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Many things, some good, some bad…..

So, many things have happened since my last post, which was quite a while ago. I’ll hit the good thing first: I have a new daughter! She’s a beautiful little girl, weighing 6 pounds 15 ounces at birth (a bit more now) and both mom and daughter are doing fine. Health-wise, at least. If I had to say one thing about parenthood, no matter how many times I heard people tell me that babies take up a lot of your time, I didn’t really realize just how much time babies take up.

And really, it’s how the time goes that really hits you. Natalie doesn’t really fuss all the time or anything, as she sleeps quite a bit. The problem is how long she sleeps, which is really hard to tell at this stage. She could sleep for 3 minutes or 3 hours, and when she wakes no one knows what’s coming next. Is it time for a feeding, time for a changing, or perhaps Natalie’s just bored and wants to take a look around? There’s also all those things that a person normally does during the day, you know, like bathing and basic house maintenance. Whereas before my wife and I could plan what we wanted to do and when we wanted to do it (or even just go out on a whim), now we find that everything revolves around Natalie. Even simple things like taking a shower can be complicated to arrange. Luckily, though, there are two of us, and one of us can take care of Natalie while the other does something else, though unfortunately since Sara is breastfeeding exclusively right now she gets the lion share of Natalie care, and also unfortunately a lot of the time that she’s taking care of Natalie I have things I have to do. Soon, though, we’ll be introducing Natalie to a bottle so I’ll be able to take care of some of the feedings. And really, though we have lost a lot of time and it takes a lot to take care of a new baby, every time I look at Natalie…..it’s just all worth it.

Now for the bad. Before I begin, I would like to say that yes, I know I’ve kept some stuff hidden from people and some of what to come will be a shock, but before a couple of days ago nothing had really been confirmed and I didn’t want to worry people unduly if nothing was wrong. I also simply reserved the right to tell who I wanted to know, and there were precious few who knew. Some people may know that I went into the doctors office last fall complaining of chest pains, and that I found out that I had high blood pressure. I was and am taking steps to keep it lowered (and I have been, it’s a lot lower than before). Now, what a lot of people don’t know is that my blood tests showed something worrisome: my creatine levels were higher than they should be. The doctor knew that my high blood pressure could affect my creatine levels, so she didn’t do anything at the time. On subsequent trips, though, my blood pressure was better but my creatine levels weren’t. For those that don’t know, creatine levels are one of the indicators of how well the kidneys function.

The doctor finally decided that she needed to send me to a specialist so that we could find out what was going on. She said that she believed that my kidneys weren’t functioning like they should, but since she wasn’t a specialist she wasn’t comfortable looking into it more, and that she could be wrong. This was back in the spring. Well, the specialist had a very booked schedule, and he is the only one in town, so there was nothing for it: I had to wait a little over three months till I could see the specialist. So sometime in mid-July I went in and talked with the specialist, who ordered a plethora of tests to be done. Beyond a couple 24 hour urine tests, I also had to go through a blood draw that pulled 7 (yes, 7) vials and 2 kidney based ultrasounds. Needless to say getting all of this done took a little bit of time, and I finally got to go back to see the doctor this past Monday.

I went in and he spoke with me. There was a lot of stuff that I don’t have, things with long names that I couldn’t remember if I tried (and he told me to not really try since I didn’t have to worry about them). But something was confirmed: I have been diagnosed with chronic kidney failure. What does it mean in a nutshell? That it isn’t a matter of if my kidneys are going to fail, but a matter of when. What he could tell me was that my kidneys are currently only operating at less than half of what they should be for a guy my age, and that they are showing signs of decline. He was also able to tell me that the cause was likely hypertension, and though usually hypertension doesn’t act that fast there is a summation that I inherited weaker kidneys from my father. Since I hadn’t gone in to see a doctor for something like 5 years, and since I didn’t show any signs of normal kidney diseases, hypertension is most likely the culprit.

What he couldn’t tell me, though, was a time frame of how long I have till they fail. Though any time frame he could give me would be rough anyway, he couldn’t give me one at all because the place I went to have my urine tests done failed to perform one of tests ordered, a test on how much protein is being spilled. Without that number he can’t say whether it will be a couple years or a couple months till my kidneys fail. So I get to go back and do that test again (I’m going somewhere else this time), and while I’m going the specialist has ordered a couple more tests to go along with it to look for the extremely rare kidney diseases (that he doesn’t think I have, but might as well check while we’re doing the tests). I’ll be doing the tests sometime in September and I get to wait till October this time to find out more.

So what does this mean for me? Well, right now I get to keep taking my blood pressure pills and taking other steps to keep my blood pressure down. Keeping my blood pressure down will help to (possibly) prolong the inevitable. Luckily I’m on a very low dose of the medicine so it can be increased if need be, though I’m doing well keeping it down as-is. But now that I’m on blood pressure meds, I probably will never be able to stop. And nothing is going to keep my kidneys from failing. How long do I really have? Well, as the specialist said, he can’t give me any kind of a time frame right now. But the pretty clear impression that I got was that while “months” may be too short of a time frame , “years” may be too long. When my father found out that his were failing, I know he had but a few years till they failed. How long till mine fail? Could be next year. Could be a few years. Might even be a couple beyond that. But I wouldn’t get my hopes up that I’ll be able to hold it off any longer than that.

Many people will probably be asking what happens after they fail? Well, there are only two options that I know of, though I’ll be researching this more, you can count on it. The first option is having a kidney transplant. These can have the highest payoff but can also be the riskiest. The payoff is having working kidneys and leading a fairly normal life, being sure to take meds so that your body doesn’t reject the new organs. Ah, but there’s the rub. Though you won’t have to do the second option, there is a serious risk that my body could reject the new kidneys, a rejection that could lead to death in a matter of minutes or even seconds. And even if my body doesn’t reject them right away, the risk of rejection climbs higher over time. And if the rejection is a violent one……

The second option is kidney dialysis. This is the option that my father chose. Though it can be called the “safer” of the two options, the affects of dialysis can be staggering. Many people only survive a few years on dialysis, though to be truthful most of the people that are in this category are already elderly when they began. Dialysis must be performed 3-4 times a week, and sessions can last from 1.5 to 3 hours. During this time the dialysis patient is hooked up to a machine which through IV-like needles which pulls blood from them and sends it back respectively. The machine, in a nutshell, performs the tasks of the kidneys artificially. While a person may delay a dialysis session by a day, any more than that endangers the person’s life. Beyond the fact that the person is tied to a machine 3-4 times a week for the rest of their lives, which by the way isn’t a pain-free experience, the process takes it’s toll on person’s body, basically “aging” them. My father was in his early to mid 60s when he died. He required two canes two move, could barely open and close his hands, needed a oxygen tank in his house, and was basically in nearly every way an old man save one: his brain stayed as sharp as ever, I’m happy to say.

Why did my father choose the route of dialysis? I can surmise the reason. It’s pretty simple when you think about it: my brother had just been born, and 18 months after that I was born. Now that I have Natalie, I can easily see why he made the choice that he did. He wanted to ensure that he would have the most possible time he could with his sons, and dialysis is technically less risky than a transplant (or at least it was at the time, I don’t know about now). I found out from my mother that there was going to be a complication concerning a transplant even if he wanted one, but I’m sure that my brother and I affected his choice, and I have a feeling that even if there wasn’t a potential complication that he would have chosen the same path. My father ended up enduring 25 or so years of pain and suffering before he died, but he succeeded in his task. He got to see his children grow up. I really wish he could be around right now, so he could have the chance to hold his granddaughter in his arms…

What route will I choose when the time comes? I’m not sure. I want to research things more before I start really deciding on anything. I lived with a person who was running on dialysis for a long time, so I can tell (at least from the outside) what that is like. But times have changed since then and I don’t know if any new information could shed a different light on the subject. ::sigh:: The gravity of the situation is a heavy one. Though probably not instant, I know my dreams for the future have been irrevocably changed. The trips to foreign countries? While not 100% dashed, my hopes for them have changed since if I’m on dialysis I would have to arrange to do that every couple of days, and I saw the complications my father went through with that even in the states. If I have a transplant, I have to wonder if I’ll live long enough. A bit of a maudlin thought, I know, but I refuse to sugar-coat the future. I’d rather face it. Living to old age and spoiling grandchildren of my own? Well, maybe the grandchildren part will come true (at least one did for my dad), but I have to face the fact that “old age” may be something that will happen to other people.

But I want it known, here and now, that just because life has chosen to deal me this hand I am not going to give up easily. So I watched my father die a slow, painful death over the course of 25 years. I will take the memory I have of him as inspiration for my own life. He has inspired me before and he’ll do it again. So I have been dealt a bum hand that says I will probably never see old age. Well, fine, I’ll learn to cherish what moments I have, for now I know life can be a fleeting thing. And though the complete song doesn’t match the situation, there are definitely parts of My Chemical Romance’s “Famous Last Words” that resonates with me:

I am not afraid to keep on living,
I am not afraid to walk this world alone
Honey if you stay I’ll be forgiven,
Nothing you can say can stop me going home.

I will do whatever I can to keep being able to go home to Sara and Natalie.

Whatever I can.