PKD

[Jamiejames316]

Hello, my name is Jamie and I have PKD. I got the disease from my mother, she spent 26 months on dialysis before she received her transplant. I am happy to say she had her transplant 11 years ago and is still doing fine. I was diagnosed with PKD about 10 years ago by my primary care physician. I did lab work and had an ultrasound done and at the time my kidneys were functioning around 70%. I was put on several different BP meds until I started taking Avapro, which seemed to work the best for me. At the time I had pretty good insurance which paid for most things, but after a year or so I lost my healthcare coverage. I found new coverage but it was really expensive (over $200 per week) and it wouldn't cover anything until I met my 10k out of pocket expense. So needless to say the $120 BP meds rarely got refilled. And dr. visits were few and far between. On the rare occasion that I did go see my dr. he would ask if I was going to do labs this year, I would always say "yes" but never went and did them because I could not afford to. After several years of this I finally got new health insurance. Problem was, it was the kind that only payed to cover prescriptions. So I started taking my BP meds again, on a pretty regular basis. But again since it did not pay for dr. visits or lab work I did'nt go. Another year or so passed by and I decided to get a second job, after a year at my second job I was eligible for health insurance through them so I signed up. Cheap insurance that covered dr. visits and prescriptions, what more can you ask for. About a month ago I had a dr. visit, it was time to renew my BP meds, so this time around I decided to get my lab work done. I think that it was the first time in my life that i've ever had a dr. call me as soon as the results came in. They told me I should go to the emergency room, that I was in bad shape. I told them they were crazy, I felt fine. There is a neph located right next door to my primary so they sent my lab work over to him and had me set up an appointment. I went to see the neph about a week or so later, (guess it wasn't such an emergency after all). I was told by the neph that my kidney function had declined to 16%, I do not need dialysis yet but will prob be placed on the transplant list at my next visit (which is later this week). If my kidney function drops to 10% or less then I will have to go on dialysis. Our goal is for me to be placed on the list and hopefully my kidneys will hold out until I get a transplant, and maybe I can avoid dialysis all together.
Here are some of my lab numbers - BUN 64 / Creatin 6.21 / Creatin Clearance 17 / Hemoglobin 9.5 / PTH 450 / Iron and Calcium both low (dont remember the exact number) / Kappa and Lamda lightchain both high (whatever that is). The rest of my blood work was all within normal range. I am 44 years old, white, 6'2, and 165lbs.
Overall I feel just fine, I don't really have any symptoms of being sick. I don't have any pain or discomfort, no itchy skin, no nausea or vomiting, or diarrhea. About the only thing that I really notice is that I have a low tolerance cold temperatures. Most of the time I try not to think about my disease, and at other times it weighs heavily on my mind. Regardless I try not to let it get me down, I work two full time jobs so on days when I find myself thinking about it to much I try and focus on work more. I have a very loving and caring wife, and shes an RN, so when or if it comes time for dialysis I know that she will help me get through it. I also have my mom who has already been through it so she has been very helpful also. And props to the person who created this site, I found it by accident but I have already learned a great deal of information on here.
Well that's about it for now, I will try and post again after I see my neph later this week.
Thank you.

[Grumpy-1]

   Keep in touch. While you have experience from your mom and wife's work, it is still nice to see the problem from different eyes.   Welcome and join in with thoughts and comments as well as asking questions.  Grumpy

[Sydnee]

Hello, 

Hopefully you can get listed quickly. How long is the wait in your area? So is your nephrologist part of a transplant hospital?

I've been dealing with PKD for 24 years. It looks like I will be on dialysis before my 39th birthday in October. I've been on the transplant list for 2 1/2 years of the 6+ I was told to expect. I sure hope you have a shorter wait or a live donor.
  I wish you the best.

People here are so helpful, glad you found us.

[Jamiejames316]

Thank you for your responses. There is 1 hospital near by that I think does transplants, and there are several others within an hour or two drive. I'm not really sure which one to go with or what the wait times are for any of them as of yet. I copied this from an article I found on this web site - "In that regard, though, patients in Florida are more fortunate, according to the Scientific Registry of Transplant Recipients. Patients at the majority of New York transplant centers have a median wait of more than six years for a kidney transplant, the most common type of transplant. In comparison, Florida's kidney transplant centers have wait times less than 24 months and only Shands Jacksonville and the Mayo Clinic in Jacksonville have median waits longer than 24 months."
I have insurance through Walmart (i work there part time) and I had originally read all over the internet that they cover transplants at 100% but only at the Mayo Clinic so I was going to go with them, however, after further investigation I found out this is not completely true. They do cover transplants at Mayo at 100% but it is only if you need multiple organs, otherwise they only cover at 80% for single organ regardless of which transplant center you use (as long as it is accredited). So I guess the real question is do I go with another center that is closer and less of a wait time, or go with a possible longer wait time but possibly a better quality hospital? As for my neph, i'm not sure if the hospital he is associated with does transplants or not, I will ask him next time I see him tho.
I have considered a live donor but don't really have anyone to ask. I have a younger brother but he also has the disease. I have 2 children (one is 19, the other is 25) my only concern there is my youngest daughter already has high BP so she more then likely will get/have PKD as she gets older. My oldest daughter does not have any symptoms of the disease so she would be a possible candidate, however my thought is if my youngest daughter gets/has it then her she could possibly one day need a transplant. So I would feel much better if she waits and possibly donates to her sister instead of me.
 

[okarol]

My sisters and my brother have PKD but so far have managed their blood pressure and avoided problems.
You probably feel cold because you're anemic.
Medicare along with your private insurance should cover most of the cost of the transplant.
You just need to be able to take the immunosuppressants longterm or you'll lose you transplant.
Check into your eligibility for Medicare. You also should try to get evaluated for a transplant sooner than later.
You can get on the list before starting dialysis, as long as your GFR has been below 20.

 
okarol/admin

[Grumpy-1]

No sure on the Medicare requirements.  I had to be doing dialysis for three months before I could apply to Medicare.  Grumpy

[Jamiejames316]

I found this link while searching for info on Medicare
http://www.medicare.gov/Publications/Pubs/pdf/10128.pdf

[Jamiejames316]

I went to see my neph yesterday, he said my kidneys are functioning around 17%. He prescribed a vitamin D supplement to help lower my PTH, and he also prescribed EPO injections once every 2 weeks to help my hemoglobin. He also referred me to the local hospital to be added to the waiting list for a transplant, and so my journey begins.
He told me about the process to get added to the list, apparently it takes a month or two to happen. I guess there is a lot of testing and stuff to be done first. He did tell me I am an ideal candidate for the program because other then my kidneys I am in good health. No signs of cancer or autoimmune, no issues with any other organs, liver and pancreas doing just fine.
We talked briefly about dialysis, I am hoping to avoid it if I can, but he does not think that will happen. He said that if I drop to 15% function or lower that it will be time to start preparing for dialysis (i.e. get a fistula or cath). Then when I get to around 10% function it will be time to go on dialysis, I asked him how will I know because right now i'm feeling just fine? He said when it is time, you will know. I think when reality really sat in for me was when I asked him how long? If I have a few % to go, how long will that few % be, are we talking a year or two? he said more like a few months or so. He said I am becoming uremic and am already showing signs of it. Eventually it will become worse, and when it does, that is the point when I will know that it is time to start dialysis.
After much thought I am leaning tword doing the peritoneal dialysis at night. I think it will be the best for me because of my work schedule. Well that's about it for now. I will post updates as I go. Thank you 

[Grumpy-1]

If you can do PD, I think it will work better for you as you are working.  Since you are healthy, it is a good option.  Look into it.  Grumpy

[Joe]

I agree with Grumpy-1, take a look at PD and see if you like the modality. I really have liked it, as much as any of us like dialysis, as it lets me have the flexibility to live my life pretty much the way I want to.
Hope you enjoy it at this site, I'm sure we will talk with you a lot.

[Angiepkd]

  Jamie!  So glad you found IHD.  The people here are extremely knowledgeable and helpful.  I have PKD, too.  My story is kind of similar to yours.  I didn't really worry about doctor visits, etc. until I got sick and had some blood work done.  I have had high BP since I was 19, and always took my meds, but didn't do much more besides try to follow the low protein diet.  I started dialysis a few months ago, and had both of my native kidneys removed last month.  They weighed 25 pounds in total, so I feel like I delivered a very large baby lol!  I am almost done with my testing to be put on the list, and have several potential live donors, so am hopeful that I will find a match.  I have two boys, one with symptoms of PKD, one without, and feel like one will give the other a kidney when his time comes.  It has become a running joke at family functions.  We all watch what the son without PKD eats and drinks reminding him that he has to keep those kidneys in perfect shape so he can donate one to his brother in the future.  Luckily, they have seen what PKD has done to our family over the years, and both of them are able to accept their potential future responsibilities with a smile.  The phrases "s@$t happens" and "it is what it is" have become our family mantra.  I feel very guilty that I sentenced them both to this disease, and hope they don't resent me for it.  I know when I was younger and got an infection or watched the ultrasound tech freak out because of the size of my kidneys, my first thought was "thanks, dad" lol!  I hope you are able to have a preemptive transplant without starting D, but if you can't, D isn't so terrible.  I do home hemo, and my only complaint is that it is very time consuming.  I wasn't able to do peritoneal because of my large kidneys (at that time I still had kidneys) and previous surgeries.  If something happens and I lose my access for hemo, I am definitely looking into doing PD.  Best of luck to you!  Looking forward to hearing more from you as your journey continues!

[Jamiejames316]

  thank you for the words of encouragement everyone.

[jewelbarbier]

Hi Jamie, I too have PKD. I got it from my mom who passed away from it in 1969, I was only 19 at the time. My oldest son has it but is not being troubled by it yet and my youngest son refuses to be tested. I was like this too, at 19 when mom died I was just getting married and not concerned about it. They found mine when I was 46 in 1996 through CT scan for something else. Tomorrow is my first day to go on Kidney Dialysis, HD. It took like 17 years for my kidney's to get below 15% total function. So that was a long time seeing the Nephrologist and my Nephrologist was never, ever worried. I kind of felt like, well hey, why am I coming to you? But I stayed with him.  At this point I don't want a kidney transplant. It seems like most folks have to get more than one transplant when the donor kidney gives out. I don't think I could go through all of that. Just way too much major surgery for me. I have the cysts all over both kidneys and my liver. It is really uncomfortable.

I wish you luck and thank you for your insights on your traveled road. We can all learn from each other.

[lmunchkin]

Sorry Im late.  But wanted to welcome you Jamie.  Lots of PKD people on here, as you are finding out.  Great site!

Again welcome (even if late) & God Bless,
lmunchkin

[Jamiejames316]

Hello everyone, sorry I have not posted in several months but just wanted to give an update and ask a question. I went to Mayo clinic in Jacksonville back in october and went through all the pre list testing. My case went all the way to the committee two weeks ago, but they put me on hold. Turns out that because I am a smoker I am not eligible to be listed until I have quit smoking for xx period of time. Would have been nice if they would have told me this back in october so I could have quit smoking then. The only thing they told me was I had to take a pulmonary function test because I smoke. I did excellent on the test, but they decided to make me wait.
Now I'm faced with having to quit, which is no big deal I guess. But they want me to join their quit smoking program which means a half dozen or so more trips up there and its a very long trip (120 miles each way). I asked about doing the program locally (through my primary care dr.) and they said they would get back to me and let me know if that was acceptable. My question is does anybody on here have any experience with taking Chantix? My primary dr. recommended it but i'm worried because of all the stories I have read about people trying to commit suicide and stuff. If not Chantix, does anyone else have any suggestions that may help? the sooner I quit the sooner I can be listed.
Other then that I am still doing pretty good health wise. I do have the occasional leg cramps and skin itching but have been able to deal with both pretty good so far. Still feeling healthy and working every day and am still able to avoid the big D for now. Thank you for your help
 

[Charlie B53]

Some people have quit smoking taking Welbutrin.  Some have side effects and stop the medication.

Same with Chantix.  I've taken it about 4 different times, and it has worked well.  Others, not so well.  I do have some pretty wacked out dreams, but compared to the dreams I've had after the Army they don't bother me, just strange.  Using Chantix I did manage to stop smoking after 45+ years.  I was clean for a year, then started smoking a little just this Jan, so I am once again taking the Chantix although at a reduced strength.  Seems Chantix is a kidney stressor, the usual dose is 1MG twice daily.  Since I am already on PD my Dr's want to save what little remaining kidney function so I only take 1MG once a day.  Gues what, it still removes the craving for nicotine.  My bigest problem is changing the ritual. Retired for years (Dr's orders) and I haven't smoked in the house for 30 years, I have a TV radio stereo ashtray and insulated the 2 car garage so that I have plenty of space and comforts.  I can go have a smoke in the middle of the night in the winter in my underwear.  I am so 'used' to stepping out from the kitchen petting the cats and liglhting a smoke.  It is hard to change those ingrained behaviors.

It can be done, but you need to find a diversion that works for you.  What can you do to occupy you hands, mouth, in place of smoking?  Find the right thing and the Chantix or Welbutrin can help you succeed.

Take Care,

Charlie B

[Jean]

You are right when you say it is the little things that will make it hard for you to stop. I don't recommend this to everyone, but here is how I quit. I bought a "vape" cigarette, watermelon with no nicotine. This covered a lot of my old habits and I have had no problem at all, quit regular cigarettes about 2.5 years ago. Occasionally, I get a craving, but I just don't give in. Today my son has been here and he is a heavy smoker and I did have some cravings, but looking at the empty ashtray stopped that, LOL!! Good luck, whatever you do, do something. Once you have quit, then in a week or two, you will smell a whole lot better. And so will everything else, except your smoking friends.

[talker]

Hi Jamiejames316,   

Not able to offer much here, except with the smoking bit.
I gave up cigarettes decades ago, and went to cheap cigars. Expensive cigars just never tasted right , yup never tasted right. Even though I never actually ate them, I did chew them up a tad. There were times I would flat out , for no reason, stop smoking anything.
Then would 4 / 5 /  6 weeks later , restart. Did though,  stop smoking altogether two years ago.
Once in a great while I still do get a crave for a cigar, but that rapidly passes. 

talker