Riders with CKD...
Does it effect you when you ride? Have you had to stop or give up anything as a rider? How has it changed your daily life? I have an appointment to see what's wrong with my kidneys exactly, but they're guestimating its CKD based on the tests already done. I know about reducing sodium intake and electrolytes. Reduce proteins, stay away from beer and alcohol, try to keep my weight up, etc. What are some challenges I'm looking at? Any advice?
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Nobody on here has advice for kidney disease? How do you deal with the hiccups?!?
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Im guessing CKD is cystic kidney disease also known as PKD (polycystic kidney disease). I have PKD and at this stage it has no impact on my riding. If your kidney function is not severely impacted you go about life normally. Your doctor will regurlarly check your lab values and let you know if there is a decline in how your kidneys are working. Limiting salt and monitoring for signs of decreased kidney function. Eat healthy, get excercise, see your doctor regularly.
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CKD is Chronic Kidney Disease. It can be caused by numerous different things, one of them including Polycystic Kidney Disease.
I'm a Patient Care Technician at Fresenius Medical Care (a hemodialysis unit). My mom is also a RN there. The status of your CKD (if you have it) can vary tremendously. But with proper dialysis, diet and exercise, you should not have issues with riding.
Having CKD is a challenge. Many people are always tired and feel sick, but once dialysis is started and a few weeks-months go by, you start to feel like your old self again. There is one dialysis patient that participates in the Iron Man Challenge. CKD is not a death sentence, it's not curable, but it IS manageable.
You very well could be able to go many years without actually going on dialysis. It all depends on how much kidney function that you do have. If I remember correctly, It's when you only have 15% kidney function left, that you'll need to be started on a dialysis treatment.
I hope that you figure out what is going on. :-(
If you have any other questions, feel free to contact me. My mom has been in dialysis for going on 20 years so between the 2 of us, we'll be able to answer lots of questions that may be running through your head. It can be extremely overwhelming and scary at first.
They said I had about 35% of my healthy kidneys left. They said right now, they don't think I'll need to start dialysis, but I need to stick to my new diet and pay close attention to how I feel, and what makes me feel worse.
Its is kinda scary, but the nausea is the worst part. It seems like everything makes me want to puke. And I'm trying to understand what the guy was saying about watching my fluid intake? And I know I should have asked the doctor, but my brain was so everywhere, but how exactly does dialysis work? I get the general gist, clean the blood cause my faulty parts can't, but how? Sorry if these are stupid questions, I kinda panic around doctors and hospitals and flight always wins over fight.
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Again, I'm sorry to hear that you are going through this. Many people don't even realize how much they need their kidneys until they start to fail.
There is SOOOO much information for you to know and understand. And it takes months to sink in. So I recommend keeping a journal or notepad that you can write any questions in/your thoughts so you can voice your concerns with your doctor.
I'm going to try and sum this up as best as I can. I'm sorry if I tend to jump around a lot but there's so much information to write down for you. And that's just basics. Not even going into very much detail. Maybe having it written down for you so you can re-read it as needed will ease your mind.
I want to reiterate that CKD is not a death sentence. You do NOT have to stop living your life just because your kidneys are failing. Okay? Please don't think that. I know some days it'll be hard to get out of bed. Some days it's hard to think straight. Some days it's hard to force yourself to eat. It'll be even harder to force yourself to exercise. But please don't give up.
First, Follow what your doctor says. Not listening to him/her because you think that you know best, or you don't trust his judgement will not do you any good in the long run. Voice your concerns to him/her so you can here WHY he's telling you not to eat something, or why he's telling you that you need to do this etc. :wink:
Okay, let's start with some basic information. What do your kidneys do? Have you ever stopped to think about it? I certainly didn't until I started working in a hemodialysis unit.
- Removal of waste (Urea, Creatinine, Uric Acid, BUN)
- Regulation of fluid balance and electrolytes.
- Release of certain hormones
Why do kidneys fail?
- Diabetes and High Blood Pressure are the 2 main causes.
- Injury to kidney
- Birth Defects
- Inherited Kidney Diseases
- Drugs, Antibiotics, OTC Painkillers, High amounts of soda.
You mentioned that you didn't understand what watching your fluid intake meant. Let me see if I can clarify that for you. If you remember that I said the kidneys regulate your fluid balance. That means when you drink water, you urinate it out. The kidneys conserve or excrete fluid as needed. If you are dehydrated, there is a hormore that is released that tells your body to keep water in your body. If you have an excess amount of fluid, the kidney releases a hormore that tells your body that you need to get rid of fluid. Now in normal, healthy people, that means urination. But, people with Acute or Chronic kidney disease, either cannot go to the bathroom enough, or...they cannot go to the bathroom at all. They don't feel the urge to go and therefore, don't. Which is where you get excessive fluid. The more you drink, and even eat, the more fluid that you have to get rid of. If you can't get rid of it...Where does it go? Well, it doesn't go anywhere. It stays in the body, which is when you get lots of swelling. Hands, ankles, feed, legs, neck, face etc. Anywhere that fluid can go, it will.
Which is why it's important if you doctor gave you a fluid restriction that you follow it. Everything you eat and drink should be taken into consideration. Watery fruits, veggies, water, pop, juice etc are all included. I know some patients that can only have 12 ounces of fluid per day. Others can have much more. It all depends on the individual person. But...If you are having swelling, your taking in more fluids than your body can remove. Normal urine output is approximately 2 liters per day. That's after 98%-99% of fluid being reabsorbed, which is a function of the kidneys. If you kidneys do not work...do the math. Add that 98%-99% to the 2 liters a day and think of how much fluid is on your body.
That's also why it's important to minimize your salt intake. Salt retains water, and it makes you thirsty. 2 things that a CKD patient does NOT want.
Patients that have CKD will gain 1.5kg-2kg per day between hemodialysis treatments. 1kg is equal to 2.2 pounds. So many patients gain 4.4 POUNDS of fluid EVERY day. 8.8 pounds every 2 days. During dialysis I take anywhere between 4 pounds and 20 pounds off of a patient every single treatment. That can be 60 pounds of fluid in just 1 week. Crazy!
Also, when you can't go to bathroom, your body cannot regulate the electrolyte balance in the body. It basically will end up poisoning your body if you cannot get rid of the fluid. You'll have high amounts of potassium, which can cause cardiac arrest. High sodium, high Urea, etc. It's continues to build up and up and up because there is no way out.
Since you still have 35% kidney function, you are able to get rid of a lot of those potentially bad things. But when the kidneys continue to fail, people will have to go on dialysis to clean out the toxins so you can live a healthy life.
You mention you feel sick a lot. That is due to the buildup of the BUN, creatinine, potassium and other things I've previously brought up. It can often lead to you not feeling well all the time, having a cloudy head...not thinking straight, memory problems, physical problems etc.
Finally, I will explain a little bit about the dialyzer machine.
The dialyzer is basically a big, fake kidney. We usually will hook up 2 needles into the patient. One needle to pull blood out of the body, and then one needle to return the blood to the patient. It's a big cycle and it's actually very cool to watch. The blood is pushed through the fake kidney and it cleans the blood by taking out the bad stuff. It's like a strainer...The BUN, Creatinine, Potassium, etc is caught in the strainer because they are too big to go through the holes. While the blood is smaller and is able to go through the holes and back to the body. And then we return that clean blood to the patient. You can google more information if you'd like. I just gave you the jist of how it works in a very basic description. It's easiest to understand that way.
Most patients are on the machines for 4 hours every other day. (3 treatments per week) So Monday, Wednesday, Friday or...Tuesday, Thursday, Saturday. Some people stay longer, some have shorter treatments.
These are NOT stupid questions what-so-ever. Please feel free to keep questions coming. Knowledge is power when it comes to your health.
Wow. Thanks claporte :) that's insane how much weight can be collected just from a couple days. I am doing my best to still make each day count, but that journal idea sounds like a good way to keep up with little goals and stay motivated. You really don't think you could be the one to end up sick til its you. Hindsight is 20/20 I guess, and between the drinking at a young age, the recreational consumption, the stones, the uti's and that massive infection, I can see where I went wrong. Hopefully my body will adjust to our new diet and routine quickly so that we can put off being poked with sharp things for a while (I have a huge terror of needles. My 6.2 brick wall of a bf had trouble holding me down for a blood test once even. Definitely a flight person XD)
I hate to be a bother, but is there anything you can tell me from a daily living perspective? What are some of the unforeseen challenges your patients have had to concur maybe?
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Not a bother at all. ;-)
Challenges many CKD patients can face:
- Dialysis. No one wants to spend 4 hours every other day sitting in a chair, and getting poked by needles. It's boring, can be painful (sitting there for so long can make any body achey) and you just don't want to be there. We try to make it as easy on patients as possible. We have a TV for each patient. We can lay the chairs back so you can nap, you can have blankets, pillows, food etc that you can bring in. You can read. But still, 4 hours is 4 hours. That's probably the biggest complaint that I have. Luckily my patients would rather sit there all for the 4 hours compared to the alternative. :? Most are in good spirits though...They try to make the best out of it and we have really great staff that makes the time go by a little faster for most.
Depending on your lifestyle, you might be able to have an alternative type of dialysis. Hemodialysis is when you come to us, sit in the clinic and hang out while your being treated. But...There's the option for home hemodialysis. If you have a family member that can help you out at home, you can dialyze yourself right at home! Supplies get delivered directly to your home. You are trained how to work the machine and hook yourself up.
There's also peritoneal dialysis. This can be done either a couple times a day (usually 4 times a day, takes approximately 30-45 minutes each time) and this is where you have a tube place in your "stomach cavity" (It's actually a little bit lower, more in the pelvic area) and you fill that cavity up with a special fluid. This fluid is "clean" and works similar to a vacuum where it pulls the bad stuff out of your bloodstream and then you'll empty out the cavity and be done until the next treatment. Many people that are still active go through route because of the flexibility. Your at home. You can still go to school or work or whatever. As long as you do your treatments.
Another option is a different form of peritoneal dialysis. Instead of 4 little treatments throughout the day, you do one long one while you are sleeping. You hook yourself up, go to bed, wake up and take yourself off and volia, your done until the next night. :D
If your terrified of needles, one of the peritoneal treatments may just be the way to go...If that time comes for you.
Now back to daily life of a dialysis patient...
There's the obvious diet restrictions. Minimal salt. Minimal Potassium. Minimal Phosphorous. Minimal amounts of high quality protein. Fluid restrictions. Follow the diet your doctor has given you. Many of my patients sneak chocolate candy bars and they aren't allowed to have them. LoL. (That's when the kidneys completely stop working)
By the way, stay away from Starfruit. Never eat it. There is a neurotoxin in it. People with normal working kidneys can just flush it out. People that have kidney failure, cannot. Dialysis cannot clean it from the system either and it causes neurological problems. :shock: So don't eat it!
Many people with ESRD (End Stage Renal Disease...No kidney function left) often feel weak, tired and sick. A lot of times that's due to them being anemic. The kidneys produce the hormone erythropoietin, which stimulates the Bone Marrow to produce Red Blood Cells. When the kidneys stop working, that hormone stops being produced. So...The Nurses at our units give supplements for Albumin (protein/iron supplement) and to stimulate RBC production. That way they won't feel so...worn out.
Most patients realize that they still have a quality life to live. I don't hear too many complaints. Besides the diet, time spent at the clinic and feeling tired/sick. I think we have gotten most patients to the point where they are feeling pretty good again.
Many patients will have other issues going on as well. Diabetes and cardiac problems are at the top of the list. Those patients will have a list a mile long of problems...
Also, most of the time, the needles aren't so bad...We have different styles of needles. Patients are required to have either a Fistula, Graft or Catheter in order for us to dialyze them. The Catheter is placed in the chest and is placed in a vein that goes directly to the heart. This is the WORST possible access that someone can have. Because of it going directly to the heart. The chance of infection is raised considerably. Avoid these like the plague if you can...
The Graft is a loop that's placed in the forearm. These are pretty good. But needles are required.
The Fistula is the access of choice for everyone. The risk of infection is the lowest. And with these, we can eventually use "blunt" needles instead of sharp, pokey ones. The Blunt needles are placed in the same hole over and over like a piercing. So the pain becomes almost non-existent with these.
But a lot of this stuff is extremely far in the future for you. :wink:
Follow your doctors orders. Research online. Ask questions. Keep the journal. Keep your head up and keep a positive attitude.
Thank you for all your help :) it doesn't seem as scary anymore, and its nice to know there are options as far as my eventual treatment. Who knows, maybe by the time I need dialysis, they'll have something pain free and time saving lol. Being only twenty one, I was worried I wouldn't be able to keep up with my horse, my barn, my classes and my hyperactive redneck man. I had about an hour of "I haven't even reached thirty and my life is slipping". I think my bf is still on the fence, He's not sure if he should take it lightly or become the kitchen drill sergeant. But it seems manageable and like the worst of it is still far off. It sucks, but its something else to be proud of when I overcome it :) thanks again, its a huge help. :)
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I'm glad to help ease your mind. There isn't any reason you can't have a fulfilling life. You are your own advocate and you are the only one that can step in your path. I truly believe in the power of positivity. If you have a negative view on life, you'll never be happy.
Keep up the good work. Have a close relationship with your doctor. Take the support of your friends and family. Break down and cry every once in awhile if you need to, and then start the next day with a good attitude.
My email is claporte432@AOL.com if you ever need anything.
Good luck to you. :-)
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