A Bit of News
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!
ESRD:
- A Bit of News
- And the Story Goes On …
- The Dust Settles … A Little
July 11th, 2008 at 1:18 am
Sorry this has become a need for you.
When I worked Pediatric inpatient as a nurse in the ’80’s,
I seem to remember a couple patients that did peritieal dialysis
during the night at home. They had specially mixed bags of dialyisate (sterile fluid with the right components to function like your kidneys used to—to wash the wastes from your body). It was warmed to body temperature and instilled into the abdomen through a port. The fluid amount is considerable—more than a normal IV bag. So that would take some getting used to. It is left in for a specific amount of time (”dwell”) and then allowed to drain out through a tube. You’d keep track of the amount in and what came out and what that looked like. Infection is a concern. These were children, so parents were trained to do the work. You’d probably want a helper. There was a small surgery involve first to place a way for you to let fluid in and out.
It wasn’t a hard thing to do in the hospital setting during a shift, but it would take some fitting into a schedule at home. Of course coming in for hemodyalisis would too.
It has been a long time since I have been working with this. You’d need more info to base your decision on, and I don’t remember the reasons to do one or the other.
Hope this is of some use.
kmom
July 11th, 2008 at 8:15 am
Sorry to hear this news Moof. I haven’t keep up with dyalisis, but I bet you could work the scheduling so that you can do it and work your computer at the same time. :)
July 11th, 2008 at 1:49 pm
I’m so sorry to hear this Moof. They used to do a lot of peritoneal dialysis (PD) in the hospital where I used to work before I came to Salem. What I gathered from there was that PD is highly suitable for people who stay at home and don’t go out much. Like kmom above says, it involves instilling a large quantity of a dialysate (roughly about half to one US gallon of fluid) into the peritoneal cavity through a surgically inserted port in the lower abdomen.
Wikipedia has some info on PD and a lot of external links that you may find useful. Here’s a video explaining PD.
In my opinion, PD is far more convenient than hemodialysis. Let’s wait & see what your Nephro says.
July 11th, 2008 at 8:26 pm
Moof,
I’m so sorry to hear this…now that I know what a “normal” number is for GFR, I can see the gravity of your situation. (In the back of my head I’m thinking, “What is this, the day for renal disease, or what? I had several cases of it to fix the codes on in the records today, & then I come back to find this on one of my favorite blogs!”)
Like Dr. Bates suggested, though, there must be some way you could work around that looming possibility of dialysis and still keep the blog alive. (If you so desired, of course…but you’d be terribly missed without this blog!)
In all seriousness, my thoughts and prayers are with you as you and your docs try to determine what the best way to handle this is.
July 11th, 2008 at 11:56 pm
I’m sure you are reeling from this news Moof, but hopefully you will feel better about it when you speak to the nephrologist. A friend’s son has been on home dialysis for almost three years while he waits for a transplant. His second! His first lasted around twenty years. He even took a trip overseas recently. He does it overnight.
I’m sure there will be support groups out there with good information, it seems there is one for everything now so maybe you can speak to someone who is doing it in your area.
July 12th, 2008 at 8:47 am
Moof, you didn’t mention this the other day. I’m so sorry to hear this. I’ll check back to see what you’ve learned from the specialist. (((hugs)).
July 13th, 2008 at 11:38 am
Oh Moofie,
I am sorry you are not feeling well and that you’ll have to deal with dialysis. Sounds like you have some info from a few folks above. I don’t know much about it, but my friend’s Mom goes twice a week. I know she felt very poorly until she started and know it gives her energy. She feels much better. I hope if anything, it will help you with your physical symptoms. Let us know how you make out.
Oh, and BTW, I am happy to see you posting again! ;-)
July 13th, 2008 at 10:28 pm
I’m sorry to hear that you are feeling so poorly and about the “bad numbers”.
I pray that your nephrologist has wisdom and will plan a course of action that will best suit you and your family.
I know that you’re hanging in there, but maybe you could try to take things a bit easier and rest a bit.
later…
July 15th, 2008 at 3:25 pm
Sorry to hear the news, Moof. I don’t know if you have seen your nephrologist or not, but a swing in creatinine from 3.1 to 3.8 is not necessarily a reason to go on dialysis. It used to be that doctors would fix certain lab values as indication for dialysis, but nowdays we mostly go on symptoms. Fatigue and nausea might be a reason to start, but if you are feeling well, you might be surprised if your nephrologist tells you that you can wait a while. It can be a soft call.
The other writers are correct in saying you should look into peritoneal dialysis. It is not true that you have to stay at home, but peritoneal dialysis has to be done up to 5 times a day, so you have to take the equipment with you if you go somewhere. A surgeon places a tube in your abdomen, and several times a day you run a quantity of sterile solution into your abdomen, then drain it off later. It takes some determination, but is less time intensive than hemodialysis, where you are hooked up to a machine for 3-4 hours 3 times a week and can’t go anywhere. Peritoneal dialysis has a lower complication rate, if it is done properly.
Good luck to you, and give us an update.
July 17th, 2008 at 8:57 am
Thank you all for the warm comforting comments. I haven’t “seen” some of you in quite a while, since I’ve barely been in here for the last long while, and I’ve got to say that it was wonderful seeing your names!
I hope to start visiting everyone again. As I tie things up on my end, I expect to have more time for doing blog runs.
It’s going to take a little bit to come up to speed, I think, but I’m on my way.