Hi Melissa,

 

You should make sure you read all the valuable information available to you on this website. The links on the left-hand side will take you to a wealth of knowledge. You should really worried and I'm so sorry about that, and I'm really sorry to hear you lost your mother recently.

 

You should know that PKD is not really a death sentence. Of the people diagnosed with it, 40% will not have kidney failure and require dialysis and/or transplant. You should also know that PKD patients are pretty robust and healthy compared to other kidney failure patients. We can do dialysis successfully for many, many years.

 

Some of the things you can do to help keep your kidneys healthy and reduce the burden on them are to cut way back on sodium (avoid foods high in salt, eg: foods that are pickled, canned, packaged, pre-prepared, cured, etc. plus stop using table salt if you use it), drink plenty of water, get adequate excercise, and don't smoke. Avoid over the counter medications such as allergy and/or cold meds, aspirin, ibuprofen, etc. If you don't know if you can take it, ask your nephrologist or pharmacist.

 

You will hear lots of success stories here as well as a few sad ones. We are no different from other people that way! You'll find lots of support, lots of positive attitudes and outlooks, and ALOT of common sense.

 

Make friends with your nephrologist, they're such an amazing resource. So is your pharmacist.

 

Lastly, don't worry so much. Huge strides are made every day with medications and treatments. Make sure that you have lots of variety in your life so that you don't dwell on just the PKD. Have some fun! Travel, camp, do the things you enjoy.     

hi Melissa and welcome to the best support group on the internet.

as Katie said, PKD is not a death sentence. I don't know why your mother died but it was not simply from PKD. if she was getting regular medical care she should have been treated for whatever was the problem.

it is possible her kidneys failed and she was unaware of her PKD, that is certainly not the case with you. you know you have the disease so you should be followed by a nephrologist who will make sure you are doing well.

keeping your blood pressure under control is key, Katie mentioned some of the ways to do this, particularly cutting way back on salt and not smoking. staying well hydrated makes it easier on your kidneys. a healthy diet with lots of fruit and veggies, whole grains will go a long way in keeping you healthy.

it is best to cook as much as you can from scratch so you can keep the salt and chemicals out of your system. I know that isn't possible for everyone but the more natural your food, the better for you.

your creatinine is excellent so you are far from kidney failure.

I hope you will take advantage of all the information that is available here and keep us posted on your health. I have a feeling you will be around for a long, long time.

Hi guys, and thanks for your replies.  To give you a little more information about my mother, she was on dialysis for 13 years, and a few months prior to her death, she had a really bad infection in her graft (she had many grafts over the years, they always clotted off and couldn't be repaired).  The infection damaged her heart valves, and caused infectious emboli in her brain.  She came home after a month in UVA, to in home iv antibiotics for another month.  She passed away 2 months later.  I don't know if the infection is what took her life, or what it was.  She had went to the hospital 2 days prior to her death because she wasn't feeling well, and the morning prior to her death, she told the hospital staff that she wanted no more measures taken to save her life, that Jesus had come to her the night before and told her that her time was now and He was waiting for her.  She was on oxygen and morphine, and at 6 p.m. she went to sleep.  She took her last breath at 3:33 a.m.  She always had a rough time with dialysis, she slept most of the time.  She said the dialysis wore her out.  They tried overnight dialysis, to try to get a more thorough cleaning of her blood, but it didn't help.  I don't know why my mom had such a rough case of PKD, but she did.  She never did well with it.  I  never got an exact estimate of how large her kidneys were, but her stomach was very distended, and had been ever since I can remember.  This is what frightens me.  I am hopeful and optomistic that I will not have such a bad case, as so far my numbers are very very good.  My creatinine a few weeks ago was 0.7.  The nephrologist said that he thinks I have a good 10-20 years kidney function left.  I hope so.  I pray so.  I do try to enjoy myself, and not let PKD bring me down.  I work a full time job, and have 2 beautiful sons.  I am tired a lot of the time, but other than that I usually feel fine.  My kidneys hurt from time to time, but not enough to interfere with my life.  I am trying to be involved in the Halt PKD study, as I have high blood pressure.  I am hopeful for the future, as if my boys have it, I don't want it to ever frighten them as it did me.  Thank you all so much for your replies :)  It helps to have people to talk to who know PKD.   

I can't speak for when your mother had her problems but it sounds as if a double nephrectomy (removal of both kidneys) may have been the answer to the problem your mother had. I don't know if she ever tried for a kidney transplant either.

there is no reason you have to follow in your mother's footsteps. in addition to the HALT study there is Tolvaptan and other drugs in test stages that may be the answer to stop the growth of cysts.

there is no better support group than this one and I hope you will visit us often and keep us updated.