Eight months

The daily dose of pills that keeps Frankenstein's monster alive.

Revised 10/8/14. It has been over eight months now. Eight months! I suppose I may never shake the feeling of waking up surprised and pleased every day.

The migraine preventative has kicked in and I am having consecutive days of no migraines. This is nice. However, I'm still doing the Neupogen injections weekly for the low white blood cell count. They still cause the usual muscle aches and bone pain. I have no other option at this point. But, at least I am staying out of the ER, right?

When I originally wrote this I had finally mentioned my battle with increased menses and breakthrough bleeding. Originally I felt it was not that important to share. But it did come to a point where it needed to be addressed because I was extremely anemic despite being on iron supplements. After a battery of tests to rule out several things, we decided to go through with endometrial ablation. This procedure took place ast week and should help with the anemia.

If you happened to read my blog post before my revision you may remember my little rant about pulmonary rehab. And, you may be surprised to learn that I am continuing my rehab for another month. Something happened. A good thing. And continuing will be good for me. I have built up quite a bit of endurance since I first started. I'm still limited, especially since I still deal with quite a bit of pain and have my limitations. But, I am still doing pretty well considering.

They recently rearranged the exercise equipment. Since I can no longer see the television from the recumbant bike I started taking in a sizeable memoir to read. It has been a long time since I have tried to focus on actual book reading. Since the surgery, I have found it hard to focus, often having to read slower than I used to and reread things. I have noticed memory loss since the surgery, and perhaps due to the medication I now take, I often misplace words or forget words. I find myself consulting the dictiononary and/or asking my daughter and husband how to spell words I know I used to know how to spell. It is frustrating. It was actually one of those hurdles I was hesitant to tackle. The books seem so daunting now. I used to love a thick non-fiction book with several pages of footnotes. I am certain that stupid lung disease killed off some brain cells while it was busy killing my lungs...

Anyway, rehab has helped me build up some muscle strength but my body takes a beating from that and the Neupogen. Some days I can barely get around. I hear that chronic pain may always be somewhat of a battle, being that I am on a lot of medications that cause bone loss and muscle pain, etc. I will always have to work harder at everything. It comes with being a transplant patient. I will always have pills to take. I will always be immuno-compromised. I will never be out of the woods.

Speaking of the woods... they are taking on beautiful hues of scarlet, crimson, and umber. It will not be long before winter will be here. This summer really happened. And I was here! And what a different summer it was. A new summer--the first with my new lungs. Even though there was a lot I had to give up and much I had to do differently, I always say it is better than the alternative.

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...

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.

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.

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.