Mamassage

Take Action!

People with organ transplants must take immunosuppressive (anti-rejection) drugs for the life of the transplant in order to lower the chance that the body will reject the organ. Currently, Medicare pays for most transplants and covers drugs for 36 months after the transplant if the person does not qualify for Medicare because of age or disability. At the end of the 36 months, the kidney recipient must pay for immunosuppressive drugs through private insurance, public or pharmaceutical programs, or pay out-of-pocket. Too often, people with kidney transplants must choose between taking the medication they need and other living expenses, and they may miss doses or stop taking the medication altogether, increasing the risk that the transplant will fail. Some people on dialysis may even decide not to have a transplant because of worries they will not be able to pay for the drugs. Although immunosuppressive drugs are very expensive, costing $10,000 - 20,000 a year, if the transplant fails the person returns to dialysis at a cost of over $65,000 a year to Medicare, far more than the cost of the drugs. Congressmen Dave Camp (R-MI) and Ron Kind (D-WI) introduced H.R. 3282 that would extend Medicare coverage of immunosuppressive drugs for the life of the kidney transplant. This is a big step toward preserving the life of kidney transplants! Please write to your Representatives and ask them to co-sponsor HR 3282. Share your story, or the story of a loved one, about your experiences with immunosuppressive drug coverage. For more information on this topic, please click here.

sleepy

sleepy, originally uploaded by mamassage.

Taken at Mimi & Papa's rental house during their visit.  I'm just trying out the blogging photos option on Flickr.  By the way, if for some reason you don't know Flickr; it's time to crawl out from under that rock & give it a whirl.  It's a lot of fun.

Neat Story

LOS ANGELES, August 7, 2007 (KABC-TV) - The push by the Department of Motor Vehicles to get more people to become organ donors led to one DMV employee giving the gift of life to another. Gaston Gonzalez had needed a new kidney since 1999.      No one in his family was a good donor match.      But at a Donate Life event last year, fellow DMV employee Hooshang Torabi heard Gonzalez's wife tell their story. Torabi offered to donate a kidney to Gonzalez in honor of the donation his daughter made to save her mother's life with a kidney donation in 1998. The two underwent a great deal of testing and it was determined Torabi was a perfect match. The transplant occurred last week. LINK: Transplant Donor Network (www.onelegacy.org)

Cock

So lately Kajsa’s been into making inappropriate noises as often as possible. It’s annoying, but we know hope it’s a phase. Having experienced Maya when she was four; however, I have a bit more patience for it than Chris does. Unfortunately, though, Kajsa was at the store with Chris when the following interaction occurred. Some dear, sweet little old lady walked up to Kajsa proclaiming, “Oh what a cute little girl.” Kajsa immediately turned to sweet little old lady and bellowed, in a preternaturally low voice, “Cock!” I’m not sure what Chris did at that point as this is the part of the story where I interrupt each time, either with fits of inappropriate giggles or queries as to where she could have picked up on such vernacular. Part of me feels that I may be to blame. You see, Kajsa’s favorite restaurant, bar none, is the Chinese one down the road. The woman who owns the place coddles my girl telling her how proud she is that she eats spicy Kung Pao Tofu. She, additionally, always gives Kajsa some little gift as we leave. These have been everything from a bird whistle that you blow water through to make it sing - to magnets with full frontals of koala bears. Seriously, they're odd. And yet, there they are – proudly displayed on our refrigerator. Anyway, while waiting for our food to arrive, we always have to check out the placemats’ Chinese Astrology. Chris is a rabbit. Maya’s a monkey. Kajsa’s a sheep. And when it gets to me, having been born in 1969, I unfailingly proclaim, “I’m a cock!” And so I am. I’ll crow all day unless you put a bag over my head. Heck we moved out into the middle of nowhere with nothing to do and thousands of miles between myself and anything or anyone familiar. So what did I do, I started a blog and began some cyber crowing. But this isn’t really about me, is it? It’s about my dear sweet little girl with a mouth like a sailor. We’ve caught her saying a few other questionable (at best) things lately as well. She’s called her new puppy, Rufus, both a “little prick” and a “little pussy”. (Hmmmmm…Canis Hermaphrititus?) Now, I know she didn’t get those here. When we asked her where she did hear them, her response was, “Pre-school – a loooong time ago.” Mind you, she’s barely four. And while that does, somewhat, let me off the hook; it seems that now I get to have a fun, and oh so comfortable, conversation with her teachers. I’ll let you know how it goes.

Paul's Day

June 21st marks a very important anniversary in my family. Three years ago my father-in-law, Paul decided to discontinue dialysis therapy. This may seem to be a horrific thought to some of you out there. But for him it was a very courageous and well thought out decision. You see, Paul had developed type one diabetes at 11 or 12 years old and lived with it for 48 years. He was originally told that he probably wouldn’t live to be thirty. He and my mother in law, Lynne, had three rowdy boys: Steve, Erick & Chris; followed by a very much alive daughter, Heather. Paul also got to see all of his boys married, as well as looking into the eyes of four beautiful  granddaughters.  So he’d seen so much more than he ever expected to. Now during this time his health continued to decline. By the time that I met Paul, he was already sporting two prosthetic legs and soon thereafter lost three of his fingers. I saw him go in and out of the hospital and rehabilitation centers more times than I remember. Through all of this, he usually kept both his senses of wonder and humor. It often made me feel awed, myself when I was around him. His love of life tended to be contagious. Now I’m not saying that every day was fluffy clouds and flying unicorns. But looking back, his joy of life and thirst for divinity, are what I remember most about him. When he went back into the hospital for the last time, he’d lost another dialysis catheter site and they were talking about placing a port in his last whole arm. It actually didn’t take Paul long to decide that this wouldn’t do. I cannot possibly imagine the conversation that he must have had with Lynne. To try to do so might just break my heart. We got the call later that day to tell Chris that his father had decided to allow himself to die with dignity. How could he not – it was how he’d lived his life. We made some phone calls and headed off to the hospital. Paul couldn’t see very well by then, but was so overjoyed to have us present. There were so many photo albums to pore over and talk about. I left for a while as I knew that relatives would be pouring in and I wanted to clean the house. This also gave the boys some time alone with their dad. Calls were quickly made to Hospice and Paul was brought home to receive his constant flow of visitors. His last meal was delicious biscuits and gravy ala my brother-in-law, Erick (who had raced back from California) and on father’s day he had the tiniest sip of scotch with his children. It took 3 days for Paul’s body to shut down and he left us on summer solstice – the longest day of the year. He breathed his last breath in the most, well, beautiful way imaginable – with his family all standing round holding him and telling him that they loved him. And we all meant it so incredibly much. I think that everyone who ever knew him is a better person for it. It has been a few years since that night, but I still think about Paul every day. Whether I’m playing with his grand-daughter and she looks at me just so or I find myself gawking at the beauty of life with its full spectrum of possibilities, he’ll just pop into my head. As the anniversary of his passing has drawn nearer I’ve felt an increasing need to express my love and admiration for Paul – husband, father, son, brother, uncle, seeker, teacher, adventurer, inspiration…

tribute

Moreena over at Healthcare Hollaback & The Wait and Wonder has sent out the request for positive hospital stories as they pertain to the folks who in their kindness have pulled our stays further from unbridled terror. And I was so pleased to find myself torn when trying to decide who to honor. Finally, I settled on the thought possibly posting more than once. The following submission is but a snippet of a(n even) long(er and more) rambling post I wrote in January of 2006. In it I barely mention our midwife and the wonderful pediatrician she recommended. Were it not for this chain of caring professionals; however, Kajsa would have wasted away to a toxic bit of nothingness. They forever hold my grateful heart in their souls. The true honoree of the post is a nurse, named LaDawn. And bear in mind that while she was, indeed, a real live person; she has come to represent to me an archetype of sorts – so often have I thought of her. And now for the real post. ~~.~~.~~.~~.~~.~~.~~.~~.~~.~~~.~~ One of the things that Chris always loved best about me was my parenting style. So when we found out that we were to have a baby, we were elated. We signed up with Baby Diaper Service, took Bradley classes, and found the best midwife imaginable. Kajsa was born at home on a warm late spring day. She was full term (although a bit small) and had all her fingers and toes. We figured the rest was the easy part. After all, I was an old pro. I’d always remembered the words of Maya Angelou, “Ain’t no trouble when you’re packin’ for double.” Toni, our midwife, came by at day three to do the heel stick. I cried and cried to think of anyone hurting my baby. It all came back normal. Kajsa was a bit underweight. But, we figured all babies drop at first. When Kajsa was still dropping at 2 weeks, Toni gave us the name of a very good pediatrician. Dr. Oriel is this neat little guy who reminds me of Peewee Herman with out the annoying laugh or off beat movie preferences. He had actually taught at Albert Einstein, and has a huge love of babies. We went to see him. He began to talk to us about vaccination schedules. We told him that just was not gonna happen. While he was not exactly OK with this he agreed that it was our decision to make, and asked only that we read his information, as well as the literature upon which we had based our decision. Dr. Oriel was also worried about Kajsa’s weight and had me go to see a lactation specialist to make certain that I was nursing well and that she didn’t have any problems with sucking. While we were at it, we began checking to see if she was allergic to my milk. This, I thought was the most absurd and insulting of notions I’d ever heard. Now I wish with all my heart that this had been the issue. I would have been quite put off, but I would have eventually gotten over it. I was pumping around the clock and mixing my milk with formula at high caloric ratios to try to fatten her up. But she just kept dropping weight. We met Dr. Oriel at his office on the 4th of July for a weight check. Down, still. Then he met us there two days later on a Sunday. He was so befuddled by our little bird girl. So, he said that he’d really like to take some blood to rule out a few things. Gulping down the nausea, we said alright. We then watched in horror as he tried desperately to get blood from both arms. Finding this to be extremely difficult, we went downstairs to the lab. The woman there was eventually able to get some blood from her scalp. The poor girl was just SO dehydrated. We went over to some good friends’ house that night for a visit and were just settling down to watch Lord of the Rings, when my phone rang. Dr. Oriel was on the line. Since he knew how little we valued Western/Allopathic medicine. He pulled no punches. “Rowan, there’s something wrong with Kajsa’s kidneys. We need you to go to MaryBridge Children’s Hospital. You have time to go home and pack some clothes for yourself. Do not go anywhere else. You are in direct admission. That means they know you are coming.” I hysterically went tearing into the other room where Chris was playing video games with his friends. I’m not sure that dolphins could have understood me as I tried to relay what I’d just been told. Chris took the phone and got directions to MaryBridge.  As we drove back to Auburn, I just kept wondering if this could all actually be real. I sobbed for the whole ride and just kept thinking that they must be horribly, horribly wrong. These things simply do not happen to me. I vacillated between disbelief and sheer terror. Chris said nothing and drove. As I arrived at our house, I couldn’t figure out what to pack. Should I take clothes for Kajsa? Would she wear them while we were there? How many diapers would we need? Would there be a place to wash them? This is how much I knew about hospitals. I grabbed about 500 ounces of my milk from the freezer as we ran out the door. We arrived safely (somehow) and were admitted to the seventh floor. Chris and I filled out what seemed like sooo much paperwork. (I can now do this in my sleep.) Chris stayed in the room as the IV specialists came up to draw more blood. I have had an intense fear of needles; so a wonderful nurse named, LaDawn, took me to a soundproofed treatment room to figure out the unbelievably industrial looking breast pump. While there, she talked to me about her son. He had some chronic illness. She and her husband had lived on an army base in Germany when he was diagnosed. Her experiences led her to change careers to become a pediatric nurse. This story would repeat itself over and over during our various hospital stays. The mommy nurses were always my favorites. They just get it. This is who can provide emotional support like no one else. It is from nurses whose children have had chronic illnesses that I learned how to be an unbelievable advocate for Kajsa. They are a resource to be valued, and never overlooked. They are, indeed, the key to hospital sanity.

Happy Aniversay, Kiddo

I can't believe that it has now been one year since we got the call to go down to Phoenix.   And tomorrow will be the anniversary of Kajsa's kidney transplant.   It gets me all choked up to think about it.   But then again, I cry at the drop of a hat these days.   (I'd be great in movies - or maybe an after school special, eh?) Anyway, the Prescott transplant support group had a barbecue today, so we headed over there after I got off work.   It was such a beautiful day.   (80 degrees, and not a cloud in the sky.)  After we'd all eaten and had a while to chat; our host, Robin, brought out a cake with a #1 candle on top which she promptly lit.   We all sang happy birthday, as there's not a happy transplant anniversary song.   (I'll be taking submissions, if anyone's up for the task.)  Then Kajsa blew out the candle and made a wish.    Upon doing so, she proclaimed to everyone, "Now I'm five!"   So we had to tell her that this was celebrating her new birthday, not her old one.   It might take a while for her to fully 'get' it.   But at least she doesn't think she's five anymore. Tomorrow evening we're heading over to another barbecue.   I guess it's the season.   Yep, with our newfound freedom, and as time goes by, we're making more and more friends.   I guess you could say that her transplant actually brought new life to the whole family.    What a precious gift.