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.
It' my opinion and I "think" thats what this group is all about, that discussing valid questions, stupid things we read about regarding PKD, and anything else we need to talk about, is essentially what "discussions" mean! I have known the in's and out's of PKD since I was 38 yrs. old when I was first diagnosed. I made it my business to know all that I could know. I have beloned to the PKD Foundation and donated lots of money, for many, many years. I see no reason why dialysis shouldn't be discussed, it is afterall where we are all going to end up eventually. With of course the exception of the young people on here and the hopes that Tolvatpan will stop the cysts from getting so large, resulting in failure. I have been to dialysis clincs lots of times, to work and to see both of my sisters that died on dialysis. I know you don't want to hear that, but it's a reality and we need to talk about it. It scared the ever living daylights out of me, especially when I found out I had it and my GFR was declining. It didn't matter to me that I knew all the medical jargon, what mattered to me was what I saw and felt. I live 24/7 with a man that prefers to not "talk about unplesant" issues. Belive me it accomplishes nothing and now he is scared to death for me and afraid that he's going to lose me. This is what not talking does to a person. It's not healthy to avoid reality. Of course these are just my opinions and I do have a right to that. I have lots of experience under my hat with PKD, I had 5 brain anurysums clipped when I was 40, no symptoms of them other than a drooping eye! There were no MRI's then, I had to have an angiogram done, with dye injected into my leg, it was pretty bad, I had to sign my life away getting it done. After it was done, they said, oops, sorry, we can't do anything for them, they are too deep in your brain, remember this was 27 yrs. ago! My husband and I went to the library as computers were not in the average household then, looked up "who's who in neurosurgery" found him 2 hrs. from my house. He operated on me, shaved all my hair off in those days, clipped them all, had me out of the hospital in 5 days. The surgery took 7 hours. Today that very same surgery is done in less than an hour, they don't shave your hair anymore and people walk out of the hospital in 2 days usually. I had a complete crainiotomy done, today, they simple drill small holes in your head, I have half my skull gone on the side of my head and face. No one can see it though as my hair covers it. Just one small example of my age and PKD, what I have learned just plain through experience. I am afterall an old broad, and have learned a thing or two in my lifetime. I'am lucky to have stalled it as long as I did, but believe you me, I worked at it and HARD! No one else in my family did anything that I did and they are all gone from this world, they all died at a very young age. There probably isn't a piece of paper about PKD that I have not read in my 67 years of life on this earth. Not talking about issues in regard to PKD is probabaly the worst idea anyone ever came up with and who ever it is, you are dead wrong! JMHO...:) I thoroughly understand the "fear factor" but what good is it going to do to not face your fears? Who knows what kind of dialysis they might have available in another 10 yrs. or so. For that matter, they will probably be "making" kidneys by then. There is tons to talk about and issues to be resolved, but not talking about dialysis, the biggest fear of all accomplishes nothing. I would imagine if it does anything, it probably makes people more afraid than they alrady are.
Have a good day everyone. I will find out today, this afternoon at 3:00, what my fate holds. Think I'am not afraid....
Have a good day everyone. I will find out today, this afternoon at 3:00, what my fate holds. Think I'am not afraid....
As a matter of fact I think that the previous polcystic kidney web group I belonged to painted a bit of a rosy picture of dialysis. Sure it's a good thing not to dwell on negatives but I for one prefer to know what the future may hold so I can prepare myself mentally.
My brother started dialysis last fall and has had some issues adjusting to it. He often gets leg cramps from having fluid removed and yet you can see just looking at him that it needs to be done. He has had problems with his blood pressure bottoming out. Must now take nitro glycerin for his heart.
He didn't have any heart problems before he started dialysis. Also by the time they finally got him started he was so full of fluid his lungs had fluid on them. I have no idea why they waited so long. Almost made me wonder if it was because he would be less of a burden to the Canadian health system if he didn't last long. I know that sounds absolutely crazy but really why the wait? Is it ethical to wait so long that a patient has fluid around both the lungs and heart? I have to wonder at the rational.
Watching my brother at dialysis is very eye opening for me.If I were to judge how it would go just from web sites I would be thinking it was a cake walk. Obviously it is not. It is done as a life saving intervention not as a viable medical treatment.
My kidney function is at 38% and has dropped aprx. 50% just over the last two years. So dialysis has been on my mind as well. The last visit I had with the nephrologist he told me that dialysis is hard and that people feel ill while they are on it. What a shock to hear from a medical professional. But you know what? That is how I prefer to hear it. I'm not one for sugar coating things.
You often read about people who say they feel so much better since starting dialysis. Sure it must feel much better than kidney failure. I know my brother has always been very athletic and takes care of his body. He was back at the gym working out within 5 months of starting dialysis. Even in the midst of ongoing issues with his heart and blood pressure. He may not feel his best but is still making every effort to enjoy what quality of life he has. He is one tough son of a b***h! I really admire that about him.
At least one of the stories my brother has shared about a person's experience at dialysis has scared the crap out of me. I wouldn't even post it here. So I could see where some people might feel it best not to post in great detail about the pitfalls of dialysis.
Still negative, postive, it is better than death. I don't hold out a lot of hope for a transplant for myself when the time comes. Most of my family has polycystic kidney. 3 out of 4 siblings, both of my kids, we are the only remaining family members to have survived with PKD.
I try to take some comfort in knowing that technology has come a long way since my Dad was on dialysis. My doctor tells me that overnight dialysis is much better than just going 3 days a week. Too bad for me that I rent where I live so will probably be going 3 days a week. Whatever at least it is an option.
I don't think that people on this site are unwilling to discuss dialysis. Some of the people here, who's posts I have read for many years are great people who make every effort to focus on the positves in spite of dealing with severe physical problems.
I know for sure I have learned a lot more about ADPKD on-line than what I have at a doctor's office. When I responded to your previous post and asked what about dialysis was so ominous it was a genuine question. I certainly would like to hear your input. As far as I know people are able to post whatever they please on this site as long as it is respectful.
However if you aren't comfortable posting and aren't happy about the responses please do send me a message directly. I would love to read about your concerns and possibly be a friend and support to you. I too have a husband who prefers to bury his head in the sand and pretend everything is coming up roses. Sometimes a person just needs to get everything out. Take care Kelley
"Ignorance is not bliss" I can't write much now but will write more later. Hey, you won't believe it, but my GFR didn't budge a bit from 6 months ago. All my labs are ok, my hard work is paying off. My GFR is about the same as yours and it's staying there. Are you drinking any coffee or caffiene? If you are, don't. I haven't consumed any caffiene in any form since I was first diagnosed, 38 I was. No one told me to do that, I figured it out for myself. They always told us not to drink coffee for breast cancer as it made cysts grow, so I just took it from there and it has paid off. Also no anti inflammatory drugs, zippo, nadda, nothing and I have spinal steosis in my back too. Have relied upon Ultraset which is a script, but a mild one with tylenol in it. I've toughed out a lot of battles but would rather do that any day of the week than the alternative. I also used to run, then jog, then fast walk, then finally I'am going to the gym and working out on the treadmill. Can't do much, so I put the elevation up as high as I can, slowly each week, work out for an hour every day that I can, which is usually 5 days a week. Diet is the hardest for me, so my kidney doc is sending me to a dietician for some help as my posassium is too high, has been and I can't seem to help it myself, so he's giving me some help. These are just a few of the things I've done to help myself. Talk with you later. Have a wonderful evening..
I too find diet challenging. I have cut out coffee and am presently drinking one cup of tea in the am in substitute. Cutting sodium down is a big challenge for me. I work at it but still dine out in restaurants and have this nasty pumpkin seed addiction left from when I quit smoking some years back. It's amazing how much guilt I can feel from eating a few pumpkin seeds lol.
Sounds like you really are making huge efforts with exercise. I used to do a lot of walking myself but now have chronic pain that prevents too much walking. I can however manage to do yoga as long as i'm careful and so attend a yoga class once a week with my family. I enjoy it a lot and plan to start practising at least one more day a week at home once we have the poses down better.
I also tend to get the wicked migraine headaches so do take advil on occasion for pain relief. I have cleared it with my neph but would like to find something less harmful for the kidneys. I'm in the process of finding a new doctor so will have to wait and see what they can do for me.
Good luck with the dietician, hopefully you will be able to get your potassium down quickly. Take care Kelley
I was married to a wonderful loving man for 36 yrs... He talked with me, and we were best friends, however I know that he didn't speak what was in his eyes and that was that he thought he would outlast me. Heck, I thought he would outlast me. He did tell me that he didn't know how he would survive without me; I'm now left to wonder how I will survive without him as in spite of being healthy and having no risk factors he had a massive fatal heart attack two years ago. So you see we can think that we have a serious illness and worry about all the what ifs, and then life throws us a curveball. All I've learned is that its' day by day and that I don't have everything figured out.
In my mind it is not being negative to discuss both the good and the bad; it's realistic, logical and practical. I've been through really bad times at dialysis and really great times. I've been saddened by losing friends; I"ve also been blessed by having them in my life for even a brief time. I've met staff that are wonderful in every way, and a few I would like to kick to the curb and back! I have much to still live for but admit that some days are really tough.
KelleyPat, we must have belonged to the same group lol all smilely faces, kittens, whatever but mention anything could be both bad and good at the same time and you got verbally smacked. If you need to know my truths about dialysis just ask. I'm not afraid to tell it like it really is (for me). I don't like to be rude or insensive but also believe that no one forces someone to read a post. In as much as some don't want to hear anything bad, some want the truth, the good and bad. Whose to say who should have their way. Why can't we all have discussions and then again avoid the ones we can't handle. I've been on dialysis for eight years and have never really been able to discuss anything even remotely negative because of the group I belonged to. I stopped going to their chat because I didn't feel welcome. I'm a pretty positive person but I'm not going to constantly stuff things down and not talk about them. A group is not worth belonging to if it's always a good day no matter what, and there is no honesty. Again, Just my opinions!!! Lin.
when faced with the knowledge I had to go on dialysis (unless a miracle happened and a transplant came along first) it was pretty hard to make lemonade out of that lemon.
I learned all I could about dialysis, a large part from you who told me it made you feel better. all I knew was it would just keep me alive. you taught me it would do more than that.
amazingly my first session made me feel better and I left there with clear thinking and even seeing better, and went grocery shopping. the fear was way worse than the reality.
when my father, at 80, learned of his colon cancer and had to go on chemotherapy I felt why bother. I had heard all the horror stories about chemo, just as there are horror stories about dialysis. his doctor told me it would make him feel better and, yes, it did.
in my former support group my posts ended with:
"Life may not be the party we hoped for, but while we are here we might as well dance."
its the way I try to live my life and I guess sometimes it offends others or comes across as "rude and arrogant". all my dialysis sessions didn't go well, even the ones I did myself, but overall I am grateful that dialysis was there so I can now live and enjoy my life, have fun with my grandsons, go sailing with Jim, smell the flowers instead of being under them. since the early transplant miracle didn't happen, that's where I would be if not for dialysis.
So is dialysis.
No. Its not fun.
But neither is dying.
Nobody is issuing a "dialysis guarantee."
All a patient can do is determine what is in his/her control, and control that! Diet, communication with medical team, compliance with treatment protocols, keeping up with latest developments, keeping personal relationships in good shape, etc.
After that, everyone is in the "same boat" of life on this earth!
A "spiritual" attitude has helped me. It's worth looking at life from the "higher altitude" to develop a "higher attitude!"
Peace and Blessings!
CoachRichie
http://www.innergameofpkd.com