Gamma Knife Radiation

I am now over two months out from the Gamma Knife radiation. I can now rate it up there with the some of the top hated procedures. I guess I cannot complain about heart catherizations without sedation anymore after experiencing that. The frame was absolutely awful. But, I'm a big baby when it comes to people messing with my head anyway. The pressure of the frame was extremely painful, to the point where it felt as though my skull would crack when they were screwing the pins into it. The process includes only a tad bit of sedation so I was fully aware and alert. They injected lidocaine into the pin sites and then they screwed the four pins of the frame, two on the forehead and two on the back of the head, through the skin and tissue all the way to the skull. I was hoping they'd put me in some sort of twilight sedation but that was not the case. I was extremely agitated and upset.

By the time my CT scan was done and I had waited around for some time, the lidocaine had worn off and the pin sites were sore. They offered no pain killers and I had a migraine. The actual Gamma Knife procedure was 80 minutes long and I had to lie flat with my head still in the Gamma Knife machine. The weight of my head was basically on the two pin sites and by then they were sore and my head was throbbing. I had taken my migraine medication but I had a frame squeezing my skull and four pins screwed through my head and I was trying to tolerate lying 80 minutes on two of them poking me directly through the back of my head.

Surprisingly removing the frame hurt and caused a strange intense headache that lasted about an hour after it was removed. I still had a migraine but suffered from the pain of the frame too. Afterwards, the nurse tended to the pin sites, which were oozing a bit and swollen.

I was able to leave after I was settled and bandaged up. I felt nauseated at first, especially with the migraine, but was able to eat a little later in the day. For the first couple of days I slept a lot. My pin sites remained swollen for several days and were sore for more than a week. I had an area on the left side of my scalp that remained numb for a couple of weeks.

Now I wait until we do the follow up MRIs. That will let us know whether it was all worth the trouble. Hopefully the Gamma Knife radiation stopped the growth of the tumor or killed it completely.

List

Somehow when I returned from Cleveland Clinic I had a whole list of things...
1. The meningioma has grown. It is now time to take action before it presses into the optic nerve and causes issues. Because of the area it is in, they want to do Gamma Knife Radiation. I will be meeting with the neurosurgeon soon.
2. At a little over two years out I am suffering from bone loss due to the transplant drugs. (No, you are not getting taller... I am shrinking!) They have added a weekly oral bone drug to my regimen. Hopefully this helps so I can avoid shots or infusions.
3.We have switched my main anti-rejection drug from Tacrolimus to Cyclosporine. Cyclosporine was considered the gold standard, the original anti-rejection medicine that was used for many years before Tacrolimus became available. Unfortunately it is nasty. Each capsule comes in a foil pouch, not to be opened until use. I realized when I first took it why it comes in a foil pouch. It smells like skunk. That's why it's in a nice little foil pouch. It's like a little skunk bomb when I open it, and I have to open several foil pouches twice a day. How pleasant. Anyway, the switch is happening in hopes it will help with the migraines. Anything to help keep me out of the emergency room. I am still ending up there about once a month. Anything is worth trying so I am glad the transplant team is finally playing around with the big meds a bit.
4. I have another case of tendinitis. Different leg, different spot. Yes, it hurts. But, I don't know why. It just happened. Didn't do anything to it. But, it's not too bad. I need to limit walking, especially downhill, and I have some special stretches for it. It is slowly getting better.
5. Cardiac function looks fine. Even though my heart rate is still high (and will probably always be) due to the heart failure in the past, considering everything, hey... that's okay!
6. Spirometry readings are good. Lung function is wonderful. Thank you to my donor. I wouldn't be alive without you. And despite everything, I am not complaining.

Celebrating two years

My two-year lungiversary went by with little fanfare, much to my dismay. The only ones to acknowledge it were those within my household. But, that is because I have declared it an official holiday, penciling it on the calendar and announcing it days before. For me it is a second birthday. I'm sure it's a feeling that only fellow transplantees can understand. Silly I suppose. But when cards and greetings didn't roll in, I felt a bit... a bit, well, forgotten. Then I had remind myself that almost dying and getting a transplant was a battle that was how long ago? One year? Great. Two years? Come on. Life goes on. No one wants to have to remember to celebrate ME twice a year. Except for ME.

Thankfully, I had less anxiety this year as I reached the date. I think this is because I now have a relationship with my donor's mother. At this time last year, it bothered me greatly that I didn't have anyone to focus that energy on. I had reached out to the family with a letter through LifeBanc and told them how much I thought of them each and every day, and how much their gift meant to me and my family. I wanted them to know that every single breath I take is because they said yes to organ donation. But, by the time I had my first anniversary I had not heard back.

Eventually, I did hear back and since then, we have exchanged several letters. This communication means so much to me. Even though there are no words powerful enough to express the thanks I feel for this gift, at least his mom knows that this wonderful gift is allowing me to spend more time with my family, and is allowing me to selfishly celebrate two birthdays.

Health-wise I am holding in there. I'm working on getting that room in the ER named after me. Yep, I'm back to my old record of going in once a month with the usual--migraine, vomiting, and dehydration. I don't know why it's happening and wish it would stop. Also, I recently found out the pain in my left ankle I have been walking around with for over two months is tendentious. I did not do anything to it... supposedly the medicines can cause it. I guess I have been getting so used to walking around in pain and not realizing what is normal, or rather the new normal. Basically any time I have had aches and pains the doctors usually tell me the medicines can cause it and then they shrug it off. So with this, I just kept shrugging it off until I couldn't take it any longer. But surprise, now I am hobbling around on a walking boot. I'll see the podiatrist again in a couple of weeks to see what my next step is.

Certainly not the fanfare I was looking for, but I hobbled right along and continued my celebrations throughout the weekend. I look forward to celebrating my real birthday soon enough... and perhaps I won't be hobbling around for that one.

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...