You didn't do anything to deserve this, it sounds as if you are a pretty decent guy, but being a human being seems to be the problem. We have more diseases that anyone could shake a fist at, and where did they all come from? Your guess is as good as mine. Just for the heck of it, I want you to know that I suffer from arthritis so bad that I almost have no quality of life anymore and thats a tough thing to deal with when my husband has been sicker more this past year than ever in his life and he needs me!! PKD is not the only disease in this world as you already know. We just have to have the strength to get through it all somehow, and we will. Continue on your good path in life and it will pay off eventually, I know that for a fact, just keep the faith honey and it will turn out ok. Keep on trying, you will get there, I promise you that much!

lots of love and hugs,
Norma....

a lesson we all have to learn is life is not fair. some really rotten people have what seems like great lives, but of course we don't know what goes on behind closed doors.
you have the wonderful opportunity of possibly preventing kidney failure with your Tolvaptan, that doesn't give you a pass against other diseases tho, unfortunately.
as Ruth always told us, PKD is not limited to the kidneys, it is systemic. your problems may be related to PKD in one way or another. preventing cyst growth may not stop other problems.

What did I do to deserve this? I have asked myself that many times. Or I ask, what lesson am I supposed to be learning here?
It's frustrating to have PKD and have other things going on as well. On many days I feel I can barely deal with the PKD symptoms.
I hear you.

I apologize for being so negative. It's really out of character for me.

Quite frankly I'm pretty lucky. First of all, I can still do everything I want, with some lousy days thrown in as reminders, and I'm probably more active than anybody I know with only a couple exceptions. There are certainly people who are far worse off than I am, and for that I'm very lucky.

Secondly, and I don't mean to sound morbid, but I realize I'm going to die. Obviously everybody knows they will pass away someday. But to realize that it is something real, and will likely happen sooner than I wish, makes me want to live life more fully, to have more experiences, and get as much out of life as I can, as often as I can. Before I knew I had PKD I used to have "someday syndrome." Now I'm no longer waiting. Instead I seize every opportunity when I can. I'm living my life now instead of wishing I had when it's too late. That makes me lucky I have PKD!

You're entitled to be negative once in a while. And you certainly shouldn't feel as though you can't complain because others may be suffering more. My husband always says to me (example) ' What about so and so who cant walk - think yourself lucky'. Well I don't and I am very sorry for so and so but it does not make me feel any better knowing someone is suffering more than I!! Secondary health problems can be a bigger bitch than PKD so never apologise for complaining to us on here. I am very sorry about this new condition you are suffering with. It sounds pretty awful and you certainly don't deserve it. I am very glad that you are grasping every opportunity with both hands and this in itself shows what a poitive person you are. I recently underwent a big operation and it made me realise how fragile life is. I am not yet in a position to grab at opportunities but I am getting there and reading posts such as yours, although a little upsetting can also be very inspiring. Stay strong- we are all with you x

You are a good guy, and you know it.
You didnt do anything to deserve this, and you know it.
The fact that you ask yourself what you did to deserve this, knowing you didnt do anything proves that you are only human, just like the rest.
Hang in there, and be as tough as you can be, that will be more than enough to pull you thru.
And yes, you will someday die, just like everybody else, but it is still not your turn, and won't be for a very long time. Actually, focus on the fact that you may have some rough times ahead due to PKD, but you will die of old age, many many years from now. Focus and make it a fact that you will not die of PKD, NOT NOW, NOT EVER.
Regards,
PKDAD

Life just keeps throwing bumps in the road, that we have no say in, except to handle them, one day at a time. You are doing that.

Hi, I am new to this group. I just wanted to tell you I too am on Tolvaptan and have been since phase I. I count myself lucky that I got into the trial from the beginning and now the drug may have helped me. My creatine has been unchanged at 1.1, for 7 years now and I am 52 years old. My sister was not in the trial and her creatinine is rising. Lucky for you to get into the Tolvaptan trial!

Keep up your healthy life style and proactive philosophy.
Blessings,
Pam

just a story about life and what we expect:
I have hair straight as a pin and considered myself so lucky to have a daughter with beautiful curly hair.
as a teen she would fight her curls and once, in tears, she was complaining about her curls and I told her that some kids didn't have arms or legs. her answer was, "yes but they don't have curly hair".
always remember, PKD and its related problems are terrible, but at least we don't have curly hair.
(apologies to those of you with curly hair)

I ask myself that question too. I think we all ask that question at least at one time or another. But we do have to remember how blessed we are. I have several friends right now that have been diagnosed with terminal cancer. One day they were thinking they were fine and now they are having to deal with the fact that their time left here on earth is very short. So, when I start feeling bad for myself I try to remember that at least we have choices of dialysis and or transplant to help keep us alive with our disease. These friends of mine have no hope for a treatment. I don't look forward to what lies ahead with this disease but I am thankful that that it's not a death sentence. But I'm also thankful that we can post on here and vent our frustrations with other people that understand and have the same feelings as we do. Hang in there! My prayers are with you as you face another challenge.

Hello~I am new to the group too. I almost 40 and I think I am stage 3b of kidney function.
I also have raynauds. It is annoying but I kind of have gotten used to it. It can be a uncomfortable when my hands and feet take awhile to get warm (but I think it actually looks worse than it feels...taking a bath helps). I have had it I think since I was about 35--or at least to the extent where I had to ask a doctor what was going on.
Are you in the HALT PKD study? I am in that one in Boston.

I get discouraged sometimes too...it is awful when I have issues with my cysts (actually discouraged is a pretty mild word...I tend to feel like it is all over during those times). The last thing we need is a new symptom. Anyway, I am rambling but I am really happy to see that this group is here. I really hope you feel better soon.
Sue

I know what you mean about not realised quite how awful you feel until you feel better Slickrock. I have to remind myself during the bad times that, so far, things do improve eventuLly, even if it takes a long time. Over time there's been a gradual decline for me, but there are still better days to hold on to.

My father and cousin have been diagnosed with Raynauds Disease, and I have all the symptoms myself (since late teens). I hate cold weather, and wear gloves (Polar quality)from October to May! It can be so painful I could cry. When the weather is very hot I feel ill. Good thing I live in the UK!

Anyway, we haven't done anything to deserve any of this .It's just bad
luck. All we can do is try to look after ourselves, and keep the good days in sight.

Hope today is a good day.

Chewitt

Slickrock,
I've sufferered from Raynauds Syndrome for nearly 30 years and have never considered it to be related to my PKD or massive polycystic liver. It's just a circulatory problem with my hands and feet (my toes and feet also make the same color changes and it can be absolutely excrutiating...I'll take the numb over the period when the blood is returning back to the fingers and toes any day!). I'm one of those people who actually carries gloves in my glove compartment and I use them yearround, even the the middle of summer, if I'm going into an airconditioned store.

There are some medications (including calcium channel blockers, a class of BP medication) that can help with Raynauds, but I found none of the them to be successful and already take a handful of meds every mornign and night and don't need any more to add to the compliment of pills. So my way to deal with this is to be preemptive.

Find your triggers (beyond just the cold). I cannot hold anything cold in my hands without experiencing pain, so we have koozies (sp?) all over the house and a plethora of hot mitts and hot pads for me to use to hold a cool or even room temperature item. I wear fingerless gloves or even fingered gloves to type on the computer (depends on the day and how I'm feeling; my right hand tends to get colder because it gets less use due to just sitting on the mouse clicking away while I'm sitting on my left hand keeping it warm).

Instead of wearing gloves, where each finger is on its own to generate heat or retain what it has, go for mittens, or wear gloves INSIDE of your mittens. And never, ever go outside until you have all your gloves and mittens put on; just a few seconds of exposure to the cold can set you up for hours of misery later.

And keep your hands (and feet) clean and moisturized. The cold saps the moisture out of your skin and a lack of moisture is just going to make this worse (trust me on this one!). Paper also saps moisture from your hands (which is why people who do a lot of paperwork not only get papercuts but always feel like their hands are dry; it's the paper picking up the oils in your skin all day long!). Use hand lotion and reapply often!

It's essential to dress for the weather, top to toe. Hat on the head, scarf around the neck, gloves AND mittens on the hands, layers of clothing instead of relying on a single layer to keep you warm, and some good, thick, socks (Smart Wool makes some great ones in varying thickness, including some that look like trouser dress socks, but will keep your feet much warmer than that think cotton or rayon sock ever will; rei.com has them on sale on a regular basis).

This isn't the end of the world and you too will learn to manage this. To defrost your hands, try running them under cool water and then increase the temperature to warm as your hands go through that yellow/green/purple phase (never go for hot water as you risk damaging the blood vessels and causing more problems). Then slather on the lotion and you're good to go! Or have a conversation with your boss and co-workers and freak everyone out while they watch your hands change colors (it will help you keep your mind off how you're feeling and it really does freak them out as your hands change colors).

Good luck and welcome to the Raynauds club!
Ruth

PS While shopping, bring gloves or mittens and use them to pick out any refrigerated or frozen items. Your well-being is far more important than what someone thinks about you (in fact I've had so many men and women alike tell me they wish they had thought of bringing gloves shopping with them that I suspect that frozen hand sensation is far more common than we think it is. So put a pair in each of your reusable shopping bags and you'll be set (I, on the other hand, have just have my husband do all the shopping...long story). :)

Ruth,
Thank you for such well articulated good advice. I've actually realized some of your suggestions out of sheer necessity. However, it never occurred to me to have fun by mesmerizing my co-workers with my color-changing hands. That actually sounds like a bit of fun and fits my personality quite nicely. This is going to be a hoot!

Thanks a million!!

so good to hear from Ruth. her suggestion about gloves is great. I often wear 2 pairs and occasionally mittens over gloves. double socks is a good idea too, thin first with fuzzy ones over them keep tootsies toasty.
as Ruth says, this will become part of your life and you won't even give it much thought if prepared in advance.

We don't get this because we did anything wrong. It either came with your sperm or egg and conception (unless your in the minority that had a mutation- which I did, lucky me) but either way it is genetic. It doesn't matter how nice you are or aren't. Sometimes I ask myself the question of "why me?' when I'm feeling down. The answer to that, for me, is "why not me?". This is not to minimize your feelings. You don't have to compare yourself to other people then feel guilty because it seems like other people are worse off than you. It's ok to get mad, sad, depressed and so. Anyone who has had this for a while knows that we go through periods of being ok with it to periods of really hating it, no matter what stage we're at.. Keep doing good things, I am sure you have good things in life too. It sounds like the Doc that says you have Raynaud's and that it has nothing to do with the med is working for the Pharmaceutical Company running the trial. If you didn't have this before maybe you want to check with your regular neph who has no vested interest in this other than your well being about this. It' s a clinical trial... if a bunch of other people had the same symptoms, do you think they would tell you... in truth that would compromise the data- I teach physics so I understand the scientific method backwards and forwards. To keep it purely science they wouldn't tell you if a bunch of other people are or are not having the same symptoms. Just a thought and I hope you feel better ...