I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Clancy1600 on February 27, 2008, 07:01:00 PM
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I am a 59 y/o female who was diagnosed with CKD in 2004. I'm pre-dialysis with a GFR of 17%. On 2/11/08 I had my evaluation with a PD training nurse and on 3/28/08 I have my first meeting with the surgeon to discuss placement of a PD catheter. I still feel good and I'm still working full-time in a fairly stressful, demanding job (with many deadlines). The primary symptoms that I'm noticing are fatigue and foamy urine from the protein being spilled by my kidneys. I also have high blood pressure which my doctors are treating with 3 different medications.
I come from a complicated family structure (too lengthy to cover in this post) and I have learned that the female side of my family has a history of kidney disease in every generation as far back as my great-grandmother. In my generation, there are three of us female cousins who have been diagnosed with kidney disease. (None of the males in any generation of my family have had kidney problems.) Because of the complicated family structure, I do not personally know my two cousins who have kidney disease, but I do know that both of them were on PD prior to receiving transplants. One cousin received a kidney transplant in June 2007 and the other received a kidney transplant in Sept 2007. Both are doing great. I'm hoping that transplantation will be an option for me also. I'm scheduled to attend a transplant "class" through my HMO on 4/16/08.
Since my diagnosis, I've been very frustrated with the lack of visible support for kidney patients. In 1997 I was diagnosed with breast cancer and was treated with lumpectomy and radiation. During and after those months and treatments, there were many health care professionals available to "walk beside me" through that scary time. My HMO even had a "Cancer Counseling Department" that provided one-on-one counseling as well as support groups in order to cope with the disease. After being diagnosed with CKD, I started looking for the same type of resources for kidney patients, without much success. I attended a "kidney class" provided by my HMO, which was minimally helpful. The dietitians spoke about what kidney patients should avoid eating, but they gave no information regarding what kidney patients COULD eat. The trainer said the program had a social worker on staff who was available to help patients. When I inquired about making an appointment with the social worker to discuss the emotional aspects of being a newly-diagnosed CKD patient and how to cope, I was told "He's not that kind of social worker." When I asked "Then how does he help patients?", I was told, "Oh, he can help you with paperwork or any forms you might need to fill out." No support groups were available for kidney patients at my HMO.
Months later, after ferretting out helpful information on the internet regarding what foods were low protein, low potassium, low phosphorus, low sodium, and relatively kidney-safe, I was still looking for some source of information presented from a patient's point of view. On Amazon.com, I found a few book titles that dealt with living with kidney disease. I thought I'd ask my neph if she could tell me anything about these books, before I spent money ordering something sight unseen. Nope, she hadn't heard of them, nor could she recommend any books about living with CKD. I'm thinking, "Where is the help/support for a patient like me?"
I spent a couple of years, off and on, looking for an on-line community for kidney patients, but all I found were forums where the moderator was someone trying to sell his own products. Not the place for me.
Then, recently, when reading one of the established kidney websites (don't remember which one), I discovered a number of links at the bottom of the screen. In reading through these links, one in particular jumped out at me; it said "ihatedialysis.com". I thought "I have to see what this is about", so I clicked on it and found IHD! I was so excited when I discovered this was an on-line community of kidney patients - for patients by patients, just what I've been searching for, for several years. IHD is wonderful! There is such a wealth of information and experience here. And I love the way everyone is so supportive and caring toward each other. Thank you for being here! I'm so glad I've found you!! (Sorry this intro is so long; I didn't realize I had so many pent-up thoughts and feelings to express. Thanks for reading.)
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:bandance;
Glad you found us! :welcomesign;
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Yeah! You found us--we've been waiting for you! We are at a similar point--diagnosed same year, same age, GFR of 15%, had PD orientation and holding on for dear life. You will find so much help, information and support here. Someone always has an answer for any question. They have already paved the way for us, we just need to walk in their footsteps. You have landed in a soft place with lots of loving people to surround you :grouphug;
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Welcome Clancy1600 to Ihatedialysis.com,
It's great to see you've found us. It's always interesting when new members share their experiences with us. It just helps to know you better.
I hope IHD meets or exceeds everything you expect. I think you will be surprised at the multitude of information here and I hope you create lasting friendships as well.
Sluff/ Admin
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Thank you, Romona, Paris, and Sluff,
You've already made me feel at home!
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:welcomesign;
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We are glad you found us too. :welcomesign;
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Welcome Clancy1600 , good to have you aboard.
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:waving;
You have hit the nail on the head as far as support and information for newly diagnosed ERSD patients. When my mom and I watched the 'informative' videos together, we were both dumb-founded. Yes they may say 'oh, we don't want to scare people.' but come on, be realistic. All of the cases seen were shown of people who had no complications, did not talk about what to do if certain things happened at home or in-center, just not enough to fully embrace the whole concept of dialysis.
My mom is at GFR of 13% and only symptom is tiredness. Once she started taking her Lycria (for nerve pain from diabetes) at night instead of in the morning (something I learned from IHD members!) she felt less tired during the day!
There is lots of information here. Grab a cup of coffee (tea, water...) and get comfy! :grouphug;
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hi CLANCY, i'm new here too !!! i think we came to the right place !!!!
:welcomesign;
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Welcome Clancy!
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:welcomesign; You've come to the right place and you'll be amazed how quickly you'll come to love each and everyone of the people here.
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:welcomesign; Clancy1600. You have found the perfect site. Infomation, support and a place to vent. Welcome aboard. :waving;
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Glad to have you aboard Clancy, welcome to IHD...Boxman
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Welcome to our community! we are so glad you joined us. And as for your introduction, it is just the kind that the founder of this site loved. Epoman enjoyed a detailed intro! we like to get to know you. You and I have much in common - I just turned 58. A friend once told me those 1950 were the last of the good people! Second thing we have in common, I was diagnosed with breast cancer and had a mastectomy. I am a survivor!
I must tell you that IHD made such a difference in my handling of this renal challenge. I found IHD the month before i started dialysis and you cannot believe the help I recieved. i went to my first dialysis session as an empowered patient. So take advantage of all this site has to offer. Keep reading and keep posting. We are not just a forum, we are a genuine family. :grouphug;
Bajanne, Moderator
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Welcome to the site. It was an accident I wandered over here, too. I saw the name one day and thought oh and went on my merry way, however the name creeps up on you so I went back and looked. Sure enough family was here!
kitkatz,moderator
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:welcomesign;
Where in oregon? I am from Salem. Just started organization that gives the support to patients. I am a advocate.
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:welcomesign;
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Thank you everyone, for your warm, lovely words of welcome! Sluff, IHD has already easily met and exceeded my expectations. The people here are wonderful, just the kind of support I've been looking for. I'm looking forward to getting to know everyone better. Thanks again! :waving;
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Clancy - Welcome. I am astounded that your history which pretty much matches my history including the breast cancer which I was diagnosed with in 1998 except that I also had chemo. During those endless times of blood work is when they discovered by higher than normal creatine level but I didn't have to start dialysis until January 2007. I also have a complex family history of kidney failure on my mother's female side of the family which included my mother, several aunts and cousins. And, unfortunately, now my daughter.
Whew - strange to read your own history written by another person. ;D
You will grow to love this forum. Lots and lots of experience to draw from and also a lot of friendships to be made.
Again, welcome aboard.
Sandyb
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Slywalker -- WOW! I am amazed at the similarities in our situations! Do you happen to know what form of CKD your family has? Someone in my family history must have had a kidney biopsy, as I understand there was a diagnosis of "thin basement membrane" for someone. I've not been successful in trying to find out who received this diagnosis, nor have I had a kidney biopsy myself. I've seen a few different nephs, wanting to find someone I felt I could best work with, and the first two I saw, told me there was no evidence I had a hereditary form of kidney disease, even though I told them about the long line of female kidney patients in the female line of my family. My current neph was the first one to verify to me that "thin basement membrane" does have a hereditary component. This is one of the reasons I chose to stay with her. (I think there is a more modern name for "thin basement membrane", but I don't know what that term would be.) Thank you for sharing your information with me, Slywalker. I look forward to our future discussions. And congratulations to you and Bajanne for being fellow breast cancer survivors!
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:welcomesign; Clancy1600 to the IHD Family.
So glad you found us and we are what you've been looking for.
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:waving; Hi Clancy,
Welcome to the best website regarding kidneys. There are many members here, most who are patients, others are friends, family, caregivers of patients on dialysis. We all have stories to tell and info to share. Please feel free to post questions, comments or concerns where and when needed. We look forward to hearing more from you... and don't forget, you are not alone - we are here for you!
okarol/moderator