Hi Norma,

Dehydration can lead to raised creatinine levels, which will give you a lower eGfr (estimated level of function). We all need to try to drink more water, myself included. I'm always dehydrated if I go out, because I don't want to spend the whole time looking for toilets! I drink normally when at home and in the lead up to blood tests, though, to avoid them being skewed. as for the caffeine, thus is said not to affect creatinine levels ( though may increase cyst growth), so don't beat yourself up about one cup in the morning.

You could still be quite a long way end stage Norma. Worrying isn't how you want to spend your time, I'm sure. Try taking in more fluid and see whether your labs improve. Even at 25%, you can't know how quickly or slowly things will progress. The decision about dialysis is yours to make, but you may be some way off that point. There are so many factors to consider, it's not a choice to be made without very careful thought. I understand your feelings about not wanting to go through it; I don't know what I will do when the time comes. Many will tell you that it's not as bad as you imagine.

You're doing really well with keeping fit at the gym and in the garden - that's so much more than I can manage. "Just add water" and see what happens.

Chewitt

Norma, age is a number and someone as active as you should hardly call herself "elderly". I have an aunt age 94 who recently broke a hip and is working at walking again.
dehydration will elevate your creatinine. I don't know that caffeine will. I never gave up coffee, would fight tooth and nail to have my one cup a day. I can barely function till I have it.
nobody wants to go on dialysis but consider this, many of these elderly people (really elderly, not in their 60s) are already badly debilitated, most don't produce urine and require fluid removal
for me, with a positive attitude, I did quite well on dialysis, being in control with home hemo helped a lot. you sound like a person who would want to control your dialysis too and not be dependent on a center to do it "to" you.
life is precious and to make a decision to give up, when there is still so much to do, seems really cowardly to me. an awful lot of people get through dialysis with flying colors and continue to enjoy life. why shouldn't you be like that when, and it may be quite a while, that time comes?

Norma- I am glad you came here and posted. This site has been so helpful to me during different stages of PKD, from initial diagnoses, to rapid decline of kidney function, through a nephrectomy and now on dialysis for 2 months. I don't know much, but I do know this... if your labs come back radically different than normal, please go get them repeated. Sometimes something as simple as someone not doing certain tests soon enough. I had to cance a Christmas vacation once because my Potassium spiked. I had it redrawn at the hospital STAT on Christmas Eve and by the end of the day my doctor was calling me to tell me I was fine. Take care and check back often. You sound very courageous to me.

I am not as knowledgeable as most of the people here but i do know that my gfr drops when i am dehydrated. Hope that help :)

Ash

Hi Norma, so glad to hear from you, I have missed you.

Yes, dehydration certainly will lower your GFR and raise your creatinine. I agree with the others... and hope that just talking about this will help you be calm and not anxious about the distant future. You are a wise woman and have taken good care of yourself.

I remember how I wanted to NOT go on dialysis, but it seems as if our imagination and fear makes things a lot worse than it really is.

Blessings, and please keep us all informed on how you are doing.

Heather

Good Morning Everyone and thank you for your contributions, they really helped me a lot. I have a sister that is 76 on dialysis, she also has lung cancer and has survived stage IV ovarian cancer. Her life is a living hell. They keep doing things to her to prolong her life and she wants no part of it anymore, she is suffering unbelieable. Having to go to dialysis every other day is a nightmare for her. She leaves there exhausted, sicker than she was when she began the session. It isn't a pretty picture for the elderly and when you reach 70, you are elderly, old, whatever the term that fits you best. I live in constant pain every day from spinal stenosis, that is difficult enough to live with, I simple cannot imagine being on dialysis, no this is not an option for me. If I can continue working out at the gym, which is the elipitical, the treadmill, and some weights, I can keep myself in decent enough shape. I too am fairly certain that I was dehydrated when the labs were done as my GFR was 35 3 months prior, to drop to 25 that fast, really had me scared. My kidney doc jumped right in to tell me that we really should begin the workup for dialysis, meaning the shots for hepititis that are required. I kindly refused and told him I was not going to go there, not now, not ever. I think I'am going to take Chewitt's advise and remain positive that this might be a long way off and try to drink a lot more water than I am.

One thing that really bothers me is this. I go to the doc's feeling fine. I get there and they tell me that my labs are not good, for instance my phosphorous is high or my potassium the next month, each time I go, there are different results. One time it's good, the next time, it's bad, good, bad, good bad, all of the time. I am frankly sick to death of it all. I've been doing this for 15 Years! I am considering changing doctor's or stop going to a kidney doctor all together. I know that I'am ranting and raving, but as you can probably tell, I am sick to death of this all. I feel fine other than the spinal stenosis which there is nothing anyone can do for me. My conclusion in all of this is that kidney doc's are taking advantage of people like ME, with type II PKD. He is part of a group that OWNS a dialysis unit, need I say more.

Thanks again everyone,
Norma...

saying your doctor owns part of a dialysis center is all you have to say. I had a similar experience early in my kidney failure and the doctor told me I had 3-6 months before I needed dialysis. after prescribing a dose of bp meds for me that may have done serious damage (luckily for me I questioned the dosage and stayed where I was) I changed nephrologists and instead of 3-6 months it was 18 months before I needed dialysis.
just a sidenote, some time ago I heard of a dialysis center that offered exercise bikes for those who wanted them, those patients did much better than the sedentary ones. home dialysis would allow the same thing.
I strongly recommend changing doctors, it may also change your outlook on dealing with this problem. a doctor with a positive attitude can make a big difference in your treatment and how to feel about it. seek one who advocates home dialysis instead of in center, be it PD or home hemo.
you have people here who care deeply about you. don't let us down.

Norma- I read your post again. You know, your GFR at 25 and creatinine at 2 is definitely high enough to keep going for a very long time without dialysis. I think you should get your labs repeated and go to another doctor. They wouldn't even evaluate me for transplant until I dropped under 20. My doctor says most people lose about 1 % of function for each year they live. I got my kidneys removed when my GFR was 18 because there was no room for a transplant and I was always in pain and having bleeding cysts which REALLY hurt! I have to say I hovered around 25 GFR for quite a long time (about 5 years) and felt really pretty good. How are you feeling, other than the anxiety that all of this is provoking. If your are really old, as you say (and I don't know what that means) you might be where any person your age would be. PKD is not a death sentence and about half the people with it will eventually need to have a transplant or dialysis. Please do not make any radical decisions before getting a second opinion. A second check of your labs, getting a repeat, and having someone else evaluate your system might give you a totally different opinion. I know it is really scary, but you will be so happy if your current doctor is mistake. My first nephrologist was an absolute jerk, so I went to someone else. I also always get copies of my lab reports and put them in a folder. It was helpful for the transplant team of nephrologists to see how I progressed over the years, and I imagine it might be helpful for a 2nd opinion doctor tto see what has been happening to you for an extended period of time. I hope you go see someone else. I do know this, when you think you might need dialysis it is really scary, and then when you find out the doctor was wrong the joy you would feel is unbelievable. Please keep us posted, and you might want to pay close attention to what spiderwoman has to say. She has been through everything and has always been accurate with everything she ever told me. Including telling me, in essence to stop feeling sorry for myself and get with the program... At first I was insulted but then changed my way of thinking. It allowed me to have my nephrectomy, and now I am on dialysis. It's taking time to learn everything about it and get "used" to it. But you know what? Everytime I go for a session I come out feeling grateful. I see people in way worse shape than me. Blind people, people missing hands and feet because they have diabetes and for whatever reason had to need dialysis. I know I will probably get a transplant in the next couple of years, I and WILL hang in there until then. Please keep us posted. I hope you follow the advice of the people here, you just might be pleasantly surprised!

What a great group of people, with such good examples from their own lives, and encouragement for you Norma. And yes, I was thinking yesterday when I responded that your sister's situation would possibly have an effect on your attitude about this, and I am sure it would for me as well. I know that I had to get over my mother's experience before I could get onto my own life with PKD.

Yes, those differing labs.... I start thinking about them a day ahead of time, or more. Now two months ago my glucose was very low and my doctor freaked out a bit (as you know, I do like this doc, he's been very helpful) so he wanted me to stick my finger every day and keep a log of my glucose. Well, for a gardener, sticking your finger (even though I wear surgical gloves because of my transplant) was not something I wanted to do. Thankfully I had troubles with the pharmacy and my insurance company with that so I drug it on. Then I discovered that MINT (of all things) interacting with my immunosuppressants (from my regular Sleepytime tea) was making me very nauseous in the morning, which of course caused me to not eat and therefore my early morning labs with low glucose. This of course I had to find out on my own. But, when I went back the next time I told him the whole story, and that I was sure it was an anomaly, and my blood sugar was fine.

So, hang in there, and I hope that you never do have to go on dialysis. But don't let the possibility hover over all of your lovely "todays"... Today is all we really have for sure.

Blessings!

Heather

Hi Norma,
It certainly wouldn't hurt to get a second opinion, especially if you are uncomfortable with this neph. If you are not anemic, which is a big sign of end stage, I don't see the hurry. Good luck,
Deb

Thank you all so much again, I never knew just how helpful you all could be. I have been on this forum for almost 5 years now and have always been on the other end, seems as if it had to change and I am the one receiving the help. Gosh it's sort of overwhelming when it always used to be me helping everyone, now I have such wonderful friends on Daily Strength. I will take into consideration all that you have said and for sure I am going to get another doctor and another opinion. Early on in my life, when I was in my 50's, I went to see my first kidney doctor and he told me at that time, he didn't think that I would ever go into failure and to put it out of my mind, I guess that I really did, so you can see why this hit me so hard and I went off the deep end, so to speak. Don't worry Helen, I won't dissapoint you or Heather or any of my other old and new friends on here...

lots of love,
Norma...

Norma, I remember when your husband was so ill and how you fought to help him through it. I know how strong you are.
that doesn't mean you should go it alone, we all need each other.
tho I may seem to be the one who reaches out to others, I was in the other boat too and the support I got from an on-line support group gave me so much strength.
I believe in anonymity because at times we may feel safe here telling things that we wouldn't even talk to our best friend or spouse about. I did meet a few support friends in person, nearly met PKDLin in June but weather etc. changed plans. still, sharing anonymously has been a great help to me.
touch us when you need us Norma, be sure we will ask the same of you.

Hi Norma- I hope you are feeling better today :-) . At dialysis yesterday, I mentioned your situation to the charge nurse (she has been working with dialysis patients for 30 years, sometimes I think she knows more than my neph. about it). She was totally shocked! She said there are FEDERAL laws about when a patient is allowed to be started on dialysis and you are NOT there. Yes, Stage 4 kidney disease is when your GFR is between 15 and 30. But if your doctor puts you on dialysis at a GFR of 25 he will be breaking the law, and no reputable Dialysis center would admit you for treatment at your current level. For your doctor to ask you to think, a little, about it and to educate you about this is what he should do. For him to INSIST you do it now is both unethical and illegal. If you like your doctor, talk to him again and make sure you heard him correctly. At this time it may be beneficial to have a someone come with you. On more than one occasion that has been very helpful to me. More than once I have panicked in the office and what I heard and remembered wasn't exactly right- even wrong a couple times. Many people here have recommended that you at least consult with another doctor. I think that is a great idea. And if you current nephrologist has a problem with it, then that should tell you something. The first time mine told me we might have to start thinking about dialysis I panicked, what i "heard" was that I needed dialysis. Those are two very different things. People at GFR level of 25 can live perfectly normal lives. I know that it is a drag to have labs all over the place, and the constant fear and anxiety that can occur when someone tells you that you need to start thinking about dialysis. I will tell you this. The more informed I became the less fearful I was. Yes you need to know about this disease and how it can progress. The truth, from what I've found, is this. 50% of the people with it will need transplant or dialysis and the other half won't. My doctor said from the very beginning (I was 35 when I found out) that if I made it to 50 without too many problems I would probably not have to go for further treatment other than to see him every 3 months and to keep taking my BP medicine. For me, during my 40's my kidneys started getting bigger and bigger and I started having problems with infection, severe chronic pain and bleeding cysts. My function was at 19 when I ELECTED to have my kidneys removed. I could have kept them, but we both felt that eventually I would need a transplant or dialysis. We wanted to try to get a transplant before dialysis was needed, but it didn't work out that way. i was sick of the pain and and taking painkillers all the time so I went for evaluation at the hospital near me that does that. They told me on my first visit if my GFR come back at more than 20 I would have to wait for them to evaluate me, because of Federal law. It came back at 18 so we proceeded. I had to have my kidneys removed because they were so huge that if a donor came up they wouldn't give it to me because there was no room in there for one. At this hospital they don't do nephrectomies and transplants at the same time, they feel it is too dangerous. So I had them removed. I am so glad I did. Now I am on dialysis, and for me it is hard getting used to, but I don't have that pain that made it so I could barely breathe. I hope that now that you've had some time to think about what your doctor said and to read what people here have posted that you aren't so panicked. I used to panic all the time. Then I got educated. I am glad you came here instead of just doing what he said. Ultimately, you are in charge of your own care. However, being in charge of yourself means being responsible and knowing all of your options and what each entails. On the internet the PKD Foundation has a great site, and so does Davita. On both sides you can find out lots of interesting things and read about other people's experiences. Write down any questions you might have and discuss them with the doctor or new doctor. The most important thing to remember is you are not alone! You many compassionate and highly informed experienced people, right here to help you every step of the way, and I think we all know about the panic and fear that can accompany new news. Please keep us informed. It works both ways... your sharing of your situation helps us, too. Sincerely- Deanna

When my mom's kidney function dropped and her doctor said it was time for dialysis, she (initially)refused. She was only 57, and was ready to give up the fight. I begged her to reconsider, and literally threw myself in her lap hugging her to remember those of us she would leave behind. I even bargained with her, and asked her to try it, and if it was too difficult then we would support her decision to stop.

It's been 7 years, and she is still going to dialysis. It isn't easy, and she has some rough days. (She also has some other serious health problems.) But she still enjoys life, watching her flowers grow, spending time with her grandchildren, etc.

I realize that we don't know each other, but I'll ask you to reconsider too. I know you're a fighter, by reading your prior posts. You can be the inspiration to your children that might also be fighting this disease. Let them see that it might knock us down, but the fight isn't necessarily over. :-)

hi, mymom is 91 aand her gfr has been at 25 for 3.5 years. Hers went down to 18 and after being treated for anemia it went up to 25. she sees her neph every 6months and her regular dr oders tests every 3 months unless the numbers are going in the wrong direction. no one has ever spoken to her about dialysis. Watch your creatine and cholesterol and whatever else you should watch, just don't waste time worrying about dialysis, from what everyone has said on this board you will know when you feel bad its time to consider your options. hope this helps.