Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hi everyone,
So, I've been dealing with the PKD symptoms for 2 years now.
My kidney function's good, my bp is regulated now that I'm on my meds, and my new anti seizure meds for my epilepsy are making my seizures more tolerable. (Although I know they're not good for kidneys which is one of the reasons for this post.)
I'm in pain everyday from my cysts. Not much helps really. There are things that make it duller but it never goes away.
I read so much on here and in other articles about what's good, what's not good, what PKD does and what it doesn't, etc.
Why does it all seem so contradictory?
Why are there nephrologists out there who say PKD doesn't cause pain?
I constantly feel like everyone is thinking I'm making this up.
At the moment I don't have a neph, just a primary care doc who checks my kidney function and gives me my meds. I can't afford one...haven't worked in 2 years and my state doesn't allow you to get medical assistance until you are on disability. (My case is pending and my lawyer is sure I'll win.)
Still, I feel like I'm stuck in this limbo. I can't figure out if my protruding tummy is just because I've been weak lately and haven't been able to move much or if it's my kidneys because I know that can happen and have seen it happen in my own family with other members with PKD. I've been eating as well as I can. (I don't eat much period.) Or if it's my meds causing this weight gain.
I've always been small framed and now my clothes aren't fitting. And maybe it's too much information, but I can't even wear bras comfortably anymore.
I'm only 27.
My body feels like it's 72.
I was always a confident energetic girl.
Now I'm always depressed and lonely.
The silliest part is that I'm usually so positive. When this first all started happening it didn't matter, I still kept my smiles.
Now, I just think it's taking its toll on me as it progresses.
I guess I have a lot of whys in this post.
My biggest source of frustration is probably with myself.
They always say "One man's pleasure is another man's poison" and I think that applies to taking care of yourself.
Some say the protein is no big deal. I even heard a nephrologist say that caffeine wasn't a big deal. Then on the contradictory side they say "stay away from caffeine" and "only eat this much meat."
I can't decide how I want to do this.
I want to enjoy my life and just eat what I want and make the most of it.
But I don't want to be viewed as "she's giving up".
And do I care what anyone else thinks anyway??
*sigh*
Thanks for letting me use this space to vent.
I hope you're all doing well and enjoying the approaching fall.
I am jealous of everyone up north right now :)
So, I've been dealing with the PKD symptoms for 2 years now.
My kidney function's good, my bp is regulated now that I'm on my meds, and my new anti seizure meds for my epilepsy are making my seizures more tolerable. (Although I know they're not good for kidneys which is one of the reasons for this post.)
I'm in pain everyday from my cysts. Not much helps really. There are things that make it duller but it never goes away.
I read so much on here and in other articles about what's good, what's not good, what PKD does and what it doesn't, etc.
Why does it all seem so contradictory?
Why are there nephrologists out there who say PKD doesn't cause pain?
I constantly feel like everyone is thinking I'm making this up.
At the moment I don't have a neph, just a primary care doc who checks my kidney function and gives me my meds. I can't afford one...haven't worked in 2 years and my state doesn't allow you to get medical assistance until you are on disability. (My case is pending and my lawyer is sure I'll win.)
Still, I feel like I'm stuck in this limbo. I can't figure out if my protruding tummy is just because I've been weak lately and haven't been able to move much or if it's my kidneys because I know that can happen and have seen it happen in my own family with other members with PKD. I've been eating as well as I can. (I don't eat much period.) Or if it's my meds causing this weight gain.
I've always been small framed and now my clothes aren't fitting. And maybe it's too much information, but I can't even wear bras comfortably anymore.
I'm only 27.
My body feels like it's 72.
I was always a confident energetic girl.
Now I'm always depressed and lonely.
The silliest part is that I'm usually so positive. When this first all started happening it didn't matter, I still kept my smiles.
Now, I just think it's taking its toll on me as it progresses.
I guess I have a lot of whys in this post.
My biggest source of frustration is probably with myself.
They always say "One man's pleasure is another man's poison" and I think that applies to taking care of yourself.
Some say the protein is no big deal. I even heard a nephrologist say that caffeine wasn't a big deal. Then on the contradictory side they say "stay away from caffeine" and "only eat this much meat."
I can't decide how I want to do this.
I want to enjoy my life and just eat what I want and make the most of it.
But I don't want to be viewed as "she's giving up".
And do I care what anyone else thinks anyway??
*sigh*
Thanks for letting me use this space to vent.
I hope you're all doing well and enjoying the approaching fall.
I am jealous of everyone up north right now :)
It is very good that you wrote your post.
As you well know, expressing yourself in writing is very helpful.
Yes. Sometimes you get contradictory advice. I certainly did.
What did I do? I took the path that seemed the safest.
I chose to almost eliminate meat..
I chose to practically give up caffeine. And NO COLA sodas with PHOSPHORUS!!!
Your body shape is probably due to the disease and not to medications.
PKD CAN CAUSE PAIN!
When I had a cyst burst, THERE WAS PAIN!
But, DJ, we've connected quite a bit.
You are on the mark to be concerned with your attitude.
What you are going through is the sense of "loss of control."
You begin to feel that you are not in control of your own life. Especially your own body.
And you're absolutely right! With PKD, you're not!
You are so aware of your situation, and, obviously being a very sensitive (in a good sense) and aware person, you notice how your "state of being" is not as "lively" as it was at some pervious time.
You are experiencing a "negative comparison" with a "better" past.
I think you can see that this comparison, while natural, is not helpful.
Although it may not sound "ethical," but suppose you compared your "current" state of being with someone who is "worse off" than
you.
It may be unfortunate, but the phrase, "There, but for the grace of God go I" has helped me when I felt "low."
Remember the list of "fears," DJ?
How about a list of strengths and talents.
Kind of like a "personal resume" that you might write to St. Peter to get ino heaven. (I'm not rushing you! :-) )
But such a list will increase your self-esteem.
You're so artistic and expressive.
I'm sure you could express the "PKD experience" much better than most.
Does this help your body? No.
But it helps your mindset. And that's VERY important.
You also know that what you're going through won't last.
Yes. It could gt worse.
It could get better.
Perhaps you will be able to see a good nephrologist.
That will probably make a big difference in the way you perceive your disease.
Continue learning as much about your diseases as you can.
Now, the "lonely" part is another issue.
It might be a good idea to analyze what this "loneliness" is all about.
Are there no people around, or, if people are around, does there seem to be no connection?
If the latter, on whose part is the "connection" not being made?
Yeah, I tend to get a little overboard on the "analytic" side, but my degree is in Engineering and I'm not a poet!! :-)
Basically, the suggestion here is to get to the root of your feelings, and to the best of your ability, take action to do what you can to put yourself in a "better" state of being.
Wow!
I wrote a lot!
Hope I didn't bore you!
BTW, two tough baseball games, huh?
Tonight should be another great one!
Peace and Blessings!
CoachRichie
I know how you feel, I feel the very same way, only I'am 68 yrs. old, (as you already know) It's tough doing this thing, they call PKD, what the heck is it anyway?? I too have had kidney doc's tell me the complete opposite things that I've been told. Eat this, don't eat that, do this and don't do that. I was in complete denial when all of this happened at the ripe old age of 65! Not FAIR, I said, but what do I know, it is, what it is! Don't think so! I hate PKD! I'am in constant pain 24/7 and to think that I'am going to die like this, well... it ...I'am trying to think of a word... I hate it! Period!!!
I wish that I could help you honey, is there anyone that can help you? How about your family, anyone around? If there isn't, I think that belonging to a live support group would really help you a lot! Real, live people are so much better, not that we aren't REAL, but I think that someone your age needs someone to put their arms around you and tell you how much you are loved and will be loved in your life. I hate that you feel that your alone. Is there anything you could do about that thing?
Coach is so wise, isn't he? Take all his advise sweetie and take it to the cleaners... give it a try... Actually I have no one to talk to about my pkd, people think that I'am nuts! they've never heard of pkd as you can imagine and are all my age. They just look at me and my fat stomach and wonder what I am doing to have to this happen. I'am tired of trying to explain, so I don't bother anymore, but YOU have your entire life to look forward to, you can make a difference! Try and think of something that can help all of you with PKD that are so young and helpless, think hard and then...do something!! Yell from the hills and valleys, scream at the top of your lungs, let everyone know what you have PKD and that more than 600,000 people in the US have it as well. Scream it loud and clear. I bet ......when you are done, you will feel better. I pray that you do.
I love you Jen, all of us love you. If there's anything I can do to help you, please let me know, ok? I promise I will do anything that I can to help you.
Lots of love and hugs to the ends of the world,
Norma....
I am very glad you have found this site The people here are just wonderful. They can help take away many of your fears and anxiety about this pain in the butt thing we call PKD. I too have received many mixed opinions. They are removing both of my kidneys so I am eating to protect my heart now. But I did limit meats for many years and I do feel that it has prolonged the inevitable. And please dont befrustrated with youself, This is a tough thing and you are a tough girl, but we all have our moments. But again, the best thing of this site is you can see people that have already gone through what we are facing and they are just fine. So there is a light at the end of the tunnel! Big hugs and kisses, you will be just fine!
there may be foods you have to avoid, concentrate on them and not the ones where there is controversy. if there's controversy its because they really don't know.
foods you MAY have to avoid might be those with high potassium or high phosphorous - and there is real reason to do so, not just someone's theory that it may harm you. if your kidneys won't process phosphorous too much will make you suffer severe itchiness and loss of bone mass. if you can't process potassium too much can make your heart stop. neither protein or caffeine have any effects like that.
as to your belly, inactivity can cause softness but huge kidneys can make you look pregnant. btw, not easy to exercise when you are in pain so don't beat yourself up over that.
also very hard to feel positive when you are in pain.
understand, with what you are going through, your feelings are very understandable. a support group is a great place to say what you can't even tell your spouse or best friend. the anonymity makes it safe and many with the same situation can truly identify.
*big hugs*
You're all so wonderful and I am glad I found this site. I try to stay as active as I can on it and for awhile I did my best never to bring any of my complaints here ya know?
Then I realized I just didn't need to be afraid to do it and that you guys are the only ones who are going to understand. (How silly our minds work sometimes.)
Richie, you never bore me! Your post made a LOT of sense, thank you. And yeah, no one can tell me that PKD doesn't cause pain. lol I couldn't even BELIEVE I read that. It angered me a little, ya know?
Norma, hugs are the greatest thing in the world and I'll have to admit I don't get them too much. My friends are all busy living lives. My family is around but we all can only take small doses of each other and they don't understand what I'm going through. Sometimes I even think they'd rather not see me as much because it's almost like a reminder of what they could experience. (My little brother especially.) Of course these could be my own thoughts but I don't know :/ It's hard to explain...I feel alone in a room full of people sometimes. My best friend/boyfriend takes care of me and I'm thankful for that and he does the best he can but he listens and just kind of sits there with nothing to say and I feel bad because I know he hears it every day and probably feels bad that he can't do anything about it.
Kentucky, yes, DS is awesome! I'm glad to be a part of it. I don't have a fear of the future. I think I'm just having trouble with the present. lol
Spiderwoman, that's the way I look at things. :) In the beginning I went all "crazy" and cut out meat completely and made all these changes I was just miserable with. After awhile something hit me. I even laughed out loud. I thought: Ya know...not eating meat isn't going to make this go away.
Then I went out for a hamburger :)
You guys have made my night, really. I couldn't sleep and reading this gave me a lot of encouragement so I thank you all. :)
xxoo
If you get insufficient protein from your diet your body will start to metabolize your muscle protein.
iI have experienced a lot of muscle atrophy over the last year or so with weight loss and weakness, and now take prescribed high calorie protein shakes every day (I am on dialysis).
My nephrologist does not recommend his patients to limit their protein in late stage renal failure as resulting nutritional deficit can be harmful and it does not in his opinion make a lot of difference to the progression of PKD. Well as you say - you'll get a different viewpoint from different Doctors.
Have you had your iron levels checked lately?.
Over the years the one thing that influences my mood and energy levels the most is my anemia and treatment thereof. Lately I was feeling a little low and wondered if I might be having a bout of depression. THen I got a call - my last labs showed I am anemic again. After an iron infusion and epo shots I feel like superwoman.
I am sorry to feel that you are feeling isolated and cut off from those around you. A room full of people can be a lonely place if there is no connection.
It is good that you have a supportive partner but it is hard for that support person to see you suffering and not be able to help.
Perhaps you could schedule a night out to do something you both enjoy - take some pain meds to get you through and try and go the whole evening without discussing your health. I attempted this challenge lately and was shocked how hard it was to not let my kidneys encroach o the evening. It made me realise just how much I let them dominate my thoughts.
Best wishes
Fortunately, I haven't run into a lot of the issues with doctors that so many have, however, I also choose to educate myself on the details of PKD that no doctor is going to get into unless asked.
Good luck in everything. Keep your head up!
I will check that link out too. :)
Also, Mike and I went out today and had lunch and a short walk in the park. I was having a good day and it felt good to move about even if only for a short while.
Take care,
Chewitt