Hallelujah! I have seen a miracle with my own eyes! >;o)

Yesterday, early in the afternoon, I had my last communication with the techs at ACE.NET. We had been going back and forth by email and phone for more than a day. In the last communication, they made it clear to me that they weren’t going to do anything to help. They claimed that although they knew that their server upgrade caused the problems, that there was really nothing they could do to help me. There was a never a “we’re sorry we’ve inadvertently cause you these problems”, or anything even remotely similar. I was on my own, and facing the prospect of trying to find and customize a new template - something that I really don’t have the time to do right now.

There was nothing for it but to simply try to not think about it until I had more time.

A bit earlier today, I got two comments from some very dear friends - PK and Shelly. Both of the comments seemed to indicate that my blog was “looking better.” Bemused, I came to take a peek - and there it was! The template was BACK! YES!

It must certainly be an act of the Powers that Be, right? Of course, it wasn’t me, since I didn’t have time to deal with it, and it couldn’t very well be those nice people at ACE.NET who left me out to dry, especially since they told me less than 24 hours before that there absolutely nothing they could do! Ayuh! I’ve done seen a miracle! My blog is HEALED!

*cough*

Ya never know what tomorrow will bring … ;o)

Yes, my blog is now standing here, butt naked, with no nice template to hide behind. ACE NET, the company hosting my account, did something to their servers a few days ago, and yesterday I discovered that all of the blogs in my domain were unreachable. A technician got them all back up for me during the night - except for this one. Wouldn’t you know it. *sigh*

I’ve written to them and am asking them to finish cleaning things up, because it has something to do with their servers … and short of starting from scratch with an entirely new template, nothing that I can fix at my end. We’ll see if they make things right, or if they just intend to blithely make changes that mess up their client’s accounts, and leave them that way to flounder on their own.

Yesterday was an eventful day for me. I followed through on some life altering decisions which I will blog about in the next few days, met neighbors we’ve had for more than a decade, and lost our electrical power for more than 16 hours …

At about supper time, a storm blew in from the northwest, and raised some serious havoc over a rather wide radius. Trees came down all over, people died in lightning strikes, some homes caught fire when they were hit, some streets in Portsmouth accumulated water so fast that cars had to be abandoned. What an evening! We lost our power at the height of the storm, which was at about 6 PM last night, and it came back on at about 10 AM.

We were lucky. We didn’t lose anything, and although the plants in the garden were turned upside down, they all look as if they will survive.

Once the storm was over, Dougie and I took a walk down the road to where a pine tree had come down across the power lines. We took some photos, which I’ve included below. On the way home, some of our neighbors were just coming out onto the street to see what was going on. Herbie and Rita have been neighbors as long as I’ve been here, and he is Doug’s cousin. He’s been through a really terrible time medically for the last 2 years, including a trach, 14 mos on TNP, etc. I’m not clear on how it started exactly, but it initially had something to do with the absolute upper part of his spine. I tried hard to get some names from them … but no one apparently remembered any.

I hadn’t seen Herbie and Rita since before he became ill 2 years ago, and we enjoyed visiting each other. As we were talking, another couple came toward us from down the road … wanting to see what had happened. They introduced themselves as my closest neighbors. None of us had met them before. They’ve been in the house across the street since 1997. The conversation picked up steam, and became even more engaging with the extra input.

While we were all still talking, another couple approached from the same general direction. They are people who live only a few houses away. They bought the land from my Father-in-law, and built in one of the nicest spots available quite a number of years ago. They were very nice, and I was absolutely delighted to meet them.

Eventually, the sun began to set, and the mosquitoes drove each of us back in our separate directions … a little poorer from having had to break things up, but a lot richer from finally all meeting one another.

Here in the Maine countryside … and not just here, really, but in much of New England, people generally keep to themselves, because they don’t want to intrude and be seen as “busy bodies.” Also because we all treasure our privacy. However, if something goes wrong and one of us should need some help that others become aware of, everyone would pull together.

But still, even as I write this, I’m a little horrified on the inside as I realize that I never met the lovely couple who live right across the street from us until they’d been there for 11 years!

It took a power outage and a bit of excitement down the road to draw us all from our computers and televisions … out into the street … to meet the people we’ve been rubbing elbows with for better than a decade.

Is globalized communication shrinking our face-to-face world, causing us to become enclosed in the prisons of our homes? We can make friends with people clear across the country, develop warm relationships with friends in India and Malaysia … but more and more, we don’t even know the people who live right next door.

Friends, we need some balance, no?

Take time to greet someone near you this week - someone you see all the time, but have never spoken to. Even just a smile will do, if you’re bashful. If you can communicate with me across the country, or across the world, then you can also communicate with the people whose faces have become familiar to you, but whom you don’t know.

Oooookies … *gets off the soap box* … now here are some shots from last night …

A bit of extra reading on the storm:

I was waiting to see my nephrologist before posting again, and that happened this afternoon - so here I am.

My nephrologist is a very kind fellow from Bombay, India. He has a soft, calming voice, and a handsome smile. The first time I ever saw him was in October of 2003, as he was doing rounds on my hospital room mate, who was a patient of his. She was a cute LOL, and was painfully swelled up from CHF; she was having an awful time of it. She looked at him with worshiping eyes while he was there, and said: “I love you, Dr. M. You know that, don’t you?” His handsome face turned red, but he just smiled at her, and kept talking to her in a soothing way. I never forgot that. When my own nephrologist became a hospitalist early in 2007, it didn’t take me too long to look this fellow up. Today, I’m really glad I have him.

This afternoon, when he came into the room, he was somber. He told me that he’d been speaking with my primary care physician, and asked if I’d heard from him yet. I told him that I had. He asked me what I thought about what I’d been told … and for me, that’s a bad question. Although I think (sometimes,) I’m not always able to express that verbally. Gimme a keyboard, and I’ll go to town - but please don’t ask me to talk! I’m not sure what I replied, but it was some of the usual drivel I use as a stop-gap when I have a brain freeze. He recognized it for what it was, and took charge of the conversation - to my great relief.

He quietly explained that there are circumstances under which they wouldn’t be overly concerned about a creatinine of 3.8, but that for my situation, it was time to begin making decisions. We discussed both hemodialysis and peritoneal dialysis. He also asked about placing my name on a transplant list, and he looked a little surprised when I told him that I didn’t want to do that. He asked what my reasons were, and I explained as well as I could. This isn’t the right time, but I will blog about that in the near future. It’s something I’ve given a lot of thought to.

By the time the visit was over, we had decided that I would try peritoneal dialysis. When I asked, he explained that it has a higher morbidity for the first month or so, due to a higher incidence of infections, but that afterward it was better, because it wasn’t as hard on the heart. I will be able take care of it myself at home rather than go to the dialysis center, and will be able to retain my independence. He is going to set me up with a nurse who teaches PD, and with a surgeon who will place both a port in my abdomen, and also a fistula in my arm, just in case. I’ve had abdominal surgery, and there’s a question of how well the PD will work because of possible scar tissue.

And now … here is an idea of what my poor docs are up against. *blush* He gave me two orders for lab work, and asked me if I would have one of them done today - to check up on my potassium, since it had been unusually high. There’s a lab right next to his office, so I took care of it right away, on my way out of the building. I then drove to meet my dear friend Joanie at a local restaurant for an early supper. The angel drove all the way down from Bangor - a three hour ride - to see me today. I had my son, Dougie, with me, and I told him: “I’ve just had my lab work, and won’t have any for a few more weeks. This is something I’m not going to get to do much in the near future, so I’m going to cheat and have some cheese fries while I can!” The cheese fries (with bacon, no less) at that particular restaurant are absolutely to die for. I could almost taste them before I even got to the restaurant. So of course … I was a bad girl, and munched big plate of fries. They were gooooooood! >;o)

We came home afterward, and in about an hour, the phone rang. The answering machine caught the call. It was one of the nephrologists telling me that I’d had an abnormal lab result today, and to call right away. *sigh* I kind of gritted my teeth, held my breath, and called. Apparently my potassium was “dangerously high”, and she wanted me to take some Kayexalate immediately. Well, it was a new prescription, and I’d only had it once so far - but that single experience was quite enough for me to feel my gut begin to roil as I thought about the prospect of trying to down some of that nightmarish grit. She said - “How much do they have you taking?”, and I told her that I was supposed to 15 grams every Friday. She said: “No no no! That’s not enough! I want you to take 60 grams!” OY! Do you realize what 60 grams LOOKS like? Worse … do you realize what 60 grams of that stuff goes down like? *ugh!* One sip and you feel like you just landed face first in a pile of sand, 2 sips and your tongue and teeth are wearing fuzzy little sand coats and ties … 3 sips and the stuff is fighting its way back out of your tummy! I must have made a really pathetic whimper, because she went on, urgently, telling me that with my potassium that high, I was in danger of having my “heart stop.” I didn’t say anything to her, but by then I was picturing my plate full of cheese fries … you know, the one I’d eaten after the lab work was done. Ouch! And so, I took my punishment like a good girl, and will dutifully report to the lab in the morning to let the vamps squeeze more of that red stuff from me so that they can find a reason to feed me yet more yucky stuff! ;o)

And to tie things up for now, my personal plans for the next little while are as follows …

I’m going to try to blog about this as it happens. Up until now, I haven’t wanted to do that except for during extraordinary occasions, but this is different, and I want to share. Perhaps we’ll start hearing from others who are going through the same stuff.

Also, there are an awful lot of things going on in my life besides the ESRD. I’ve played my cards pretty close to my chest in the last few years, but I’d like to try to break out of that. There are other adventures that are ongoing, and others that I’m just now beginning, and I would like to share those with you, too.

So - fair warning. Those of you who can’t take the nitty gritty may want to find your reading material elsewhere for a while. There will still be silly eye benders, funny stories, garden photos and more, but there will also be a bit more patient blogging than I’ve been willing to do in the past … and more of the real stuff that’s ongoing in my little part of the world.

Lots of big changes in the wind …

We’ve had some very hot weather for our area in the last week or so. Many of us are not used to it, and even those of us who love the heat (like me! :o) have begun to wilt a bit.

When I began to feel nauseated all of the time a bit over a week ago, I thought that it was the heat getting to me. I tried to keep myself hydrated, and decided to persevere in the garden in spite of being queasy and hot. We just went 3 years without one, and it’s like a little corner of heaven out there.

Yesterday, Doug, my son Darian, and I went up to my Mother-in-Law’s house, and we cleaned out her garage. Some toothy little critters have eaten the wiring in her car over the winter for the last two years, and have also begun to dig holes right through the concrete in one of the garage’s walls! Wow! So we went up there, and sorted through everything. In no time at all, I had to sit down. I managed to get up every now and then and do a little more, but I would almost immediately head back for the stoop. I felt awful leaving Doug and Darian to do the lion’s share of the work, but I just couldn’t help it.

Once we cleaned out the garage, we ran home for a shower, then we all went out to eat together … swinging by the hospital on the way so that I could have some lab work done.

I didn’t think anything more about it until this afternoon, when I listened to the messages which had been left on the phone. There was a message from my primary care physician - the first time I’ve ever heard his voice on the phone. He wanted me to return his call … something to do with the lab work …

I was supposed to see him on Monday - so I wondered what on earth could be so urgent that it would deserve a call.

He didn’t waste any time before satisfying my curiosity. In the 3 weeks since my last lab work, my creatinine had gone from 3.1 to 3.8, and my BUN had gone up to 59. I had gone over the line into stage 5 - ESRD. My GFR is down to 12 from 16. He ended the conversation with “Before you see [the nephrologist] next week, you really should consider agreeing to dialysis. You’d feel a lot better if you did.”

The information is still trying to sink in. No matter how prepared you think you are, you find out that there’s a load of stuff that you’ve never considered before. You also discover that although you knew is was coming sooner than later, having the news actually dumped into your lap dredges up a whole slew of unexpected emotions.

And so, that’s the news for now. I thought my numbers would bounce up and down a bit, but I guess we’re past that stage. I don’t know what comes next, but I should find out more when I see my nephrologist next week. I’ll post again once I have more info.

If anyone knows anything about home dialysis, I’d love the info. Thanks!