The Big, Bad Ego
Well, it seems that the ego was running rampant here in my house for a while <sigh>.
Last night I received an email from a gal, Allison, whom I had mentioned dating Josh in my book, “Taming Josh’s Dragon”. What a wonderful, uplifting communication that was, with perfect timing! She recalled that we had spoken during Josh’s funeral (23 years ago) and I had said how special going to the Valentine’s dance with her was to him. She was his one and only date of an entire lifetime. Honestly, I don’t remember too much during the extremely stressful time surrounding his funeral, but I am very grateful that she recalls our conversation.
I’ve also received wonderful, glowing comments from classmates, friends and relatives, quite similar to the above, on Facebook, in person, and even in personal, handwritten cards and letters! How rewarding to hear that others appreciate our story and feel that it was well-written. After eight long years of working on this joyful/painful project, towards the end I no longer had any perspective on how I was doing.
A longtime friend a couple months ago thanked me and told me that our story gave her a picture from a very different viewpoint resulting in deeper understanding and respect for her own mom. Her mom had lost a baby boy before my friend was even born. The baby was ill, in the hospital and apparently suffered a medication error. He did not survive. I just can’t imagine how this traumatic experience must have been. How is it possible to bounce back from such a thing? It had negatively affected her mom for the rest of her life, but my friend better understood what her mom had experienced and lived with every single day for the rest of her life.
I’ve recently spoken to my niece who, God Bless her, has gradually turned her life around over the past several years. She has been in search of beliefs and faith that would support and allow her to grow mentally, emotionally and spiritually. She found just that, and stated that as she read “Taming Josh’s Dragon” she came to a sudden realization. This centered specifically on the part describing how, after my deep personal tragedy, I somehow needed to, and had to, reinvent myself. I needed a new focus in my life. It was another piece to her puzzle; this absolutely resonated with her current needs. I was so grateful for her comments and realized that this book could be helpful not only for transplant recipients or those with a terminally ill child, but also those who are struggling with any personal challenge.
Well, back to my wild and crazy ego experience. I guess I just have to be put in my place sometimes and not allow my pride and ego to take over. I need to see things from another perspective. Here’s what this is about:
Some people close to me who in my opinion, loved me as an integral part of my new family deserved to know about a certain substantial part of my life that took place before we even met. I believed they would want to know. Or more accurately, I wanted them to know about Josh, his life, our joys and challenges as well as our highs and lows. I knew they would appreciate our trials, our love, and have some sympathetic and perhaps enlightening comments and observations.
Living Donation
Giving the gift of a kidney, a lobe of a lung, or a portion of the liver, pancreas or intestine, living donors offer patients an alternative to waiting on the national transplant list for an organ from a deceased donor. The number of living organ donors is more than 6,000 per year, and one in four of these donors are not biologically related to the recipient.
What is Living Donation?
The majority of organ donations occur after a donor has died. However, living donation is possible with certain organs and tissues, enabling doctors to save more people in desperate need of a transplant. Living kidney and liver donors can range from family members and friends to anonymous individuals if they meet the requirements to donate.
Advantages of Living Donation
When doctors are able to transplant an organ from one family member to another, the genetic match often decreases the risk of rejection.
Because it is a living donation, the procedure can be scheduled at a convenient time for both the donor and recipient.
Kidney transplant recipients often see an immediate return of normal function.
Types of Organs Supplied by Living Donors
Kidney – Individuals can donate one of their two kidneys to a recipient, making this the most common form of living organ donation. Although donors will see a decrease in kidney function after donation, their remaining kidney will function properly in working to remove waste from the body.
Liver (lobe) – People can donate one of two lobes of their liver. The liver cells in the remaining lobes of the liver regenerate after the donation until the organ has regrown to almost its original size. This occurs in both the donor and recipient
Lung (lobe) – Lung lobes do not regenerate, but individuals can donate a lobe of one lung. Living lung donation occurs when two adults give the right and left lower lobes (from each respectively) to a recipient. The donor’s lungs must be the right volume and size to be a correct match.
Matching Donors and Transplant Patients
Paired donation or paired exchange involves two pairs of potential living kidney donors and transplant candidates who are not compatible. The two candidates “trade” donors so that each candidate receives a kidney from a compatible donor.
Kidney donor waiting list exchange occurs when a living donor who is incompatible with the intended transplant candidate donates to an anonymous candidate on the waitlist so the intended candidate can be given higher priority on the waitlist.
Blood type incompatible donation occurs when a transplant candidate receives a kidney from a living donor with an incompatible blood type. To decrease the risk of rejection of the donated organ, candidates receive specialized medical treatment before and after the transplant.
Positive cross-match donation involves a living donor and a transplant candidate who are incompatible because antibodies (a protein substance) in the candidate will immediately react against the donor’s cells, causing loss of the transplant. Specialized medical treatment is provided to the candidate to prevent rejection.
Certain living donation options may not be available at all transplant centers. Contact transplant centers directly for information on specific programs.
History of Living Donation
The first successful living donation took place when, in 1945, Dr. Joseph Murray transplanted a healthy kidney from Ronald Herrick into his twin brother, Richard. He had been suffering from chronic kidney failure, but lived a healthy life after the transplant until his death from causes not related to the transplant. Ronald, his living donor brother, lived for 56 years after the surgery until his death in 2010.
Altruistic Kidney Donation
Living kidney donors who are not related to or known by the recipient are known as non-directed donors. This type of selfless donation can also be referred to as altruistic or anonymous non-directed kidney donation.
In this case, the transplant center determines how the donor’s kidney will be used. Non-directed donors may help multiple transplants occur by donating to a paired donation program where their altruistic donation may be useful to a “chain” of donations. It is important to note that living donors are never paid – it is illegal to donate an organ for profit under the National Organ Transplant Act of 1984, and transplant centers are prohibited from accepting living donors who have been pressured to donate.
When the organ recipient knows the potential donor, the recipient’s insurance pays for clinical evaluations to ensure they are in the best possible state of health to move forward with the donation. If you are an altruistic donor without a known recipient, your insurance provider will most likely refuse to pay for your evaluation tests. Luckily, most local transplant centers cover these expenses. Please visit CORE’s website to view links to all kidney transplant centers within the CORE service area.
To Become a Living Donor
The health and safety of a living donor is the most important priority in any transplant procedure involving a living donor. Emotionally and physically, living donors must be in top condition.
Living Donors Must…
Donate voluntarily. At any time during the donation process a living donor may change his or her mind. This decision will be kept confidential.
Be in good health overall with normal organ function and anatomy.
Be physically fit. In most cases, donors should not have high blood pressure, diabetes, cancer, kidney disease or heart disease.
Not be paid. It is illegal to pay or be paid for a donation under the National Organ Transplant Act of 1984 and state law.
18-60 years old (in most cases).
Complete clinical evaluations beyond the initial donation criteria to confirm compatibility with a recipient. These include physical and psychological evaluations.
Give informed consent. Transplant centers must ensure that the prospective donor has been informed regarding the aspects of living donation and possible outcomes.
Types of Living Donors Directed Donation
Related Living Directed Donation: Includes healthy blood relatives of candidates:
Brothers and sisters
Parents
Children over 18 years of age
Other blood relatives (aunts, uncles, cousins, half-brothers and -sisters, nieces and nephews)
Non-related Directed Donation: These are healthy, unrelated living donors who are emotionally close to transplant candidates, including:
Spouses
Relatives through marriage
Close friends
Co-workers, neighbors or other acquaintances
Non-directed/Altruistic Donation: These living donors are not related and unknown to the recipient. Altruistic donors make their donation for purely selfless reasons and are sometimes called anonymous donors.
Paired Exchange Donation: This system enables a living donor to initiate a chain of transplants to the benefit of more than one person in need. Non-directed kidney donors who wish to donate to anyone waiting for a kidney can be included in paired exchange donation programs.
The Decision to Donate
The decision to donate is very personal, and potential donors should make their decision with all the available information to make an informed choice. Donation must be a voluntary decision that is free from pressure of any kind.
A living donor may change his or her mind at any point in the donation process. This decision and any reasons will be kept strictly confidential. Potential donors should consider the possible health effects of donation as well as the life-saving potential for the transplant recipient.
Usually, a donor’s life returns to normal within four to six weeks after the surgery, but because of all the effects on donors, particularly unknown long-term effects, the federal government does not actively encourage any individual to make a living donation. They do recognize the wonderful gift provided to transplant recipients, and through the Division of Transplantation, Health Resources Services Administration and U.S. Department of Health and Human Services, the federal government works to support living donors.
Medical expenses for living donation are generally covered by the recipient’s insurance plan. Transplant centers are required to charge recipients an “acquisition fee” upon receiving a transplant, which covers the donor’s pre-donation clinical evaluations, the transplant procedure and postoperative care, also referred to as “donor protocol.” Other costs outside of this protocol are not covered. More extensive and detailed information about the financial aspects of the procedure can be provided by the transplant center.
Who Makes a Good Donor?
Ultimately, a transplant center has the definitive say on whether or not a person can become a living donor. A person who wishes to make a living donation is carefully screened for the best possible physical and psychological outcome for both the donor and the recipient.
Resources for Living Donation
Contact the potential recipient’s transplant center to receive more information or be tested as a potential living donor for someone you know. Ask to speak with the transplant coordinator who will be able to provide you with additional information and get you started in the donation process.
Visit websites below for additional information:
Kidney Paired Donation Resources:
National Living Donor Assistance Center (NLDAC)
Transplant Living
Alliance for Paired Donation (APD)
National Kidney Registry (NKR)
United Network for Organ Sharing
U.S. Federal Health Resources and Services Administration
American Society for Transplantation
National Kidney Foundation
Living Kidney Donor Network (LKDN)
Playing by the Rules?
I’ve heard friends and acquaintances express wonder and concern at how some individuals don’t “play be the rules” during these challenging times. Seeing some people in public wearing what I sarcastically call an “invisible mask” (failing to wear a mask at all), or wearing it around the neck, or below the nose is more than annoying, seems to me to be utterly disrespectful and displays downright indifference (and frankly, spits in the face of safety) regarding the many possible consequences.
So, do these cloth or paper masks give us a false sense of security? Not the point. Are there some who assure themselves that they won’t contract this virus or if they do, they’ll survive it with outside effects? Again, not the point.
What ever happened to treating each other with dignity and respect? I cannot imagine how I would feel if, through neglect or carelessness, I were the cause of someone catching this, or worse, not surviving it. Whether a loved one, friend, acquaintance or stranger; it makes no difference. We must care for and protect each other, rather than taking a cavalier attitude towards everything and everyone. Life is precious. Precious!
Memorial Day
A day for remembering. A day for cherishing. A day for gratitude for the memories, the love, the laughter and the tears. God Bless not only all those here with us but also those gone, missed and still loved, honoring and holding them forever in our hearts.
Further Reading (Books on Transplant, Grief, etc.)
I’ve done a lot of reading to help understand the meaning of my experiences with Josh. Some, in fact many, are about reincarnation, some about healing after the loss, much about the spirituality experience that I have grown to accept and celebrate. These have been the most helpful and emotionally supportive while attempting to move forward in life and gain an understanding of why things happen as they do.
I’m not going to say any of it was easy. My life throughout the past 20-some years has been an ever-evolving process of mind and spirit. Challenging, but well worth the effort, as I have learned to accept my personal history and be grateful for all that has unfolded. Yes, all, good, bad, and everything in between because I believe there are lessons in our experiences. The challenge is just to recognize them.
Ode to Josh
“The “Ode to Josh” blossomed into existence in March 1998. Apparently therapy of my own making, I have written poetry and letters to Josh and my favorite, the “Ode”, may be seen in a later chapter. One dark night I could hear rhyming verses in my head which literally woke me up out of a sound sleep. I felt compelled to go to the computer and get it down on “paper”. I feared that I would forget the words and consequently lose a priceless gift, one I now believe had sent to me by Spirit. Why else would this message come to me in my sleep? I had never written poetry before, but for the next months, my aching soul spilled out onto paper into a lengthy, cathartic poem. I worked on it for almost six months. The ode was the beginning of my return to any semblance of normality.”
Here it is in its entirety:
It’s been almost a year, I’ve been thinking of you,
It hurts as much now as when my loss was new.
I remember that day, the terror, the pain,
The weight on my chest, in that ER again.
When they felt for a pulse but could not find one,
They made me leave that room; then I knew I was done.
My heart, how it pounded; I screamed in my head,
“I can’t lose this boy, who’ll care for me?” I said.
“IT DOESN’T LOOK GOOD”… chilling words that will forever
Sound in my mind, allow my poor heart to never
Forget the worst thing ever said to a mom or a dad;
I can’t imagine anything else ever being so sad.
“Sensei Rick” was there too, trying, despite his own grief
To console us, our loss, so enormously deep.
A loss, I’ve learned, from talking with so many
Is shared by all who knew you, even just barely.
I felt the wrench in my gut, the spin in my head,
The grip on my heart, and wished I were dead.
I knew for weeks after, this was only a dream,
Surely, I’d wake up soon; all was not what it seemed.
How do YOU spell F-R-E-E-D-O-M?
It seems pretty silly to be excited about playing golf, but at this point, it is fantastic freedom. Last week my partner (in two different golf leagues) and I wanted to play a practice rounds (practicing both golf and Social Distancing). The weather, however, was very uncooperative, being in the low 40’s (and probably 5 degrees colder way up on the hill course) and accumulating some snow overnight. We opted out for both days. For me, cold can be only so much fun when golfing. My most comfortable cold is about 66 degrees. So much for last week’s foray into freedom!
So, back to F-R-E-E-D-O-M. What we used to consider regular, everyday life now seems a rare gift. How will we interact in the future? Will we be distrustful, wondering who is carrying an illness that could possibly sicken or kill us? Will we ever again be comfortable to hug each other again? Will we experience freedom from worry, be as carefree and trusting as we once were a few short months ago?
I’ve just now realized that we have taken so much for granted. My husband and I used to do “Friday night Dinner & a Movie” – during non-golf season. Even back then we unknowingly practiced Social Distancing, as we went for the matinee: sometimes there were as many as six of us in the theater at 4:30 p.m. This would get us out of the theater and into our choice of a restaurant before most of the crowd arrived. We could then arrive back home before eight o’clock and fall asleep in front of the TV before nine. Hmm…are we getting old?
Well, the point is, what will we be doing in the future as we wait for the “Second Wave”? Have friends in, instead of going out? But only after we take their temperature out in the driveway? Sorry, a little sarcasm there. How are our freedoms being affected, at least for the wiser of us? Yes, I suspect our way of life will change and perhaps not so subtly or temporarily.
Freedom may just take on a slightly different meaning. Again, this will be a reinventing of ourselves and our environment. I’ll tell you what, I’m so glad I’m not 25. What a strange world these people are going to have to monitor for decades to come. Will it eventually settle into something do-able for everyone? And our parents thought it was bad back in the 50’s and 60’s? My goodness, what would they be thinking now?
Gratitude
Well, as we’re contemplating perhaps winding this isolation down (I have to admit that I’m just a touch hesitant about this), I’m thinking of the beginning of golf season and getting back outside in the – at long last – warmer weather. It reminds me of when Josh and I were learning to golf, back in the mid-nineties. We just whacked at the ball, trying to coax it forward, mere feet at a time. We had fun, laughed at each other a lot and cheered each other on when one of us had a good shot. In retrospect, it was wonderful just to have him outside being active and having fun.
Sometimes do you have to think hard just to find something to be grateful for? As I look back, how wonderful it was to have Josh feeling well, joking and finding the humor in life. His dad Jan and I took Josh to a local restaurant to enjoy someone else’s cooking (as that has always been a challenge for me). When we were done with our meal, Jan pulled out money from his wallet. Teasing, he told Josh, “If you can tell me which president is on a fifty-dollar bill, you can have it.” Josh promptly responded, “Grant”. At first, for a moment we were silently in awe, then we just roared because he was right! The money was his! I still wonder at how he knew that bit of trivia. Silly thing to be grateful for, huh? Nah, not at all. It truly is the little things that count and are supremely important.
This is a picture of Josh with his friend and classmate, Joey. They’re the same age, but such a great difference in size, but his friends didn’t see or care about that. I am so thankful that he had such wonderful group of friends and that he could fish, hunt, bowl and enjoy so many other fun activities with them. I would drop him off at a park in town so he could play touch football with friends and not have mom “hovering”. Not that I wasn’t tempted, but he needed time alone with the guys to be independent. I’m not sure how the football went. He probably wasn’t able to run as they did, but the important thing was that he was there with his buddies, involved, included, laughing and talking. God Bless all his loyal ‘buds’.
Corona Wonderings, written on April 5, 2020
As I sit here at my keyboard this beautiful sunny morning, I see a normal Spring day outside my window. I wear earphones as I listen to “God’s Healing Frequencies” on YouTube. The neighborhood seems so green and beautiful, yet strangely barren to me. It makes me wonder what it was like for my mom and her family all those years ago, going through the Great Depression. Was her world a lonely, sad and angry place then? How did that change the population as a whole?
Surviving the Loss of a Child
The first thing I have to say is that a parent can have no expectations as to how much time your recovery will take. You’ll hear things all over the board. For me, two years seemed to generally be the beginning of my turn-around time, but everyone is going to be different. I certainly don’t want to sound callous. That was my perception of another bereaved mom’s statement when all this was fresh and excruciating in my life. At that time, I could not imagine that this unbearable ache would ever subside. Hearing her words, I squirmed uncomfortably in my seat as unbearable emotions began to bubble up. I had thought her comments were absolutely heartless, yet her statement that after two years, she was so much better, echoed for years in my head. At that time, only four months after his death, I was just not ready to receive that message.
Well, all I can tell you is what my own experience was and continues to be. You follow no one’s rules but your own in your “return trip” following the loss of a child. It comes down to taking it one day at a time and many times one hour or even one minute at a time.
Expect that you will never be exactly the same person you were before. I eventually got to the point after several months when I recognized that I needed to “reinvent” myself. And that came only after I accepted that I should stay on this Earth. How to do that was the real challenge. With the help of a wonderful and compassionate friend, I created the “Close to the Heart” Transplant Support Group locally.
The group was intended to support others who were anywhere on the organ or tissue transplant spectrum. This included patients just learning from their physician that a transplant may be necessary. It also consisted of those who have already been evaluated and those listed for transplant. Of course, it was also for those who already had a transplant and provided a platform for common conversation of all these people and, just as importantly, their families, who are their greatest support.