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.
Hello everyone. Im not new, but its been about two years since Ive last commented (busy, and school had my focus). So, Ill briefly introduce myself. Ive known I had PKD since I was 16 (I just turned 30), and I inherited it from my mother. I saw my mother suffer from this for the last years of her life, and I saw her die from complications from this seven years ago. Its been about 2-3 years since my last round of tests, and my kidneys were working fine- enlarged, but operational, but with high BP.
For the last two weeks, however, I have had pain in my side almost daily. No warning- it just came out of the blue. Ive had occasional pains before, but they usually subsided after a while. The fact that its been daily for the last few weeks, however, bothers me immensely. It actually scares me. I dont know what could have caused the pains to start all of a sudden like this all I can think of is stress. Looking for a job is stressful enough- I recently graduated with a Masters degree, but Im working at a restaurant to pay the bills for now (but Im not complaining!). What I do know, however, is that around the time the pains started, I had a falling-out with a coworker who used to be a good friend, but for apparently no reason has turned a complete 180, but thats another subject. Im thinking that may have been a factor- I know that stress can cause a lot of things to go wrong. Its to the point that its hard for me to remain standing up for a prolonged period of time.
And, I dont work enough hours to qualify for insurance, so there goes that. Regardless, I think it may be my bodys way of telling me I need to take better care of myself. I dont drink alcohol or smoke, but Ive been drinking a lot of caffeine lately, and not enough water. Basically, I havent been taking care of myself as a whole. But it scares me- Im only 30, I feel like Im too young to be saying that my health is in decline. I hope this is just a temporary flare-up caused by stress from work. But- I remember many times my mother would just cry because the pain from her kidneys was so bad, and I feel so lost. Has anyone else had similar problems?
Thats it I just needed to vent my frustration to people who would understand.
For the last two weeks, however, I have had pain in my side almost daily. No warning- it just came out of the blue. Ive had occasional pains before, but they usually subsided after a while. The fact that its been daily for the last few weeks, however, bothers me immensely. It actually scares me. I dont know what could have caused the pains to start all of a sudden like this all I can think of is stress. Looking for a job is stressful enough- I recently graduated with a Masters degree, but Im working at a restaurant to pay the bills for now (but Im not complaining!). What I do know, however, is that around the time the pains started, I had a falling-out with a coworker who used to be a good friend, but for apparently no reason has turned a complete 180, but thats another subject. Im thinking that may have been a factor- I know that stress can cause a lot of things to go wrong. Its to the point that its hard for me to remain standing up for a prolonged period of time.
And, I dont work enough hours to qualify for insurance, so there goes that. Regardless, I think it may be my bodys way of telling me I need to take better care of myself. I dont drink alcohol or smoke, but Ive been drinking a lot of caffeine lately, and not enough water. Basically, I havent been taking care of myself as a whole. But it scares me- Im only 30, I feel like Im too young to be saying that my health is in decline. I hope this is just a temporary flare-up caused by stress from work. But- I remember many times my mother would just cry because the pain from her kidneys was so bad, and I feel so lost. Has anyone else had similar problems?
Thats it I just needed to vent my frustration to people who would understand.
Welcome back.
It is hard for anybody to know for sure why you are having pain right now. It could be any number of reasons, and it is even possible that the pain is not related to the PKD (pulled muscle, appendix, etc). I used to get periodic pains in my side that were quite sharp and constant and each time the pains ended and the next time I urinated blood. These were cyst ruptures, which in my case caused no other problems whatsoever after they burst. I am sure for every person here there will be a different story about pain and its eventual resolution (or the attempt to manage it).
So...this brings me to another difficult subject. insurance. It is expensive and can be difficult to get if you do not have it through your employer. but as a 30 year old with PKD it unfortunately is going to be a necessity in your life if you are to follow and manage your PKD. Needing insurance caused a lot of issues in my life--I was an actor (actress, if you will but in the biz we all say actor) for 20 years and had to take a dull desk job while many of my freinds worked in more flexible restaurant jobs. I missed some opportunities to tour in plays, to audition, to do some independent films because my family drilled it into me that I could not be without insurance. The economy is tough right now and it is hard to get jobs. but as a person with PKD it will be important to have access to healthcare. I am not saying this to freak you out or to make you over-worry. I just hope that you will make this a priority in your life. I am hopeful that the affordable care act will help folks like you and me, but in any case, it is not possible to do anything but guess why you are in pain unless you see a doctor.
It sounds like you are doing the right things--not smoking or drinking alcohol in excess. And you know to cut down on the caffeine and to drink more water. Monitor your blood pressure regularly too.
Keep us updated on how you are feeling and please let us know if you need help identifying resources for the uninsured. I personally do not have info but some other people here might be able to send you in the right direction.
All the best.
Do you have your BP under control? Have you checked it lately? It's really important. If you don't have a cuff, and you don't have insurance, go to a local pharmacy/grocery store that has one. They aren't always the best, but you really to keep your BP at a normal level. Caffeine is ok, but it's got to be in moderation - maybe 2 cups of whatever you choose per day. Definitely drink lots of water. If you don't already, schedule some exercise in your day to relieve stress, even if it's walking around the neighborhood. It will do you good.
You also may want to call your doctor and explain the lack of insurance and see if he can work something out with you, or let you know if there is a clinic you can go to.
You could try to enroll in one of the clinical trials. As far as I know you don't need insurance because the study covers everything. You would be under good medical care. Check this out for current studies: http://www.pkdcure.org/Research/ClinicalTrials/ActiveRecruiting.aspx
Take good care
I can sympathize with you in watching your Mom decline and die from complications of pkd because I suffered the same experience with my Mom. She discontinued dialysis 17 years ago today. I see now though, today they have more to offer us with the drug trials giving us hope. Tolvaptan looks very promising. If you go to pkdcure.org and click on News there is a webinar by Dr. Perrone and he explains what's happening with the drug trials. At the end of the lecture he took questions from the audience. It was from a person with pkd who was 70 with good kidney function and whether he should still be expecting someday to go on dialysis. Dr. Perrone said that if you can pass 60 with a gfr>60 then you are basically in the clear and most likely won't be needing dialysis. So, we don't necessarily follow the same pattern of decline that our parents had. Everybody is different with pkd. I have pld also but I do not have pain. I did have 3 ruptured cysts that caused pain but the pain went away after a couple days.
I hope you can talk with a nephrolgist that is compassionate and understanding of pain issues and you can find out if it is something simple like gas or something different like an infection. I am 57 now and doing very well. Just tired and can't work as a nurse in a hospital because I was on my feet all day. I work at home as an artist and I am on my husband's group insurance from his work. I hope you can find a job you are happy with. You worked so hard for the Master's degree. Is it a field where you don't have to be on your feet? Sorry if I am being nosy. My son is 26 and he has a desk job and he hasn't been diagnosed with pkd but he treats himself like he has it by drinking plenty of water and avoiding salt and caffeine etc. You are doing the best you can.Hope we can help you in some way.
Best to you.
if your source of caffeine is cola it would be best to stop it altogether. besides caffeine it is high in phosphorous which can be harmful to kidneys as well as contributing to bone loss.
you should always have water handy and just sip all day, carry a bottle or keep a glass nearby. if you don't like the taste of water but keep at it you will probably, as I did, develop a taste for it and find yourself craving it when you don't have any nearby. aim for at least 2 quarts, maybe more if you are a big person.
1. Drinks a lot of water - keep a bottle of water with you all the time
2. Eat healthy food and absolutely stop any junk food and colas, coffee and even tea
3. Start some basic exercises like yoga asanas and go for brisk walk for ~30-45 minutes everyday
I forgot to mention this in my original post, but two weeks ago, just a few days after this flare-up started, I went camping with a friend. For the entire weekend, I had NO pain at all. I thought it was just a temporary thing, then when I came back home, it resumed. It led me to believe that this is somehow induced by stress... when I was on my trip, I didn't have a care in the world.
I'm needing to visit the doctor soon anyway (I need a booster shot), and I'm thinking of asking if they can at least test for an infection now.
Thanks all!
It can be hard to acknowledge that there isn't a whole lot we can do about the progession of PKD. But when I went through transplant and everything else, I did very very well, and I atttribute much of that to the fact that I had maintained my health by eating right and getting exercise even when I felt terrible. i wasn't running marathons but I walked my dog every single day and did what I could to keep the rest of my mind and body in good shape. i think it served me very well in recovery.
1) I was working out too much...I cut back on running during this period
2) I was over tired...I got extra sleep due to memorial day weekend
3) too much coffee...I went down from 2 cups to 1 cups.
I've actually probably drank less water lately now that I think of it, so drinking water is good but too little doesn't seem to be a pain trigger for me.