New to the community!

[Ladybug_05]

Hi all! I am a 20 year old college student (biology education major) and I currently have stage 4 CKD. I'm getting ready for transplant and I'm hoping that one of my family members are a match and I can get my transplant before dialysis (currently 18%). It's sort of weird for me because I was born with only 1 kidney due to having VACTERL syndrome (or VATER association) and I've been dealing with this my whole life. I try to stay active whenever I'm not sleeping...which is hard because I sleep most of the day now if I don't have multiple alarms set and I'm currently on a renal/diabetic diet hybrid.

I was hoping to be able to hear from other people about their experiences having the disease and was also hoping to hear from people who are already on dialysis and/or going through the transplant process as well! I know that I have a long road ahead and am open to advice on exercise ideas, food ideas or just a take on another's experience. Thank you!

[worldnurse1]

CKD stage 4 for many years. Not on dialysis and trying to avoid it altogether. Per my Nephrologist's advice have begun the transplant process. He (very renowned) says as long as you're still urinating you may not need dialysis. Of course monitor blood chemistry on a regular basis, and keep a low salt and low phosphorus diet. I do feel fatigue, which comes and goes. Taking things one day and week and month at a time.

[Ladybug_05 in reply to worldnurse1]

My nephrologist says that as well. I'm glad I'm not the only one taking things one day at a time!

[worldnurse1 in reply to Ladybug_05]

Very nice to get your perspective! May I ask if you're on dialysis, or considering it? If you prefer not to answer I understand.

[worldnurse1 in reply to worldnurse1]

Sorry, I missed your first comment where you said you're not on dialysis. I find that there are some days where I've literally slept all day, but, more recently, have (for whatever reason) felt reasonably more energy and ability to stay awake. It's important to have family or friends around you who understand your limitations, and accommodate your need for rest or sleep. This is a Medical Problem those of us in this community share. Sometimes I encounter someone who says I'm just lazy; this is incorrect. It's somewhat depressing when interacting with someone like that. Remember the truth of the situation.

[Dustypye in reply to worldnurse1]

I'm 45 and stage 4 with 18% function. I was born with only one kidney (and it's not even in the right place). I've been on the transplant list for 7 months and my wife is wanting to be a donor.

I'm constantly exhausted and sore. My memory is shorting out on me too. By Wed my brain is worn out and it's really hard to focus and remember anything.

It honestly feels like I can't remember a time when I wasn't tired! I work full time but my employer has been very unsympathetic and non accommodating.

[Ladybug_05 in reply to Dustypye]

Dustypye it's also great to hear from you! Have you reported your employer due to their violation of ADA laws? You should be protected.

I've been lucky with accommodating employers only because I give them multiple documentation letters from my doctors explaining my situation.

I hope that your wife is a match! I've been told that a living donor is preferable and lasts longer as well.

I'm sorry that you're sore all the time. I have memory problems as well as chronic pain and it gets old very fast. I've found that ginger root baths help with chronic pain; maybe that could help if you haven't tried it already?

[Ladybug_05 in reply to worldnurse1]

I understand completely how vital it is to have a support system who understand the limitations. I have been told that I "don't look sick" from classmates. It also doesn't help that I've earned high grades all of my life so people don't believe me if I say that I have CKD and it's very hurtful at times. I've come to view it as a teaching moment about people with invisible illness. I don't know about you but I've been looked at with astonishment from doctors because of how I live my life and how healthy I look given my circumstances and I've learned to take it in stride.

[Dustypye in reply to Ladybug_05]

I'll look into the ginger root! Thanks.

No one's told me that I don't "look sick," but I know they don't understand how horrible we feel. It's like my body is literally poisoning itself to death.

I'm hoping to get my new nephrologist to write a letter for me that tells my boss the challenges I have. My boss is kind of volatile. I never know if he's going to be indifferent or start screaming. I'm not afraid of him, but I am afraid he'll tick me off and I won't hold back.

I tell people, "you know when you've had a long day and you get home and you just want to rest and some little thing happens and it just sets you off because you're exhausted? Well, I'm like that all the time." People seem to understand that.

[Bassetmommer NKF Ambassador in reply to Dustypye]

Dustypye, you should not have to work under those conditions. You should report to HR the way your boss is treating you. It called a hostile environment and you should also see about filing a letter from your doctor or a FMLA document for protection. I know, I worked in a situation like that until I filed FLMA. Then my boss backed off. I offer this as another suggestion, but get away from that job if you can. The stress is horrible for you. You spend a big part of your day at work, and why should you put up with the issues of your rotten boss? It is affecting everything in you life.

[JenN18]

I'm 40 and this year slipped down to stage 4. I'm currently on the transplant list, as of a month ago. I'm EXHAUSTED. I have a very physical job and twin four year old boys. I just went down to part time. The bosses are understanding; some of my coworkers aren't. Currently I'm not on dialysis but I've done some research.

My husband wants to donate. He had the first round of testing and goes next week for round 2. I have mixed emotions about him donating. The thought of both of us being out of commission with small children is a huge concern.

[Dustypye in reply to JenN18]

I know how you feel. I wake up tired. I actually can't remember what it feels like to have energy. My wife and I don't have children, but, it's a strange position to be in. I can either hope that my wife goes through a traumatic surgery and recovery or, I can hope to get a deceased kidney, in which case, someone else lost a loved one. I wish I could get a transplant, but, people will have to suffer for me to get one. There's a lot of guilt there. I've only had my wife and my best friend understand this. But saying, "well, someone's going to die anyway," doesn't make it any better.

[JenN18 in reply to Dustypye]

Exactly! I'm waiting for a family to have their worst day ever. A friend's husband had a massive heart attack and passed three years ago; he became a donor. I remember sitting at his bedside hours before they removed life support.

I've always been a giver, a caretaker. I donated blood. I took care of family. Now I need so much help.

Thanks for your reply, Dustypye. It's a sucky position to find yourself in, and a lonely one. It helps to have someone else get it.

[ddwebangel]

Hi Ladybug. You are still young. Tiredness comes with the disease. I know you are on special diets but to help give you energy is to eat foods with lots of iron & protein. Plus I found that vitamin c gummies (I like the gummies) will help put more oxygen in your blood. There are protein bars and cookies that I buy and eat to help with the protein intake. There is even a protein liquid I get when I am on dialysis. I have had 2 kidney transplants and now I am on dialysis 3 x's a week because of kidney damage. I am a very small person so my time on the machine is only 2 hrs compared to normal size people who are usually on for 4 hrs. Keep exercising as much as you can, but also take a nap if you need to. Stay strong. The two things that help me is Psalm 23 and the song "OH OH Child things are going to get easier, OH OH Child things will be brighter." Find a song or something that you can repeat when you are not feeling good. I know I talk too much, but I hope I helped in some way. You will be in my prayers.

[Ladybug_05 in reply to ddwebangel]

I have to really restrict my protein intake (5 ounces a day) so it's very difficult for me to get it that way. I've also found that some foods with iron are also high in phosphorus, so those are a no go as well. I appreciate the advice though I will be looking into ways to incorporate those!

[ddwebangel]

Dustypye, agoJenN18

From what I understand the surgery the donor goes through to remove the kidney is not as bad as it once was.

And please, please don't feel guilty waiting for someone to die to receive their kidney. Both my transplants were cadavers and it is human nature to want to get better even if it means someone had to die to help you live. You are actually giving rebirth to that person who passed away. Good luck to you both.

[Ladybug_05]

Dustypye, JenN18, ddwebangle,

The surgery that most living donors go through are a laparoscopy, which is much less invasive than open surgery. Open surgery is only used if the laparoscopy is unsuccessful in extracting the kidney.

I personally feel guilty sometimes, but my parents always tell me that everything happens for a reason and that at least I can have another chance at living a healthy life. I also view it as a way for someone to give back one last time and to help someone else.

Thank you all for your responses! Good luck.