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.