Stayin’ alive

A kidney dialysis/transplant diary

About

Kathy Alter
My name is Kathy Alter.  Until Nov. 1, 2008, I was a Web content editor at GazetteOnline in Cedar Rapids, Iowa. 

After over a decade as a Type II diabetic, my kidneys gave up the ghost in early 2007. I began hemodialysis March 17 and by June had decided I wanted to try for a kidney transplant while my health — for an End Stage Renal Disease patient — was still relatively good. 

Things can change so quickly.

In January 2008, I began having problems with my right leg and foot that ended in the fall with 3 operations within a month and the eventual amputation of my right leg below the knee. 

In June, a flood raged through Cedar Rapids and destroyed our apartment and all our belongings.

 It has been and still is quite a trip and quite a learning experience. I hope to let readers into my world and maybe help other kidney patients find some answers to common and some uncommon problems.

To start at the beginning, read from the bottom up.

9 Comments »

  1. After seeing you on KCRG. I wanted to read your blog. As a diabetic I was curious to see what led you to your diagnosis of kidney disease, the symptoms you had. Maybe I missed this, but I didn’t see this information. I can always look it up on the internet but was looking for a first person perspective. Hoping you might include this sometime in your blog. Sincerely: Deb

    Comment by Deb | October 29, 2007 | Reply

  2. Deb —
    I will tell more about the diabetes and diagnosis. The blog is just beginning and I find I have a lot to say. I also hope to keep the blog going for people who have questions, concerns, need help in finding solutions.

    Comment by iowakitkat | October 29, 2007 | Reply

  3. Dear Kathy, fellow Northern kidney failure/dialysis adventurer! I am 57yrs old and live in Minneapolis, I inherited PKD and started on dialysis in June 06. I started my testing at the U of Minnesota….but changed over to HCMC this fall. My sister, a friend, and my son in law came with me to my first meeting with them, they asked if there were any “live donors” and all three said they wanted to be tested. Seven days later…it was found that my friend/neighbor and my son in law were matches! I have been in SHOCK ever since! My son in law is NOT a consideration as my daughter/his wife has PKD also and each of their four children have a 50% of inheriting it also. But here I am with this amazing friend who wants to give me my life back! I have been told I also need to lose weight, but the surgeon has decided to go ahead with the surgery, I am leaving the dates up to my friend and the hospital…they are looking at Jan or Feb, as my friend has started the intentsive testing for the donor.
    I feel a “connection” to you, and find that we are experiencing much of the same, this is a good thing that you are doing….networking, easing the mind, when sharing what you are going thru. Thank you.
    Most sincerely, Nancie

    Comment by Nancie | November 26, 2007 | Reply

  4. Nancie —
    Thanks for commenting. You’re right, this blog has been good for me and, I hope, other kidney patients reading it. The specialist said things might be different if I had a live donor but since that is not an option at the moment, the weight loss will take priority. I started this morning (Wednesday, November 28) and 3 hours past breakfast, I’m a little hungry, but managing. I think I’ll end up baring all here by keeping my food journal in the pages area…might as well be accountable to the entire virtual universe, eh? 🙂

    Comment by iowakitkat | November 28, 2007 | Reply

  5. Kathy:
    Thank you for your site There is much we have in common. I lost my kidneys in March 2007 as well to a sudden rare auto immune disease; Goodpastures Syndrome.The chemotherapy used to suppress my Immune system permanantly damaged my heart muscle leaving me with conjestive heart failure. Fortunately dialysis is a blessing as it removes excess fluid so I have had few symptoms.
    I am 58 and was very active before Dialysis. I too believe consciencely or unconsciencely depression is an ongoing battle as we adjust to change and the lifeline of dialysis treatment. The limitations and adjustments to treatment are significant. It has been my experience that a dialysis unit is a grim place to spend 12 hours a week. Most patients are very sick, ambulatory and assited by hired ambulances. Many are very angry which often results in some lively conflicts between people tethered to recliners. The nurses actually had to put up a folding screen to stop a screaming match between a young man with HIV and an elderly woman.
    I for one, am blessed to have a very supportive husband, insurance and relatively good health. I often have to remind myself of these assets. ‘
    The diet restrictions are another departure from life as it was and important to follow. I have seen the results of broken bones and other complications in patients at my Los Angeles Dialysis center. That has been an incentive to adhere carefully to the renal diet. Yet it amazes me to watch patients drink a quart of orange juice while in treatment!
    I am currenly being evaluated by the Transplant Team at Cedars Sinai. It is a considerable amount of work. I try not to have great expectations as my living donors may not be a match. However, I am grateful for the opportunity as well as the activity in involves.
    I am somewhat concerned about the weight loss I have experienced since March. I eat often but my plummeting weight nears 100 lbs. I haven’t had any answers to this delimna.
    Thank you for your site and your willingness to share your experience.
    rejoice,
    Renee

    Comment by Renee Fraley | December 14, 2007 | Reply

  6. Renee —
    Thanks for commenting. I think I missed seeing your comments earlier. I agree that a dialysis unit can be depressing and as much as they are a ward setup, interaction among patients is certainly not promoted. It’s amazing how isolated people can be in a crowded room.

    Comment by iowakitkat | February 27, 2008 | Reply

  7. Kathy, I wanted to say I wish you the best. Your blog is a great resource. I really feel you are doing a great service to others via this blog. Thank you.

    P.S. I am sure you already have a great dialysis center, however if you want more information check out my website (I hope it helps).

    Comment by Raymond | June 25, 2008 | Reply

  8. Kathy, I JUST came across your site. Want you to know that I will thinking and praying for you.
    Sincerely,
    Trish

    Comment by Trish Thoms | January 18, 2009 | Reply

  9. HELLO KATHY:

    I ALSO WAS ALSO DIAGNOSED WITH LIPODERMATOSCLEROUS AND ATROPHIE BLANCH 9 YEARS AGO. I WAS 47 YEARS OLD AT THAT TIME. I AM SO SORRY THAT YOU HAVE IT BUT FINALLY I HAVE SOMEONE TO RELATE TO. THE SKIN DISEASES ARE A RARE DISEASE.
    I HAVE BEEN A REGISTERED NURSE FOR 25 YEARS AND NOW I AM UNABLE TO WORK. I AM ON PERMANENT DISABILITY. THE PAIN AND ONGOING ULCERS IN MY LOWER EXTREMITIES WITH THE LEFT LEG AND ANKLE THE WORST. A SCRATCH TAKES MONTHS TO HEAL. NO I AM NOT A DIABETIC. MY VASCULAR SURGEON TOLD ME THE LONG HOURS ON MY FEET (I WORKED 12 HOUR SHIFTS) HAVE ATTRIBUTED TO THESE HORRIBLE DISEASES.
    THE LAST 2 YEARS I HAVE HAD RECURRENT CELLULITIS WITH SEVERE EDEMA ON MY LEFT LEG WITH OPEN AREAS THAT HAVE ULCERATED.
    I THINK YOU ARE A COUREGEOUS LADY.

    TAKE CARE AND GOD BLESS,
    ROSEMARY

    Comment by ROSEMARY | April 29, 2009 | Reply


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