One year!

Happy one year to me! I am officially past my one year anniversary of my lung transplant. In the transplant world this is a huge milestone. In a more recent article of the Journal of Heart and Lung Transplantation it states that "patients who live past the first year... have a sixty-three percent likelihood of being alive ten years post... and a twenty-seven percent chance of being alive twenty years post." I like that statistic more than the one I normally see with the median extended life of  6.5 years.

I got emotional. Mostly because I was thinking of my donor's family and his death. I know some people will say to not let this bother me, but that is easier said than done. His life is important to me. The anniversary of his death, such a tragedy, brought hope into our lives. The end of his life brought continuation to mine. (And perhaps to several others.) I will always honor his memory as part of him is now part of me for the rest of my life.

I will be going back to Cleveland in a few days for my one-year check up, complete with biopsies of the lungs to check for rejection. We are hoping for good results.

I'm still struggling with the usual side effects. I guess it's no longer news and I feel as though I should stop reporting them here with risk of boring you. I've been in the ER at least once a month and that is getting really old. The Botox injections in my head and neck have helped decrease the frequency of the migraines somewhat, but when I get them, they are still bad. The nausea and vomiting have not decreased. 

I was also caught off guard last month by a bout of food poisoning. It reminded me how fragile I am and how careful I need to be. Generally I feel less anxious about my limitations and transplant life, but still have my moments when I am reminded of how much I miss how things used to be before I was sick. I can't dwell on those things. I've had to make changes, and I continue to move ahead or else grief consumes me.

Onward. A new year awaits...

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.