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KidneyKid
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/15/2009 8:44 PM (GMT -7)   
I was just wondering if anyone with PKD has problems with muscle twitching?  I'm not currently on dialysis but my creatnine is 7.0 and my doctor has been trying encorage me to start dialysis.  Although the results of my monthly blood test are not always good, I don't feel bad.  I deal with the fatigue and get sick occassionaly but I don't feel like I'm ready to start.
 
Something that has come up recently for me is muscle twitching.  My nephrologist says its called Myoclonus and it just another sign dialysis is near.  Does anyone have this or have had problems with muscle twitching?  I'm really not ready mentally to start dialysis but I'm not sure if this is something I should really be concered with.  Thanks

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/16/2009 4:16 PM (GMT -7)   
Hi! I was on dialysis from sept. 08 until march of -09, then, miraculously, my creatinine improved and I was able to get off. I did have muscle twitching. I don't honestly know if you could ever be 'ready' to start dialysis. I was terrified. I wont lie to you, it's not fun or something I looked forward to, but it wasn't as bad as I had it built up in my mind. I also don't want to 'preach you a sermon' but the longer you put it off, the more damage is being done to your body. Please consider started dialysis. Are you qualified for a transplant?
Judy

KidneyKid
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/16/2009 7:23 PM (GMT -7)   
Thanks for the reply. I'm atually on three lists right now. I've been on them for approximately three years. I had received two calls. The first one was a perfect match and everyone was so excited. Long story but when they removed the kidney from the deceased donor, there was a tourmor on it and it could not be used. So I went home without a new kidney. This sounds stupid but I was so scared about the surgery so it almost felt like a relief. My husband was more upset then I was.

Then last year I actually had a transplant but I formed a blood clot in the main artery of the kidney which made the kidney fail. Less then 24 hours after the first surgery, they were taking me to the operating room to remove it.

As my luck goes, when I had the transplant I lost a lot of blood and had to have a transfusion. Because of the blood transfusion and the actual transplant, I ended up getting too many antibodies and now I'm highly sensitized. Two hospitals went so far as to tell me that the chance of getting a transplant now is pretty unlikely.

Because of the antibody problem, I recently contacted Cedars-Sinai in Los Angeles and I'm hoping to get a chance to be evaluated there. As you may know, they are known for their desentazation program. I live in the Chicago area so it won't be convenient but I need to try to do anything I can. I don't have any living donors. I have two adult children and they would like to be tested but I have a lot of issues with the idea.

My doctor has me getting blood tests every two weeks and I'm getting one tomorrow. I'm hoping my numbers won't be too bad. What caused your kindey failure? You don't hear very often from anyone that their kidney function has improved. I guess whatever it was, you're just glad it improved!

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/16/2009 8:09 PM (GMT -7)   
Lupus caused my kidneys to fail 10 years ago. My doc (nephrologist) whom has become a dear friend, told me I would never come off of dialysis. They have no idea why my kidneys improved, but they did! I have had LOTS of transfusions and i'm aware of the antibody issue. I've heard of doing plasmapharesis to desensitize, is that what they do at Cedars?

I also completely understand the complications of people you love dearly donating organs and the fear of the surgery; I don't blame you at all.

Have you had a fistula or shunt put in for dialysis? I live in a small town in South Mississippi, so I had to drive 45minutes one way, 3x's a week for my dialysis. The nurses were so sweet and they actually had computers and internet for each patient! It made it go by a little quicker!

Please keep me posted on your situation. I will pray for you. I have labs tomorrow too! Judy

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/17/2009 6:31 AM (GMT -7)   
KidneyKid 
 
I want to Welcome you to HW.  I'm sorry its under these circumstances.  We are all here to help you through anything even off topic so sit back and enjoy some new friendships.
 
Onto your post now. 
I will have to say that I fully understand where you are coming from.  I'm sitting in the same boat as you.  I stress alot over dialysis!!!  I'm on the fence also with blood work.  I get the muscle twitches also but only on occasions.  I deal with pain on a daily bases with my PKD.  Over the years with all the surgeries, stones and infections I have gained alot of scar tissue so I have nerve damage throughout the urological system.
 
My husband is a logical thinker and a very strong man so he leads in making alot of my choices when it comes to my kidneys.  No hes not a control freak he is being my support system, the support I need most is for him to take the lead.  I get so scared and frustrated at times.  I would chicken out on any procedure..lol  I don't want to quit working and dialysis will do that for me. 
 
So MJLD is so very right.  Looking at it in terms of logic helps so much.  The longer we go without dialysis the more damage we will develop in our kidneys.
 
Your posts seems to lead to when should you?  Well thats up to you and your husband alone.  I would say go ahead and start but then I'm still on the fence so my opinion stinks right now..lol
 
I'm also like MJLD my kidneys go can get better.  It changes all the time, my creatine levels.  I have alittle more time to make my choices on dialysis.
 
Please keep us informed and please tell us how your doctors appointment goes today.  Hey that reminds me I have one also at 11 am.  I knew there was a reason for me sitting down to catch up on posting this morning...lol
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


KidneyKid
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/18/2009 8:29 AM (GMT -7)   
Thanks to both of you for your replies. Did this kidney forum just get started? If I was reading corretly, it looks was it was just added in June. Its so nice to communicate with people who really understand this disease. A lot of people think they understand, but until they are in our shoes, they really don't.

I hope your appoitments went well yesterday. I had my blood test and nothing has really changed. Although they are not good, at least they didn't get worse! My potassium was high. It really flucates. My biggest problem is that I love summer fruits and as much as I try to control my intake, its really hard. So I'm pretty sure that's why I have potassium problems. My doctor is always concerened with my potassium levels but (I know this sounds bad, but I don't worry about it). I really believe the majority of the time it rises is because I eat too many things that are high in potassium. In my mind, I think I can control it but I'm not sure if that's the correct way to think.

I have a doctor appointment this Monday and I can tell you exactly how the conversation will go. My nephrologist, whom I really respect, will try to convience me to start. Then I'll say I'm not ready and I really don't feel too bad. Then he will say, you don't really know how bad you feel because you've been feeling crummy for so long that you don't know what its like to feel good! Then the conversation will go on and on with him trying to give me all the reasons I should start and I'll tell him all the reasons I shouldn't! Its been like this for about 6 months. I've been going to him for about 14 years. He's really great. He never rushes you through your appointment. He's very detailed when he gives me information and always returns my calls shortly after I leave messages. Sounds funny since I respect him so much, that I don't listen to him! He know I'm not an "uncoorpitative" patient so I think that's why he is so patient with me.

I do have the peritiniel catherter inserted. I'v actually had it for about a year. I got really sick about a year ago and thought I was going to have to start so I had the catherter put in. Its burried under the skin. But then things turned around and I started to feel better. That is one of the BIG reasons I'm not ready to start. If I wouldn't have listened to "myself", I would have already been on dialysis. Although I see the numbers, I can't justify starting. I feel that if I can handle the fatigue and occassional sickness, I can hold out.

And as far as giving advice to others, I think we all know that its easy to tell someone else what to do, but when it comes to ourselves, we don't even listen ourselves! I know I'm really good at telling others what to do!! Well, as you can see, I'm a "rambler" so I'll stop for now.
52 year old female
Diagnosed with PKD 1995 (Wow!  Time flies!)
Inherited PKD from my dad
Not currently on dialysis


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/18/2009 8:49 AM (GMT -7)   
Your potassium is high one of the symptoms of that is muscle cramps and twitching. Talk with your doctor on that one. But I am happy your appointment went well.

Yes this is a new forum they decided to add. We are hoping it will grow in numbers.

When it started I knew of no one who had PKD now that they started this forum I have found a few friends who understand I mean really understand. My appointment didn't go well but that is a whole other story.

It ok to ramble we all do at times..lol We even ramble on for days about off topic stuff........LOL

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


KidneyKid
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/18/2009 12:30 PM (GMT -7)   
I never knew anyone other than my dad. I'm sure you'll be surprised at how many people do have it.
52 year old female
Diagnosed with PKD 1995 (Wow!  Time flies!)
Inherited PKD from my dad
Not currently on dialysis


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/19/2009 10:01 AM (GMT -7)   
I'm already really surprised. Hopefully we will get more so we can all share information and side effects. I inherited it from my mother. We didn't even know she had it until her autopsy to find cause of death. They said she had PKD but that wasn't what took her. Even then I really didn't think about it for I was only 32 yrs old. Then WHAMMY at the age of 37 it had developed and went crazy. With all the kidney issues and all the scans they never knew it would grow and spread so quickly. Now that I am on Lisinopril it has slowed down but not enough.

Genetics will get you everytime.....

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/19/2009 1:12 PM (GMT -7)   
Kidney Kid,
I actually started out on hemo-dialysis and then went to peritoneal dialysis. I have lupus and have been on immunosuppressive drugs for years and so the peritoneal dialysis didn't work well for me because of constant infections. I am tempted to preach you a sermon about dialysis and potassium, BUT...i've had my share of sermons and I think in a way they almost pushed me more in the wrong direction. (little rebellion!) I'm glad your numbers didn't get any worse! Keep holdin' your own!!! Judy ( I get my results Wed)
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