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.