Hello from another Oregonian

Clancy1600

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Hello from another Oregonian

« on: February 27, 2008, 07:01:00 PM »

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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Romona

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