Archive for 'dialysis'

When Life hands you Lemons…

Tuesday, September 18th, 2012 at 8:35 am  
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A guest post from our TweetChat guest - Deb Stanzak who is the Founder/CEO of RonWear Port-able Clothing®. This chat is scheduled for 9/18/12 @8pm ET www.tweetchat.com #treatdiarieschat!

The old adage: “When life hands you lemons, make lemonade” is true.  But you have to

1) squeeze them into the pitcher, 2) add sweetness 3) share the goodness!  With that said, I share my ‘lemonade’ story.

Since I was 10, the fashion industry dominated my thoughts.  Starting with learning to sew, landing my first job as a sewing instructor for Sears at age 16; going to college for Fashion Merchandising, and beginning a lifelong career in textiles and apparel.   Upon graduation, I landed a position as an Assistant Buyer in Fabrics for the May Co, Cleveland.  My fashion career went on for the next 35 years.   Life happened and I got married in 1992 and had my only child, Jaime in 1996.  Life continued on–working, raising a son, being a wife, caring for a home.

Here come the lemons…  In 2001, my husband Gary was diagnosed with Multiple Myeloma, a rare cancer of the blood in the bone marrow.  In 2004, my brother Ron ended up in the ER with complications from diabetes, and my mother, who Ron lived with ended up in the ER the next day with Congestive Heart Failure.  My mother-in –law fell and broke her hip shortly thereafter, and she was in the hospital, also.

Add the sweetness…This went on for the next several years:  my husband on chemotherapy, my mother getting blood transfusions, and my brother Ron on dialysis. They all complained of the same things during their treatments:  it was cold in the treatment centers, and it was very immodest—especially in a hospital gown.  My brother Ron was the first to complain.  I wanted to fix the problem, so as a seamstress, I made him a makeshift warm fleece shirt with a zipper in the arm.  I brought it to the hospital and said, “Here, try this.  Just put on the warm shirt, unzip, connect to your port, get your treatment, and stay warm”.  The next day he told me everyone wanted one and I would be a millionaire.  I had no time to produce anymore, as I was caregiving for the other family members also, as well as tending to a young son.

Share the goodness…My brother passed on in 2005, my mom in 2006 and my husband in January of 2008—and HIS dad died 10 days later.   Now what?  How do I go back to a busy retail job—nights, weekends, holidays, and leave my then, 11-year-old son, who lost all those who helped raise him, alone?  I couldn’t.  So per my doctor, who asked what I was going to do for the rest of my life, I sat down with a couple nurses, and redesigned what I now manufacture for all chemo, dialysis and infusion patients:  RonWear Port-able Clothing®.  Named after my brother Ron, I have built a treatment clothing company that helps all patients with ports be warm and comfortable. RonWear was also recently recognized by Chase and Living Social as a winner of the Mission: Small Business Contest. As a winner, RonWear was awarded a $250,000 grant to continue our mission. RonWear put the ‘band aid on the bubble’ that my brother, mother and husband lived in with their diseases.

So from lemons, to lemonade, my adversity isn’t so adverse anymore.  We lost 4, but now we can help thousands stay warm, comfortable and dignified in RonWear.

 

Deb Stanzak is the Founder/CEO of RonWear Port-able Clothing® which provides clothing for chemotherapy, dialysis and other infusion therapy.  Her business is based in Beachwood, Oh. 

Kidney Disease, Cancer, You & Libre Clothing

Monday, April 23rd, 2012 at 11:46 am  
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In January of 2008 I learned of kidney disease, and inconsequently, dialysis for the first time. By February, I knew it all too well. My mom had been put into the hospital, and ultimately, put on dialysis because of sudden loss of kidney function for unknown reasons. It was scary and sad, and ultimately I wanted to help in whatever way possible. I wasn’t sure what to say or do. It was new to us all, and being away from her at school was harder than I had imagined.

From that day on our lives were changed, hers especially, with dialysis treatments three times a week for up to four hours at a time. She had to retire from teaching after 28 years so she could make her treatments and her life suddenly revolved around this disease and the discomfort of treatments that came along with it. People always say “Let me know if I can do anything to help,” but what can we really do if we’re not in the medical field? Offer kind and compassionate words, support them in whatever way possible? It wasn’t enough for me.

I struggled realizing how hard things were for her. She didn’t have the freedom she once had and now relied on a machine in order to stay alive and healthy. Daily tasks now put her on the brink of exhaustion, and it was hard for us all to realize that this disease was taking a bigger toll on her than we had originally anticipated.

In the Fall of 2008, I was a senior at Miami University minoring in Entrepreneurship and was looking for an idea to pitch to the class for our semester long project. I called my mom to ask how her day had been and realized that I was hearing the same problem over and over, “I’m so cold during treatment and I can’t cover up with a blanket, so I’ve been cutting holes in my old sweatshirts to wear. It’s pretty ugly but it keeps me warm!” Then a light bulb came on. Why should she have to sacrifice style and dignity just to stay warm for treatments?

That is when Libre was born, and there was no turning back. Myself, and three others (Mandy Eckman, Tess Schuster, and Bethany Skaff) forged ahead during our class project, winning the business competition at the end of the semester and vowing that this was what we wanted to pursue after graduation the following spring. That next semester we worked with professors to raise capital and research manufacturing to get things in place. In March of 2009 we became Libre, LLC!

Libre is a clothing line made specifically for chemotherapy, dialysis, and other infusion patients. Our clothing is an everyday staple in anyone’s wardrobe, but has discreet areas of access specifically for a patient’s treatment site. The clothing keeps the patient covered and warm while keeping the treatment site accessible, and visible, for nurses. Zip it open when you’re at treatment, and zip it up when you’re done.

I was not the only with personal ties to the disease through my mother; all four of us were connected to these diseases in one way, shape, or form. Our passion for Libre is driven by helping those we love, our very supportive customers, and all of those patients out there who can benefit from our products. “Libre” means free and open in many languages, it’s our goal to make patients days a little more Libre!

I’m happy to say that my mother was blessed enough to receive a kidney transplant from my best friend in December of 2010. it was an amazing and scary time in my family’s life, but knowing the new life, and freedom, my mom would gain was worth it.

As you can see, resources and support were a huge part of this process and having a place to go, such as TreatmentDiaries.com, would have been so beneficial for my mother and family. Knowing what to expect, and receiving support from those who have been through this first hand is something that everyone deserves to be aware of and be a part of.

Thank you again to Amy for giving me the opportunity to tell my story and more about Libre! We love what Amy and Treatment Diaries represent and we’re very excited to be working closely with her to bring positiveness Libre Testimonials, support, resources, and more to those who are willing to connect and help each other. deserves, to make their time through whatever illness that much more bearable.

 

*You can contact us at Info@LibreClothing.com, or go to our website www.LibreClothing.com

World Kidney Day 2012

Monday, March 5th, 2012 at 11:48 pm  
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Have you ever considered donating a kidney?  Each one of us is born with two and can live with one – so why not make a difference and give life to someone in need?  This is a personal topic for certain, and one that comes to mind for some on World Kidney Day 2012.  For those living with kidney disease the daily stresses of dealing with dialysis to stay alive, the fatigue which invades every minute of their day and not having the freedom to travel, can be isolating and stressful.  Many turn to social media for compassion, friendship and support in navigating a journey with kidney disease.

Some interesting facts to consider:

  • Someone is added to the kidney transplant waiting list every 10 minutes.
  • Each day 79 people receive organ transplants. However, 18 people die each day waiting for transplants due to a shortage of donated organs.
  • Organ transplantation has become an accepted medical treatment for end-stage organ failure.
  • As of 2009, the percentage of recipients who were still living 5-years after their transplant is: Kidney – 69.3% Heart - 74.9% Liver – 54.4% & Lung – 54.4%

 

What are actual recipients of a transplant sharing? Many share their personal stories on TreatmentDiaries. Below is a recent diary written by an ”End-Stage Kidney Disease” TD user at www.treatmentdiaries.com:

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“I’m 28 years old, I was born with Kidney Failure and on October 26th, 2011 I received a deceased donor Kidney Transplant.  I used to feel so run down and tired that the easiest things were becoming harder and harder as life on dialysis wore on and on. Some days just getting out of bed was hard.  It was like I had to force my body to get up; I had to force myself to eat and drink. But now I don’t need to work at any of it.  In fact, my body works like normal. The feeling I have in me is just – WOW!  The new kidney I got from a stranger has changed my life. Even if this kidney decides to fail tomorrow, I will not be all that sad because the last 3.5 months have been amazing, sure I’ve had a rough start with it but I’ve also had a 3.5 month break from dialysis, met some wonderful people at clinic and have decided that there IS more to life than going to dialysis 3 days a week and feeling like my life is over and done with before I’m even 30. And you know what? It’s all because some random person in the world, I didn’t know, decided to be an Organ Donor. You are heroes in my world; a total stranger who was kind enough to give me my life back.”Survivor and TD User
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Today there are more than enough people waiting for an organ to fill a large football stadium twice over.  This is a sad statistic, but one where each of us can make an impact.  TreatmentDiaries connects those on a similar journey with illness and inspires even those with any illness with the real life stories of others.  Living a life affected by illness can be lonely – we don’t want you to be alone any longer.  Start sharing with others today and be inspired to live well in your illness.  Your diary…Shared Healing!

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