Kick the bucket list

What would you do if you had less than a year left to live? Fly across the country? Throw some big parties? Check some things off your bucket list? What about your spouse? Your kids? What do you want to do with them? What memories do you want them to have of you when you are gone? Would you even be in the position to make these decisions?

Maybe not.

If you know me, or are following my blog closely, you know I was diagnosed with a deadly lung disease and it has progressed quite rapidly. I am currently on the official waiting list for a double lung transplant. Without new lungs I will die. I have no other option.

I was ill for well over a year by the time I was diagnosed. By that time I was frail, on oxygen, and had heart failure. I knew what my chances were and realized I had to make some pretty big decisions on how to focus the energy and time I had left. For the first few months I remained stable on the medications. It bought me some time... time to research, to organize, to work my way through some projects.

I started organizing some older photos from my childhood and worked on making my daughter's baby book more beautiful, transferring everything to a sturdy leather album with more stories and information packed in its pages. I put together a few milestone cards for my daughter and tucked them away, just in case I won't be around for those special times.

I reinforced my choice to be an organ donor, and registered to have what's left of my body accepted into medical research. I tried my best at conveying my wishes to my family and friends and why certain things mattered, or didn't matter in case of death. I wonder how much actually got through since many of them don't like to think about or discuss what I call Plan B.

I wrote legacy letters for my husband and daughter. They were tough. I wanted to keep them short and sweet but had so much I wanted to say. Everything I typed was difficult and words didn't flow as easily as I wanted them to. I wrote them approximately four and five months after I was diagnosed and while I was still fairly stable on the medications, it took me weeks to complete them. When I got too upset I had to give it time. Then I attempted writing at another times, only to get upset again, needing more time. But, there came a day I just had to convince myself they were done and printed them, signed them, and tucked them away. Writing those letters was an emotionally draining experience.

It wasn't as much as I wanted to get done, but I had accomplished several projects by the time I started getting worse. The disease had progressed--I needed more medication, more oxygen. As time passed I had no choice but to slow down even more. And then slow down more. And more. And there's something about the fatigue that sets in when your body is dying. It's an evil thing when parts of one's body start to shut down or malfunction and other parts try to overcompensate. There are things that one should be doing but cannot. And things one needs to do, but cannot. One starts to lose contact with everything outside of the home and things pile up and do not get done. One's mind becomes foggy and thinking becomes hard. Even the thought of reading for pleasure hurts the brain. One becomes overly sensitive and they are always uncomfortable. And anything, even the most simple of things, seems too hard, too emotional, too draining. Each day they are just grateful they can control their bodily functions and keep food down.

I look back and I'm glad I got what I did done because it wouldn't be getting done now. The fatigue is too great. What I left unfinished will just have to remain that way because I cannot do any thing more. Now I just wait, and hope and pray, that someone will leave me the final gift of love--a life-saving pair of lungs.

Even though we believe I will come out of this just fine, I am pleased I have much of Part B done. I feel that it is a kind thing to do for one's family. It gives me some peace of mind going into an extremely risky surgery. And, it was one thing I could still do that feels like helping out... just in case.

One of my friends told me her mother died when she was an infant. Her mom was diagnosed with cancer and died ten months after she gave birth. "She had ten months," my friend said, "why had she not written a letter for me?" She admitted it bothered her.

I think we may look for simple answers when at times, there are none. I can only speak from my experience, imagining whatever my friend's mother was experiencing was unfathomable. Yes, there are those who go out with a blast the last few months of their life--taking trips and checking things off their bucket lists, illness willing. There are those who plan out everything and leave letters and organized estates. But I believe that is rare and perhaps hyped up by the media. Likely dying people may be in shock or are angry, or in denial. They may be too sick. Medications may cause horrible side effects, including delusions. And when the body is dying, and the fatigue sets in, a human body and mind is only capable of so much.

A bucket list may not be something one is concerned with when they are at death's door. And as strange as it may seem, a letter to leave behind for a child may have been impossible.

Holiday report...

I'm getting horrible at reporting in. I know. But, this time I haven't had too many people reminding me. I suppose with the busyness of the holidays engulfing everyone, many people have their minds on other things. In fact, the holidays are really in one's face this time of year--decorations, trees, cookies, holiday parties, gift buying, and Elf on the Shelf shenanigans. Overnight, drivers forget common courtesy, the mall parking lot overflows, and people are just so busy, too busy. People are stressed about presents and meals and whether they'll one up the neighbors with their house lights. People can get a bit nutty this time of year and quite honestly, I miss being one of them.

Anyway, it was a month ago I was in Cleveland. And, nothing really new to report. I'm getting worse, which is no surprise. I have a high LAS score and am still expecting the call soon. Little things are now harder to do and the breathing difficulties are frightening. If my oxygen saturation drops, I get dizzy and confused. I'm forgetting more and my body is falling apart due to lack of circulation, fluid buildup, and reactions to medications. I am having to sleep slightly elevated now and still suffer from jaw pain, leg pain, headaches, and more. I spend a lot of time trying to disconnect from my body and mind just to make it through the days. Unfortunately that involves watching stupid reality shows and playing fast moving colorful games on the iPad.

As I spend another holiday season on the sidelines, I'm hoping for a Christmas miracle. Maybe, just maybe, I will get the gift of life this year.

Betty bakes a pie

Remember I once, at the suggestion of an ill friend, adopted an old lady alternate identity? Betty. My friend had adopted Mabel. At times Betty and Mabel hang out. But, that's not too often because we, uh, I mean they are pretty decrepit. Mabel visited this week and she and Betty had a piece of Betty's pumpkin pie she baked over the weekend. Mabel knows how difficult such a project can be for someone in their situation and Betty was pleased she got to share her pie with someone who understands.

So anyway, on Saturday I, er, I mean Betty baked two small pumpkin pies and it wore her out. See, Betty hasn't had pumpkin pie in two years and has been craving it. She spent last Thanksgiving in the hospital and didn't get to make a pie. She is gluten-free and has an aversion to pies from the stores--read the list of ingredients in one and you'll understand why. A wonderful friend picked up gluten-free pie shells for her from the store to make her pie-making easier. And, her dear husband got down all the spices, took out the eggs and milk, pulled out all the measuring items, and the handheld blender. He also opened he can of pumpkin and placed a chair in the kitchen. He then went outside to work on fall-time chores that Betty can no longer help with.

Betty mixed up pie filling and poured it into the shells. She opened the oven, pulled out the oven rack, and tried to place the cookie sheet with the two pies on the oven rack without melting her IV tubing or her oxygen tube. All the while she was trying to mind where her face was so she wouldn't blow up from being so close to the inside of a gas oven. However, balancing and bending was too much and filling spilled over the edge of the shells and onto the hot cookie sheet.

With the cookie sheet now on the oven rack, Betty grabbed some paper towels and wiped as much as she could off the cookie sheet. She then had to get the oven rack pushed back in but she was light-headed and out of breath by this time. So, she sat on the chair next to the oven for a time, oven door open and unbaked pies sitting on the protruding rack. From her chair she slowly tried pushing the oven racks back, being mindful of her oxygen and IV tubing. The pie filling spilled over the shells again. She wiped up what she could manage without getting too far into the oven and finally closed the oven door.

Betty started the timer on the oven and took a nap without cleaning up her mess on the counter. She dreamed of a time, not so long ago, that she shopped for, prepped, and cooked a whole Thanksgiving day meal. And cleaned up the kitchen afterwards. She really misses being able to do all of that.

No Whining

There was a time I was too busy. Too tired. So sore. I complained about the daily hurdles of life--grocery shopping, cooking, cleaning, etc. I kept thinking that I had to push through it so these things would get done. Because, well, you know, who is going to do them if I don't do them? If I didn't sacrifice my time and energy, I would have piles of stuff, unopened mail, dusty corners, un-returned library books, and dirty dishes. I'd have no groceries and nothing to cook and my family would suffer.

I complained. Yet, now I realize there were very few times I had ever really felt pain I couldn't work through. And, I never knew what fatigue really was. See, if I had really known what pain and fatigue was, there would have been no working through anything. If I was truly in pain and that tired I wouldn't have been able to cook, clean, or go grocery shopping.  Because, when it gets down to it, true pain and fatigue stops you in your tracks. You cannot do what you want to do. And, you cannot do what you need to do. Things pile up and don't get done. Meetings go unattended. Events and holidays never make it on the calendar. And, even though one's brain knows these things have to be done, or should be getting done, there is no time or energy to sacrifice. All time and energy has to be focused on just surviving the day, trying to accomplish the basics like brushing one's teeth, eating, showering, and breathing.

When I am well enough I never want to catch myself whining about the daily hurdles of life again. Please stop me if I ever exclaim, "Oh, I'm just so busy." And, remind me that if I'm that busy, the universe is probably trying to tell me something.

You look good...

I used to see people, who appeared perfectly healthy, park in a handicap spots. "They don't look handicap. They don't look sick," I'd mutter to myself.

Who was I to judge? What does handicap look like? What does illness look like? What does dying look like? It seems I was totally missing a virtue that should have stuck with me through childhood and into adulthood: Don't judge a book by its cover.

I read a couple stories recently about nasty notes left on cars parked in handicap spots. Suzanne Perryman, a mother with a disabled child at a park, and Matt Milstead, a quadriplegic who was playing wheelchair rugby at a YMCA, received snippy notes about how they were clearly not disable or couldn't possibly be disabled. Yet, the authors of the notes failed to see beyond the cover. They assumed. They jumped to conclusions. "I've had people swear at me when they see me leaving a parking lot. Or when I pull in and they walk past me, they roll their eyes," Matt Milstead said.

By the time I was in heart failure and on oxygen 24/7, it was a blessing to have a handicap placard and be able to park closer to facilities. In the brief time I spent as a driver, I was stared at, glared at. Even now I catch people watching my family get out the car... my healthy young husband, and my bouncy daughter. Then my husband comes around the car to help me out. I see their faces turn when they see my oxygen tank.

Most of the time I can make my IV tubing disappear, tucked along my shirt and into a waist pouch. If I didn't have a cannula up my nose, I'd look fairly normal. A little pale, a little disheveled, but somewhat normal. I don't look like I'm dying. But then, what is dying supposed to look like?

I've been told I look good. I know it is supposed to make me feel better but lately I've become more sensitive. A lady I knew of through one of my support groups died recently while waiting for a life-saving organ transplant. And it happened quickly. She was having some difficulties, ended up in the hospital, and in less than two weeks she was dead. Her friends and family were shocked. "How can this happen? She looked good," they exclaimed. They failed to look beyond the cover. They failed to see the frail, brittle pages. Worse yet they spent the last few months unknowingly invalidating the seriousness of her illness with comments such as, "You look good."

She was thirty-something, likable, and her life was turned upside down due some some random illness which was no fault of her own. She was a devoted wife and mother. She was fighting for her life, fighting to stay here for her young son. On the inside her heart and lungs were failing and she was on strong IV medicines and oxygen. She was dying but they said she looked good.

In his book, The Last Lecture, Randy Pausch chronicled his life as he was dying from cancer. He was pulled over for speeding shortly after moving his family to Virginia. When questioning his out of state license and his move, Randy explained that he was dying of cancer and thought his wife and kids should be closer to her family. He just hadn't gotten a new license yet. The policeman said, "You know, for a guy who has only a few months to live, you sure look good."

Randy realized the policeman was trying to figure out if he was telling the truth. "I look great on the outside, but the tumors are on the inside," Randy tried explaining. He then pulled up his shirt to reveal surgical scars to prove his story

Why do we often base our assumptions on how a person looks? Are we judging a book by its cover? I wonder how many Randys, and Matts, and Suzannes are among us.

Keep the prayers coming...

I have received a lot of prayers. Prayer, affirmation, meditation. Whatever you want to call it, it's an essential part of many religions. And prayer is ultimately linked to miracles. When I returned this summer with less than stellar news, a friend said, "Oh, but we have been praying so hard for you." I could sense disappointment in her tone. Disappointment in me? Disappointment that her prayers were not answered? Disappointed in God? Is it possible for me to sprout a new lung? I'm certainly open to such a miracle if it were offered to me.

I suppose it is easier to see the extent of the damage when someone has lost an arm or a leg. But when a lung is no longer functioning, we cannot see it. It baffles us. And when we cannot see it, we doubt its severity. And when prayers seem to go unfulfilled, one starts to doubt God or themselves.

I have spent a lot of time thinking about this. I've been in the hospital, had countless tests, plenty of sleepless nights, and trips back and forth. I have suffered through some hard days, physically and mentally. I have watched my daughter sleep and I've cried, praying I will have more time with her. It is a prayer, so deep, so primal, that is offered up to the highest and to anyone willing to hear my pain.

And miracles? I am still here. Had I not persisted and not been in good hands, I could have died months ago.

I am building stronger ties with my family and friends. A miracle. I have learned what is essentially the most important thing in life. And when everything is stripped from you, you learn to hold on to those around you with a firm grip.

Letting go. A miracle. There were a lot of trivial things building up in my life, distracting me. Those had to go and fast. I had to learn to let others take the lead. And, I had to do so without complaining. Once an independent and natural born organizer and leader, I now realize things can not always run as I would have run them. It is quite humbling to know the world can go on without me and my skills.

Do not doubt. Do not give up. Look at all the good that surrounds us and keep the prayers coming. I still have a long road ahead and I'll be watching for all the little miracles along the way.

The List

I'm part of a support group of over 1,400 people who are in different stages of lung transplantation. While a handful are caregivers or spouses, most are either waiting for lungs or have had a lung transplant. Last night, after spending some time on the support group page, I realized that in my last post, I may have made it sound like transplantation was an easy decision. I want to clarify... it isn't. It's terrifying. But, when the other option is death, it makes it seem easier. I also want to point out how fortunate I am to have the opportunity to make that decision because it's not offered to everyone who needs a transplant. There are plenty of people on the support group who are struggling to get listed.

Getting on the list is a chore and a privilege. Organs are in great need and approximately eighteen people on the list die each day waiting. These are people who were chosen to be good candidates and have completed all of the tests required to be able to be listed. That doesn't include the people who have been turned down, or are struggling to get listed by changing their lifestyle, their habits, trying to gain weight or lose weight, fix dental problems, etc.

Each transplant center is different. I can only tell you my experience, based on my doctors and my center. My center won't list one until they are close to death. But, they also know they have to list one before they are too ill. They have gotten pretty good at determining this window of opportunity. And, this is my window of opportunity. I'm sick enough to be listed but well enough to survive surgery.

Knowing I'd need a transplant, we started with the prerequisite checklist at a slow pace and worked our way through it... ticking off each test or requirement. One by one--lots and lots of blood-work; regular pulmonary testing; dental clearance; allergy testing; tissue typing; updated vaccines including the entire Hepatitis A and B series; updated and current annual exams; bone density scans; heart cath; and tests like gastric emptying, which involved a series of scans after eating radioactive eggs. (Ick!) They also require a psychological evaluation. The tests are daunting and the older one is, the more tests seem to be required. And, if, like in my case with allergies, if one test has some irregularities, there are additional tests scheduled to rule out other things. And, of course, the checklist includes approval from the insurance or some other guarantee that they will be getting money for all of this.

Once these requirements are met, one's case is discussed by all the doctors, the surgeons, and the social worker. At that point, if it is determined one will be a good candidate, a Lung Allocation Score is assigned and one's information is sent in for the list. All of one's information is entered into a database so that when an organ becomes available, the database is searched for the best matches.

Matches are based on several things--blood type, antigens, antibodies, proximity to regional center, body size and more. There is no guarantee. For some individuals, matches are harder to find. Even if one is first in line for an organ at their center or region, if the organ doesn't match well, it will be offered to the next in line... someone who is a better match. It's a system that assures people will get the best new start with a recycled organ.

It all seems complex, but it's a system that works as well as it can with a shortage of organs. It doesn't have to be this way. If more people were aware of the impact of organ donation, those eighteen people would not be dying each day. Instead, they would be given an opportunity to live longer, to be with their children, their grandchildren, their spouses. A mother and father would cry with happiness, friends would rejoice, and a community would be overjoyed. Someone, someone like me, would breathe again. She would be able to be a mom and wife again. She would be most grateful to her donor for that final gift of love... the last gift any person can give.