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.
Showing posts with label headaches. Show all posts
Showing posts with label headaches. Show all posts
Friday, April 29, 2016
Monday, January 25, 2016
Celebrating two years
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.
Saturday, November 21, 2015
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.
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.
Monday, August 3, 2015
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.
Saturday, December 27, 2014
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.
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.
Sunday, September 21, 2014
Eight months
 |
| The daily dose of pills that keeps Frankenstein's monster alive. |
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.
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.
Thursday, August 14, 2014
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...
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...
Subscribe to:
Posts (Atom)