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Today, we picked some wild violet flowers to top our dinner salads. They're chock full of Vitamin C and tasty as well as pretty ... plus they're blooming plentifully all around our little pond, so they're right at hand!
Monday, April 22, 2013
Thursday, April 18, 2013
New Paints & Paintings
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| Sample of My Art Cards (2.5" x 3") |
Tuesday, April 16, 2013
Choices
All of us fortunate to be granted the gift of life make choices. Our lives are one big continuum of the choices we make each and every day. We need to be very cognizant that the choices we make build one upon the other to create who we are and how we, in turn, affect one another.
There will be much commentary about yesterday's Boston Marathon for both the heinous acts of destruction and the heroism displayed in its aftermath. We can't help but compare the duality of good vs. evil after such horrific acts of destructiveness take place. In its simplest sense, yesterday's events, both the positive and the negative, boil down simply to choices made.
The Boston Marathon, in and of itself, is an event that reflects the choices made by so many:
The runner, who pushes him/herself to train the body to endure the rigors of a marathon, and, by so choosing, ultimately earns a place in this most prestigious marathon.
The fans and spectators, who choose to attend the event to celebrate and cheer those athletes whose choices, and all their previous smaller victories of grit and determination, earned each the honor to take part in the race.
The organizers and facilitators of the marathon who choose to work tirelessly to promote and continue a glorious athletic tradition.
The security forces and medical practitioners standing ready to protect and assist, whose life choices and sacrifices led them to professions of service for their fellow man. The list goes on ...
Every person in attendance at the marathon was there because of choices made ... as was the perpetrator(s) who set the bombs that caused mayhem and destruction on a day meant to celebrate the victory of the human spirit. No amount of anger, pain, or pathos justifies this choice to terrorize and harm innocents. There is nothing to be gained, no reward, no glory in such willful destruction.
As with all who choose to act out hurtful, destructive deeds, the perpetrator of yesterday's horror sorely underestimated the better angels of humanity. Those who chose to commit yesterday's horrific crime now hide in cowardice awaiting only the admonishment and punishment earned by their ill choice of action. In stark contrast, the runners, fans, organizers, security forces and medical practitioners present at the marathon earned admiration for the choices that brought them there and for their subsequent courageousness and acts of heroism in the face of tragedy.
Although tainted by the inhumane choices of a few, nothing could dishonor the better choices of the many in attendance at the Boston Marathon. Despite the violence and the pain inflicted, yesterday's marathon event still overwhelmingly exemplified the victory of the human spirit and brought forth the better angels of humanity.
There will be much commentary about yesterday's Boston Marathon for both the heinous acts of destruction and the heroism displayed in its aftermath. We can't help but compare the duality of good vs. evil after such horrific acts of destructiveness take place. In its simplest sense, yesterday's events, both the positive and the negative, boil down simply to choices made.
The Boston Marathon, in and of itself, is an event that reflects the choices made by so many:
The runner, who pushes him/herself to train the body to endure the rigors of a marathon, and, by so choosing, ultimately earns a place in this most prestigious marathon.
The fans and spectators, who choose to attend the event to celebrate and cheer those athletes whose choices, and all their previous smaller victories of grit and determination, earned each the honor to take part in the race.
The organizers and facilitators of the marathon who choose to work tirelessly to promote and continue a glorious athletic tradition.
The security forces and medical practitioners standing ready to protect and assist, whose life choices and sacrifices led them to professions of service for their fellow man. The list goes on ...
Every person in attendance at the marathon was there because of choices made ... as was the perpetrator(s) who set the bombs that caused mayhem and destruction on a day meant to celebrate the victory of the human spirit. No amount of anger, pain, or pathos justifies this choice to terrorize and harm innocents. There is nothing to be gained, no reward, no glory in such willful destruction.
As with all who choose to act out hurtful, destructive deeds, the perpetrator of yesterday's horror sorely underestimated the better angels of humanity. Those who chose to commit yesterday's horrific crime now hide in cowardice awaiting only the admonishment and punishment earned by their ill choice of action. In stark contrast, the runners, fans, organizers, security forces and medical practitioners present at the marathon earned admiration for the choices that brought them there and for their subsequent courageousness and acts of heroism in the face of tragedy.
Although tainted by the inhumane choices of a few, nothing could dishonor the better choices of the many in attendance at the Boston Marathon. Despite the violence and the pain inflicted, yesterday's marathon event still overwhelmingly exemplified the victory of the human spirit and brought forth the better angels of humanity.
Monday, April 15, 2013
Garden Companion
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When I went outside to spruce up my perennial herb boxes this morning, this beautiful, golden toned skink came out of a crevice in the retaining wall just behind my planter boxes to soak in the early morning sun. That I was just inches away didn't disturb it at all ... unusual for what generally are such timid creatures. My puttering about was of little concern, and the skink didn't even mind keeping still to pose for a few pictures. The warming rays of the sun did feel really good!
Monday, April 8, 2013
The Transplant Experience ~ Part III ~ Life Goes On
To say my entire being was filled with gratitude after my kidney transplant is an understatement. Words simply can not express how thankful I was to be alive, nor can they measure the degree of gratitude I held for those who helped make this possible. To say life post-transplant was easy would be far from the actuality faced each day.
The day we drove home from the hospital, it was snowing again. All around us, the wintry world in Maryland more closely resembled what I think Nome, Alaska would look like. Snow drifts piled high on either side of the road and entire areas were engulfed in white. In my 50+ years, I had never witnessed such a winter. By the time we reached the base of our steep driveway, it was a blizzard. There was no way we could make it up to the top in our car...and the only alternative was to trek up the windy hill to the cabin by foot.
First, my husband and Steve helped Desirae up the drive. With Kevin on one side and Steve on the other, I watched as they slowly and steadily supported my daughter and helped her up the hill. The snow was coming down so hard and they were soon out of my range of view. As I sat behind in the car, I wondered just how I was going to get up that drive. My legs were still so weak that I was walking with the support of a cane, and my surgical site was no where near healed. I still had the drainage sac attached to my abdomen as well. I could barely maneuver on a flat, level stretch and now I would need to go straight up our snow covered driveway.
More quickly than I'd imagined they'd be, Kevin and Steve were back to escort me. They'd managed to get Desirae safely up and now it was my turn. So, what would be one of the longest most difficult hikes of my life began. The patience Kevin and Steve exhibited was remarkable, as my pace was as slow as it could be and still be moving. Each step I took felt grueling...but I was determined. I thought to myself, if I could successfully get up that driveway in my condition, I could do just about anything. Step by slippery step, we climbed. About midway up, when our cabin home was just beginning to come into view, I couldn't help but burst out laughing at the absurdity of this situation. If the medical staff at Hopkins had known about this, I wouldn't have been allowed to go home. But, here we were in the middle of the driveway in a blizzard. Our climb continued. If I'd felt triumphant on the "victory lap" when wheeled down the hospital corridors toward the door to exit for home, then I felt like a super star when we made it to the top of the drive and we were all safely settled in the cabin. This upward ascent through the snow was a fitting conclusion to the hospital experience, and it was also a fitting beginning to post transplant life.
Within a few days, Desirae and Steve returned to MA. Desirae made a tremendous recovery and was good to go and continue on with her life. Recovery came a lot slower for me. It would take several months for the surgical site to fully heal. My life was now one of taking anti-rejection medications and dealing with their side effects and frequent blood draws and medical appointments. My focus was on regaining physical strength and maintaining emotional balance.
If I have any advice to give about a kidney transplant, it would be to carefully choose your nephrologist, your kidney specialist who will be your continuing care physician after your transplant. I can not express how critical the relationship you share with this physician will be, not only to your recovery process, but to your life long maintenance of good health post transplant. My doctor is a woman about 12 years my junior. Not only is she a brilliant physician, she is also a person for whom I have utmost confidence and trust. She is personable and caring, and I can speak freely with her about all of my medical concerns. She is also willing to work with me, and, when it makes sense to do so, make exceptions to medical protocol and try different approaches ... very important since all of us have unique biochemistries and will not always adhere 100% to a general, one-size fits all standard. I believe the quality of communication you have with your nephrologist is directly proportional to how well you can achieve whatever level of optimal health is possible, given your own individual condition post transplant.
Patience with oneself and a changed way of life is critical. It takes a long, long time to feel anything close to what "normal" may mean for you with all the drugs you have to take to maintain the health of your new kidney. In my case, the most prolonged difficult side effect from anti-rejection medications is insomnia. I have not been able to regain a normal sleep pattern post transplant ... and good sleep is so critical to feeling good. Always a morning person in the past, I now have adjusted to sleeping when I can, which often means going to bed late and sleeping late, not an optimal adjustment, but fortunately a workable one for me. Urinary tract infections became the bane of my existence post transplant, and especially for women transplant recipients, this can be common. Weight gain and hair loss are also side effects many people, including myself, bear from medication side effects. They are inconveniences and discomforts, but a small price to pay for the gift of continued life. I also came down with an acute case of Lyme's Disease the year after my transplant, for which I was briefly hospitalized. If this disease had gone undiagnosed and left untreated, it could have proven fatal. Ultimately the disease could have attacked major organs, and with the compromised immune system a transplant patient lives with, irreparable damage likely would have been the result. Extreme attention and diligence to health become qualities one must acquire quickly post transplant if they are not already in place. You have to pay attention to your body and what it's telling you. Plus, you have to become obsessive with hand washing. It's one of the most important things one can do to reduce the effects of the transmission of germs which are everywhere. Living with a compromised immune system makes one much more vulnerable to germs and getting colds and the flu. Colds and flus can be worse and last longer or lead to further complications in those who have lowered abilities to fight off infection. So, you need to be cognisant and careful ... much more so than ever before. With time, even those things that were most difficult post transplant become much more manageable.
As I mentioned in my last transplant post, I was told, just before going to the hospital, that receiving a transplant would be like transforming into a butterfly. I also said I didn't fully comprehend this beautiful analogy at the time. Now, I think I do. The long stretch of ill health prior to a transplant is like a dormancy or hibernation period. Everything slows down for you and you are in a holding or waiting period. Your transplant awakens and renews life, just as it does for a butterfly that emerges from a pupal stage of rest or dormancy. Unlike a butterfly, who emerges from its pupa and pretty quickly unfolds and exercises its wings to fly, it takes a long time post transplant to feel the full vibrancy of life again ... but, it does come. Now, I understand that Desirae's gift of a new kidney and the result of renewed life is so much like getting wings. The possibilities are mine to freely choose. Most of all, enjoying and sharing life and all its wonders goes on.
The day we drove home from the hospital, it was snowing again. All around us, the wintry world in Maryland more closely resembled what I think Nome, Alaska would look like. Snow drifts piled high on either side of the road and entire areas were engulfed in white. In my 50+ years, I had never witnessed such a winter. By the time we reached the base of our steep driveway, it was a blizzard. There was no way we could make it up to the top in our car...and the only alternative was to trek up the windy hill to the cabin by foot.
First, my husband and Steve helped Desirae up the drive. With Kevin on one side and Steve on the other, I watched as they slowly and steadily supported my daughter and helped her up the hill. The snow was coming down so hard and they were soon out of my range of view. As I sat behind in the car, I wondered just how I was going to get up that drive. My legs were still so weak that I was walking with the support of a cane, and my surgical site was no where near healed. I still had the drainage sac attached to my abdomen as well. I could barely maneuver on a flat, level stretch and now I would need to go straight up our snow covered driveway.
More quickly than I'd imagined they'd be, Kevin and Steve were back to escort me. They'd managed to get Desirae safely up and now it was my turn. So, what would be one of the longest most difficult hikes of my life began. The patience Kevin and Steve exhibited was remarkable, as my pace was as slow as it could be and still be moving. Each step I took felt grueling...but I was determined. I thought to myself, if I could successfully get up that driveway in my condition, I could do just about anything. Step by slippery step, we climbed. About midway up, when our cabin home was just beginning to come into view, I couldn't help but burst out laughing at the absurdity of this situation. If the medical staff at Hopkins had known about this, I wouldn't have been allowed to go home. But, here we were in the middle of the driveway in a blizzard. Our climb continued. If I'd felt triumphant on the "victory lap" when wheeled down the hospital corridors toward the door to exit for home, then I felt like a super star when we made it to the top of the drive and we were all safely settled in the cabin. This upward ascent through the snow was a fitting conclusion to the hospital experience, and it was also a fitting beginning to post transplant life.
Within a few days, Desirae and Steve returned to MA. Desirae made a tremendous recovery and was good to go and continue on with her life. Recovery came a lot slower for me. It would take several months for the surgical site to fully heal. My life was now one of taking anti-rejection medications and dealing with their side effects and frequent blood draws and medical appointments. My focus was on regaining physical strength and maintaining emotional balance.
If I have any advice to give about a kidney transplant, it would be to carefully choose your nephrologist, your kidney specialist who will be your continuing care physician after your transplant. I can not express how critical the relationship you share with this physician will be, not only to your recovery process, but to your life long maintenance of good health post transplant. My doctor is a woman about 12 years my junior. Not only is she a brilliant physician, she is also a person for whom I have utmost confidence and trust. She is personable and caring, and I can speak freely with her about all of my medical concerns. She is also willing to work with me, and, when it makes sense to do so, make exceptions to medical protocol and try different approaches ... very important since all of us have unique biochemistries and will not always adhere 100% to a general, one-size fits all standard. I believe the quality of communication you have with your nephrologist is directly proportional to how well you can achieve whatever level of optimal health is possible, given your own individual condition post transplant.
Patience with oneself and a changed way of life is critical. It takes a long, long time to feel anything close to what "normal" may mean for you with all the drugs you have to take to maintain the health of your new kidney. In my case, the most prolonged difficult side effect from anti-rejection medications is insomnia. I have not been able to regain a normal sleep pattern post transplant ... and good sleep is so critical to feeling good. Always a morning person in the past, I now have adjusted to sleeping when I can, which often means going to bed late and sleeping late, not an optimal adjustment, but fortunately a workable one for me. Urinary tract infections became the bane of my existence post transplant, and especially for women transplant recipients, this can be common. Weight gain and hair loss are also side effects many people, including myself, bear from medication side effects. They are inconveniences and discomforts, but a small price to pay for the gift of continued life. I also came down with an acute case of Lyme's Disease the year after my transplant, for which I was briefly hospitalized. If this disease had gone undiagnosed and left untreated, it could have proven fatal. Ultimately the disease could have attacked major organs, and with the compromised immune system a transplant patient lives with, irreparable damage likely would have been the result. Extreme attention and diligence to health become qualities one must acquire quickly post transplant if they are not already in place. You have to pay attention to your body and what it's telling you. Plus, you have to become obsessive with hand washing. It's one of the most important things one can do to reduce the effects of the transmission of germs which are everywhere. Living with a compromised immune system makes one much more vulnerable to germs and getting colds and the flu. Colds and flus can be worse and last longer or lead to further complications in those who have lowered abilities to fight off infection. So, you need to be cognisant and careful ... much more so than ever before. With time, even those things that were most difficult post transplant become much more manageable.
As I mentioned in my last transplant post, I was told, just before going to the hospital, that receiving a transplant would be like transforming into a butterfly. I also said I didn't fully comprehend this beautiful analogy at the time. Now, I think I do. The long stretch of ill health prior to a transplant is like a dormancy or hibernation period. Everything slows down for you and you are in a holding or waiting period. Your transplant awakens and renews life, just as it does for a butterfly that emerges from a pupal stage of rest or dormancy. Unlike a butterfly, who emerges from its pupa and pretty quickly unfolds and exercises its wings to fly, it takes a long time post transplant to feel the full vibrancy of life again ... but, it does come. Now, I understand that Desirae's gift of a new kidney and the result of renewed life is so much like getting wings. The possibilities are mine to freely choose. Most of all, enjoying and sharing life and all its wonders goes on.
Sunday, April 7, 2013
Intermission
Taking a break from the Transplant Experience series to post some springtime photos from our local Catoctin Zoo ~ a busy place this warm, sunny weekend!
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| A young giraffe gazes over the crowd |
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| A peacock shows off his glittery finery to some very disinterested ladies |
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| A sweet baby goat wakes up from a nap |
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| A showy Maccaw perched in front of budding tree |
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| Bright daffodils decorate the zoo grounds |
Saturday, April 6, 2013
The Transplant Experience ~ Part II ~ The Surgery & Hospital Experience
Today is a fitting day to continue my transplant story. It's the anniversary of my father's birthday. He passed away in 2007, at the age of 84. My dad's chosen career path led him to become a pathologist, a medical doctor who studies diseases. His specialty was cancer research. He was a brilliant man and a pioneer in his field who helped further advances in the understanding and treatment of this devastating disease. Ironically, when he was in his early 30's, Dad developed a life threatening form of cancer. He was treated at Johns Hopkins Hospital (JHH), where I was to receive my transplant. I was his 5th and last child, born after his cancer was eradicated. I never wavered from choosing Johns Hopkins as the hospital where I would have my procedure. Medical practitioners are not miracle workers, but I firmly believed in the competency and excellence of the Johns Hopkins team. It was also inspiring to me to know we had this very hospital to thank for saving my father's life a few decades ago. Thanks to the heroic medical efforts of Johns Hopkins, twice, I am alive and sitting here today sharing my experiences!
So...a few days before the scheduled surgery, my daughter and her boyfriend Steve arrived from their home in MA. It was fortunate they had a clear day for flying. The entire eastern portion of the country was experiencing extreme winter weather conditions and heavy snowfall in February 2010. The day before the transplant was to take place, we were hit with a massive snow storm. Kevin and Steve worked tirelessly to clear our steep, windy drive so we would be able to begin our trip to the hospital the following day. That night, we spent a quiet evening together simply enjoying each others company. It was hard to sleep, but we all did.
Early in the morning the next day, I received a call from a nurse at JHH making sure we could make it out to the hospital. I was told the medical staff was ready to go there and awaiting our arrival. In addition to receiving my confirmation that we would make every effort to be there on time for pre-op procedures, the nurse I was speaking with told me that having a transplant would be like transforming into a butterfly. It was a beautiful image to leave me with, but one I wouldn't quite grasp the meaning of until much later. The four of us packed our bags and were off, traveling along the snowy roads on route to Baltimore. Especially once we got to the city, we could barely squeeze through since the drifts were so high and the side roads in many areas were only partially cleared. It made for quite a nail biting journey, but Kevin got us there safely and we actually arrived prior to the appointed time. Our first hurdle was cleared. Although nervous in anticipation of what was to come, we were ready for the next step.
Almost right after we arrived, my daughter Desirae and I were called back to prepare for surgery. We were put in a curtained room on hospital beds that were side by side, a comfort for both of us to be right next to each other. Since Desirae would be taken to surgery first for the kidney she was donating to be removed laproscopically, her surgeon and anaesthesiologist came to her bedside to speak with her about what to expect first. Both were young men and I was so pleased with the ways they gently prepared her for her part of the transplant process. Both of them were also very humorous which helped put her at ease. I felt reassured that my daughter was in good hands. After they finished, a technician came in and both Desirae and I were fit with ports for IVs. The technician was a very funny woman who drew cartoons on the medical tape holding our ports in place. She drew a picture of Stewie from the cartoon Family Guy on my tape...which I saved afterwards and keep in a memory book :) Kevin and Steve were invited back to be with us and it wasn't long before it was time for Desirae's role to begin. With a kiss and a prayer, Desirae was wheeled back to surgery. My medical team arrived shortly after, although I didn't see my surgeon until right before the transplant procedure. My wait to go back was long. It gave Kevin and I the chance to be together, which did much to help calm my nerves.
Finally, the time came. Kevin gave me a kiss and I was whisked off to surgery. I did not expect the amount of people that was there in the operating room. JHH is a teaching hospital. In addition to the surgical team, there was also a group of medical students who were going to observe the transplant. I felt like I had an entire cheering squad with me as I went into surgery! My surgeon warmly greeted me and beyond that I have no memory of anything until I awakened in ICU about 5 hours later with a nurse by my side. Kevin came in very shortly afterwards. My first concern was for Desirae. Kevin assured me she was doing fine. The surgical site pain was pretty bad, but at that stage, I was provided a morphine pump and instructed to use it whenever I felt the need. I don't know how long I was actually in the ICU or what time of day it was when I was moved to the hospital room that would be "home" for the next week.
The most grueling part of my hospital experience came during the days following surgery. Very high levels of anti rejection drugs are intravenously "pumped" into your system day and night. At these high levels the drugs create a diabetic condition and regular injections of insulin are required. It wasn't long before my upper arms were black and blue from these injections. Blood draws are done several times throughout the course of each day and night, to continually monitor kidney function. Not only are you hooked up to IVs in both the arm and neck, but also a catheter and a sac attached to your abdomen helps draw fluids away from your surgical site. The sac needs to be drained by medical technicians throughout the day. It's there to help reduce the chance of infection. I don't think I have ever been more physically uncomfortable in my entire life! It was overwhelming at times. Post surgery, you also begin an oral drug regimen. Most of the multitude of drugs taken will need to be continued for life, and the side effects of some can be incredibly unpleasant. The morphine pump from the ICU was replaced by a codeine pain medication. I couldn't tolerate this drug, so, shortly after my surgery, I was relying solely on extra strength tylenol to deal with what was initially intense pain.
Beyond Kevin's ever diligent love and attention, the saving grace for me was the snow. The blizzard of 2010 continued for the first couple of days I was in my hospital room. I had a big window by my bed and a lovely view of the JHH cupola and twinkling city lights. Despite the pain and discomfort, the sight of the continual, softly falling snow outside my window had such a calming effect. My nurses and medical technicians were phenomenal. They were my angels ... so comforting, so helpful, and so encouraging. Within a couple days, Desirae was already strong enough to come and visit me and could walk from her room to mine. Seeing her doing so well and knowing that she had given me the gift of continued life by donating one of her own kidneys brought indescribable feelings of gratitude and joy. Talk about being proud of your kid :)
Early each morning, doctors, accompanied by their interns made rounds. Each and every time I was greeted by the same group of smiling faces. The student interns remained quiet while the doctor checked in with me. After this check in, the group would stand outside my hospital room conferring about my condition. I could hear every word and it almost felt like I was eaves dropping. Their daily morning visits actually were exciting because I learned something new or was affirmed of something each time.
Aside from hospital personnel who came and went from my room, my nights were spent alone. Kevin had rented a room in a house within walking distance from the hospital so he could get a good night's sleep before spending most of the daytime hours at my bedside. Spouses are allowed to stay overnight, but I'm so pleased Kevin afforded himself the comfort of a comfortable bed and some time for himself. I missed him when he was away, but I also needed some time to adjust to my new condition. Sleep did not come easily and I got very little of it during my hospital stay. My best friend so thoughtfully sent a care package to me which included a favorite book from our childhood called My Side of the Mountain, which I read cover to cover during the nighttime hours. It was a great choice to give me, as it detailed the adventures of a young boy alone in the wilderness, enjoying his exploits and adventures and meeting all sorts of challenges. I was also in new, unexplored territory in my life and had to find ways to adjust and continue on with my own personal survival story.
Also during the quiet stillness of night, I had what I can only describe as incredible spiritual experiences. One evening in particular, the world outside my window seemed to be totally aglow in the most brilliant, sparkling lights. A sense of awe filled my entire being and I felt connected to something inexpressibly bigger than myself. It was simply beautiful and I felt so grateful to be alive. For about two weeks post transplant, I heard the most angelic, ethereal music, emmanating from everywhere and nowhere at the same time. This sweet, comforting music would fade in and out of my consciousness throughout the day and night. At times, I also literally could feel my new kidney working within my body. It felt like it was purring. I asked the doctor about that when I saw him in rounds, and he said that what I described was entirely possible. Desirae's kidney had my system back in shape from the very first day...truly, utterly amazing!
The days of the week spent in the hospital went by incredibly slowly, but they also seemed to be over in no time. After the catheter was removed, I was able to start getting up and slowly start walking the hallways, toting my iv pole along with me as I went. Being mobile again was initially very uncomfortable, but also very necessary to regain strength as soon as possible. The day of my discharge was one of mixed emotion. I definitely wanted to go home, but I was also a bit worried about being able to do all I needed to do on my own away from the ever helpful, knowledgeable staff of the hospital. I felt like I imagine a baby bird feels who's finally gained enough strength in her wings to fly the nest but isn't quite sure she can do it yet ... but ... that day had come to spread my wings and fly. Along with an arsenal of medications, instructions for aftercare, and a schedule of follow-up appointments, and, after saying my heartfelt thank-yous and goodbyes to my hospital caretakers, I was loaded into a wheelchair and taken for a long spin through the hospital corridors to the front door where Kevin, Desirae, and Steve awaited my arrival. This ride down the hallways felt like a victory lap. The wind through my hair and against my face as I was pushed down the halls felt amazing. I couldn't help but smile out of sheer and utter happiness and triumph. Everyone we passed along the way smiled back. Ahead of me lay trials yet to be tested and endured, but, today, along with my courageous, most generous daughter and her boyfriend and my hero of a husband, plus a new lease on life, I was going home.
So...a few days before the scheduled surgery, my daughter and her boyfriend Steve arrived from their home in MA. It was fortunate they had a clear day for flying. The entire eastern portion of the country was experiencing extreme winter weather conditions and heavy snowfall in February 2010. The day before the transplant was to take place, we were hit with a massive snow storm. Kevin and Steve worked tirelessly to clear our steep, windy drive so we would be able to begin our trip to the hospital the following day. That night, we spent a quiet evening together simply enjoying each others company. It was hard to sleep, but we all did.
Early in the morning the next day, I received a call from a nurse at JHH making sure we could make it out to the hospital. I was told the medical staff was ready to go there and awaiting our arrival. In addition to receiving my confirmation that we would make every effort to be there on time for pre-op procedures, the nurse I was speaking with told me that having a transplant would be like transforming into a butterfly. It was a beautiful image to leave me with, but one I wouldn't quite grasp the meaning of until much later. The four of us packed our bags and were off, traveling along the snowy roads on route to Baltimore. Especially once we got to the city, we could barely squeeze through since the drifts were so high and the side roads in many areas were only partially cleared. It made for quite a nail biting journey, but Kevin got us there safely and we actually arrived prior to the appointed time. Our first hurdle was cleared. Although nervous in anticipation of what was to come, we were ready for the next step.
Almost right after we arrived, my daughter Desirae and I were called back to prepare for surgery. We were put in a curtained room on hospital beds that were side by side, a comfort for both of us to be right next to each other. Since Desirae would be taken to surgery first for the kidney she was donating to be removed laproscopically, her surgeon and anaesthesiologist came to her bedside to speak with her about what to expect first. Both were young men and I was so pleased with the ways they gently prepared her for her part of the transplant process. Both of them were also very humorous which helped put her at ease. I felt reassured that my daughter was in good hands. After they finished, a technician came in and both Desirae and I were fit with ports for IVs. The technician was a very funny woman who drew cartoons on the medical tape holding our ports in place. She drew a picture of Stewie from the cartoon Family Guy on my tape...which I saved afterwards and keep in a memory book :) Kevin and Steve were invited back to be with us and it wasn't long before it was time for Desirae's role to begin. With a kiss and a prayer, Desirae was wheeled back to surgery. My medical team arrived shortly after, although I didn't see my surgeon until right before the transplant procedure. My wait to go back was long. It gave Kevin and I the chance to be together, which did much to help calm my nerves.
Finally, the time came. Kevin gave me a kiss and I was whisked off to surgery. I did not expect the amount of people that was there in the operating room. JHH is a teaching hospital. In addition to the surgical team, there was also a group of medical students who were going to observe the transplant. I felt like I had an entire cheering squad with me as I went into surgery! My surgeon warmly greeted me and beyond that I have no memory of anything until I awakened in ICU about 5 hours later with a nurse by my side. Kevin came in very shortly afterwards. My first concern was for Desirae. Kevin assured me she was doing fine. The surgical site pain was pretty bad, but at that stage, I was provided a morphine pump and instructed to use it whenever I felt the need. I don't know how long I was actually in the ICU or what time of day it was when I was moved to the hospital room that would be "home" for the next week.
The most grueling part of my hospital experience came during the days following surgery. Very high levels of anti rejection drugs are intravenously "pumped" into your system day and night. At these high levels the drugs create a diabetic condition and regular injections of insulin are required. It wasn't long before my upper arms were black and blue from these injections. Blood draws are done several times throughout the course of each day and night, to continually monitor kidney function. Not only are you hooked up to IVs in both the arm and neck, but also a catheter and a sac attached to your abdomen helps draw fluids away from your surgical site. The sac needs to be drained by medical technicians throughout the day. It's there to help reduce the chance of infection. I don't think I have ever been more physically uncomfortable in my entire life! It was overwhelming at times. Post surgery, you also begin an oral drug regimen. Most of the multitude of drugs taken will need to be continued for life, and the side effects of some can be incredibly unpleasant. The morphine pump from the ICU was replaced by a codeine pain medication. I couldn't tolerate this drug, so, shortly after my surgery, I was relying solely on extra strength tylenol to deal with what was initially intense pain.
Beyond Kevin's ever diligent love and attention, the saving grace for me was the snow. The blizzard of 2010 continued for the first couple of days I was in my hospital room. I had a big window by my bed and a lovely view of the JHH cupola and twinkling city lights. Despite the pain and discomfort, the sight of the continual, softly falling snow outside my window had such a calming effect. My nurses and medical technicians were phenomenal. They were my angels ... so comforting, so helpful, and so encouraging. Within a couple days, Desirae was already strong enough to come and visit me and could walk from her room to mine. Seeing her doing so well and knowing that she had given me the gift of continued life by donating one of her own kidneys brought indescribable feelings of gratitude and joy. Talk about being proud of your kid :)
Early each morning, doctors, accompanied by their interns made rounds. Each and every time I was greeted by the same group of smiling faces. The student interns remained quiet while the doctor checked in with me. After this check in, the group would stand outside my hospital room conferring about my condition. I could hear every word and it almost felt like I was eaves dropping. Their daily morning visits actually were exciting because I learned something new or was affirmed of something each time.
Aside from hospital personnel who came and went from my room, my nights were spent alone. Kevin had rented a room in a house within walking distance from the hospital so he could get a good night's sleep before spending most of the daytime hours at my bedside. Spouses are allowed to stay overnight, but I'm so pleased Kevin afforded himself the comfort of a comfortable bed and some time for himself. I missed him when he was away, but I also needed some time to adjust to my new condition. Sleep did not come easily and I got very little of it during my hospital stay. My best friend so thoughtfully sent a care package to me which included a favorite book from our childhood called My Side of the Mountain, which I read cover to cover during the nighttime hours. It was a great choice to give me, as it detailed the adventures of a young boy alone in the wilderness, enjoying his exploits and adventures and meeting all sorts of challenges. I was also in new, unexplored territory in my life and had to find ways to adjust and continue on with my own personal survival story.
Also during the quiet stillness of night, I had what I can only describe as incredible spiritual experiences. One evening in particular, the world outside my window seemed to be totally aglow in the most brilliant, sparkling lights. A sense of awe filled my entire being and I felt connected to something inexpressibly bigger than myself. It was simply beautiful and I felt so grateful to be alive. For about two weeks post transplant, I heard the most angelic, ethereal music, emmanating from everywhere and nowhere at the same time. This sweet, comforting music would fade in and out of my consciousness throughout the day and night. At times, I also literally could feel my new kidney working within my body. It felt like it was purring. I asked the doctor about that when I saw him in rounds, and he said that what I described was entirely possible. Desirae's kidney had my system back in shape from the very first day...truly, utterly amazing!
The days of the week spent in the hospital went by incredibly slowly, but they also seemed to be over in no time. After the catheter was removed, I was able to start getting up and slowly start walking the hallways, toting my iv pole along with me as I went. Being mobile again was initially very uncomfortable, but also very necessary to regain strength as soon as possible. The day of my discharge was one of mixed emotion. I definitely wanted to go home, but I was also a bit worried about being able to do all I needed to do on my own away from the ever helpful, knowledgeable staff of the hospital. I felt like I imagine a baby bird feels who's finally gained enough strength in her wings to fly the nest but isn't quite sure she can do it yet ... but ... that day had come to spread my wings and fly. Along with an arsenal of medications, instructions for aftercare, and a schedule of follow-up appointments, and, after saying my heartfelt thank-yous and goodbyes to my hospital caretakers, I was loaded into a wheelchair and taken for a long spin through the hospital corridors to the front door where Kevin, Desirae, and Steve awaited my arrival. This ride down the hallways felt like a victory lap. The wind through my hair and against my face as I was pushed down the halls felt amazing. I couldn't help but smile out of sheer and utter happiness and triumph. Everyone we passed along the way smiled back. Ahead of me lay trials yet to be tested and endured, but, today, along with my courageous, most generous daughter and her boyfriend and my hero of a husband, plus a new lease on life, I was going home.
Friday, April 5, 2013
The Transplant Experience ~ Part I ~ The Year Prior to Surgery
At the suggestion of my daughter, who is also my kidney donor, I began this blog in 2009 to serve as a creative outlet for my feelings the year prior to my transplant surgery. It's been quite a while since I've focused at any length in my blog on my transplant experience. By sharing my personal story, I hope to shed some light on what is a daunting procedure, before, during, and afterwards. In my next posts, I'll attempt to cover the three stages of the transplant experience simply but in greater detail than in earlier posts. For those of you who may also be facing a transplant, my hope is that you will find some comfort and clarity for your own journey by reading about mine.
THE YEAR PRIOR TO SURGERY
To be in line for a transplant, it has been medically determined that your kidneys have failed in their abilities to cleanse your system and operate as they normally would. The year prior to receiving the donor kidney, I was nauseous almost all the time and had next to no energy. My blood pressure was high and I was taking several medications to control it. The failure of my kidneys to function also led to elevated levels of uric acid and awful bouts of gout in my joints. My feet were mostly affected by the gout and the condition was sometimes so painful I couldn't walk. When one major organ stops running efficiently, all the other organs are affected. In essence, as the kidneys fail, your entire body system becomes increasingly out of balance, and, in it's weakened state, you become vulnerable to greater health issues.
Since it had been determined earlier that year that my daughter's kidney was a close match, meaning our antibodies and antigens were nearly identical and our blood type was the same, I very fortunately did not have to wait for a donor kidney and I would not have to undergo dialysis since the transplant surgery could be scheduled for the near future. A whole gamut of medical tests needed to be run to assure that my body could withstand the rigors of the lengthy surgical procedure...so much of the year prior to the transplant was spent going to doctor's appointment after doctor's appointment and getting lots and lots of medical tests. These tests included a sonogram of the diseased kidneys, a colonoscopy, a stress test and sonogram of the heart, chest x-ray and dental and gynecological exams. Lab tests to monitor kidney function were done on a regular basis to assure that my health could withstand the wait for surgery without dialysis as an intermediary measure. After all of the tests were completed and I was formally accepted as a candidate for transplant, my husband and I attended an all day round of interviews with the transplant team at Johns Hopkins Hospital set up by my nurse coordinator there. During this time, I met my surgeon who would perform the transplant, the nephrologist who would be my post transplant specialist, a nutrition specialist, and a social worker. My daughter also went through medical testing and an interview process to serve as my donor.
The period just prior to the transplant was a difficult one both physically and emotionally. There were times I felt so sick and so weak that I thought I might not make it. It was a scary time, but one when it was essential to maintain as positive an outlook as possible. I found that doing rather mindless activities like jigsaw puzzles helped keep the focus off of fear and anxiety, especially at night since this was a period when it was very difficult to sleep. Getting outdoors and immersing myself in the beauty of nature was also of great benefit. Reading up all you can about the transplant procedure to familiarize yourself with what to expect, beyond instruction and advice received from your transplant team, is also helpful. During this time, I did a lot of internet searches and visited discussion boards contributed to by transplant recipients. Journaling and/or blogging was also a big help!
Several months before the surgery actually took place, my local nephrologist ordered a series of iron infusions to help strengthen my depleted system and better prepare my body for surgery. I received these infusions at a cancer treatment center where cancer patients were undergoing chemotherapy. I was deeply moved and inspired by the incredible courage of those who I sat amongst as we received our intravenous drips. It took several hours each of the three times I went to the center to receive the supplemental iron.
A surgery date was finally set. The days before the transplant, though numbered, felt endless.
THE YEAR PRIOR TO SURGERY
To be in line for a transplant, it has been medically determined that your kidneys have failed in their abilities to cleanse your system and operate as they normally would. The year prior to receiving the donor kidney, I was nauseous almost all the time and had next to no energy. My blood pressure was high and I was taking several medications to control it. The failure of my kidneys to function also led to elevated levels of uric acid and awful bouts of gout in my joints. My feet were mostly affected by the gout and the condition was sometimes so painful I couldn't walk. When one major organ stops running efficiently, all the other organs are affected. In essence, as the kidneys fail, your entire body system becomes increasingly out of balance, and, in it's weakened state, you become vulnerable to greater health issues.
Since it had been determined earlier that year that my daughter's kidney was a close match, meaning our antibodies and antigens were nearly identical and our blood type was the same, I very fortunately did not have to wait for a donor kidney and I would not have to undergo dialysis since the transplant surgery could be scheduled for the near future. A whole gamut of medical tests needed to be run to assure that my body could withstand the rigors of the lengthy surgical procedure...so much of the year prior to the transplant was spent going to doctor's appointment after doctor's appointment and getting lots and lots of medical tests. These tests included a sonogram of the diseased kidneys, a colonoscopy, a stress test and sonogram of the heart, chest x-ray and dental and gynecological exams. Lab tests to monitor kidney function were done on a regular basis to assure that my health could withstand the wait for surgery without dialysis as an intermediary measure. After all of the tests were completed and I was formally accepted as a candidate for transplant, my husband and I attended an all day round of interviews with the transplant team at Johns Hopkins Hospital set up by my nurse coordinator there. During this time, I met my surgeon who would perform the transplant, the nephrologist who would be my post transplant specialist, a nutrition specialist, and a social worker. My daughter also went through medical testing and an interview process to serve as my donor.
The period just prior to the transplant was a difficult one both physically and emotionally. There were times I felt so sick and so weak that I thought I might not make it. It was a scary time, but one when it was essential to maintain as positive an outlook as possible. I found that doing rather mindless activities like jigsaw puzzles helped keep the focus off of fear and anxiety, especially at night since this was a period when it was very difficult to sleep. Getting outdoors and immersing myself in the beauty of nature was also of great benefit. Reading up all you can about the transplant procedure to familiarize yourself with what to expect, beyond instruction and advice received from your transplant team, is also helpful. During this time, I did a lot of internet searches and visited discussion boards contributed to by transplant recipients. Journaling and/or blogging was also a big help!
Several months before the surgery actually took place, my local nephrologist ordered a series of iron infusions to help strengthen my depleted system and better prepare my body for surgery. I received these infusions at a cancer treatment center where cancer patients were undergoing chemotherapy. I was deeply moved and inspired by the incredible courage of those who I sat amongst as we received our intravenous drips. It took several hours each of the three times I went to the center to receive the supplemental iron.
A surgery date was finally set. The days before the transplant, though numbered, felt endless.
Wednesday, April 3, 2013
Baltimore and Bastet
The city of Baltimore holds a lot of significance to my family. My daughter and husband are graduates of Johns Hopkins University. My father and I both had lifesaving measures performed by the exceptional medical staff at Johns Hopkins Hospital. My Dad's cancer was successfully treated at JHH in the early 1950s and I received my kidney transplant there in 2010. These days, we enjoy visiting Baltimore for the cultural aspects. There are many sights to see and museums to visit. One of our favorite stops is the Walter's Gallery. It houses a generous bequest of art and archaeological artifacts and is open to the public free of charge.
On our last visit to the Walter's gallery earlier this year, I purchased a small replica of a graceful cat statue made to represent Bastet and I learned a bit more about my purchase afterwards.
On our last visit to the Walter's gallery earlier this year, I purchased a small replica of a graceful cat statue made to represent Bastet and I learned a bit more about my purchase afterwards.
The domestic cat was revered in Ancient Egyptian civilization. The cat was regarded as an animal of awe and wonder. Families owning cats made certain their feline companions were well cared for and respected. Killing a cat in those times, even by accident, was punishable by death. Deceased cats were often mummified and buried in tombs with their owners.
Bastet, or Bast, was an Egyptian deity said to be the daughter of the highest deity Ra, the Sun God. This deity was represented in the form of a cat or a cat's head on a woman's body. Among the Walter's Gallery archaeological collections are stunning original statues from ancient times depicting Bastet. An entire hall in the gallery is dedicated to archaeological finds from early Egyptian society.
Bastet's primary role was as a protectress of women, children, and domestic cats. She was also the goddess of the sunrise, music and dance, family, fertility, and birth. She was a benevolent deity and a highly beloved goddess. Even today, there are those who continue to acknowledge and pay homage to Bastet and there are many, the world over, who deeply love their cat companions!
I'm so happy to post the shining eyed face of our beautiful cat Pacey, a photograph I snapped just yesterday. Several months ago, Pacey was near death due to severe stomach issues. The efforts of her incredible veterinarian, who was willing to work closely with us and try several approaches to get her back to good health, were successful and Pacey is not only still alive, but thriving.
Maybe Bastet sitting on our window ledge helped her out, too :)
Monday, April 1, 2013
Close-Ups
Spring hasn't quite sprung in our corner of the world, but a walk through the woods around our cabin yields subtle clues that it's soon to come.
I found these two salamanders at rest under a large piece of bark. They didn't move at all when exposed, and I carefully resettled the layer of bark on top of them so they could remain peacefully hidden and moist.
Close by the salamanders, I came across a very large hornet or wasp similarly situated under some rotting bark. He was brilliantly colored in bright gold shades and black and brick red. I recovered him, too, and let him be.
The moss and lichen intermingled in this rotting tree stump looked so lush and healthy. I've always loved the soft, velvety texture of fuzzy, emerald green mosses.
Our woods are predominated by tall chestnut oak trees. The furrowed, heavy bark of these trees is really neat. Unfortunately, these furrows provide nesting sites for gypsy moth eggs. The larvae were responsible for decimating a large number of the trees in our area a couple years back. The loss of chestnut oaks left gaps that new trees and shrubs are just starting to fill.
I keep tract daily of the progress of our garden perennials. The columbines are steadily unfurling their bright green, purple veined leaves. Today, crystal beads of water droplets glistened like jewels among the leaflets ~ so pretty!
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