Delivery Day

Ever wonder why you never hear from me on Accredo's delivery day? I'm busy counting and sorting 4 weeks worth of medicine vials and diluent, syringes, cartridges, tubing, dressing kits, and more... 

Medical paraphernalia piled on my kitchen table...

We're all mortal.

"She chose to get up early and work. To see the sun rise from the comfort of her worn saddle," Muffy Mead-Ferro described the morning her mom died in her book Confessions of a Slacker Mom. It was her mother's 61st birthday and "by midmorning, her horse shied frantically and reared over backwards so fast that she she didn't have time to throw herself out of the way."

"Granddad, heartbroken over having just lost his only daughter, had a comment I wouldn't have predicted," she continued. ""Well," he said after leaving the hospital, "we're all mortal.""

After the memorial service, she thought about what Granddad said and realized it provided comfort to her. "Death is a condition that's shared equally... by all of us," she explained. "Even his beloved daughter was subject to it.... My mom's death... was just a miserable manifestation of the fact that the world is not safe or predictable."

The day after the service the family went out on horseback to move the yearlings out to their summer range. Muffy rode in her mother's saddle and felt sure they were exactly where her mother wanted them to be...

"Right here in this wonderful, unsafe world. On horseback."

Granddad was right. We're all mortal. So grab the reins my dear friends...

The view from here...

No matter how positive a person can be there are times the view from here really sucks. Being in the world of the sick certainly puts things in perspective and I've learned just how difficult every little single thing in one's life can be when you can no longer do it easily or without help.

Unfortunately, I've experienced things that make me wonder why many people in the world of the well have embraced such callousness and such busyness that they fail to notice a situation that deserves a bit of empathy.

Last week one of my friends took me and my daughter to a gift store, located in a plaza next to a large grocery store, to shop for greeting cards. My friend and I are very ill. We look well enough and young on the outside, and often, our IV tubing is hidden in our shirts with the IV pump tucked into a waist pouch, or bag, or purse. But inside, our lungs are failing, causing a whole host of health problems, including heart failure. We are more like decrepit elderly women than 37 year olds with young children. Without the oxygen tank I push around on a wheely cart, and the tubing running across my face, it would be hard to know that much of my lungs are scar tissue and that I could faint easily due to loss of oxygen.

We are so ill that we don't get out a lot. We actually have to plan our outings carefully because they are huge ordeals. I get short of breath and tired. My ankles swell and my body aches. I have to carry around big oxygen tanks. It's inconvenient, slow, and I try to save my energy for things I really need to do or really want to do. Needless to say, our trip to the gift store was planned well ahead of time and we knew it would be the only thing we could manage that day. It was a huge deal for us and a special outing together.

While shopping, my daughter had to use the restroom. We went up to the counter to ask if we could use their restroom and I was told no. I understand that some places have no public restrooms but I assumed they'd make an exception. I was holding onto my daughter's hand with one hand, and in the other, I was dragging a large oxygen tank on a cart and a small stack of greeting cards so carefully laced in my fingers. I wasn't prepared to argue or to beg. I was shocked and feeling rejected, we made the long walk out and into the grocery and all the way to the other side of the store, in order to use their restroom. I had to push myself to make it there... feeling light-headed and out of breath. Then we journeyed back and in total exhaustion, I sat down in the middle of the store.

It's what I get for being a passive person. I left there upset. I was upset at myself for not trying to explain things. I was upset I had to walk all the way across the grocery store to use the restroom. I was upset that they told someone, so ill, no.

I have since learned there is a law in several states, including Ohio, that requires a business to let people with certain disabilities use their restroom, even if it's not open to the public. This will be good for next time. However, it does not fix the fact that it happened and does not rectify the lack of empathy I witnessed.

Let's talk about organ donation.

As of right now, according to the OPTN's transplant information database there are 118,646 people waiting for organs. There are 1,662 people waiting for lungs. And, I'm not even actively listed yet. (I'm almost done with preliminary testing. I'm about 90% of the way through the checklist.)

Today approximately 18 people will die waiting for a transplant.

If you haven't, I encourage you to register to be an organ donor. And, don't stop there. Discuss it with your family--children and parents--and anyone close to you. Make sure they know what you want them to do and encourage them to carry out your wishes. There are times a donor's wishes are not carried out by the family because they are too distraught at the time of death, or they just didn't know what their loved one wanted.

The Sarah Murnaghan case has brought a lot of attention, both good and bad, to organ donation. It's all over the news and a lot of people have voiced their opinions. I heard a story recently about a mother who went with her 16 year old son to get his drivers license. She wouldn't let them mark organ donor on the card because she didn't want to think about her child ever dying.

No one likes to think about it but it happens. But maybe we should think about it. Maybe it would make people get up in the morning singing praises rather than grumbling. Maybe people would be more kind on the road because they want fewer accidents. Maybe we'd have more terminally ill patients being able to make amends at the end of their life...

Maybe.

Talking about death in this society has become somewhat of a taboo. I've discovered a lot of people prefer not to talk about. Some ignore it. They fear discussing it will somehow summon or hasten death. I've heard stories of families who avoided talking about a family member's illness. Somehow they went on believing everything would work out and avoided telling the kids until the last moment. And then, when death came, everyone was bitter because they didn't make those last days count. They didn't prepare. They didn't know what the deceased would have liked.

They didn't talk about it.

Talk about it NOW because we will all face death. We just don't know when our time will be up. Tomorrow is not guaranteed. Someone, somewhere, right now, is faced with a loss and a decision that could bring hope to so many families. One deceased donor can save up to eight lives through organ donation. They can also provide up to 100 people with corneas, skin, bones, veins, tendons, ligaments, and more through tissue donation.

In just the time it took to write this blog post, eight people disappeared off the transplant list, three of them were waiting for lungs. Did they die or did they get their lungs? Did someone, dealing with a devastating loss, say yes or no?

Optimism

There is something I wish I had right now. It is something I miss that so many take for granted. And, that is health.

I realize I will never be completely healthy again. So, I will happily take the only option left for me... a few additional years on recycled lungs.

To prove how optimistic I am, I bought myself a gift... a five year journal and a seven year pen.

A system...

I think everyone has heard about the ten year old girl, Sarah Murnaghan, in Pennsylvania, who needs a lung transplant. Yesterday a judge ordered the Organ Procurement and Transplantation Network System to suspend their under-12 rule for Sarah.

This case has brought a lot of attention to organ donation and how organs are distributed. And over the past few days I've seen numerous comments from people who are not very well educated about the subject of organ donation.

This needs to change.

I need a double-lung transplant and I am learning much more than most anyone needs to know. I don't know what the ramifications of this case will be concerning the future of organ transplantation. But I do know that the system was overhauled in 2005 to increase the effectiveness of allocating organs and I'm told it has been successful at procuring more organs and reducing the amount of people dying waiting for organs. Perhaps this will be a good time for the organization to re-evaluate things and make sure the system is still running smoothly.

Perhaps this is also a good time to talk about an underlying issue here. And that is, despite children under twelve dying every day who could potentially be donors, their families are not agreeing to organ donation. Only 20 deceased lung donors in 2012 were under the age of 10.

Statistically no child should die waiting for an organ.

The Talk

People have asked what I've shared with my daughter. They want to know how much I've told her about my condition, this disease, and the outcomes of not surviving lung transplantation. I've told her mostly everything. The next question is usually: "How is she handling all of this?"

My daughter is handling this as well as can be expected. She will be nine years old next month and she has a pretty good grasp on what is happening and how lung transplant works. She knows that I am really ill and that I can die. I can die waiting for lungs. I can die in surgery. I can die of infection or rejection after transplant. She's probably more matter-of-fact with it than most of the adults I know. No walking on eggshells, nothing to hide. Just pure honesty and curiosity. She's been going through all of this with me... some times in silent contemplation and some times with extra cuddles and a few tears.

"If you are not here," she asked the other day, "is it my job to make sure daddy eats healthy food?"

I love that kid.

I sat down with her on Friday and I explained that we needed to work on funeral plans, just in case. She expressed her feelings of how she thinks it's unfair because I was healthy and never smoked and there are other people who do not take care of themselves and will live a whole lot longer. I agreed, it sucks. And, it seemed, once we both acknowledged it sucked, it was easier to move into talking about organ donation, cremation and burial, and memorial services.

I know a couple different women who lost their moms when they were young. Their moms downplayed their illnesses so much so that one of them told me she did not realize her mom was dying. She didn't even know what hospice was. They both expressed disappointment that they had missed that opportunity to know beforehand. Each had their own reason or rather, a few different reasons, they wish they had known. Had they known, the death would not have been such a shock. Had they known, they would have asked more questions or spent more time with their mom. Had they known, it would have been easier to get through the hurt of losing her.

I am doing my best to provide the opportunities--opportunities these women missed--to my daughter. By doing so she can work through some of the emotions and ask questions while I am still here. When I first learned how serious my condition was I found a publication by the American Cancer Society called "Helping Children When a Family Member Has Cancer: Dealing With Diagnosis" helpful. It gave me simple steps to start a conversation. And, even though it is geared towards cancer patients, I feel the publication can benefit anyone facing terminal illness.

A butterfly for me...

Is it human nature to want to have a symbol, token, charm, color, crest, or some other totem to call our own? Every college has colors, and along with political parties, a mascot. Professions and organizations, like fraternal orders and scouts, have their insignia and uniforms. Even diseases have acquired symbols and colors that those who have suffered, and their families, have used as a form of solidarity. For example, the blue cornflower represents ALS and the zebra represents pulmonary hypertension. And there are ribbons campaigns and silicone wristbands in all colors of the rainbow.

I've seen the butterfly used often as a symbol for new life through lung transplantation. There are stories and legends that indigenous people and ancient civilizations from around the world thought the butterfly symbolized transformation, change, and good luck. So, using the butterfly to symbolize new lungs seems fitting indeed.

There are purple butterflies for sarcoidosis, red butterflies for lung cancer, orange butterflies for COPD, and red and blue butterflies for pulmonary fibrosis. But I couldn't find a butterfly for rare lung diseases like pulmonary veno-occlusive disease or pulmonary capillary hemangiomatosis. So, I decided to adopt one. I chose the Common Buckeye butterfly, a beautiful brown butterfly with decorative markings of burnt sienna and cream, and distinctive eye-spots ranging in colors from blue to violet.

Now I have a butterfly--a totem and mascot--for me. She will symbolize my new lungs, my hope.