A new record

I keep telling myself I need to write but I haven't been inspired. With the chaos around the world and the foul mood of the country, to loss more personal, there seems to be a heaviness to my words and my fingers. October has never been the best of months for me anyway. Crummy October turned over into crummy November and I ended up in the emergency room on Sunday. I made it almost four months without a visit, so now I have a new record to beat.

After getting the injectable triptans my days improved tremendously. Unfortunately I still have to medicate daily for the migraines and I am still limited. But, at least I have that option and for that I am thankful. I know that some of my migraines are rebound headaches due to the medications, but if I don't take the medication I get so very ill that I end up in the hospital in severe pain, vomiting and dehydrated, unable to take my anti-rejection medication. It is certainly a viscous cycle.

My latest trip to Cleveland Clinic was relatively simple. It included bloodwork, x-rays, spirometry, and appointments with the coordinator and doctor. And, I had to get the flu shot. As I mentioned, I had been feeling pretty rough prior to my trip so I was a little worried. Even though I have been coming up with relatively sufficient spirometry readings on my machine at home, my headaches have been worse and I have been more fatigued and experiencing more pain. Despite all of this, my spirometry readings at the clinic were excellent. (Those glorious lungs!) I suppose the change of the seasons, allergies, and the migraines are probably affecting me.

So now my plan is to continue with my goal of keeping my immuno-compromised self as healthy as possible. And as long as all goes well enough I won't have to drive that turnpike to Cleveland until spring.

Eighteen Months

Eighteen months.

Eighteen. I just caught myself humming the Alice Cooper song. I got distracted.

I've been distracted a lot the last few months but over all, I've been relatively well enough. There seems to be transplant patients who do better than I do, who come out of the hospital without any issues what-so-ever, feel great, and their blood-work and kidney and liver functions are wonderful. Then, there are transplant patients who are constantly ill and always in the hospital with infections, breathing issues, fungus or bacteria growing in their lungs, low white blood counts, and/or low kidney functions. I have discovered it's not unusual for some lung transplant patients to need kidney transplants some time after their lung transplant because the medications can destroy the kidneys. Also, the medications transplant patients take can destroy bone and weaken muscle. Some patients have problems with osteoporosis. And not life-threatening, but certainly inconvenient, are the other usual side effects of the medicine, like tremors and forgetfulness.

Anyway, I seem to be somewhere in the middle. Nothing majorly wrong, thankfully, but enough to limit me. I've adjusted my days and weeks accordingly. It does frustrate me but I think I'm getting somewhat used to it. Perhaps I'm dealing with it more efficiently. Or at least I am trying. Transplant life is different. But it's my life now and I don't complain.

My latest trip to Cleveland revealed that my pulmonary function is wonderful. My meningioma (brain tumor) has not grown. Good! We are still working on controlling the migraines. I have pretty much run the gamut of migraine medications so my doctor has switched up some of my other medications to see if we can have any success that way. I cannot take some migraine medications because they will interact with what I'm already taking, or they will be too hard on my kidneys (which are not functioning all too well due to the harsh medications I am taking). I was also allergic to a migraine medication I tried recently, adding to the already limited list of options. I also completed my third round of Botox injections into my head and neck and my neurologist raised the dosage on one of the preventatives I am on.

At this point we will see where this takes me. I am having blood-work done weekly until my levels stabilize. And, I am focused on reducing my migraine triggers and trying my best to stay out of the ER. I also ordered new prescription glasses that have rose-colored lenses. A rose tint is supposed to help reduce light sensitivity, which many migraine sufferers have. Maybe in a few weeks I'll be humming a John Conlee tune. I'll let you know.

Something in my head...

Let me begin by saying I am not complaining. Because like I say, things can always be worse. But I do often shake my head in disbelief. Can the universe just give me a break?

The MRI of my head revealed a small mass. So off to Cleveland I went so doctors could get a better look. Thankfully it is not cancer. It is a meningioma, about the size of a marble, and is in my frontal lobe. The risks from surgery are greater than leaving it there, so for now it will be watched. When it becomes more problematic it can possibly be removed, more than likely destroyed by radiation. 

Quite possibly it is not the cause of my migraines but could be causing some of the other issues, like the forgetfulness and memory loss, which I've been blaming on the surgery and medications. Of course any or all of it could possibly be a combination of the two. 

Once again, no one knows the cause of the meningioma. There's speculation meningiomas are the result of exposure to radiation, hormones, etc. I take a serious amount of medicines, some of which increase my risk of many things, especially cancer. The doctors don't have answers. I've given up guessing. It's not worth my time. I'm already living on borrowed time in a body that only runs on 1/16th of the energy it used to, with recycled lungs, in a polluted world that threatens my suppressed immune system. I'm doing the best I can. And that's all I can do. I knew what I was getting into, agreeing to be a transplant patient. It was either taking on all the risks or dying.

And while I have this thing in my head, my lungs are working wonderfully. My numbers have increased and my walking distance has improved. Migraines still land me in the hospital at least once a month with vomiting and dehydration. I did round two of the Botox injections in my head and neck and it is supposed to help decrease my pain and need for triptans. If things do not improve as expected we plan to experiment with some different migraines medications. I'm still hopeful we will see some improvement yet.

So, if I continue to mix up words or forget to call you back, forgive me. I have a lot on my mind. (Apparently, literately.) I spend a lot of time just managing my health issues. I spend a lot of time at appointments, getting blood draws, doing paper work, and making phone calls. I can only manage so much in a day before I feel ill. I need reminders. I need time. But, Spring is here and once again the world awakens full of beauty after its long winter slumber. This will be my second summer with my donor lungs and I expect it to be better than the last.

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.