Six months and beyond

It is actually closer to the seventh month mark but we were checking out some other issues and that set us a little further behind... or ahead, depending on how you look at it. I went to Cleveland with a lot of anxiety since quite honestly, I had not been feeling all that well the last couple of months. But, I have good news. No rejection.

I saw a hematologist about the blood issues and for now I am on a wait and see what happens basis. They may take me off the Valcyte at the one year mark but for now they won't chance that. So, I must continue the Neupogen injections. So, until then, I will have to suffer through the side effects and I will just have to deal with them the best I can. They made a few adjustments to my medicines and will continue to do so as needed. The whole thing is a delicate balance. I'm already at half of the suggested dose of Valcyte. My donor was positive for CMV, while I was negative. Take the Valcyte away and I'm at risk for infection. Being that I'm immuno-suppressed, getting any infection is bad. Of course, it can be treated... but, my body is not very strong right now. It all makes me nervous.

The migraine treatment is not going as well as I had hoped. Thankfully I am staying out of the ER. But, I haven't had any luck weaning off the triptans. The preventative has not kicked in yet even though I am now at the full dose. I'm still waiting for another miracle. The insurance company constantly fights me about the dosage of the triptans, so I would really like something to happen soon. I'm afraid that one of these days I may not have enough medication. I had a pharmacist tell me I may need to "white knuckle it through a few days." Obviously he has never had a migraine. Sure. Try vomiting for 24 hours straight and not be able to take your life-saving anti-rejection medications. Then talk to me about white knuckles.

I was on a mission this trip to Cleveland and with help from a couple of friends I was able to pull it off. Thankfully we didn't run into any problems with traffic or weather or have any extra long tests, procedures, or ER trips beyond some additional bloodwork. In all of my trips to Cleveland I had always been too sick and too hurried to see or do anything. I had never been anywhere other than to the clinic or the hotel. I knew about all the great places in Cleveland but my adventures included stepping out a few times to buy slippers at a department store and to the pharmacy to pick up prescriptions. But this time changed all that.

First thing on our to-do list: we went shopping. We picked up a bag of toys for the Cleveland Clinic Children's Hospital in memory of our dear friend who died last year. We also put together a a bag of snack items for families staying at the Ronald McDonald House in Cleveland. We delivered the items when I was finished with my appointments.

Then we visited the Rock and Roll Hall of Fame. We walked halls of memorabilia taking us through a timeline of history from the birth of rock through the present day. It was interesting seeing stage costumes, props, and instruments of the legends. I will have to admit that after comparing the 1980s heavy metal case, the music of our formative years, with all the other decades, I am surprised we turned out okay.

I lost more than two years of my life. I am still picking up the pieces. It is still harder for me to do normal things and it takes longer for me to do anything. I lost a lot of muscle strength while I was ill. I am doing pulmonary rehab and working on some strength training and cardio with supervision. But with the injections I still have a lot of joint and bone pain so I am limited. It is expected. I have weird side effects from the meds. I deal with tremors, some neuropathy, tingling, headaches, aches, moods. It is the new me. I cannot do what I used to do. I feel different. I have to be different obviously because of various things. It is okay. It is better than the alternative. It is not easy. But, I am okay with that.

This week was amazing. It was on a roller coaster of pain and emotion and sheer happiness. I was among the most sick, the healthiest, those in pain, and those who were happy. I was scared and delighted. I smiled, I cried, I laughed with old friends, and laughed with new friends. I was thankful. I came home to my family, with no rejection, again...

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.