Eleven months

I have been enjoying participating in the holidays this year even with all the limitations. I have been in the ER several times, have had several doctor appointments, and have been back to Cleveland since I last posted a thorough update.

The new migraine medication worked for one month and then quickly wore off. By the third month I was having migraines daily again. So, two weeks ago I was approved to try Botox. Treatment includes a series of thirty-one injections in the head and neck.

It is pretty disgusting. It is botulism. But, I am willing to try anything to help with these debilitating headaches that cause me great pain and vomiting and send me to the ER. The botulism allows the muscles to relax and prevents the nerves from communicating with those specific muscles, somehow reducing the amount of migraines.

Of course it is really early in the game but I have had fewer migraines and they are less intense. It eventually wears off, so my next treatment is supposed to be in March.

Some of the best news includes NO REJECTION! And, NO NEUPOGEN! My breathing capacity was down a bit and we don't know why. We won't worry too much for now. But everything else looked relatively fine. My doctor cut the Valcyte in half again and adjusted some of my other medications. This allowed my body to increase its white blood cells on its own. And, this meant, no nasty neupogen injections for the first time in months. Within about a week I stopped having the horrid bone pain. This is one I am overly excited about. What a huge, huge relief. Another crazy, horrible, debilitating side effect to check off the list!

Cutting the Valcyte down again is a risky move. This puts me at risk for CMV. My donor was positive, I am negative. This means I will catch CMV from my donor and will be treated for it. It is not IF I catch it at this point, but rather, WHEN I catch it. We will just deal with it when it happens. It is just part of post transplant life. It is what I accepted when I accepted these lungs. I am still having blood work done every two weeks and it is one of the tests they run so it will show up in the blood work if I don't exhibit symptoms.

The next time I check in it will be my one-year transplant anniversary. A year ago we were not sure if this day would come. But that all changed eleven months ago when I received the greatest gift--the gift of life. This year, while I celebrated my first Christmas with my new lungs, my donor's family celebrated their first holiday season without their loved one. I hope my donor's family finds peace in knowing their loved one provided so many people joy and happiness. Had they not said yes to organ donation I would not be here today. I have much to be grateful for.

Thankfulness

Thankfulness is being blessed with a donor, a family who said yes in the midst of their grief. Thankfulness was being under the care of skilled hands of great surgeons and doctors and nurses. Thankfulness is having the support of a wonderful family and friends and even complete strangers who reached out to offer help when I needed it most. Thankfulness is reaching milestones, like another birthday and another Mother's Day. Thankfulness is doing my own shopping and cooking again. To climb the stairs in my home. To drive. To walk. To visit friends. To do what I missed out on. To breathe. Thankfulness is having this opportunity to be here for another Thanksgiving and hope for many more. Love to all this holiday season. Remember what matters. Life is short. Lend a hand, mend fences, have fun, and don't sweat the small stuff.

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.

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.

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.

A New Hope

Five weeks ago, I received the call. Cleveland Clinic had lungs for me. A match... finally!

Five weeks ago I was wheeled into the surgical room. Lines were placed and anesthesia was administered. An incision was made down my chest and my sternum cut open to reveal my heart and lungs. I was kept alive on a bypass machine while my heart was stopped and my diseased lungs removed. My new lungs--a precious gift--took their place and I was patched back together, sternum wired shut, and drain tubes placed.

After the surgery my heart protested. It had worked hard keeping me alive, overcompensating for the lost lung function. I spent a week in ICU--over 168 hours--heavily sedated and spending most of it in a lost world of hallucinations with glimpses of the real world around me. (That's the equivalent of watching approximately 70 average feature-length movies.) During that time I was extubated, had problems, and re-intubated. The second time I was extubated I was able to experience breathing with my new lungs for the first time. Shortly after, my doctor removed the cannula from my nose. "You don't need this," he said.

Two weeks ago I had a bronchoscopy and the biopsies revealed no rejection. My donor's lungs are making oxygen for my body and doing a good job. My lower legs have returned to their normal color--they are no longer splotchy purple. I don't feel like I'm suffocating. I was out of control of everything for so long that I feel a little lost... like I am coming back from some other dimension, trying my best to figure out the world I missed.

I now sit, five weeks later, at my computer. At my desk. In my home. Breathing. No oxygen. No IV line in my chest. Despite all the pills and the side effects, it's worth it. The pain is relatively tolerable. I know many friends wish to hear more details. And, those should come with time. But for now...

I have a new hope.

A new year...

A year ago I received a diagnosis that changed just about everything in my life. A terminal illness that would take me down in a short time. My only hope--a lung transplant.

I'm still here. This is good. And, I'm still at home. Also good. A year ago I was in ICU and doctors were not sure how my body would react on the strong IV medication they were administering. Fortunately I did okay, and the medicine provided me several months to work my way through the testing needed for transplant.

I had some routine testing on Thursday at the clinic and saw my doctors. Testing revealed my breathing is worse, my oxygen saturation levels are lower, and my already failing heart is working harder. For the best recovery after surgery, I need to stay as strong and healthy as I can within my limitations. I also have to avoid sickness and infections of any sort because they could potentially make me lose my chance for surgery if lungs became available. There is no wiggle room. Any little thing could send me to the hospital and that is not where I want to be. At least not for those reasons.

I know many of you are standing by me, cheering me on. I totally appreciate it. I know it must get tiresome for some to keep making exceptions for me. I can tell some are getting tired of the wait and tired of me and I don't blame them. I'm tired of everything--the sickness, the exceptions, the waiting, the testing, and the difficulties. I feel like the last two years have been stolen from me. And in the last year, it seems more like I've just existed rather than lived. I'm on the sidelines... and it sucks.

I was ready to ring in the new year with new lungs. It didn't happen. But, I'm thinking 2014 is full of hope and potential. And, soon we will have a whole new reason to celebrate.