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Hi, my name is Erin. I am a 38 year old woman with stage 4 PKD. I have lately started to become very frightened about this, and about my future. I have two children, an 18 year old and a 21 year old. My son is free so far, but my daughter was diagnosed about ten years ago.
My mother had PKD, dialysis, and a transplant. She passed away ten years ago due to a complicatin from cyclosporine. My aunt, her sister, also had PKD, as did their mother, and several of her siblings.
The saddest thing presently is my brother, who is 42 and has been on peritoneal dialisys for two years. He awaits a transplant.
I am very well informed about this disease, seeing as I basically grew up with those around me being affected by it. I found out I had it when I was 21, and had an ultrasound because I wanted to give my mother a kidney. For many years afterwards I didn't think a lot about it; not until I began to have effects in my early thirties.
As I mentioned above, lately I have been having a difficult time accepting and dealing with it. I have about 30% function at this time, and am slightly symptomatic. I have trouble keeping food down at times, and I am easily fatigued. I also feel dizzy a lot, which I'm not sure if it is a part of PKD or not. My BP bounces around - it will be fine for awhile, and then go up for a few months, and then back down.
I think my recent terror has a lot to do with having watched what my mother and aunt, and more recently, my brother, have gone through. I am a fulltime college student, with about two to three years left to go. I have worked as a nursing assistant and medication aide for almost twenty years, and have had the honor to be a part of the lives of countless dear elderly people on their final journey. My future career plans include being a lobbyist for my darling old people, and fighting for their rights as I always have.
I hope this is not to babbly, but I really need support, and want you all to know who I am. I am very alone in this - only the one sibling, and no cousins or close family except my children. No husband, either.
Thanks for listening. I look forward to getting to know everyone better. |
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Erin, you are definitely not alone. this is a wonderful support group and I know you will find support here. first, to ease your mind, cyclosporin is not generally used on an ongoing basis for transplants anymore. there are other, newer drugs used now. I hope you are being seen by a nephrologist on a regular basis and having labwork done. it sounds as if you are advancing in your disease. from my own experience, I was terrified and in denial when told my kidney function had deteriorated. I felt fine, had little problem in doing what I always did. as time passed I felt less fine and could do less and finally had to accept that dialysis was approaching, unless a miracle occurred and a transplant became available. with the help and support of people in this group I learned that dialysis is nowhere near as bad as the fear of dialysis. I learned that since I still produced normal amounts of urine I had no reason to limit fluids and did not need fluid removed. I had a difficult time "training" the dialysis staff who don't usually understand, or believe, that some patients still produce urine and don't require fluid removal. I got into a home hemo program and took care of my dialysis myself. after nearly 3 years of dialysis I got "the" call and have a transplant for over 3 years. I am doing great and because of all the support I received here, I feel "obligated" to give it back. I hope you will find the support you need here. |
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Hi Erin and welcome to the best support group on the internet. I joined this group when my son was diagnosed, hoping to learn more about PKD, and along with knowledge gleaned through these wonderful people I also feel as if I have gained friends for life. Bridget the site founder and who we affectionally call B, wanted noone to feel lost and alone as she once felt, hence the birth of this group. Never worry about your posts being too " babbly ", thats one reason we're here. And we all babble sometimes, hehe. I have cried on these peoples shoulders more then once . Your advocacy for the elderly speaks volumns for your humanity and care for others, and we'd like to be there for you also. Pull up a chair and have some cheese along with that whine,,,,,,,,,,, PKD Mom Dianne |
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| | From:  pkdLin | Sent: 7/24/2008 4:08 PM |
Hi Erin, You are not alone, and never will be again!!! I know that feeling all too well as I dealt with it many years ago with my initial dx.. and then again right before dialysis. I don't have one of those big warm fuzzy families and a big pool of friends, and as you likely know it really would not matter; one doesn't like to burden people, and besides at least in my life I've found people who are not dealing with this or something similar are hard pressed to understand. I can be in a room full of people my age and feel alone.
I dealt with a panic feeling as I approached the time when I would need dialysis and it both scared and shocked me. I wasn't expecting it really because I had known about the pkd for a very long time. One night I cried, ranted and raved saying over and over again that I didn't want to be a "sick" person, didn't want to be a dialysis pt... my poor husband didn't know what to do and quite frankly I'm surprised he didn't call the men in white coats to cart me away. It's now seven yrs. later and I'm still on dialysis. I've lost my husband to a heart attack. I have an adult son at home with me due to health problems with sleep apnea. I have also an older son with two grandchildren and third on the way. I have no plans of giving in, or giving up. If you had asked me years ago if I thought I could go through or do any of this I would have answered NO WAY Life is funny because we are so much stronger than we often give ourselves credit for. Oh sure, some days I spend a few minutes crying, but then I brush it off as being a waste of my precious time and get on with things.
Right before dialysis I felt poorly sometimes and it affected my appearance so be forewarned! I really had to try hard to get my act together because when you look bad, you feel poorly. I went to a favortie store and bought a few new things and cleaned up my act. which made me feel so much better, less sick. Be kind and gentle with yourself and know that the fatigue, queasy feelings, and blues don't last! If you don't believe it now and need reassurance there are plenty of friends here that will bolster your ego for you, myself included. Most of us have allowed a preference whereby you can just click on our names and email us privately if you wish. Don't forget that we won't let you be alone. Lin.
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Thank you so much everyone for your kind welcomes!!!!
It is wonderful to know that I am not alone in this - and I am also happy to know about cyclosporine being dc'ed. One of its side effects can be stomach cancer, and that is what my mother died from.
Her death anniversary is coming up, and that always makes me sad. It has been ten years, which I find hard to believe, and she was my best and dearest friend. She was so very strong through all of her problems, which in addition to the kidney disease, transplant, and eventual cancer also included an amputation. I pray that when my time comes I am as strong as my "mama Jean".
You know, I don't have a nephrologist, I see a regular MD, the same one for the past ten years. Whenever I mention it he says it is "too soon." I do get my blood draws about four times a year, and I am thinking of asking for another creatnine clearance. I haven't had one in two years, and I would like to know if there has been a major declination.
I have a question: do any of you have a problem with cold sores? I guess I call them that, but they aren't really. They are on the skin between my nose and lips, and start out like blisters, and then turn into big ugly honking red things that take two weeks to go away. I've noticed they come along when I am feeling poorly, and having the increased blood in the urine.
Again, I thank everyone for their kind welcome. I feel so touched and grateful that I have found you all. |
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Erin, its good that you have confindence in your doctor but you should be having your creatinine checked on a regular basis. do you get a copy of your lab reports so you can compare them? if not you should. you should be aware of any abnormalities, highs and lows, which will be indicated in the report. you should be able to discuss them with your doctor. it is YOUR body and sometimes even the best doctors seem to forget that. maybe they think they are "protecting" us, or that we aren't smart enough to interpret them. most of us are smart enough to question a value that is too high or too low. maybe we don't understand it but we have a right to question it and be made aware. the "cold sores", and if you are getting them when your immune system is compromised by, e.g. blood in urine, sound like a herpes simplex infection that comes and goes. you should discuss this with your doctor. I don't like to second guess your doctor but I do think a nephrologist should be seen at least once a year. I think most people on this board would agree with that. good luck in finding the right nephrologist. a good one is worth his/her weight in gold. |
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| | | From: barb | Sent: 7/24/2008 6:59 PM |
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Erin, you are NOT alone---you have US!
Barb
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| | | From: barb | Sent: 7/24/2008 7:33 PM |
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Mamajeansgirl, it's NOT too soon to see a nephrologist if it makes you feel more confident and reassured.
Since 1992, it's been the protocol of the NIDDK (a branch of the US government) that a patient should see a nephrologist when the creatinine level reaches 2.0 for a man and 1.5 for a woman. You are NOT supposed to wait until kidney failure or just before to see one.
Please do not let your GP bully you. Having quarterly blood tests leads me to believe that your GFR (glomular filtration rate, a form or measuring the percent of kidney function) is below normal. You have a LOT of questions to ask this doctor.
Unless your insurance company requires a referral, just make an appointment with a nephrologist. If your GP will not cooperate in the event that you need his referral, get another GP.
There have been MANY advances in treating kidney disease, in dialysis and in transplantation since your mother's transplant. Learning about them is another reason you need to be under the care of a nephrologist.
Please write back and let us know how things are going.
Barb
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| | | From: pkdLin | Sent: 7/24/2008 10:59 PM |
| Barb gives excellent advice! I had a doc like yours who wouldn't referme to a neph.. so I changed docs but by that time it was only a year from my starting dialysis. If I had it to do over I would have travelled a bit to see a neph.; there were none at the time where I live and now we only have one but he's my neph. now... Lin. |
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Hi Erin, and welcome! This is one of the most supportive sites you will ever find. Many here are going through what you are going through and many are on dialysis or have received transplants and are doing very well. We are all in the same PKD boat with you and you will never be alone here. Many members are as learned as you are about this dasterdly disease. We all look forward to more posts from you, be they happy or sad and fearful ones. We will gladly take them all! Liz |
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| | | From: Wendys | Sent: 8/24/2008 6:08 PM |
Hi Erin
I dont know how to soothe your pain but to tell you that I went through the same thing that you are going through. At that time I was upset a lot, I had a 18 month old and a 6 year old and was scared that I would not be able to take care of them. Everyone goes through this and nobody really understands what you are going through. I had a great neph who got a kidney for me before I had to go on dialysis. I rarely ever think about PKD anymore and mostly think about taking my meds to keep my kidney alive. Once you get a transplant things change. I am healthy and feel great so don't worry and enjoy your life now. Wendy |
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