Tuesday, August 28, 2012

Bless You, Robin Roberts for Encouraging Bone Marrow Donor Registration

Robin Roberts is saving lives.

The ABC Good Morning America anchor is shining a light on bone marrow transplants in an unprecedented way and taking the mystery out of the procedure. Even I, a transplant survivor, am learning things I never knew about signing up to become a donor: mostly that it’s easy and painless.

And so important. 
Robin Roberts  (Donna Svennevik/ABC)

Robin’s actions have already resulted in an onslaught of people volunteering to be donors. 

That can only mean lives will be saved. Many, many lives.

I cannot think of a fitting commendation for what she is doing. She is to be celebrated and honored. She deserves not only our best wishes as she undergoes her own stem cell transplant, but mega-hugs and never-ending gratitude.

When I had my transplant nearly four years ago, I donated my own stem cells,  an autologous transplant. It meant I didn’t have to find a donor for the life-saving procedure. The transplant was not an easy experience, not by a long shot. I’ve likened it to a month of hell for a chance at life.  As I approach the anniversary, I know it was completely worth it. I am ever grateful that medical science knew how  to treat my rare type of lymphoma.

But not everyone eligible for a transplant can donate their own cells. Their types of cancer  require them to get new stem cells from another person, what’s called an allogenic transplant. My heart aches for those vulnerable patients: Not only are they facing a life-threatening disease and a scary transplant, but they must wait for a suitable donor for the only procedure that can possibly save their lives. It’s a helpless situation at a time when they are at their lowest.

I remember reading about a local drive to find a donor for a toddler who was battling cancer. A few weeks later, I read the obituary for boy. Although 150 people had registered during the drive, none was a match. And time ran out before one coud be found.

So it is critical that word gets out about the importance of registering to be a stem cell donor.

As Robin Roberts has told all of us, enrolling in the donor program is easy. The very term bone marrow transplant conjures up a painful procedure. But it’s not. Nor is the donating process. (It's weeks in the hospital that are the hardest for a patient.)

Nowadays, a transplant itself takes minutes and is like a blood transfusion, when the blood contains baby stem cells that engraft inside of your bones and begin the slow process of making the blood healthy again. Signing up to be in the registry involves a cheek swab and donating is like giving blood. 

The U.S. Department of Health and Human Services says each year, more than 18,000 Americans could benefit from a bone marrow transplant, sometimes called a stem cell transplant. In slightly more than half the transplants, one study says,  the patient can donate his or her own cells. (It all depends, I’m told, on the type of cancer and how it responds to treatment.) But thousands (another report says 70 percent) must await a donor.

 A twin or a sibling can be a match, but it’s not guaranteed. I know two people with the same type of leukemia who have spent months this summer awaiting donor matches. One is on the west coast, the other lives in the east. One is older than me and the other in his 20s. In both cases, the patient has a brother. In both cases the brother was not a match.

Some 40 percent of allogenic transplant patients are related to the donor and nearly 60 percent get a blood donation from a complete stranger.

Robin Roberts was fortunate: Her sister was a perfect match for her transplant to combat myelodyspastic syndrome,  a pre-leukemia disorder that was a side effect of her previous chemotherapy.

As she did when she fought breast cancer after a 2007 diagnosis, Roberts shared her new health challenges with her television audience.

I watched years ago as she fought back tears to disclose her breast cancer diagnosis. I loved the stylish wig that made her look like herself when she returned to the air. But I also cheered her courage as she shaved her head on TV and went public without the wig. I was heartened by her spirit and faith and success in fighting her cancer.

And now, as she talks about her new battle and the bone marrow donor program, I love that she is doing more than helping explain things.

She is educating the masses about bone marrow transplants, dispelling myths and demonstrating the importance of registering to be a donor.

In two weeks after the June 11 announcement about her new disease, 
15,000 people had joined the bone marrow registry, 11,200 more than would have normally signed up during that period.

And last week on GMA she featured a touching segment in which a female bone marrow transplant survivor met and thanked the stranger who had donated his stem cells for the procedure. That day, the national donor registry Be The Match reported registrants had more than quadrupled the daily average, from 300 to 1,233.

Here are the highlights of what you need to know to become a donor:

-- It’s easy to join.  Be The Match will mail you a kit so you can swab your cheeks. No blood-letting or bone-drilling involved. The kit will include detailed step-by-step instructions and a postage-paid envelope to return your samples. You can either check their website or call them at 1-800-MARROW2

-- Donors must be between the ages of 18 and 60. All ethnicities and people of blended heritage are needed. You must be in good health and have an acceptable health history.

-- If your tissue samples (not your blood type) match a patient and you are selected to donate, the procedure is relatively simple.

In the past, donations were uncomfortable, involving a needle in your pelvic bone. But now, most donations are via a miraculous event called peripheral blood stem cells donation. The donor lays on a hospital bed while blood pumps out of her body, goes into a machine that collects the baby stem cells and returns the rest to the donor. If you have to travel to donate, your costs are covered by the national registry.

-- You can donate over and over. Because your body replenishes the blood and cells you contribute, you can donate as many times as you want. But make sure you keep the registry updated if you change addresses or phone numbers.

Robin’s procedure is scheduled for Sept. 5. In the transplant world, that will be known as her new birthday, the first day of her new life. I will be celebrating my 4th transplant birthday five days later. I won’t have a candle on my California Pizza Kitchen key lime pie but I’ll still make a wish:

That the bone marrow registry continues to be flooded with donors, so that those who desperately need a chance at life will be able to get it.


Friday, August 3, 2012

Yippee! Some Places That Make My Disabled Life Easier (And a Few Gripes)

I’m not always a cranky handicapped person. Some things I encounter in my new disabled life actually make me thankful that a service or accommodation works delightfully well.
I do take note of those when I come across them.
But I also take note of things that drive me nuts, things that make my challenging life even more difficult.
Here are a few of each on my latest list:

The Cayucos Beach Inn: a small, privately-owned hotel in a tiny California coastal community that has the best accessible bathroom I’ve been in.
I’ve been in plenty of accessible hotel rooms and I can say this: You never know what you are going to get. One time I opened the door to find a bathtub right in the bedroom -- not one of those walk-in bathtubs you see on TV ads -- but a regular climb-in tub. I could not get in one of those unless I had a team of firefighters hoisting me in and out. That room also had a roll-in shower in the restroom that suited me just fine. (I was in a wheelchair at the time.)
Other times I find showers that have safety bars, but the shelves for the soap and shampoo are out of reach. Or nonexistent. 
But the Cayucos Beach Inn asked what type of accommodation I needed before I checked in. I said I pretty much just needed railings near the toilet and in the shower. (I can’t stand or walk alone without a mobility device.)
What they gave me was a spacious bathroom with a shower that had to have been designed by someone who was actually disabled. Not only did I find well-placed rails, but the handheld shower wand was at my level. The padded (yay!) shower bench pulled down easily from the wall.

There was a tray at shoulder level (when I was sitting) to hold my soap and little bottles. And the towel was reachable while I was still seated.
I know, it might not sound like much to the abled world, but the combination of all those things was nirvana for me.
The Stander Co., which makes one of my favorite walkers, is not only innovative but dependable and true to their word. I found their Metro Travel Walker online when I was looking for an alternative to the boring walkers that I seemed to see everywhere. 
In a previous blog I discussed the pros and cons on all the walkers I’ve used. My black walnut Metro walker gets compliments everywhere. I tell inquirers to write down the name and look it up on their computers. The walker is lightweight and fashionable. It’s the only one I can easily lift into the car by myself and I take it most places with me. It doesn’t meet all my needs, but it’s close to it.
So I was upset when one of the crossbars broke. I had bought mine from an internet
retailer, so I looked the Stander company up online and called it. I asked if the walker had a warranty, but said I didn’t have evidence of when I purchased it. They told me not to worry, the walker had a lifetime guarantee.
They sent me a new one free of charge immediately. 
When I recently had another minor problem, I called again.They repeated that the Metro is guaranteed for life and they shipped my replacement parts post haste.
This was not what I would consider a high ticket item, (a search online shows an average price of $100). I’ve used other walkers or mobility aids that were more expensive, some were given to me and and one I got for $12 at Goodwill. But if I had a problem with any of them, usually a bent bar or a stuck joint, I just tossed it in the trash and grumbled.
Dream Dinners is a make-it-yourself meal place I was introduced to before I got sick.
I used to go with a friend, where we would spend a couple of hours assembling meals that we could put in our freezer to last the whole month. It was fun, affordable and the meals were always healthy and tasty.
Now that I’m disabled, I can’t make the meals myself. Fortunately Dream Dinners began a Made-For-You program which was fabulously timed with my recovery from grave illness.
Now I order my meals a month at a time online, then I drive to the Dream Dinners nearest me at Granada Hills, Calif. (with my Stander walker in tow).  And when I show up myself to retrieve the meals, a friendly employee happily carries two big bags of meals to my car. 
And for the next month, I can prepare dinners for my family without having to reach for ingredients and stand at the kitchen counter chopping stuff endlessly, tasks that don’t come easy these days. 
Now, a few things I don’t like:
Restrooms with wastebaskets that require stepping on something to open them. People dependent on walkers or wheelchairs can’t do this. I have to grab the top of the can to lift it up and toss in my trash. Eeeuww.
Handicapped parking signs that are directly in front of the space, without a curb as a buffer. I’ve “bumped” many a fence or post with my car as I pulled right up to the sign.
Raised bumps near the handicapped entrance to a sidewalk. 
Usually yellow, they are officially called truncated domes and they are required by the Americans with Disabilities Act to let blind people know when a sloped sidewalk meets a street. But they can cause problems for people with walkers, canes or wheelchairs. I’ve read reports of people who have fallen from wheelchairs and been injured. And people with spinal cord injuries can go into painful spasms trying to cross those bumps in their chairs.
I agree with the person who wrote a blog post for California’s Assistive Technology Network  suggesting a compromise -- maybe some smooth spots can be interspersed near the truncated domes for those who are physically disabled.
One of the most popular strip malls in my community has a front row of numerous disabled parking spots (yay), but then a field of truncated domes and cobblestones to get to any of the establishments (boo). Nowhere is there a smooth path as an alternative.
Among the businesses in the mall are a massage place and a yoga studio. For disabled people to get to either of those therapeutic places to relax, they first have to cross a wide sidewalk that is guaranteed to rattle their brains and stress them out. And then exit the same way. 
Bottom line about things that make on my thumbs up or down list: for us handicapped folks, they might make us return customers. Or not. One of the stores in my local shake-your-brains-out strip mall was a specialty grocery store that shut its doors not long after opening. Had it provided a smooth entrance that I could navigate easily with my Stander-walker-thrown-in-the-shopping-cart routine, I think its days wouldn't have been so numbered. I would have spent gobs of money there. And I'm not alone.