Oh my gosh Shirley, fatigue is a HUGE symptom of PKD!!!! I have been exhausted for as long as I can remember, it is normal for PKD patients! Just try and maneuver your life around this, but believe me, it is normal for this awful disease". Lots of love, Norma ...

I'm almost always tired and was just thinking about it yesterday. I realised that it's been an insidious creep and that if I don't rest at some point in the day I can't keep going. We had a day out on Sunday and I'm still recovering four days later! I don't know how much fatigue results from each individual factor - carrying around a huge weight in my abdomen; poor sleep; deteriorating kidney function. It all adds up to lack of stamina and poor concentration. The only solution is rest when necessary - not always easy but at some point there's no choice.

Chewitt

My gfr is at 6%. I am constantly tired. If I have a busy day I will sleep the next one away. I try to continue on with small efforts each day.

Thanks so much. I'm sorry we're all tired but I'm glad I'm not alone. It gets embarrassing to have to turn things down that I used to have no problem with. My husband, who passed on last year, used to tell me I was whining about my kidney's when I'd tell him I needed to rest. The message has stayed with me. All of you have helped me see that it's not my fault.

nobody wants to hear this because it contains the "d" word but I remember well the fatigue, brain fog, even blurry vision. also the ammonia taste & odor when brushing my teeth.
my first dialysis session amazingly cleared that all up. even my vision. please believe me when I tell you the fear of dialysis is far worse than the reality.
since I was peeing normally I refused to allow fluid removal (other than that of the priming of the lines. that made a huge difference. no blood pressure drops, no cramping.
my favorite line when encountering a nurse or tech who insisted was to tell them to call my doctor. it never happened. no-one wanted to be responsible for me refusing treatment.

Thank you for this spiderwpman. Dialysis is something I didn't want to think about, not even sure if I wanted it. Sounds like you've had a positive experience, aside from the fact you need it at all. Every little bit of information helps me.

Oh my gosh... that is a VERY important statement by Spiderwoman. I swear, the biggest lesson I learned was that fear is a huge problem. Every step of the way, you have to remember that not only does fear sap your energy, courage, hope, etc... but it just isn't accurate. Life has enough bumps in the road, and this disease has enough fatigue, without taking on fear.

Blessings on your head!

Wise words Heather. I have to remind myself not to pre- live a worst case scenario sometimes. As you say, these are thoughts, not facts. We have to guard against these unhelpful thoughts and concentrate on making the most of the here and now. This is easier said than done, but is something to strive for. As you say, fear is very destructive and it comes from allowing our minds to go down the path of all the worst "What if....s?" until we quickly reach a very dark place not based on reality at all.

here's a "what if", what if I don't get dialysis and I die? will I be admired for my courage?, will my family support or even forgive me?,
while on dialysis I continued to ride my motorcycle, traveled out of state (out of country requires a lot more) while having dialysis in other states, did all I could to keep life as normal as possible.
a simple thought, clean blood beats contaminated blood hands down.

I have considered this very thing, because I am old and my general health is so bad. I even went so far as to research it and the very first thing they advise you to do is talk to your family about not doing dialysis. I have talked with all of my family, they know as they saw the suffering that went on with both of my sisters. If that time should arrive for me, I have their blessings to do what I need to do for myself. You have no idea of the relief it has given me as I have pretty much lived my life for my children and the last thing on the face of this earth I would ever do, is to hurt them. I may change my mind, I just don't know. I will see a new doctor next week and see were my labs stand today. They have been slowly declining, little bits at a time. I am old you guys, I will be 73 this December, not that 73 is the end of the life, by no means is it, but I feel awful every single day of my life and no one will help me. It's not the declining kidney function it's the dam arthritis I have and there isn't a doctor in this city that will give anyone pain meds! I find it difficult to get up every day, let alone anything else. Where we live is the Mecca for drugs. 2/3 of the heroin out there is in NYS! And most of the addicts begin their careers on pain meds, they become too expensive, so they graduate to heroin!! Doctors are not giving anyone pain meds as our federal government us breathing down their necks! So here I sit in pure hell every day of my life. Going on dialysis on top of this pain will never be an option for me. There now I have completed my talk to all of my family. I love you all and hope that you can understand where I am coming from.
Lots of love, Norma ...

Norma, you are doing what you feel is right for you and have the support of your family, besides which, you have had a fairly long life. you don't need any of our approvals but you at least have my understanding.
I was younger, healthier and active when I made my choice and dialysis was nothing like I feared it would be. being my own advocate about fluid removal made a big difference in how I felt but many just accept what is being done to them. we all have the right to refuse treatment and to say why.
they say dying of kidney failure is a gentle way to go and if the time comes and that is your choice, know you will be missed.

Thank you so much for your understand Helen, you have no idea how important it is to me. Maybe it will never go that far, but I don't have a good feeling. I am seeing a new kidney doc on the 13th, we shall see what his take is on this all. The NP that I have been seeing has messed me up so badly that can't take her anymore. I just don't feel as if she is qualified to be making the decisions about my health that she has. I am in such pain all the time and no one will help me. Hey, I GET it!! I understand the drug problems plaging this area, but couldn't they do blood work on me periodically to make sure my kidneys are filtering enough of it out? There are alternatives, it's just that everyone I talk to says NO! Period! I refuse to suffer anymore! And what about all the people with PKD TYPE I, they are in horrid pain!!! Are docs not giving them the pain meds that they require? This country is in such a mess, that I can't imagine it ever recovering!! My neighbor right next door, a registered nurse, 29 yrs. old, the mother of 3 and one with only one functioning kidney, is in JAIL, she is a heroin addict! Has been for the past 7 yrs.!! She hasn't seen her family in almost a year! That is what this country is turning into! Makes me sick and I am one of many that has to suffer because of it . Sorry for ranting on and on, but every word that I type is the absolute truth! I can't even imagine what this country will be like in 10 years!

Lots of love, Norma ...

Hey, my name is Alicia and my mother ha PKD she is currently on dialisys but she is always sad and angry. I wonder if you guys have any advice on how I can help make it better for her.

Hi Alicia and welcome to our group! That's a tough one about your mom as I have a tendency to feel the same way, although I am not on dialysis yet. I saw both of my sisters go through it and they were not happy people either. It restricts your life so much, as if your life is under the control of someone else, does that make sense? That alone would be very hard to swallow. One of my sisters finally gave up fighting with herself all the time and decided to put her fate with God. It seemed after she did that, she was much more at peace with herself, after all, you have no choices anymore, what else can you do? I wish I had some better answers for you but this is all I know from my experience. Hopefully someone else can offer you some different advise. I am sending prayers for your mom, bless her heart. Lots of love, Norma ...

Hi Alicia,

I think your post may be a bit lost in the middle of this thread. Perhaps if you post it again as a new discussion you may have more replies.

Also, if you tell us a little more about your mother's situation we might be better able to help you to support her. This must be very difficult for both you and your mother and you both need support. In the meantime, be patient with her and talk to your GP if your are worried. She may need some professional help to cope with this life situation and her emotions.

Come back to us soon,

Chewitt