Five months

That injection I mentioned last month? I've been having to do them weekly. And my body does not like them at all. The first one put me in the ER. It triggered one of the worst migraines I've ever had. I was crying, writhing in pain, and begging for relief. Of course it came with nauseousness, vomiting, vomiting, and more vomiting. Did I mention the vomiting? I tried to self medicate but the migraine and vomiting got worse and worse until I could do no more for myself. Again, I was hydrated and medicated at the hospital and sent home.

A few days after that ER visit was one of my routine treks to Cleveland. I had the usual tests--labwork, x-rays, spirometry--and doctor visits. I also had a Bravo prob inserted in my esophagus since the Ph probe testing failed at the last visit. I had had a migraine all day and after the sedation wore off it felt like I woke up with a jolt. A jolt from the gut to be exact. I was in such pain and was vomiting. (Nothing new there, eh?) They rushed me to the ER at the clinic where they treated me with what they called a migraine cocktail. That was the day I had my first ambulance ride ever. Ironic, isn't it? Even though I was at the Clinic, the place is so huge that taking the ambulance was faster.

So that brings us to five months post transplant. Five months! I hate to complain knowing full well what the alternative is. But truly, it has not been the easiest thing. The road in these woods is not the smoothest. In fact, it feels more like an uneven goat path than a road. In the four months I have been home I've had three return trips to the clinic, two of which included bronchoscopies, an endoscopy (the Bravo probe results were fine), and a trip to the ER; two additional trips to the ER at a local hospital; routine bloodwork about every week; a follow-up with our family practitioner; several injections; and a visit to the gynecologist, eye doctor, and dentist (like any compliant patient should do post-transplant). Considering all of that and the time it takes to organize my pill box (and the orders), and filling out my daily health log that consists of vitals--blood pressure, heart rate, weight, temperature--and spirometry readings, I spend a lot of time trying to keep these new lungs safe. And every poke, prod, and pain reminds me that I'm living on borrowed time. I admit... I get weary. I'm always plagued with side effects from the medicines and I deal with the anxiety that comes with living a life of impermanence.

I recently completed my letter for the donor family and will take it with me to my next appointment. (It will go through a third-party system until both parties have agreed upon open communication.) It took me several tries to finish it. This is actually my third version, totally revised and edited down to ten sentences. In ten sentences I expressed my gratitude for their gift. And, I clearly spelled out what I hope for... for them to contact me. Initially I wrote long letters. And then I read them and re-read them. I moved paragraphs around and changed words. I deleted stuff and added stuff and cried and re-read and started anew. How do I express a lifetime worth of thanks? In ten sentences. Perhaps less is truly more because honestly, I cannot find a word more meaningful than thanks when I have received such a remarkable gift.

Five months. The surprises, both good... and not so good, continue. I'll check in here once I get a little further down the road. Meanwhile I will continue to do my best and will keep following the goat...

Four months

Here I am... now over four months post surgery. Post transplant life has not been without it's little bumps. But, in the scheme of things, everything is manageable so far.

Since I last checked in I had another episode that we are thinking may be my body's new reaction to migraines. Again, it started off with a headache and it worsened through the day. Nausea hit. Then vomiting. I could not keep food or water down, and I could not keep my medicines down. This time I couldn't recover on my own and ended up in the emergency room of a local hospital. They started fluid, pain killers, and anti-nausea medications. A few hours later I was sent home to sleep and followed up with my family doctor the next day. It was disappointing and awful, but I recovered in a few days. Now I have a couple drugs that I can take at the onset of migraines and nausea, in hopes to stay out of the emergency room in the future.

Routine blood work this week indicated my white blood cells are too close to being dangerously low. I'm supposed to get an injection soon that will hopefully, if it works like it should, stimulate my bone marrow into increasing my white blood count. But, I cannot get it until after the holiday weekend because of insurance snafus. (It's always the same thing: specialty drug, prior authorization as being medically necessary, etc.) My doctors have suggested I stay home and limit my exposure to others until I get the injection. So... here I am.

I won't dwell on all of this though. Rather, I'd like to highlight that I have been driving again. I've enjoyed outings with friends and families. I've gone shopping. I've been able to exercise with few limitations. I even went on a short road trip with my daughter and one of my closest friends to visit my father and several other friends along the way. We stopped in Holland, Michigan, to see the tulips in bloom (even though it was raining the whole time) and visited an alligator sanctuary near Kalamazoo. (Don't worry, I wear a mask and I opted out of petting or holding the alligator.) We went to a couple of museums and I ate about a half pound of fudge. I also walked up a relatively significant hill to a lookout site to view Lake Michigan. It was quite a trek for me but probably not significant enough to burn off a half pound of fudge. Oh well, I need a some fat to pinch for all those darn shots and injections anyway. It was the first time in a long time I had been away from home for an extended amount of time without it being a clinic visit. I felt free again.

Even though it may not seem like a lot to some, I still do quite a bit each day. I still have my limitations due to what I lost being sick, the surgery, and the medications, but I'm okay with that. Overall, everything can feel overwhelming at times, and I do have my down days, but it's nice to have the luxury of doing too much again. Yes, here I am. Over four months later... alive and very thankful.

Three months

I have passed my three-month anniversary of receiving the gift of life. It feels wonderful to no longer be dragging around oxygen and an IV pump. No tubes. No tanks. To actually hop in the shower and not be exhausted and out of breath from simply washing my hair, is a joy. It's freeing to drive again. To get dressed. To bake. To shop.

To breathe. To live.

Quotes about breathing and life are everywhere. I see them on cards, bags, mugs and kitschy decor. "Keep Calm and Breathe." "Life is not measured by the breaths you take, but moments that take your breath away." Somewhere along the way... when the busy me was forced to slow down, when I experienced being unable to breathe and brushed too close to death's door, these quotes made me angry. Darn it, if I could breathe, I could stay calm. And really? The moments that took my breath away were often harrowing! Yes, somewhere along the way, I became protective over such a precious word: breathe.

My appointments at the clinic last week included labs and several tests, one of which was not completed due to complications. So, I must go back soon and have a different procedure. I am not thrilled but all of it--the tests, the bloodwork, the medications, the side effects--is intertwined with transplant. As I mentioned before, I'll never be out of the woods. I was reminded of that the week before my clinic visit.

In preparation for the tests I took myself off of one of the stomach medications, as suggested by the doctor. By mid day I had a slight headache but I did not think much about it because I get headaches on and off relatively frequently. That night, a little after 1:00 a.m., I woke up with a horrible migraine, violent tremors, nausea, and vomiting. I called Cleveland Clinic, talked with the pulmonary fellow on call, and I was told to call my coordinator at 8 a.m. I took my morning pill dose at the suggestion of my coordinator and promptly vomited. It was distressing to see the expensive pills I take to stay alive floating in the toilet bowl water.

Later in the day I was finally able to keep down a bit of food. And, my coordinator suggested skipping my pills for the rest of the days and just restarting everything, including the stomach medication, on schedule the next morning. Thankfully we didn't have to take more drastic measures and the following day I found myself well enough, but tired, sore, weak and emotional.

My coordinator seemed to think the medication levels were off--that I absorbed too much of the anti-rejection medication. My doctor says we won't know since we didn't do bloodwork. And, he's the type of guy to not make assumptions. I like that about him. An overdose of medication? A really bad migraine? A stomach bug? We just don't know. I'm still alive. And breathing. I got through it. So, that's what matters.

The bronchoscopy showed no rejection. When I got the news I was so relieved, as you can probably imagine. I still get pretty anxious waiting for results. Bloodwork revealed a continued strain on the kidneys from the medications. The prednisone was lowered and the diuretics are to be used only when needed in hopes it will take some of the stress off of the kidneys. So, at this point, I'm just trying to stay calm and breathe... since I can.

Next of Kin Program

Will first responders know who to contact if you had an emergency? Several hours may pass before loved ones are contacted if you have been injured and are unable to speak. Without contact information, it takes, on average, six hours before law enforcement can locate next of kin.

Next of Kin was initiated by two women who lost their sons in car accidents. Because emergency workers did not have their contact information, they were not notified until many hours after the accidents. Not wanting this to happen to others, they urged the passage of legislation that would give first responders access to contact information. A bill was passed in 2008 allowing anyone with a driver's license, learner's permit, or state-issued ID to submit two emergency contacts through the Ohio BMV (Bureau of Motor Vehicles).

If you have not done so already, I urge you to take advantage of what Next of Kin offers and provide your contact information today.

Dear Donor

Dear Donor, Thank you for the opportunity to experience another Spring. Today I baked cupcakes, just because. And walked in my neighborhood. Walked! Breathed in the crisp air. Birds were singing their springtime tunes. Little silky catkins dotted the pussywillow's branches and the green tips of daffodils peeked through the dark layer of winter. The world awakens, anew, as do I. Forever grateful for your gift, The Recipient

Two months and counting...

Last week I intended to give a two month update. I wrote a blog post later in the week, mentioning that I started my two-month anniversary with a blood draw at a local lab and then spent the rest of the day in bed with a terrible migraine. As I read over it, I thought it sounded like I was complaining. Anyway, who cares if I left the lab with with matching needle marks on each arm? Who cares the UPS drop off nearby doesn't open until 8:30 and that due to my driving restrictions, the tubes I must mail to Cleveland Clinic didn't make it out until lunchtime? Does it really matter in the scheme of things?

As the week went on I felt better. I still have an annoying dry cough but there is nothing to make me concerned otherwise. I am breathing well and completing every day tasks. The body aches and the side effects from the medications are tolerable. As I resisted publishing my blog post, I learned of two new deaths among those on my support group. And, one of my best friends is in the hospital again, with health issues so few can imagine. The blood draws? Over it. The migraine? It dissipated. And, I now know not to show up at the UPS at 8 a.m.

And, what about that update I promised? The coordinator called later in the week and said the bloodwork is fine and there are no changes at this time. I can continue complaining about the small stuff if I wish.

New Journey

I had my six-week follow-up and another bronchoscopy this week. No rejection. How lucky I feel. I'm still sore from surgery and I'm still weak but I get stronger every day. Despite that and the side effects from all the medications, I can do more now than I did this time last year.

I'm still trying to wrap my brain around everything that has happened and is happening to me--the illness, the surgery (and the world I lived  in while sedated and on narcotics in the ICU), the new lungs, my donor, my new life. Honestly, I feel a bit lost. I'm finding my way back to a world I was part of. But everything is different--my life, things around me, what I can and cannot do, my friends and family... and my perspective. Another paradigm shift. This time, so great that I'm overstimulated and overwhelmed.

Since returning home I've spent most afternoons on the phone with mail-order and specialty pharmacies, doctors, insurance companies, etc. We had to switch insurance plans (long story). It's nothing short of a headache trying to to get all the medicines I need for survival. When I'm not on the phone, I take pills. I realize it will get easier and things will resolve. It already feels wonderful--producing the oxygen my body needs--even though I haven't done anything overly significant lately. Oh, but I suppose I have. I survived the greatest battle I've ever faced in my life. And, my friends and family, I could not have done it without your help and to my donor and his family. 

I'll never be out of the woods. I'll always have restrictions of some sort. I'll always be on medicines. My immune system will always be compromised. I'll always have the burden of medical costs. I'll always be tethered to Cleveland Clinic. But that's okay. I've accepted that. So please, my friends, have patience with me as I start this new journey.