, this is also the reason I’m writing this.
UPDATE: As of 7/2/2015 here’s the situation: I finished my work-up for my transplant at the end of April. I have been put on the transplant donation list. The average wait time in Oregon in 2 years for a cadaver donation.
In May during a monthly doctor’s appointment we found out that no matter what I was doing – my diet, upping medicine, etc. – wasn’t doing anything to keep my kidneys going. They’re just that stubborn. We decided it was time for me to start dialysis. I had my surgery for my catheter in the middle of May and started training for manual dialysis at the beginning of June.
I could write a whole post about the process of dialysis, but I’ll probably save that for a comic or another post. The short of it is that it’s not great by any means, and we’ve had to make a lot of adjustments to our lifestyle, but in the end, it’s making me feel better so we can’t complain. I’ve gotten some of my energy and focus back, which has been a huge deal.
I finished training for the cycler machine this week. As opposed to the manual exchanges, where I exchange the fluid from my peritoneum manually four times a day, I hook up to a machine at night and it does the exchanges for me while I sleep. This has it’s own benefits and drawbacks. We’ll see how it goes.
Although the dialysis is helping me feel better, as I mentioned before, it’s only a stopgap, and is an incredible inconvenience on our day-to day lives. We’ve had to reorganize and restructure our daily life and home to accommodate this new routine. At best, the dialysis still only gives me back 10-15% of my kidney function. That means I have about 20-25% kidney function total on dialysis. The transplant is still the endgame.
As someone who has a hard time asking for help at the grocery store, this is really difficult for me to do. I try to be as self-sufficient as I can be, but this is a situation where I will need the help of someone else. Some of my friends and family have offered in passing that they would donate for me, and I really appreciate it. But so as to not have to put pressure on anyone and follow up by asking them. ‘Hey, remember when you said you would donate your kidney to me? Well, were you serious? Because I could use one now!’ I’ve decided to write this post and provide the information and share with anyone. That way if someone is interested, they can follow up themselves and not have to be put on the spot.
There’s so much information about the kidney transplant that I can’t fit it all here, but I will leave the links to the information at Legacy Good Samaritan Hospital, which will be handling my transplant.
EDIT: I think it’s worth noting some details about the transplant process that might be worth knowing for anyone that is thinking of donating.
1.) Your work up tests and transplant operation are completely covered by my insurance. You won’t have to worry about the cost of any of that. Though if they find anything wrong with you health-wise during the work up, it won’t cover that. You can get more specific and detailed information from the links below
2.) You don’t have to be in Portland to volunteer for donation and do the work-up tests. They can arrange that with a hospital or transplant center near you for most of the tests. You will eventually need to be in Portland when the transplant actually happens.
3.) You don’t even have to be a match to me to donate! If you are healthy and willing enough to be a potential donor, they can cross-match you with someone else who is willing to donate but does match me. In fact, they just did a NINE-WAY kidney transplant in San Fransisco. See more here: http://www.businessinsider.com/9-way-kidney-transplant-in-san-francisco-2015-6
4.) You will probably miss about a month of work or school, depending on what you do. If you are worried about not being able to work, there are financial assistance that we can apply for you to help out. I will also be running some fundraising events to try to help you for your incredible generosity.
I know we all got our own problems to deal with, and like I said before, it’s hard for me to ask for help. If I could do this on my own, I would. I’m in a situation where I have to ask for help.
If you want to learn more about the donation process, you can visit this link:
If you think you’re interested in donating, you can start the process by going to this link:
And here is a phone number that you can call to get more information: 503-413-7349.
Your interest and information is all confidential. Looking at either of those websites or calling doesn’t commit you to anything. Even if you just consider, it’s a big deal and there’s no way to properly express my gratitude.
If you have any questions for me, you can leave a comment here or e-mail me at: firstname.lastname@example.org.