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.

Two roads diverged in a yellow wood...

Two roads diverged in a yellow wood and neither will lead me out. One goes straight to the cemetery... so I am taking the other one. I will journey on as long as I can and hope for a successful surgery and a speedy recovery. Transplantation is not a cure. But if all goes well enough, it will give me the opportunity to live for several more years.

A few more years in these woods.

In an earlier post I mentioned the amazingly talented Charity Sunshine Tillemann Dick, who has had two double lung transplants. After her first double lung transplant she did everything asked of her. She took her medicines on time, avoided crowded spaces, and did everything suggested to reduce her risks of rejection and infection. But, when she went for a regular checkup, expecting a clean bill of health, she learned her body was rejecting her new lungs. She was angry. "I feel like I've done my time," she wrote in a blog post, "and I was looking forward to doing some more pleasant time in the the coming years."

Charity explained that even though we do something well or we get through something challenging, it doesn't mean the work ends or that there won't be other challenges. She continued, "While I might not be "out of the woods," there is more beauty and love inside of them than I could have ever anticipated." Charity is right. Even though the road has been pretty rough so far, I have learned so much and have met some wonderful people. And, since I will never be out of these proverbial woods, I won't mind setting up my abode here for the rest of my life. I'll have plenty of visitors and some great neighbors.

Reporting...

I am due to report in... here in the blogging world. But, there seems to be little to share. I feel like there should be some substance, some point, some news behind a post rather than me getting on here and babbling.

I get very little done each day. I do but a small fraction of what I would like to do... and what I used to do. I make sure my daughter is doing her schoolwork. I spend a few minutes prepping it, checking it over, and helping her with things she may be stuck on, or spend more time with her on the more involved projects. Then, I take care of the most pressing issue of the day... like calling insurance companies or ordering and organizing medicines. A lot of times I try to nap on the couch in the afternoon. At times I am successful and it makes me feel better in the evenings. I take oral medicines four times a day and have to change the cassette on my IV pump once a day. (My husband has been doing most of the work mixing the medicine in the evenings.)

If I want to do something, like bake cookies, or go somewhere for a few hours, I have to plan ahead. When I go out I have to have a ride and help, and I have to save my energy. I have to make sure I take several oxygen tanks and my medical bag. Often, I'll try my best to schedule a down day or two between outings. And, depending on how I handle the outing, I may need a couple days to recover. The weeks I spend a day or two in Cleveland are the worst.

This month I have been to two different department stores for the first time in weeks. And, the only reason I've been able to do this is because I finally broke down and accepted the fact I could... er, need to, use the electric scooters at the stores. My oxygen tank proves to be unwieldy though and makes it harder to maneuver around the store. Most of the aisles are impassible and many people seem to not even notice, or care, that I am trying to get by, or that I'm stuck waiting until people allow me through an opening big enough to accommodate the scooter. It feels a bit like when, stopped at a crosswalk one will wave some slow person through, and then for the next five minutes a cascade of people use the crosswalk while one tries to patiently wait.

Just going outside to get a few minutes of fresh air proves to be too much trouble now. The joy no longer outweighs the effort or the energy I have to spare. I have to disconnect my oxygen from the big compressor, hook up to a tank, and preferably, make sure my IV line is nicely tucked away so it doesn't catch on any protruding objects. By the time I walk out of the house and down the whole four steps on the porch I can feel my oxygen saturation dropping and my poor heart thumping. My poor heart. It's so tired of trying to overcompensate for the lungs.

In the evening I work my way upstairs, stopping twice for breaks, breathing, coughing, letting my oxygen saturation bob back above 90% before tackling the next few steps. Once upstairs, I prep myself for a shower.

Showers are an ordeal. In attempts to keep them dry, I cover the joints on my extension tubing and cover the catheter site that goes into my chest. I wipe down the catheter area with alcohol and a skin barrier wipe and then I cut the Aqua Guard cover down to fit well enough and add extra tape. The Aqua Guard covers are a whole lot bigger than my site and If I leave them as they are, they just pull up and get everything wet. Then I'd be forced to change the whole dressing at the site for fear that if I didn't, I'd get an infection. I have to take showers with my oxygen on. I hang my IV pump on the towel bar. The tubing snakes out of the shower and water trickles down, making a puddle of water on the bathroom floor.

Going to sleep at night is becoming more of a challenge. I'm still doing well cutting out the sodium, but with the warm, humid weather, I've had a hard time limiting liquids. I miss guzzling water. Even though I am not guzzling liquids, I find it difficult to resist several small glasses of cold tea each day. Of course this adds to the water retention, the swelling, and just general achy, puffiness. Lately it has been a toss and turn battle, trying to find a spot where it feels comfortable enough to attempt to sleep. If I were not sick I could get up and read a bit or work on a project. But, I know better. Even if I cannot sleep my body needs to just rest.

If I can get settled and somewhat relaxed, my oxygen saturation goes up and my heart rate slows down. I feel better, even more normal, during that flitting moment between being awake and drifting off into sleep. I suppose, it's as normal as I am going to feel with an oxygen tube secured to my face and an IV line running from my chest to the pump on the bedside table. It's this quasi-dream-like state that reminds me of what used to be, before the loss of lung function and before the heart failure. It also reminds me of the hope we hold close, knowing that one day I will come home with new lungs.

A thank you to my team...

Today I want to thank you for being part of my team. Family and friends, you are...

...the ones who slept on uncomfortable chairs in the ICU to stay close to me.
...the one who asked if I had any errands to help with this week. You returned my library books and mailed a package off at the post office. And this isn't the first time. I'm sure without you making yourself available, I would have several piles of stuff left untouched, things to return, and boxes to mail. I appreciate your persistence.
...the one who came over and edged my neglected sidewalks.
...the ones who weeded my garden and helped with the yard.
...the ones who call and ask, "Hey, I'm going to Kroger (or Fresh Market, or wherever); what do you need?" And, you are patient enough to find the right brand and check ingredient lists for potential allergens.
...the ones who have helped me get to and from doctor appointments.
...the ones who have driven my daughter, and me, to school and scouting functions.
...the ones who have helped with fundraisers (hosting events, organizing, doing the leg-work, etc.) and continue to do so.
...the one who has picked up various requests like gluten-free pizza, organic taco shells, and special cheese.
...the ones who have opened their homes to me when I needed a place to stay.
...the ones who have helped with home projects we've been forced to neglect.
...the ones who donate items for the fundraisers.
...the ones who have watched over my daughter when we are unable to do so.
...the one who made several trips up and down my basement stairs carrying boxes of stuff.
...the ones who send checks and make donations.
...the ones who have helped me go on various errands, helping me lug around bags and my heavy oxygen tanks.
...the ones who have placed me and my family on prayer chains.

To all of you... thank you for being part of my team. I appreciate all you do--the financial help, the reminders, the rides, the prayers and good thoughts, and your gift of time. It has been difficult to let others do so much for us and I still feel guilty letting others give so much when I can give so little in return. At times, I'm not entirely certain I sufficiently express my gratitude and a thank you often seems like an inadequate response for all the love my family has received.

But, at this time, it's all I can offer. And, I cannot say it enough...

Thank you.

A filter...

In her book Living With the End in Mind, Erin Tierney Kramp explained that before she was diagnosed with a life-threatening illness, she and her husband Doug "generally felt caught up in the whirlwind" of their lives. After diagnosis their various responsibilities did not disappear but they "had a new filtering mechanism for deciding what to take on each day." By acknowledging death and living with "the end in mind," Erin felt they had grown closer as a couple and became better parents. "We wish everyone could get the perspective of having a life-threatening diseases without having to suffer from the disease itself," she wrote.

Despite the mourning and the loss, I am experiencing a paradigm shift that feels important and healthy. It has a lot to do with the filtering system Erin explained. How I view the world, my life, and everything around me is affected by this disease and my current state. It goes back to the Spoon Theory I explained in an earlier post. Once I faced a limited amount of spoons--time, energy, resources--I had to focus. I had to slow down. I had to prioritize. I had to accept help. It is then, I realized, that I was watching the whirlwind, for once, standing a far distance from the mighty winds. And now I realize that some of that stuff blowing about, really didn't matter.

Now I have a filter. A gift, really.

An empty hen house...

Saturday morning I woke up to an empty hen house. Throughout the day I kept glancing out of the window, expecting to see the hens lounging about in the sunlight or scratching about for little morsels to eat. But they were not there. The backyard seemed life-less. It was the first time in years, and the only time since it was built, that the coop was empty.

See, the transplant team questioned my choice of pets. Although my hens have caused no harm, they suggested we move the coop further from the house because keeping birds of any kind when one has respiratory issues is risky. I should not interact with chickens (or any birds) and should not clean the coop. And, I shouldn't be around the straw used for their bedding because it can harbor air-borne pathogens.

After we discussed it, we decided not to move the coop. We started raising chickens in order to have our own supply of healthy eggs from happy chickens. This was a few years ago, when backyard eggs were harder to find. But now, I can easily get eggs that are not raised in industrial settings. The chickens though had became our pets and part of our daily lives. We watched their antics from our window, fed them kitchen scraps, and gathered eggs just a few feet from our back door.

Moving the coop further away would mean I would no longer be able to watch them. Going out to the collect the eggs would seem more of a chore. I can't interact with them. I can't even put straw in the coop. So, we asked some of our friends to adopt the hens and on Friday night we took our hens to their new home.

I am no longer the chicken lady. I am no longer the friend who raises chickens. Yet another thing that once defined me is taken away because of this disease. However, I still care about the health of egg-laying chickens and the nutritional benefits of eggs. I'm still a wife and mother who cares deeply about my family and I wish to stick around here as long as possible. If being around birds is too risky, then I won't be around birds. I'm serious about living, even if it means waking up to an empty hen house.

Medicines

See that little group of words, down towards the bottom, in the right hand column? Notice how big the word medicine is? That's because, as of this date, I have blogged more about medicine than anything else. I was hoping to change that one day, but today is not the day. Several people have asked for more details concerning the type of medications I take, so here they are, in no particular order.

Veletri is an intravenous medicine that is given continuously through a catheter that runs into my chest and straight to my heart. Veletri is an epoprostenol, which helps dilate (open up) blood vessels in the lung, allowing blood to flow more easily. The PVOD has scarred much of my lung tissue and there will be no regeneration of this tissue. However, the Veletri is opening up what is left. (The scarring the PVOD left behind causes the backing up of blood in the pulmonary artery and that is what caused the right sided heart failure. The Veletri helps relieve some of that pressure on the heart.)

Digoxin is a medication used to treat heart failure. It helps make the heart beat stronger and with a more regular rhythm. The interesting thing about Digoxin is that it is made from the leaves of the digitalis, or Foxglove, plant.

Furosemide is a diuretic that is used to treat edema, or swelling. Unfortunately, some diuretics, like Furosemide can cause hypokalemia, low potassium levels. So, potassium supplements are often prescribed.

Spironolactone is another diuretic that treats edema. It's actually a potassium-sparing diuretic. However, I take this in addition to the Furosemide and still have to take Klor-Con Potassium several times a day due to hypokalemia.

Furosemide and Spironolactone are often called water pills. Without them I'd probably look like the Stay Puft Marshmallow Man. Those little pills do amazing work.

Warfarin is an anticoagulant that is used to prevent the formation of blood clots. A lot of people refer to these as blood thinners. Warfarin is essentially rat poison. It was created in 1948 and used to kill rats and mice. Lovely, eh?

In addition, I take a Vitamin D3 supplement. Most people, especially those living in Ohio, are deficient in Vitamin D3 and should have their levels tested. Research has shown that Vitamin D3 is essential for aiding in the absorption of calcium.

I have very low blood pressure, so I walk a fine line between what medicines I can take and still be properly treated. I've been asked why I'm not on this or that, but I leave such medical decisions up to my team of doctors--pulmonary doctor, cardiologist, transplant doctor, bone doctor, allergist, and more. They include some of the best at Cleveland Clinic and are specialists in their field. And, just as their patients are different, so are the treatments they prescribe.

Impermanence

A friend recently forwarded an article to me. The article was about a woman who had a double lung transplant at Cleveland Clinic over a year ago and is doing fine. "Dreams do come true," my friend wrote.

Dreams.

Less than a year ago my dreams did not include a double lung transplant. Last year I believed my health issues would be worked out and I'd go on living my life as I had been. But, despite what I wanted, my busy life continued to drop away and left me with one goal...

To survive.

I hope to have the opportunity to create new dreams. If I am given a second chance at life I have to accept that the possibilities may not be what I wanted a year ago. After transplant I will have to get used to the idea of a life of impermanence. I can hold onto dreams but with a loose grasp and with no particular attachment to them. A different life. And, instead of being depressed or angry about what I can no longer have, or dream about, I will have to form a new life from what I would like instead.

Instead. And that is better than the alternative.

Another Last Hurrah

I went to the Ohio State Fair on Sunday. My daughter and her Girl Scout troop won awards for the projects they submitted and I was determined I was going to watch the ceremony. I made it, but I think it is indeed the last state fair, or any fair, I will manage to get to before my transplant.

This is the back of my car and the oxygen it took to spend a day away from home. And, I was only able to do it with the help of my husband, who went back and forth to the car several times to switch out the empty tanks. With the oxygen, my IV pump, a wheelchair (for long distances), and a medic bag, I feel like a traveling hospital. I'm getting weaker and I can accept my limitations or I can kill myself trying to do too much. (I believe that even a healthy person would have a difficult time dealing with everything I have to deal with, especially doing so being tethered to an oxygen tank and an IV pump.)

I tried to take it easy and stayed in the air conditioned youth center. I looked at projects until I had a migraine-like headache and was tired. It was getting difficult for me to keep my oxygen saturation above 90%. Then I sat and waited. Even though I was feeling ill we needed to stay until 6 p.m. in order for them to release the projects to the Girl Scouts. A little after 5 p.m., I explained my condition and asked if they'd make an exception for me so I could head home, but they refused. They told me it is the fair's policy to not release projects before 6 p.m. and claimed if they get caught making an exception for me, they could lose their privilege to be involved with the fair. I understand. Policies and rules are there to be followed and, if they make an exception for one person, everyone will want an exception from some reason or another. Once again, I was faced with the callousness and oblivious nature of those in the Well World.

I'm starting to realize this is why I don't see many people in my condition, or a similar condition, out doing things. We are weak and needy and we need exceptions. We need help and we hesitate to ask again and again. Very few want to make exceptions for us and we know this. So, it's easier to stay home; miss out; and spare us, and our family, the stress and effort it takes to plan, and execute such a plan, for a day outing.

I've had a year full of last hurrahs. It's not giving up. It's being sensible. But, missing out is a very sad thing.

The big switch

My pulmonary doctor said we could look into switching to Veletri, from Flolan, after my right heart cath. As promised, he had the wheels in motion by the time I was home. Last week an Accredo nurse came to my house to monitor me during the switch.

Basically Veletri is the room temperature stable version of Flolan. It's the same medicine but contains a preservative that reduces the need of the medicine cartridge to be sandwiched between ice packs constantly (with the exception of those really warm days). Since Veletri has a different chemical structure, the nurse monitored my vitals for a short time to make sure I had no adverse reactions.

Several cartridges of Veletri can be made at one time and stored in the fridge until I am ready to use them. So now, when I travel to appointments, I should not have to mix medicine away from home. I can plan ahead on what days we will mix cartridges and then have some flexibility on the other days.

Not having the constant need for ice packs is liberating. It also lightens the IV pouch by about a pound. And, that makes a big difference when I must carry the IV pump with me everywhere.

I cringe when I see a swan.

Almost two weeks ago I had another right heart catheterization. Other than some minor pain and a nasty rash breaking out all over my neck (probably from the chemical prep), I got through it fine without sedatives. And, if I have to find something good to say... I will admit, it was better than January's right heart catheterization.

In January, the Swan-Ganz catheter was left in my neck for several days. Now I cringe any time I see a swan, or even hear the word swan, despite it being named after the doctors that invented it. I've included a photo of that nasty device here. It is through a large yellow trumpet-like part that goes in the neck's jugular vein (and is not pictured) that several lumens, each with a different function, are threaded. The main yellow line you see, partly covered by a plastic sheath, is the line that ran from my neck, down the vein, through my heart, and up through my pulmonary artery. That is the line remained inside my heart for several days when I was in the MICU. All the rest of those tubes and such hung to the side of my neck.

The test showed that my pulmonary pressures were down a bit. This proved the medicines have helped to relax my heart. However, the following week I had additional pulmonary testing that revealed my breathing is getting worse. It's harder for me to breathe and my lungs are not doing their job getting enough oxygen into my blood. But, this is the expected course of the PVOD and was not a surprise.

What was a surprise, however, is that the doctors have run across a reason for additional testing. My heart sank. I had hoped we were done and I would be officially listed. They ran some more lab-work while I was there and I'm expecting to go back in a couple weeks for additional testing. I won't go into details now, but let's hope it's just a little hurdle.

July is not over.

I keep thinking it's August. Mostly because July has been a whirlwind, not unlike most of this year. I woke up early this morning because of the storms. And, then... the electricity went out. The hum of the oxygen compressor stopped and it beeped out an alarm. I hooked up to a portable tank but I could not sleep because I was too scared I'd run out of oxygen and not realize it. I felt so vulnerable. I need the oxygen compressor (that uses electricity) or a tank of oxygen and I'm on an IV med that must stay cold. I thought about the medicine in the refrigerator and the ice packs I use in my IV pouch and I hoped First Energy's website was correct about their estimated repair time.

It's the same vulnerability I felt when I was caught in a storm last Wednesday on the way back home from the Cleveland Clinic. I had had a right heart cath late morning and my friend was driving me home. After a stop to eat lunch, we headed west on the turnpike. What we didn't realize was that we were heading towards a very dangerous storm. A little past the Sandusky and Norwalk exits we encountered lots of wind, rain, lightning, and hail. And, I could hear the tornado sirens. We turned on the radio and heard the weather service announcing tornado activity and to seek shelter right away. Cars were pulling off on the side of the road, including under the overpasses, which is dangerous in tornado weather. The drainage ditches on the side of the road were completely full of water. My friend put on the hazard lights and followed a semi and we slowly inched ahead. We agreed we really had little choice and that we'd gauge our decision on the reactions of the semi driver since he or she would have communication with those up ahead on the road. We felt it was just as dangerous to park on the side of the road as inching ahead at snail speed.

We reached the Commodore Perry Service Plaza and found what was perhaps the last parking spot left in the whole place. But, we were stuck in the car with the wind whipping and the lightning zapping all around. We knew if we stepped out, we'd become instant lightning rods. (And remember how I calculated my chances of getting hit with lightning was greater than getting some rare, random, lung disease?) So, we sat. Again, I felt vulnerable. I was hooked to an O2 tank I desperately needed. I couldn't leave it in the car and run. Actually, I would be unable to run with or without it.

Once the lightning calmed, we decided to make it into the service plaza. We walked in and everything seemed very quiet. There were a few people standing and looking around, looking just as confused as we were. The restaurants and the gift shop were closed up and dark and the place seemed relatively empty. That was just a brief moment before a lady in a blue uniform came out and announced that people could now leave at their own will, as the tornadoes had passed. Then the place filled with people (and their pets) who had waited out the storm in the plaza's storm shelter.

I told my friend she deserves the best driver award for driving us past a tornado. It's probably a good thing she was with me that day as she is the most cautious and calm driver I know. As for the storms this morning, First Energy had the electricity running again before the estimated repair time. I was able to hook back up to the oxygen compressor and its hum lulled me back to sleep.

Family Fun Night

Thank you.

I wish there were more meaningful words to express the thanks I feel my family and friends, and even a handful of people I had never met before, deserve. Family Fun Night was successful and the kids had a blast. There were bounce houses, carnival games with prizes, a silent auction, baked goods, food, and more. I was completely overwhelmed by the attention and the outpouring of love and support my family received.

Thank you, thank you, thank you.

Seeing red...

I've heard stories, from others with permanent IV lines, about the tubing disconnecting, the IV pump beeping in the middle of the night, medicine cartridges running empty, and waking up in either a pool of leaking medicine, or worse yet, a pool of their own blood. One story came from a friend who forgot to clamp the Hickman tubing before disconnecting the extension tubing. There's a little device, mine is called a BD Q-Syte, that goes on the end of the tubing that is spring-loaded and holds back the powerful pressure from one's heart. It is replaced every week to reduce the risk of infection. When a person forgets to clamp and takes this device off, blood shoots out. And I've heard, it's a lot of blood. That's why, when I change this little extension piece, I chant: "Don't forget to clamp."

Yesterday my BD Q-Syte malfunctioned on the way to my mother-in-law's house. I felt something wet on my shirt when I realized it was blood I pulled the tubing out of my shirt. Blood and medicine were leaking from the joint. We pulled up to the house and hurried in to change the piece, which we assumed had gone bad. (Thankfully I am a good patient and carry my suggested medic bag, that includes extra medical paraphernalia, tubing, a backup meter, batteries, etc., wherever we go.) We acted quickly and my husband got the Accredo nurse on the phone. She assured us we did the right thing and that the line would eventually run clear. Sure enough, the blood in the line was eventually pushed back by the medicine but it had been a relatively frightening experience.

This is the tubing I keep tucked in my shirt. The white tubing (and clamp) is part of the Hickman catheter that goes in my chest and directly to my heart. The round thing on the extension tubing is a filter. The joint between the extension and the white Hickman tubing is the BD Q-Syte device. That is the piece that malfunctioned and caused blood and medicine to leak out.

Getting my ducks in a row...

After two days of testing and appointments at the Cleveland Clinic at the end of May, I arrived home in a bit of a fog. Shocked, but yet, not surprised. I felt better after a hug from my daughter and a night in my own bed.

I was told I don't have long without getting new lungs. I have to finish the testing and get listed. Soon.

June was a blur. I overdid things, especially in the later part of the month. And, I paid for it... ill and swollen, and it has been taking several days to recover.

Remember those two bags I talked about? I'm still packing. Most days I feel like I am trying to beat the clock and doing so with limitations due to my medical condition. I'm getting my ducks in a row, making end-of-life decisions, going through personal possessions, and working on scrapbooks. I won't get everything done. But then, that is what the other bag is for. Everything else gets packed in there. Sentences around here are frequently started with "When I get my new lungs" and "When I can breathe again."

Not all ducks are orderly. There are a few that weave in and out, and another that always stops to look at something and falls behind. I'll probably never get comfortable with this uncertainty but I must accept it. I may not know where I am going, and my ducks are in a, er... sort of a row, but I must paddle onward.

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.

Ready or not...

In an earlier post I talked about Tiffany Christensen's book Sick girl Speaks: Lessons and Ponderings Along the Road to Acceptance. It is a very positive read and I appreciate her insight on illness. In her book she described a time in her life when she was sick enough for a lung transplant and she knew what she was up against. "I had to plan for both possibilities equally," she wrote.

"I continued to plan my funeral and say my last words. At the same time I dreamed about all the things I would do once I was well. The image I used was packing two suitcases for two destinations... I had no idea where my bags would end up," she explained. She knew both were possible.

All of this seems to be happening too quickly, especially since I've been moving at snail speed for months now. But, it is time. I must pack my suitcases.

Over the next few months I should try to get my affairs in order, make my final wishes, tie up loose ends, say I Love You. That's one bag.

And then there's the other bag. I will imagine waking up with new lungs. A new beginning. I will need to pack lots of hope--hope that my body will recover from surgery quickly, hope that I respond well to the medicines, and hope that I can get a few good years out of the new lungs.

I tell myself I'm lucky. I get to pack. Some people do not get that opportunity. And, I can pack two bags. Some people only get to pack one. Perhaps I won't remember to pack everything or I will run out of time. Whatever I have packed and whatever I have managed to prepare will just have to do. And, when the time comes, I hope to return with renewed strength, a bag in hand... heavy with hope.

Lung Recipients

It's all very surreal to think that one day I will be receiving lungs from another person--a person who has died and has chosen to give me another chance at life in their absence.

Doctors assure me the surgeries usually go relatively well. It's the rejection and potential complications that cause concern. I have blogged about the statistics before. I have approximately a 50 percent chance of making it to five years on a lung transplant. I have a chance. I have hope. And, thanks to the power of the internet, I'm discovering inspiring stories of lung recipients who are on their 3rd, 17th, and 21st year. 

What some of these lung recipients are doing with their new lungs is amazing. There's Rowan Jimenez who got back into his music, biking, and rock-climbing; Alex Parker, a Jazz singer who wrote a song called Breathe In for the Ontario Lung Association; Charity Sunshine Tillemann Dick, who continues to wow audiences with her amazing singing and spirit; and Hélène Cambell who started Give2Live, a program to help transplant patients at the Toronto General Hospital.

Most of all, they have embraced life. They are powerful because they truly know what it is like to face death. And now that they can breathe, they are going to share with the world.

Agendas

My friend who has a similar disease calculated how much time she spends on her disease--everything from mixing medication to doctor appointments. She found that BEING SICK requires at least thirty hours a week--as much time as a part-time job. She pointed out that the rest of the time she functions at about 60% of normal. (Unfortunately for me, I feel as though I function even lower.) No wonder we get very little done...

Our agendas are sparse. They have to be. We can accomplish only so much in a day. And, our agendas have to include chores associated with being sick. For us, it's a matter of survival. Both of us have shared how we lament the loss of our old agendas--completing chores off a never-ending to-do list and not being hindered by illness.

Tiffany Christensen wrote a book called Sick Girl Speaks: Lessons and Ponderings Along the Road to Acceptance. She shared a letter she sent to her to her doctor after she overheard him talking about her in the hallway of the clinic. She was dying of chronic rejection after a lung transplant when she wrote: "I'm sorry that I've made your work day a little harder, a little longer. I'm trying to live with terminal illness and you're trying to get to lunch. Our agendas are so different."

How many people rush through their day, complaining much of the time, never once considering how one's own agenda may affect another? Do we leave enough room on our agendas for slowing down to help a fellow human?

Do we leave enough room on our agendas for being kind?

Freedom comes with tubes attached...

In my quest for more freedom, and within the boundaries of what my insurance will help pay for, I've gained the privilege to use an iFill system in my home. This only means I now have an E tank (approximately 25 inches tall and weighing over 7 pounds empty) that I can fill at home. It's too big to carry, so I have to wheel it around on a little cylinder cart. But, I suppose that's okay, as my back hurts anyway from the extra weight of carrying around the CADD Legacy pump and medicine cartridge sandwiched between ice packs. Now I just have to struggle getting this tank and wheeled cart up and down the porch steps and in and out of cars. I also have to maneuver it over huge cracks in the sidewalks and avoid potholes in parking lots.

To fill a tank I have to place the valve of the tank into the iFill system and turn the machine on. The machine then pumps concentrated oxygen from the air into the tank. While it does this the machine roars and clicks. It sounds like a trash truck is in my home, running it's engine. It's loud. In fact, it's too loud to run at night. And, the E tank takes over 350 minutes to fill. That comes to about 6 hours. (When I filled my E tank, it seemed to take longer than that.) I've also been warned that the iFill is very finicky. If the house gets over 80-degrees it will probably heat up the little sensor inside and it will crash. Then, I will have to call the iFill experts in to reset this sensor gizmo thing.

Yesterday afternoon we had our year-end celebration for our Girl Scout troop at the local botanical gardens. The girls had a fused glass class and then we presented them their one-year stars and bridging awards out in the garden. It was a beautiful day and my tank lasted all afternoon. I didn't have to have a friend run back to the car for the extra tank and didn't have to watch the gauge and worry about what time I needed to leave. However, as I type this, I'm having to refill my E tank. The iFill machine is roaring and clicking as it sends rhythmic vibrations across the floor.

Freedom?

I can certainly be thankful I live in a country and in an era with such technology that allows a patient to have oxygen at home. Had I lived one-hundred years ago, I'd have to seek out an institution that provided oxygen. I'd be away from my family and perhaps bed-ridden.

Freedom? Yes, I suppose we can say that.

Medical waste

Good thing I was green for so long. Now I'm making up for what I didn't waste then with all of the medical waste that comes with this illness--caps, bottles, syringes, boxes, and oxygen tubing. The amount of waste overwhelms me. There's a lot of precious resources used to create these overly packaged one-time-use products that create a deluge of pollution. It's to save my life and to avoid infections. It's the bad with the good.

We've tried our best to be creative with the items and to recycle what we can. I am asking my friends to be creative and encouraging syringe painting or drip painting, bottle cap collages, and basket-making. At least I don't feel as bad if the waste is being up-cycled or recycled.

My husband places treats for our gerbils in the empty Flolan boxes. They seek out the treats and chew the boxes into small pieces and use it for bedding. It's environmental enrichment and recycling at its finest.

Distractions

My friends are great. They pay attention. In fact, I've been reminded by those who don't live on Facebook (and are not close enough to check in on me) that I haven't posted since the 14th. I really should do a better job.

But, at times, I cannot focus and have no idea what to write about. Or, I'm just too tired to write... or think. The medicines and lack of oxygen to my brain have certainly made me less cerebral. I surprise myself at times. Some of it is just... well, so random. (I risk sounding like my daughter.) For example, I started watching the Ellen DeGeneres Show. Me watch TV? And it's not a documentary. I know! And, yesterday morning, I actually clicked an internet link to take me to Tiny Adorable Animals That Will Make You Squee. (Apparently squee is a word. Where have I been the last few years?) Then I was lured to click on another link: 32 Reasons Robert Downey Jr. Is The Most Perfect Man In The Universe. How could I not click that?

That Iron Man and me, we have something in common. We both need to be hooked up to devices that keep us alive. Tony Stark, the Iron Man character played by Robert Downey Jr., was hooked up to an electromagnet in his chest that kept shrapnel that was in his body from an explosion from reaching his heart. He invented an implantable version that made him more mobile. (Comic book nerds are welcome to correct me on any of the technical details.) In some ways, it's like the Hickman catheter implanted in my chest. But, in shape and style, it reminds me of the pendant-style oxymizer that is used to maximize oxygen concentration. I think I could have a terrific Halloween costume in the works. I'm just not sure an oxygen tank would fit in the Iron Man suit. Perhaps Stark Industries could come up with something. Hey Tony, can you work on that?

But I realize that even though Robert Downey Jr. is certainly a worthy distraction, an update is overdue. After returning from Cleveland we tried titrating up on the Flolan again. I didn't do well... again. I felt sick and agitated. My oxygen level was dropping more frequently and recovery time was longer. So, last Thursday I came back down to the same amount of nanograms I left the hospital on in January. Needless to say, there were a couple weeks in there that seemed more rough than usual.

Also, I'm getting better about being open to accepting help and allowing my life to be more transparent. I can no longer hide behind this nasal cannula or my super hero persona.

Homeschooling

A few people have asked me how we are handling the homeschooling and if it has been stressful on me.

In a typical month we school Monday through Thursday, and occasionally on Friday. The majority of schoolwork is completed by lunch or early afternoon each day. At times we have field trips or special projects that may cause us to rearrange our schedule, forcing us to work in the afternoon and/or catching up on a different day. We've always used a computer program for math. But, since my diagnosis, we've been trying some additional online curriculum. This frees up some of my time because the online program does the preparing for me. It's already set up and ready to go when my daughter gets on the computer in the morning. Through the summer we have continued to school but with a much lighter load--approximately two mornings a week. We don't take time off for spring break. Nor do we take too much time off around the holidays. This enables us to keep ahead and take off time when we need it throughout the year.

Once a month we have Girl Scouts, American Girls, geography; and at times, other classes and activities done as a group with other homeschoolers. Our Girl Scout troop is very active and always doing fun activities that are helping the girls develop interests and help their community. The American Girl group is a chance for the girls to share their love of reading and American Girls. The group coordinates crafts and activities alongside the books the girls are reading and we use the books as a springboard for additional history studies. Since starting the group, we've gone from the 1700s to the 1860s. The geography class meets once a month to give the students a chance to give a presentation on what they've learned about a particular country. Each month they are assigned a new country and they can pick what they want to focus on. It can be the clothing, politics, food, a particular animal, etc. They prepare their report and then show up ready to present what they learned--geography and public speaking rolled into one. Also this year, we've done some science and Ohio history with another homeschooling family, sharing talents and supplies.

Stress? Some days can be frustrating. How many times do I have to explain the order of long division? But, really, what would I rather be doing? Last week was filled with math and grammar and US map skills. And, we had geography. We studied Spain and my daughter wrote an opinion piece about bull-fighting. I watched her stand in front of a group of people and confidently deliver her report. When we returned home we made milkshakes and relaxed. Sick or not, I don't want to miss a second of her childhood. We do things together. We create. We learn. If this were my last day, this is what I'd want to be doing.