have you discussed tolvaptan with your doctors?
you haven't told us anything about your symptoms or where you are in the process but trust me, September is not very far away, if it is too far now then Sept. won't make any difference in your case.
what you can do now is follow a healthy diet, drink plenty of water, avoid salt. caffeine, otc meds unless you check with your doctor.

I was not sure how to get started off on this site so here is my profile that I thought was a post. I am 49 y/o and diagnosed with PKD at age 18. I have had years of discomfort and passing kidney stones but I have coped very well until now. I am starting to feel overwhelmed because of the changes I feel inside from my cyst growth to my kidneys, liver, pancreas...I am nauseated all the time and I have trouble sleeping d/t inability to get or stay comfortable. I also get spasm in my kidney region. I choose not to take medications for pain or nausea but I do take blood pressure medication and vitamin D3. I have just recently discussed Tolvaptan with my doctor but he was not familiar with it or at least with its use for PKD but I will address it again in the fall. I feel when I discuss my symptoms with a doctor that they dismiss any value of it because they expect it and just say its normal for me. I rarely complain, but when I do I feel its for good reason and I wish I would be told specifically for example don't eat so many grams of protein or don't eat red meat , you shouldn't take advil or drink caffeine etc...something! Or just offer me some info I may not know. My GFR has always been >60 until now it was slightly less. To the doctor this is no big deal but to me it is a great deal this is my health were talking about. Any nutritional guidelines I follow is from my own research and I do eat a lot of fruits and vegetables and drink a good amount of water. I emailed a dietician for some input and she said where we need to start is making sure my menses is regular. Definitely not the advise I was looking for. What does my menses have to do with it. I was looking for limiting protein or phos or mg or what ever it should be for stage 3 kidney disease. I feel like I hit a brick wall when ever I ask for assist. I forgot to mention I take potassium which I suppose it is better that its low and not building up. Im getting out a lot of frustration right now. I may have a better day today just venting without feeling I am going to burden someone with my feelings because here someone can choose to read this or not but I hope I learn something on this site that I don't already know. If you are reading this, Again I want to say thanks for listening!!

It sounds as though you are already aware of the basics involving caffeine, advil, etc.

Perhaps the best way to use your time and resources is to advocate for PKD awareness. If your doctor/dietitian aren't aware of how PKD functions, or the stages of kidney failure, advocating could be a way to help other people who encounter similar problems.

sad but many doctors treat PKD as just "kidney disease" when it can be so different.
a good nephrologist will research PKD if they never had a patient with it before.
asking specific questions here is a good way to learn.
unless you have low potassium there is no reason to take supplements and it can even be dangerous.
as to protein, there is no evidence that it contributes to cyst growth.
dietary changes should be made based on your lab results, not what may be good for patients with "kidney disease".

Sherbear, I know exactly what you are saying and thinking!! I feel exactly the same way. My numbers were dropping rapidly after living with PKD for many, many years. I too would ask my kidney doc what I could do and got the same response as you did. To think in this day and age that our docs don't know a thing about Tolvaptan is Huge! My husband was so upset that he went with me to my next visit. HE was going to get some help. Well, not only was he treated with disrespect, he was told to leave me alone as there was nothing that could be done! Soooo, I took matters into my own hands and began drinking water like nobody's business, my husband started going to the gym with me. We worked up to almost an hour on the treadmill and believe me, that was no easy feat! I didn't change my diet because I was already eating as I should. The only thing I would change would be the amounts of phosphorus, according to my labs. You know there is another trick that works too and that is to chew a tums or Rolaids after your main meal to control that. There are lots of tricks! I am going to assume that you know not to fast before your labs are done. I didn't for years until someone told me not to, then low and behold they told me not to fast. My GFR went up 20 points! Stupid doctors!

To be told there is nothing you can do is about as bad as it gets, there is always something that can be done, no matter what! I am living proof!! I also take some herbal supplements and my creatinine has gone down dramatically!! I really don't like telling this, but for you, I will!!!! I am 70 years old! But don't tell anyone ok! LOL. I am not telling you that I have a magic cure for PKD, but I am telling you that exercise has been proven to increase kidney function, drinking lots of water every, single day and not drinking caffeine in any form will reduce cyst growth! Your kidneys need blood flowing through them, but how can it when they are all clogged up with cysts? Think about it. Start by taking a walk around the block whatever you can do is better than sitting around feeling sorry for yourself, not only is it beneficial to your kidneys, it's helpful to your state of mind. It's a win, win situation! Something is better than nothing, right? I also am serious about the caffeine!! Lets get this ball rolling, I am with you all the way!

Lots of love,
Norma ...

VAPKD Here I complained about lack of support but I know it is from lack of knowledge so thank you for reminding me of this and I will figure out how to advocate for PKD awareness in my area.
Spiderwoman8 I do agree that diet should be individualized based on lab work. I get the basic chemistry panel and CBC but do you know if there are other labs that should be checked specific to a person with PKD? I watched a webinar that said that everyone with PKD should have there vitamin D3 level checked so I requested it and sure enough it was pretty low but a supplement was an easy fix. Had I not watched that video I would have not thought to check that level.
Norma did you mistype? I wouldn't have thought you to be a day over 40:) I always fast for my blood work but not until I read your statement did it make sense not to. I mean being dehydrated can make your creatinine level higher. Thank you for sharing your tricks that you have learned. I do exercise but it seems to be more of an effort for me to do but maybe my recent negativity has contributed to my intolerance. So I will think of your positive energy I felt from your pep talk and try to get back to myself.
I thank all three of you for your input. Thanks again!

Hi Sherbear,

Much of what you've been saying is very familiar to me. Nephrologists seem to regard everything as 'normal' until you reach stage 4-5, but for me, carrying massively enlarged kidneys and liver around in my abdomen isn't normal. I've never received any dietary advice; everything I know has been gleaned from reading. I take no meds or supplements except for VitaminD3 and calcium, like you. Recently, my nephrologist mentioned the Tolvaptan trials and said that though it's not yet available here in the UK for PKD, he will look into the possibility of obtaining it for me because 'You're in such a state', ie, I look like I've swallowed two watermelons whole. He doesn't hold out much hope of being able to find a source of Tolvaptan, however, and I've pretty much disregarded it.

The things we have to try to do are: avoid caffeine and sodium; drink plenty of water; eat a healthy, balanced diet; excercise (probably no bungee jumping). It sounds like it's not enough, but it's all there is to do at this stage (1-3). We'll worry about stages 4-5 when we reach that point Sherbear. There is no more advice, because at the moment, that's all that is known. Unless your labs indicate it, no other dietary changes have been shown to be needed/ effective.

I hope you will feel a little better just knowing that there are others who understand what you're going through and care. We're always ready to to listen.

Take care,

Chewitt

Hello Chewitt!
Thank you so much for your reply. It really does help to know I can express what I am feeling and someone truly understands what I am saying. I have a loving husband and friends but when I comment I am not feeling well (and I am not a complainer) they just don't get it because they think I look fine on the outside but in reality I am feeling like my normal daily routines have become an effort to do. So, thank you so much for listening and caring:)
I will let you know of any updates I hear on the Tolvaptan. In the US it will hopefully be available in the fall.
I hear everyone mention to avoid caffeine and thats what I was told initially when I was diagnosed with PKD in California but now my doctors here in Washington have told me that it does not inhibit cyst growth I wonder why they tell me this. I am talking about my internal medicine doctor and nephrologist. Regardless, it would best to avoid its just one of my frustrations that I don't feel well educated to diet by my doctors because I want them to have all the answers as silly as that may sound.
My appetite has been poor d/t my nausea and feeling full easily but today I plan on juicing some fruits and vegetables and I am looking forward to it. It will taste very refreshing on this warm day.
I am working on staying active and hopefully start bike riding again. There is a great trail around the river. I am so envious of my friends that go on daily runs this is something I can not do (way to painful)but the bike ride I will give it a try. No running-check! No bungee jumping-check! hahahaha
Thank you again Chewitt for your comment you will be in my thoughts and I wish you well!!

Hi Sherbear,

I just want to say hi and welcome. It sounds like you have been very proactive about your care and are making an effort to learn as much as you can, and I commend you for that.

The only thing I want to add is that if you are like me (and many people) you are probably having a hard time dealing with the fact that your energy is diminished and maybe even feeling guilty about not doing all that you think you should be doing--whether it's keeping up with housework or working at top capacity or making time for hobbies and friends--I truly did not know until I had my transplant that I had a very long slow downward progression of my energy level. I was constantly beating myself up about being basically lazy. I now understand that I had diminished energy long before m,y doctors told me I should. The process is so slow that we barely notice it--but it is real. So one of the big pieces of advice I now give others with PKD is to stop beating yourself up if you lack physical energy. Take that nap, say no to things that are too taxing...yes, you should still live life and say yes to things, but pick and choose the ones that are most important and enjoyable to you.

You are right--many people do not understand this disease, but we do, so please feel free to come and vent and share and ask questions (and answer them).

All the best!

Hello Alinds and thank you for your comments. You have stated exactly how I have been feeling. I keep thinking to myself maybe there is really nothing wrong with me and I should be doing more and Im not joking but have thought like you said that maybe I am just lazy so I try to push myself harder. I am worried that I am not going to be able to keep up with job and that is a scary thought. Not just money wise but I would hate to lose my health insurance. I will probably try to push my self somewhat but I will take your advise too and take that needed nap and prioritize whats important. My best medicine is time with my grandsons. Exhausting! But worth every minute:)
Do you mind if I ask how long ago was your transplant and how do you feel now. I hope you are feeling great! Thank you for your comment and advice and helping me realize that I am not alone.

Hi,

My transplant was in July 2010. I was 45. The year before my transplant I had to stop working and I was able to qualify for disability. I was on COBRA for a year until my medicare kicked in for transplant. You and I are nearly the same age but I became a mom very late in the game so my son (now 6) was 3 when I had my transplant. I simply couldn't take care of him and work--it was just too much running after a extremely active 3 year old! I was very fortunate that my family helped me pay for some extra childcare and that my husband was a champ and helped take care of our son while also taking care of me and running his business!

I feel very good now--amazing, in fact. I have some special circumstances which come into it--I do not take any medications, no immunosuppression drugs due to a clinical trial I participated in. I am not a typical transplant patient, but we are all individuals and in that sense there is no such thing as typical!

Dear Alinds,
I am so glad you feel amazing and I appreciate you sharing your experience with me it gives me hope. It is incredible that you are not on any immunosuppressants I didn't know that was possible. Thank you again for your first reply too and making me feel a little more normal. I wish you good health! and a wonderful day:)

Hi, I can surely sympathize with you. I am currently taking tolvaptan and have been in the clinical trial for seven weeks now. I have lost a lot of fluid but I don't know if this medication is having a huge impact on my disease. The last MRI indicated that my kidneys were the exact same size when I started. I must say I was a little depressed with the news.
The criteria for me to enter the study was as follows, GFR of at least 50, I know your kidneys have to be big and mine were 23 and 24 cm. Im not sure on the age but if you go to clinicaltrial.gov you can research all the hospitals and groups that are offering the study.

Hi Kaneboy,
Thank you for the information on the Tolvaptan I assumed the trial for this medication was closed but Im going to check it out. Seven weeks probably feels like forever and I would probably feel the same as you initially but have hope I read good results on studies for this medication so try to stay positive. I will thinking about you and wishing you well!

Hi,

I just got into a Tolvaptan study, the goal of the drug is to slow the progression of the disease not reverse its course. My kidneys are growing quickly, I am only 27 and I experience a lot of the discomfort you are experiencing. I was really depressed about my condition about a year ago and it took me awhile to accept what was going on with me. Once I came to terms with the disease it was easier for me to overcome some of the obstacles. I also didn't agree with what my Nephrologist was telling me and I went somewhere else. My new doctor was much more familiar with pkd and was able to get me into the study.

This disease is NOT a guaranteed death sentence. My father had a kidney transplant at 36 and he is still extremely healthy and he is now 57. After his transplant he became a police officer and has been on the beat ever since, I don't think he will ever retire. :) If you are going to have a kidney disease, ours is the best one to have, we tend not to have a ton of other medical conditions and do well with dialysis and also do very well with transplants.