Feeling Stronger Every Day

First Day Home from the Hospital

with a Doting Pacey Cat :)

Each and every day, I make a little progress and feel a little better. When I first left the hospital, I was walking with a cane. For the past 5 days, I have been walking entirely on my own again. My muscle tone is slowly returning and, once again, I can stretch and bend. The incision and drain sites are still sore, but they are healing nicely. My belly region still looks quite puffy. I imagine it will take some time for it to regain any sense of it's original shape. I'm getting used to my daily attire - sweat pants and a loose fitting top!

Kevin and I have been getting out and about more and more. Today, we spent two hours at the H&R Block getting our taxes done. Always a relief to get that annual chore completed! We've also done errands - grocery shopping and banking...and some fun stuff, too. We've been out to eat a couple of times and yesterday we went to a local antique mall, where I found a beautiful ceramic picture frame for under $5.00. It has carved morning glories around the entire boarder - so pretty! I put one of our wedding photos in it and placed it with our other photographs on the window shelf.

Though I'm still dealing with medication side effects, mostly tremor and nervousness, I am sleeping fairly well at night again, which has helped me to overall feel healthier and more at peace. I've gotten accustomed to the twice weekly lab appointments, too. Initially, it felt so burdensome, but, after going a few times, it began to feel commonplace.

So, life is slowly returning to normal - but an even better normal. Already, I can tell my energy levels are higher than pre-transplant during my uremic stage. I'm no longer nauseous, as I was previously, and despite the pain associated with the surgery and the side effects from the medications, both of which will lessen and go away with time, generally, I'm already physically more comfortable. Quality of life is definitely improving!

Throughout this period, I've been able to maintain a positive outlook, which sure has helped. Kevin's support can not be underestimated. He's been a remarkable partner, a very loving husband, and an extremely caring caregiver. This time in our lives has been difficult, but together we are seeing it through, and we are so fortunate that things have gone and continue to go well. Desirae's kidney is doing a remarkable job!!!

Amazing Amaryllis

First sprout appears

Initial growth

Moving up!

Leaves in the middle, flower buds on the sides

Buds are pronounced

Getting tall!

Tall stalks with red buds

In full bloom

For Christmas, my daughter treated me to a most wondrous gift. She took me to my favorite local greenhouse nursery and let me pick out whatever I wanted. She is a brave soul. To be in a garden nursery for me is like being a kid in a candy shop. So many choices, so many favorites, so hard to pick! This time, though, I knew exactly what I wanted to find...and it wasn't long before I had a Red Lion Amaryllis bulb in a terrific, heavy, ceramic pot. Amaryllis flower in a variety of colors from white and pink to red...but the bright, shiny red flowers have always been my favorite.

At first glance, the bare bulb half buried in the dirt doesn't look like much...but oh the wonders to soon behold! Starting with a tiny green shoot, followed by a rapid succession of growth, the amaryllis develops gradually until about two-three weeks pass, then the immense, showy blooms open, almost before your eyes. So beautiful! What a truly amazing plant!!!

Home from Hopkins!!!

What an amazing hospital experience! The Johns Hopkins Transplant Team was simply awesome.

Desirae and I started our journey as pre-op buddies side by side, as members of the surgical and anaesthesiology teams prepared us for the upcoming surgery. I was so impressed by the manner of Desirae's medical team....how encouraging and caring they were. Each person who came to visit prior to surgery eased tensions and gave a thorough rundown of what was to be expected. Desirae was taken into surgery first, and then I was prepped. I received an equally supportive team who explained the process fully and made me feel that I was in the best of hands.

The surgery itself lasted around four hours. Directly afterwards, I was in the ICU, where I remained overnight in the skilled hands of the ICU nursing staff. In the morning, I was wheeled to the room that would be my home base for the next six days. Despite the scary nature of the situation, not once did I feel as if I was in any harm or danger. The nurses, the techs, nurse practitioners and doctors who worked with me daily were thorough - explaining every aspect of each and every step that I was going through. Johns Hopkins hires the best of the best. Both my daughter and I were well cared for every step of the way.

The end result - a successful surgery - a new kidney - the opportunity to keep living and experiencing this life I love. How miraculous is that!?!

Kevin stood by my side every second of the way. His steady, calm nature helped beyond what he will ever know. And, my beautiful daughter Desirae, what can I say? I owe you my life. Your generous gift will be appreciated for the rest of my days.

So, now we are home. Desirae and her boyfriend fly back to MA this afternoon to reenter their lives. Desirae looked simply radiant when she left the cabin this morning.

This whole experience has been so moving...nothing short of a miracle.

Look Up

Today's blog is a tribute to Jamie Sams, author of one of my favorite books, "Earth Medicine." Her profound writings have provided enlightenment and guidance, her words promote a deeper level of thought and subsequent peace and inner harmony. I turn to this book as a source of comfort and inspiration, never tiring of it, and often reread passages over and over again.

The following is a passage from Jamie Sams "Earth Medicine" ~

Reflections of Sky Nation

The thunder-beings were busy giving birth to new clouds, sending them to dance in the blue playground of the sky. Grandfather Sun provided the glittering sunbeams, which acted like jump ropes for today's newborn, puffy Cloud People.

One of the most curious little clouds wandered off on the winds. She decided she was going to have a talk with Sacred Mountain. "Grandmother Mountain, I've come to ask you if your forests need rain today," she said. I want to be of service, and so I thought I had better find out what is needed most."

Sacred Mountain told the little cloud that there was plenty of moisture today, but the little cloud could help in another way. Sacred Mountain taught the little cloud how to understand the thoughts and questions that human beings were having. It was fun for the little cloud to capture the waves of human thoughts rising from the Earth and to answer the humans' unspoken questions by becoming shapes that formed a series of ideas. The needed answers were found through linking ideas.

The little cloud approached Sacred Mountain at the end of the day with another question that caused Cloud to have a heavy heart, "Grandmother Mountain, I've worked all day to reflect helpful answers to the Human Tribe, but now I have one very important question. How can we get them to look up and pay attention?" ~

...stories, the colorful interplay of words such as these offered by Jamie Sams...a gentle reminder of keeping the faith...and looking up when you are feeling down!

The Bigger Picture

Having a chronic disease that worsens with time tends to gradually narrow one's focus. It's all too easy to be overtaken by the disease's advancing symptoms - the pains, worries and troubles associated with them.

My own experience with kidney dysfunction, and now end stage kidney disease, has been an experience from which I have learned so much. I've learned to better listen to my body and what it is telling me and also to understand that physical pain and discomfort, though certainly not pleasant or desirable to experience do not have to stop one in his or her tracks.

Anxiety is the bedfellow of sickness, but it doesn't have to have a crippling effect. I've discovered the more I learn about the disease, my treatment plan, and how to cope with the various issues that arise, the more calm I feel and the more ready and grateful I am for my upcoming transplant.

The transplant surgery was moved up a week, so now it will take place on Feb. 8. After meeting with the pre-op staff at Johns Hopkins and discussing the post-op regimen with a very encouraging treatment staff representative, I feel confident that the initial hardships of surgery and aftercare will be worth the eventual changes that lead to better health and a return to a greater quality of life. The anxieties I felt for so long are being replaced with a feeling of excitement and an overwhelming sense of gratitude for the support of family and such a fine medical program.

I know the days ahead will have unique challenges and frustrations, but they will also be filled with new opportunities. As I get closer to the surgery date, I remind myself how fortunate I am to have the chance of a better life, and I never forget all the people who are helping me get there. It is because of them that this life altering step is possible.

I'll end this post with a quote that seemed very fitting to me ~ it pretty much sums up what I am trying to express ...

"Whatever the ups and downs of detail within our limited experience, the larger whole is primarily beautiful." ~Gregory Bateson

The Wait is (Almost) Over

Today, my daughter called me with some very good news...we have a scheduled date for the kidney transplant. As it turns out, the donor is the responsible party for securing a surgery date. Desirae and I both passed all the necessary medical tests and hurdles. Now, an end to this process is in sight. Our surgery is set for February 15...just a month away. What a relief!

Desirae is such a strong and confident one...not at all scared nor worried about her huge participatory roll in being my kidney donor. Of course, as her Mom, it worries me to no end that she is doing this for me, but, at the same time, I couldn't be more grateful to her. My one and only child is giving me the gift of continued life. No little feat!!!

This news came at a time when my spirits were starting to dip. I have really been feeling the ill effects of the disease's final stage and my energy is down to a bare minimum now. Hearing that we finally have a surgery date and that with Desirae's donated kidney I'll have the chance to live a healthier life with more vigor again, and knowing my daughter's work place and boyfriend are both very supportive of her, boosted my state of mind tremendously. Things are going to be okay.

Another month to go, some difficult times still to face, but things are already looking up.

Dawn of a New Year

Most mornings I awaken very early now...insomnia has had a hold on me since the kidney disease has progressed. Although there aren't too many benefits to losing sleep...to be awake in time for the sunrise is a true exception. This morning was extremely chilly outdoors. It was down to 12 degrees outside and the wind was howling. Tree branches flayed about and many of them snapped and fell to the ground. The electricity went out during the evening, and, if not for the warmth provided by our woodstove, we would have turned to popsicles.

After adding another log to the fire, I wrapped myself in a blanket and waited for the light of day to appear on the horizon. The colors were spectacular...starting off soft and almost powdery and then igniting in brilliance, as the red ball of the sun rose over the mountains in the distance. Just gazing at the sun's glow made me feel warm and at peace.

This beautiful sight that occurs in the sky each day is free for all to see. Wouldn't it make a difference if all of us would pause to revel in nature's beauty? For me, it is so awe inspiring, so tremendously powerful to realize with gratitude that I was granted the gift of life on earth, giving me the opportunity to revel in, as well as be a part of, life's splendors. It also makes me wonder how anyone can take life for granted or choose anything but a peaceful existence...with so much to experience, learn, and share...and really so little time in the scheme of things.

2010 is the dawn of a new year and a new decade. The last ten years were times too often overshadowed by greed, war, and personal suffering...all taking their toll on the collective human spirit. Perhaps, though, these very digressions can help us rethink our life's purpose. Thinking a little less of self and a little more for the other guy, we can all move forward with more grace, honor, and gratitude...remembering always that life is a gift.