For many people with Chronic Kidney Disease (CKD), it’s not easy. You don’t really think of all the crazy things that happen when you get CKD. The kidneys play a big part in your everyday health. You know (or may not know) the kidneys produce urine and subsequently you pee it out. You know that this stuff is just “waste” but honestly, do you really know what it is?
The kidneys act as filters for your body. When your kidneys start to fail, the filtration process gets worse, and while it may produce more urine at first (common for diabetics), it’s actually not filtering as much of the “poison” in your body. So what happens is that the poisons in your body are still in there, and wreaking havoc on your body.
While this may sound horrible, and it is, there are always ways around it. For people with stage 5 CKD, they must go on dialysis. There is no one, and I repeat no one that will say with any honesty that dialysis “isn’t that bad”. We hate it. Dialysis sucks. Anyone that has gone through it will tell you that it’s horrible.
But to the point of this whole blog post. Most people who are on dialysis and have CKD don’t look like they’ve got a chronic illness. As a matter of a fact, the people you work with could very well have it and you’d never know. But you better believe they are not “fine”.
Here’s some advice I tell everyone and I try to heed it myself. Some people really make it hard for me. There are a lot of people with illnesses and chronic conditions that you could never see. It won’t even be apparent. You know when you see that one person who parked in the handicap section and didn’t even look sick? He or she could very well be sick and need that spot. Don’t be rude and yell at them for parking in a handicap spot. You might consider asking them if they’re allowed to park there. But don’t be rude.
Treat everyone like you want to be treated. If you like being yelled at and harassed, then okay, by all means, continue to do so. But really, if you treat people nicely, you’ll get a nice response most of the time.
If you’re looking for resources for CKD or Dialysis, I’d recommend these sites. They really helped me out when I was looking for answers:
- Davita – I haven’t used their dialysis centers, but I hear they’re pretty nice. Good resource for recipes and just plain info about CKD and more.
- I hate dialysis – This is a great site for anything dialysis. This is a site made by patients for patients.
Do you have a story to tell? Any experience? Tips, tricks and advice?
A recent study is saying that receiving Dialysis 3 times a week may not be enough. A linkto the Forbes article. So what they’re saying is simple. Because every rotation involves a 2 day hiatus from Dialysis, that 3rd day (Monday or Tuesday) is the most dangerous day. As an ex-Dialysis patient, I have to say there might some credibility in this.
On the third day, which in my case was Tuesday, I felt the worst. It was the worst day of the week. My Dialysis schedule started at 5:30pm. So I had the entire day to go through before I received any treatment. That Tuesday was total hell, I have to admit.
Anyone who undergoes Dialysis knows how it feels. You’re at the point of kidney failure. That means you don’t produce urine. Now this may sound great, since you’ve only got to go bathroom when you have to poop. But honestly, you miss it mainly because you realize just how much it means to pee. Peeing gets rid of your toxins in your body and if you can’t pee, that means the toxins (that’s poison BTW) just accumulates in your body and well, it makes you feel like shit.
So think about it. That third day would have to be the absolute worst day of the week, right? I can go with this study then. But I have to agree with Dr. Paul Eggers. There should be more studying done. One study doesn’t mean it’s true. But honestly, how many people have to suffer before a determination is made?
What’s so bad about sugar? – Sugar isn’t the bad guy. It’s all about not going overboard. Diabetics just have to watch how much they eat is all.
Diabetes link to Alzheimer’s Risk – Didn’t we already know this? Regardless, whether or not this is a true study, controlling your sugars is a priority. Something I need to do better.
Katie had left me this link on Facebook but it’s been lost. So I thought I’d repost it. . This link is for those of you that don’t quite understand what my life is like everyday.
The other day, I was doing some searching for some water shoes, so I might be able to go swimming in a pool. If anyone knows me, swimming in the ocean is out of the question for me, as they freak me out and are probably not a good thing with my immunosuppressant drugs. This includes rivers and lakes. I won’t swim in them, they’re dirty, and no thanks. I know a pool is probably just as bad, but at least there’s usually chlorine in those. Anyways.
So I was looking for recommended water shoes for diabetics like me and I discovered something really intriguing to me. A lot of people don’t know about foot care for diabetics. I can understand this. There’s no reason for anyone to know about unless you have diabetes or know someone who is. However, it just seems like everyone is getting diabetes these days because of various reasons. Everyone thinks it’s just all about pricking your finger and testing your blood. Sorry, it’s a bit more than that folks.
For those of you who in danger of becoming diabetic, this post is for you. If you get diabetes, this is what you will have to live with, FOR THE REST OF YOUR LIFE. (sorry for the caps)
For me, it’s a routine. I know what I’m going to do, and it’s really automatic for me. I’ve been doing it for so long I guess it’s second nature. I’ll use the bullet method:
- Inspection of the feet – Any Thomas Covenant readers out there? Remember that routine he did where he’d visually inspect his entire body? What did they call it, VISE or something like that. Anyways, that’s what I do with my feet at the end of the night before I go to bed. However, I take it one step further and feel my feet just in case I missed anything.
- Never go barefoot – ever. Don’t do it. Why? Because you can cut your feet, you can accidentally step on anything that might just burrow into your foot. And the clincher here is, for some diabetics (like myself), you can’t feel anything with your feet. Yeah, it’s kinda weird walking. That’s why I walk with a cane. I lose balance really fast, and if I fall, that’s a bad thing too.
- Dry your feet after a shower – I know this may seem like a duh moment, but honestly, for many diabetics (like myself) we get neuropathic pain in our feet. That means you have the tingling sensation like your foot goes to sleep all the time. You know for everyone it just go away after you wake it up? Well, it never wakes up for some of us. And just the touch of a towel can be excruciatingly painful. Even sheets! You know, I don’t remember the last time I went to bed with the sheets over my feet. I always leave them out.
- Be very careful when clipping toenails – because the numbness is there, you won’t be able to tell when you clip off toenails or your own foot. I know some diabetics have someone cut their toenails for them, but I can’t bear anyone else touching my feet. It’s just too painful. Hell it’s painful just to take off my socks.
- Keep them moist but not too moist – Use some kind of lotion. Again, this may be a duh moment, but you don’t want them too moist because then you might get a fungus. (or something worse!) If your skin cracks, then you’re in trouble. Remember, diabetics take longer to heal, and because it’s on your feet, you might not know about it! Especially if you don’t do your visual checks!
- Watch for heat and cold – As a diabetic, you may as well forget about heat pads, icy hot patches, things like that. These are all bad things for you. Because of any numbness that might occur, you might not know if it’s too hot or too cold. Especially on your feet.
- Always wear socks – Did I mention this before? Yeah, it’s that important. If you don’t wear socks, then at least wear a non chafing slipper that will encase the whole foot. i.e. no open heel slippers.
What are the complications if you don’t do these things? Well, there are plenty of them. And I’ll tell you oh, they’re horrible. But you know what’s the worst? AMPUTATION. That’s all you need to know. If you don’t take care of your feet, they’re gonna eventually cut them off. It’s as simple as that. Have you heard of people losing their toes or feet to diabetes? Yeah, this is how it happens.
So hopefully, if you’re a newly diagnosed diabetic who happened to find this page and learned something, then my job is done. If you haven’t learned anything, then either you already knew about it, or you’re ignoring everything I say, in which case, you’ll find out sooner or later.
I just hope you don’t have to lose a foot to learn something.
So today I had to go to Urgent Care in Group Health for my eye. Yesterday I woke up with serious pain (8/10) in my eye which only got worse when I looked at any light (photophobia). Throughout the day yesterday, I pretty much slept or tried to sleep, and kept my eyes closed. I figured I’d sleep on this until this morning and see how it goes.
Well, this morning it was no better. Tylenol helped but very little. After seeing the doctor, he determined it was Iritis. Basically, in my case, it looks like my pupil is locked in one position, and it’s just wide open. Hence the reason I can’t stand bright lights and have blurry vision in my right eye. He also mentioned my right eye is slightly swollen, and that’s what seems to be causing the pain. It’s like having a migraine in your eye.
So now I’ve got steroid drops for my swelling and some other drops to keep my pupils dilated all the time. So I’ve gotta wear the dark sunglasses so it’s not so bad, an icepack handy to keep on the eye. It never ends.
As some of you may or may not know, on July 29th, 2009, I went into surgery to receive a kidney which my awesome sister was willing to donate. Well, it’s coming on the 2nd year anniversary, and I’m doing pretty good. I think a shout out goes to my sister. She’s pretty damn amazing to be willing to give me her kidney.
I’m not 100%, but I’ve still got so many other things that are wrong with me, not all of them have to do with my brain either! But I’m hanging in there.
I think a majority of my recovery has to be credited to my awesome wife, Meesh. I think without her, I’d still be in bed all day, feeling even more sorry for myself than now. I think she underestimates herself as my primary caregiver. She thinks she doesn’t do anything, but just being there has done quite a lot for me.
As for the rest of what’s going on, the pain comes and goes. I suppose you could probably call my case a mild case of Fibromyalgia, just to get a sense of what Neuropathy means. But I think anyone who has FM will tell you, there’s no such thing as a mild case. You either got it or you don’t. It just hurts that much. In my case I guess I’ve got it better in terms of pain. But it does hurt. I mean there are days when I feel like I want to die. Those are the bad days. The good days are the days where the pain is a 2 or 3 out of 10. There is never a time when I don’t feel pain. Never.
Along with the pain, when I eat, I sweat. I mean literally. I don’t sweat because it’s hot, or because I’m eating spicy food, but because my brain is too confused from all the damage it’s gotten and when I eat food, instead of feeling like “wow, this is the best food I’ve ever eaten”, I sweat. I have accepted it. Although I have to say with the warmer temperatures, it seems worse now.
So as not to sound like a total whiner, I won’t really talk about all the other stupid complications I’ve got going. If you’re online and feeling bored, you can always ask me about it, and I’m sure I’ll tell you all about it. Because it’s all about me, you know. :P
So, now, my doctor has prescribed Morphine for my nighttime pains and neuropathy. It would seem because the gabapentin isn’t doing everything (I can’t even imagine if I didn’t take any at all how the pain would be like), he decided to give me morphine to be taken at around 5 to 6pm so I can sleep at night. It’s long acting, and in pill form, so it helps by giving me a small amount of morphine over the course of 12 hours. So far it’s been working ok for me, although I have to say it varies from day to day. But I believe it’s because my neuropathy varies that much. It’s really crazy.
I’ve been taking the morphine for just about 2 weeks now, and so far, it’s not bad. We’ll see how things go. Hopefully I’m not entirely a zonked out person. :D
I have to say the one year of my kidney transplant came and went last July 29th. I’ve been doing pretty good since. I guess the power of current medical technology is something else. Since the one year mark, things have been going pretty much ok. There are a few things which need to be resolved, but I’m sure things will work out eventually. I’m officially a permanent handicapper now, so I can get all the cool spots and actually be legal about it. It’s surprisingly easy to get a handicap decal. My doctor sent me a form, I signed it and turned it in and just like that I had 2 decals. Crazy I know.
I’ve also been experiencing a lot more pain from the neuropathy. I mean a lot more pain. They’re pretty much in my hands as well as my feet, and there are some days where it’s just take your breath away unbearable. My shoulder has been really killing me lately from tendonitis in the bicep and rotator cuff. Or something like that. Just another one of those things to chalk up on the board. If my medical record was transcribed onto paper, I swear it would probably be about 6 inches thick. Don’t laugh, I’ve seen medical records that thick. I did work in a hospital when we didn’t have computer medical records, you know.
What will tomorrow bring? Good weather I hope.
Today I just wanted to touch on something that’s a daily thing for me. Neuropathy. The reason I wanted to touch on this is pretty simple: I want to know if anyone else has similar issues as me. I don’t expect anyone to have the same conditions as I do exactly. I’ve already been told that it’s unique for me to have all these issues. So I’d like to hear from other diabetics and non-diabetics who have similar conditions to mine.
To start off, I have one of the most common for diabetics, peripheral neuropathy. Basically, I have issues with my nerves in my feet and hands. These damaged nerves in turn cause serious pain. It’s sort of like your foot falling asleep, and the tingling sensation you experience afterwards. Except for me, it’s all the time. On top of that, I get stabbing pains occasionally in the extremities. Well stabbing might not be accurate. It’s more like sharp pains. Like someone is sticking a needle repeatedly into my feet or legs or wherever.
I’m also experiencing numbness in the bottom of my feet. That just means the nerves have died at the most extreme tips. That’s the reason of course for me to walk with a cane because of imbalance. But the imbalance isn’t entirely because of the numbness. But that’s another story.
Next, I also have autonomic neuropathy. This means a various amount of things. Basically in myself, the brain gets confused a lot. How this happens in me is my sweating. When I eat food, I sweat. Yes, it gets to be a crazy thing. It could be 20 below while I’m eating, but I’ll start to sweat while I’m munching on my favorite grub. It can get pretty tiresome after a while.
I also have the same types of pain I have in my extremities in my stomach and chest areas. Basically the entire trunk of my body. Obviously this doesn’t really fall into the peripheral neuropathy since it’s not peripheral. But hey, it’s still the same. Basically for me, at times it just feels like I’m rolling a vat of needles. The movie Saw comes to mind.
I think I’ve touched on the major things I have due to neuropathy. I’m sure there are more that I never thought were because of neuropathy.
For those of you who are experiencing neuropathy I’d love to hear about your experiences and pains. Perhaps we could compare notes and get some home remedies from each other. Of which I don’t really have any. I’m just loaded up on Gabapentin (Neurontin).
It just seems like everything in this world is going crazy. With the oil crisis in the gulf, I just don’t know what to think of anything anymore. But I won’t talk about that here. This place is all about me.
What’s been going on? Well since I last posted, I’ve steadied out on my gabapentin. It seems that the medication has had enough side effects on me to cause some weird issues. Remember I was talking about my balance and the right side of my body? It’s suspected that the gabapentin is affecting that. Basically, what we’re talking about is that it prevents my brain from doing stuff. Therefore the weird things such as my right side of my body acting slow, the imbalance I feel, and so on. I understand it could be a cause of my headaches as well, but I don’t really see how. But hey, I’m not the doctor.
Other than that, because of the imbalance and numbing of my feet from neuropathy, I have to walk with a cane when I leave the house. Only when I leave the house because outside the pavement and ground isn’t always level, and I don’t really have much of a hold on anything out there. Pretty sucky. But my dad got me a cane, and it’s very cool, as you can see from the image to the left.
My neuropathic pain has steadied out to be painful only some of the time, and when I say that, I mean I only get the sharp pains every ten to fifteen minutes. At night, it’s still bad, and I have to get distracted by music in order to get to sleep. I’m sure there are others that must have this extreme neuropathy like me, and I’d love to hear from you. We could compare notes.
The quest to grow my hair for Locks of Love is still continuing. I don’t think it’s quite 10″ braided yet, but it’s getting close. I’m very anxious to get my hair cut back to it’s shortness.
Other than that, recently I got X-rays of right shoulder and right hip to see if there were any physical issues going on with them, since I have pain in my major joints, especially the right side all the time. However, they didn’t find anything at all, so I’ll probably end up getting a shot of steroids in my shoulder so I can heal that with Physical Therapy. Who knows what they’ll do for my hip.
The biggest concerns right now is my sugars. They’ve been running higher than normal, and I haven’t been doing anything different. I’ve gotta get together with my doctor and see what is going on with that. We shall see.
Other than that, we’re coming up on year one of the kidney transplant. It’s quite amazing. Life after transplant has been a bit different. But I’m getting used to it. Sort of.
So here comes a bulleted post. If you don’t want to continue reading after that, don’t continue to read on. Otherwise, read on!
- So I’ve started to increase my dosage of Gabapentin (aka Neurontin) as per the neurologist. My neuropathy is just getting worse every day it seems.
- I’ve been considering to just go ahead and keep growing my hair to donate to Locks of Love.
- I went to get a bunch of lab tests done, and my A1C was at an all time low I believe. (this is good)
- Lately, I’ve been having issues with the right side of my body. I keep thinking it’s residual from my stroke, but it can’t be.
So last month, I got my super flyer miles for staying in the hospital. I told Katie one day if I stay one more time, I get a free stay for a week. Like she said it’s kinda sad and funny at the same time. I swear I’ve been there enough times to recognize most of the nurses, doctors, IV team members, and mostly the lab people. The lab people stuck me enough times this last time.
Because my left arm has a fistula, they can’t do anything with it. They cannot put an IV in that arm or draw blood or anything. The left arm is untouchable. Therefore, they had to attack my right arm for labs and IV’s. You should have seen it, it was totally black and blue. I was in the hospital for four days, so that’s at least four sticks for lab tests, and one time, the IV team tried to insert a new IV and failed three times. I was severely dehydrated so it was very hard to get any needles in me. They also had to do an arterial blood gas, so that was pretty painful.
At first, I was in moderate pain. I told Meesh to come home, I totally needed her and she came home. On her way home, the pain escalated to the point of agony. I was having a hard time even breathing. So I had Meesh call 911, and an ambulance was dispatched. I was going to have her take me to Urgent Care, but there was no way I could wait. The pain was on the verge of 10 out of 10. I mean this was the worst pain I’ve ever felt. I thought I was going to die, that’s how painful it was.
The EMT’s took good care of me and my blood sugar was 400+. I don’t remember what it was exactly, but it was 400 something. So for the first time in my life, I took a ride in an ambulance as a patient. (I’ve drove and ridden in ambulances many times as an EMT myself.)
I started to feel better. At first, we didn’t know what it was. Throughout the stay in the hospital it was determined (after an x-ray) I had pancreatitis. At first, they were baffled on the cause. They asked me repeatedly if I drank alcohol, since that’s the main factor of pancreatitis. But I haven’t drank a lick of alcohol for years. It’s not really a good thing as a kidney patient and diabetic to really drink. Especially in excess.
But after more labs, they determined the cause of my pancreas being so inflamed was DKA. I really needed to manage my insulin better.
The treatment for this was surprisingly simple. I was on PCA (Patient Controlled Analgesic – Heaven!) and npo or nothing by mouth. (Don’t ask me why po stands for by mouth…I forgot why) So I had ice chips for two days. After those two days, I was able to go on a clear liquid diet, which basically meant broth and jello. I must tell you, I never thought beef broth could taste so good. Sugar free jello was incredible.
I’m doing much better now and not planning on another stay in the hospital. Any more hospital stays from now on will definitely be planned. I hope.
So I got notified that there is no indications of any stenosis in my artery feeding my new kidney according to my CT scan. This is great news. That means no need to do an angiogram to open up the artery.
Good news for once is great to hear. On a different note…
We went to visit a nurse practitioner the other day to evaluate insulin pumps. Those are ungodly expensive but worth every penny I’d think. They can cost upwards to 5,000 bucks. That’s extreme though. I think with my insurance I would end up dishing out about 800 to a 1,000 bucks. Still pretty costly and it doesn’t include supplemental supplies like the tubing and the catheters.
I also learned I probably wouldn’t benefit too much from using it since I would have to replace the insulin every other day or so. It’s because I use anywhere from 150 to 200 units a day of insulin. Yes it’s quite a bit. Exercise and better eating will help this.
I’m going to see a nutritionist to see what she can recomend. I already know I need to eat more food that has a low glycemic index. I also know I need to become more active. With the neuropathy and back pains it’s really tough for me but I have to do it.
I think I might pass on the insulin pump only because my case is a bit different. I am very very insulin resistant. And I already spend a fortune on medicine and Medicare. I don’t think I need to add onto that. I should probably talk to my wife about it and come to a final decision. Crazy!