8 posts tagged “kidney transplant”

Give the Gift of Life on National Donor Day

Posted February 13th, 2013 by

Valentine’s Day is all about showing your love for your significant other.  But what if it were also about showing your love for perfect strangers?

February 14th is National Donor Day, a day of awareness about how registering to be an organ donor can give someone a second chance at life.  Does your driver’s license currently indicate that you are a donor?  If not, and you’d like your organs (as well as potentially your tissues, marrow, platelets and blood) to help someone else after you are no longer here, sign up to be a donor today.  In the time it takes you to register, someone with a life-threatening condition will be added to the waitlist.

Wondering if your registration will really make a difference?  Here are a few statistics that help underscore the need for more donors:

  • 117,001 people are currently waiting for an organ transplant
  • 18 people will die each day while waiting for a new organ
  • 1 organ donor can save up to eight lives total

In particular, there is a need for more minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation, which is essentially the only treatment for end-stage organ failure (e.g. kidney failure, heart failure, liver failure).

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have thousands of transplant patients among our members, including those with (or still awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through organ transplantation? Read our in-depth Patient Voice report on “Life After a Transplant” as well as our insightful interviews with liver transplant recipient Amy Tippins and kidney transplant recipient Michael Burke.


Building a True Picture of Diabetes During American Diabetes Month

Posted November 5th, 2012 by

Get a Clearer Picture of Diabetes During American Diabetes Month This November

November is American Diabetes Month, and this year, the American Diabetes Association is working to reshape the understanding of diabetes.  The goal is to raise awareness of the fact that diabetes is life-changing disease with a huge societal impact – and not a minor hindrance, as some people think.

As part of this mission, the ADA is asking patients with type 1 diabetes and type 2 diabetes to send in a photo that captures what life with diabetes is like.  What are the everyday challenges and considerations?  Help the ADA build a mosaic of the “true picture of diabetes” and CVS will donate a $1 for every photo uploaded, up to $25,000.

Upload Your Photo of Life with Diabetes, and CVS Will Donate $1 for Each Photo.

Another way to get a clearer picture is to consider some of the alarming facts about diabetes, which is projected to affect as many as one in three Americans by 2050:

  • 26 million Americans are currently living with the disease
  • 79 million Americans have prediabetes, putting them at risk for type 2 diabetes
  • Two out of three people with diabetes die from heart attack or stroke
  • Diabetes is the leading cause of kidney failure and new cases of adult blindness
  • The cost of diabetes is $1 out of every $5 in total healthcare costs

If you are living with diabetes, or you’re at risk for developing it, connect with others like you at PatientsLikeMe.  There are more than 1,000 type 1 diabetes patients and more than 4,700 patients type 2 diabetes patients in our community who are sharing experiences with blood glucose controlsymptoms, treatments and more.

How do they evaluate common medications such as Metformin and Insulin Glargine?  How many have undergone a kidney transplant?  Who’s taking part in a diabetes-related clinical trial?  Exchange knowledge and support with those facing many of the same struggles as you.

A Snapshot of the Type 2 Diabetes Community at PatientsLikeMe

For an in-depth picture of a family affected by diabetes, check out our interview with kidney transplant recipient Michael Burke.


Preparing for Life After an Organ Transplant

Posted April 6th, 2012 by

Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant.  Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe.  Split equally in gender with ages ranging from 25 to 60 years old, our discussion group reported 43 organ transplants amongst them, more than half of which were kidney transplants.  Liver, lung, heart and pancreas transplants were also represented.

What did these 32 patients have to say about life after transplantation?  What do they wish they’d known earlier?  From anti-rejection medication side effects to ongoing expenses, we’ve collated some of the key themes from this eye-opening discussion in a new report entitled The Patient Voice: Preparing for Life After an Organ Transplant. If someone you love is awaiting a life-saving transplant – or you’re a transplant candidate yourself – don’t miss this collection of real-world tips, experiences and checklists.  Also, please share this free report with anyone who might find it useful.

Click Here to Read or Print This Free Report

Do you know someone living with a mental health condition such as bipolar II disorder, alcohol addiction or major depressive disorder?  Check out our previous report about getting the most out of inpatient therapy (hospitalization).


It’s World Kidney Day. How Are Your Kidneys?

Posted March 8th, 2012 by

Today Is the Seventh Annual Observance of World Kidney Day

Today is World Kidney Day, a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF).

Since 2006, World Kidney Day has been raising awareness of the importance of our kidneys to our overall health.  For example, did you know that it’s our kidneys’ job to remove toxins and excess water from the body?  Or that these two organs – roughly the size of a fist each – help regulate our blood pressure, blood cell production and bone health?

It’s no wonder then that humans can’t survive without kidneys, which brings us to this year’s World Kidney Day theme:  the need for life-saving organ donations and kidney transplants.  Without them, those with chronic kidney disease who progress to complete kidney failure (aka end stage renal disease) have a bleak prognosis.  Unfortunately, the need for transplantation is growing worldwide due to the increasing prevalence of diabetes and high blood pressure, the main causes of kidney disease.

A Kidney Transplant Saves Lives for Those with End Stage Renal Disease

As a result, prevention is inextricably linked to being healthy in general:  maintaining a healthy weight, exercising and eating right.  Here in the US – where approximately 26 million Americans have chronic kidney disease, and millions more are at risk – the National Kidney Foundation has launched a campaign featuring legendary restaurateur B. Smith.  Check out the video below to learn about the risk factors for kidney disease and how you can reduce them with simple actions such as reducing salt and fat intake, quitting smoking and replacing soda with water.

Are you living with high blood pressure, diabetes or chronic kidney disease?  Connect with others like you to share experiences, support and advice.  At PatientsLikeMe, we have 2,700+ patients with hypertension, 2,700+ patients with type 2 diabetes and 300+ patients with chronic kidney disease.  In addition, 1,900+ members have undergone – or are awaiting – a kidney transplant, while 50+ others are on hemodialysis or peritoneal dialysis.  Add your own story and gain insight from this wealth of real-world knowledge.


Have a Heart Today. Become a Donor.

Posted February 14th, 2012 by

Registering to Be a Donor Is About Giving Life to Another

February 14th is Valentine’s Day.  But it’s also National Donor Day.

Started in 1998 by the Saturn Corporation and United Auto Workers in cooperation with the US Department of Health and Human Services (HHS), this annual event is focused on five points of life:  organs, tissues, marrow, platelets and blood.  All of these can be donated to help save and/or improve the lives of others.

Here are a few numbers that help underscore the need:

  • 112,945 people are currently waiting for an organ transplant
  • 18 people will die each day while waiting for a new organ
  • 1 organ donor can save up to eight lives

Does your driver’s license indicate that you’re a donor?  If not, and you want to give others a second chance at life, sign up to be a donor today.  Worried you’re too old?  Don’t be.  The condition of your organs is more important than your age, and there are only a few absolute exclusions (such as HIV infection, active cancer and systemic infection).  So don’t rule yourself out when there’s a chance you could help.

Finally, there is a particular need for minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation for everyone.

A Snapshot of the Organ Transplant Patients at PatientsLikeMe

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have hundreds of transplant patients among our members, including those with (or awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through transplantation? Read our recent interview with kidney transplant recipient and type 1 diabetes patient Michael Burke.


Battling the Complications: An Interview with Diabetes Patient Michael Burke (Part II)

Posted November 9th, 2011 by

Last week, in Part I of this interview, PatientsLikeMe member and blogger Michael Burke shared his sister Linda’s struggle with type 1 diabetes.  Today, we learn about his own type 1 diabetes journey, including his June 2011 kidney transplant as a result of diabetes-induced kidney failure.

1.  What diabetes complications have you faced?

PatientsLikeMe Member and Diabetes Blogger Michael Burke

Diabetes is a disease that appears to be misunderstood by most people, in that the consequences of the disease can lead to many different complications.  As I mentioned earlier, both Linda and I suffered from diabetic retinopathy…essentially, you can go blind from diabetes.  Another complication is nephropathy, or kidney disease.  For me, this led to kidney failure and the eventual need for a kidney transplant this past June.

Heart disease is another major complication.  Personally, I never knew that I had any heart disease until one day my primary care physician sent me for a routine stress test.  During the stress test, the cardiologist felt it necessary to immediately admit me to the hospital and do a cardiac catheterization the next morning.  When he did, he found two blockages in my right coronary artery – one was a 90% blockage and the other was an 85% blockage.  I then had several stents placed.  After two years, those stents were becoming ineffective, and I required heart bypass surgery.  Lucky for me, there was a heart surgeon in Boston who was doing bypass surgery robotically.  What this meant for me was a much smaller incision (about an inch and a half compared to the whole chest being opened up), and being a diabetic, less risk of infection and a shorter recovery time.

Another complication is [diabetic] neuropathy, or nerve damage.  Typically, this usually affects the feet, but other parts of the body can be affected as well.  As for Linda and I, the neuropathy is/was primarily in our feet.  For Linda, it was extremely painful, with the feeling that you are constantly being poked in your feet with something very sharp.  For me, the feeling has been quite different, in that there is no feeling, at least around my big toes, which in turn has caused some balance issues for me.  Neuropathy is serious, it’s not just that it is painful for some and a loss of feeling for others.  It can also lead to amputation of your toes, your foot, or in drastic circumstances, part of or all of your leg.

2.  What was your kidney transplant experience like, and how are you doing now?

I went through a whole lot of emotions over the course of getting this new lease on life.  Although I had been prepared by my kidney doctor over the last several years that I was most likely going to need a kidney transplant, the day I sat with the transplant team for the first time was absolutely frightening and surreal at the same time.  It’s hard to explain.

I just remember sitting with the transplant team and when the transplant doctor said, “Ok, we will put you on the transplant list within the next few days, and we will move forward,” my heart was pounding so hard I thought it was going pop out of my chest.  There is also a lot of anxiety that goes along with the whole transplant process.  At first, I didn’t know where the kidney would come from.  I knew there were family members who said that they wanted to be tested and now I was also on the national transplant list.

Michael Burke's Brother and Kidney Donor Tommy

When my brother Tommy was starting the testing process, I kept going back and forth in my head.  It would be great to have someone close to me donate, but then there was the guilt.  If I ever rejected their kidney now they are left with just one.  As it turned out, Tommy was a 5 out of 6 antigen match, and he donated his kidney to me in June.

I had often heard before the transplant that you won’t understand how badly you felt or how sick you were before the surgery until after the surgery.  That could not be a truer statement.  I never really felt sick before, and I have been told that is because kidney disease can be very slow and progressive.  However, looking back today, I can honestly say that there has been a 180 degree turnaround.  I have much more energy and I just generally feel well – it has been a huge difference, and I have Tommy to thank for that.

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Are you a diabetes patient as well?  In honor of American Diabetes Month, share your thoughts and stories at CallingAllTypes.com.


It’s World Kidney Day! Share on…

Posted March 11th, 2010 by

smallwkd_logo_2010_4emailIt’s World Kidney Day 2010 – a global health awareness campaign focused on the importance of kidneys and prevention of kidney disease. According to www.world kidneyday.org, “Many people are currently not aware that their kidneys are damaged and they might find out too late. Dialysis and transplantation can be prevented if kidney diseases are detected early.”  Here are some more interesting facts from the site:

  • Diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD).
  • There are currently over 240 million people with diabetes worldwide. This figure is projected to rise to 380 million by 2025.
  • The number of people with renal replacement therapy have increased from 426,000 in 1990 to 1.5 million in 2000 and is expected to rise to 2.5 million by 2010.

Did you know also know there are more than 83,000 people in the United States currently on the kidney wait list?  As members of our new transplants community can tell you, it can be a long and trying journey to get a new organ.  (Watch this video to learn more about our transplants community which launched earlier this week.)

Let’s raise awareness of the risk factors for kidney disease.  And thanks to all of you who are healthy enough to be donors.  Your kidney could save someone’s life some day.


PatientsLikeMe and Novartis Unite to Launch Community for Organ Transplant Recipients

Posted March 9th, 2010 by

Recognized by Fast Company as two of the 50 Most Innovative Companies in the World, PatientsLikeMe and Novartis have united to picture-4launch a new community for organ transplant recipients (including kidney, lung, heart and liver).  In the news release announcement, PatientsLikeMe President Ben Heywood and Novartis CEO Joe Jimenez discuss what impact this community could have for organ recipients.  Ben also discusses the community in more detail as part of our PatientsLikeMeOnCallTM podcast series.  Listen in to learn more about our new programs PatientsLikeMeMentorsTM and PatientsLikeMeInMotionTM.

PatientsLikeMe member dwilliams