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.
My specialist quit practising without telling anyone. He wasn't old but my last two visits I wasn't impressed by him and asked my GP for a new referral. Earlier this month I got a phone call that there was a cancellation for a doctor that my previous specialist had sent my file to - nice of them to notify patients! Anyway, I took it. I like him - he's young and I like that because the younger ones are usually more up to date on things.
But I'm depressed. I was already depressed before I saw him. If my kidneys would just fail today or if I had a heart attack I would welcome death.
He said if my dad lived to 55 (actually his kidney failed at 53) then I've done very well to live to 63. I'm at 24GFR. That sounds low to me but I have no symptoms aside from exhaustion. I don't feel bad, but if I've done well to live to 63 how many years do I have left?
I've really struggled with obstacles in my life other than this. I still have my 35 year old autistic son at home. There is no public services for him so I'm on my own. My husband who was supposed to be here to support me drank himself to death 1 1/2 years ago.
Guess I'm feeling sorry for myself. There are things I wanted - material things like paint the walls cause I like my surroundings to be nice. And I feel like it's a waste of money now. My kids (I have a daughter too) will just sell my house anyway, and chances are the new purchasers will tear it down, why fix it up?
But I'm depressed. I was already depressed before I saw him. If my kidneys would just fail today or if I had a heart attack I would welcome death.
He said if my dad lived to 55 (actually his kidney failed at 53) then I've done very well to live to 63. I'm at 24GFR. That sounds low to me but I have no symptoms aside from exhaustion. I don't feel bad, but if I've done well to live to 63 how many years do I have left?
I've really struggled with obstacles in my life other than this. I still have my 35 year old autistic son at home. There is no public services for him so I'm on my own. My husband who was supposed to be here to support me drank himself to death 1 1/2 years ago.
Guess I'm feeling sorry for myself. There are things I wanted - material things like paint the walls cause I like my surroundings to be nice. And I feel like it's a waste of money now. My kids (I have a daughter too) will just sell my house anyway, and chances are the new purchasers will tear it down, why fix it up?
It's hard to believe that you get no assistance with help handling your son. Have you talked to anyone about that? Social services, anyone, your doctor? Ok, I am going to tell you how I "think " I have escaped dialysis. I take herbal meds, they are called K & B Essential oils, k and b meaning kidney and bladder. The prescribed dosage is 3 times a day, but I have only taken them once a day! Hey, they worked when my kidneys were crashing!! I am stage 3-1/2 lol, if there is such a thing! I don't feel very well but it's mostly from arthritis and not kidney failure!
I want to help you, it sounds as if you are in trouble! What can I do to help you? You can PM me or write me at normameagher @aol.com. I am not an old broad, LOL, sure Norma ....but I too have a tendency to get depressed, but I keep struggling on. My husband is still with me, thank God! But, doesn't understand PKD, he try's but it just isn't there. Did you get a Christmas tree? Why not do it, it will help, believe me, I know. Even just a Charlie Brown one will help! Mske the best of what you have honey and how about trying to make things better? Can you do that? Tell me what I can do to help you? God loves you my friend and I fo too!
Lots of love and merry Christmas!
Norma ...
PS: you should fix your house up becsuse it will mske you feel better!!! That's why! Do it for you! :)
I've always been known as the one who makes lemonade when life hands me a lemon. and speaking of lemon, it is a great color for at least one room in your house. even the inside of a closet and you may save some electricity.
like Norma I believe in herbs and spices, not only for ingesting but the aroma can be very uplifting.
I deal with daughters who are not always supportive and I won't go into details except one and I are not communicating at all for about a month and it's a relief, this or anytime of the year. she is an alcoholic (dry now far as I know) who is very quick to take offense and threatens suicide often. I don't need this with what I am going through.
the full side of my glass is that my partner seems to be more supportive recently, he too can be very affected by SAD.
I will be posting shortly with an update on my condition.
meanwhile, buy a lamp that simulates sunshine, read things that lift your spirits. very soon days will be longer and you will feel more like living.
Things must be very difficult for you on your own with an autistic son and no help from anyone. I don't know how support services work in the USA but I think you need to pursue this with your GP. You need some help now and need to set up support for him for the years to come.
Spiderwoman is right about seasonal affective disorder. I find these cold, dark months difficult, too. I've forced myself this year to take my lively little dog out despite the weather, and find it uplifting to take in some fresh air and make the most of any sunshine that comes our way. Now it's less of an effort and I feel bad if I don't go out.
As for decorating your house, I agree that you should do it for yourself. Don't worry about what others will do when you're no longer here (which could be years away); do whatever you need to do to make your life more comfortable and pleasant right now. Make the most of the time that you have and don't anticipate the worst. This will just spoil the time that you have left. As I recently posted, average age for ESRD for PKD 2 is 79 years, which is basically a normal life span.
Keep in touch with us Shirley. Let us know what colours you choose; I need some ideas!
Chewitt
Norma I will look for those essential oils. They can't do any damage can they? I'm so afraid of taking new things cause I'm sensitive to a lot of medications. I was also thinking of taking vitamin D, I think that's okay.
Yes, I know about SAD and believe that could be part of my problem. I live in the lower mainland of BC and, like Seattle, the winters are dreary and rainy. I'd love to go on a holiday to somewhere sunny but I'm afraid to travel.
My son is gentle and not a problem, he helps me carry in groceries cause my knees are very weak, don't know if that's to do with the PKD or from the head injury I had a couple of years ago. He has a worker now because everyone on the autism spectrum is considered autistic. when he was diagnosed 20 years ago they said he has Aspergers and there was only assistance for autism. This worker is supposed to help him socialize and find a part time job but he won't cooperate. He goes out with him for 1 hour a week for a walk, that's it. He was allotted 5 hours but always wants to come home. He also has OCD and won't take the medication the doctor gave him.
There used to be independent living in our province but the program was cancelled. Even the group homes have been closed so I'm lucky he's as high functioning as he is.
I think my biggest problem right now is I feel alone. I've belonged to a church since before I was born. I've quit my church for various reasons - haven't really been happy with it for a few years. And I feel like I've lost my Faith which was my strongest asset.
I'll be okay though, I always am. I'll try those oils.
Shirley