1:30AM and the morning person is up earlier than she'd like to be.
One of the protocols at my transplant center is if your temperature is 100 or above they must be called. As I looked at the thermometer yesterday in trepidation I knew what I had to do. The cough is wreaking havoc and the temperature is up, sinking feeling in the pit of my stomach I picked up the phone.
It's times like this I'm quickly reminded I am not a normal healthy person, something a chronically ill or physically disabled person longs to be with every fiber of their being. In day to day life, I can sometimes push it to the back of my memory, to be hidden far away from reality.
During the call I was given the choice of coming to the hospital or starting antibiotics again. With it being a 4 hr drive one way, I seriously did not feel well enough to drive and Larry was at work. I chose the antibiotics, though a hospital stay and giving this Pseudomonas a strong kick to the curb is appealing. So I waited all day, not that I felt like going anywhere, meds delivered, nurse accessed my port -here I go again.
With this happening more frequently I can't help but wonder if this is the start of "the long painful road home ". I vividly remember the first time I started that journey. Many times I said, " chronic rejection was leagues worse than my original disease. Not that I have chronic rejection again, but one bad lung can make life miserable at times. With PPH I was short of breath, now I can't stop this painful deep cough. I'm reminded of a scene in "The YaYa Sisterhood" where a line is " you made me think I was gonna cough up a lung " I was offended by it and they way they parodied those on oxygen, but it's the one line I seem to remember.
I still have to make that long drive on Monday, with an overnight bag just in case. (I haven't had to do that in 8 years!)
Fingers crossed, no admission.
Drat! I forgot to ask if I could take Tylenol!
Friday, April 26, 2013
Saturday, April 20, 2013
Blessed sleep
Remember I mentioned previously how refreshing a good nights sleep is? You wake up in the morning , stretch, and happily breathe in the start of a new day.
I've had one week without that dastardly cough waking me repeatedly during the night. The cough suppressants by the bed have been happily ignored! One week in almost 2 years ! Two pillows sit on the floor at night, when they used to join 2 friends under my head, forcing me to sleep upright, if I wanted to sleep at all.
Glancing at the clock and realizing you seriously slept is a beautiful thing.
Well, the pillows have gotten lonely and had clandestine meeting s with those cough drops. They will soon be back in their rightful places. My cough returned with a vengeance this morning! 5AM I bolted straight up in bed (vertigo hit too) coughing to the point of choking. Like an excited friend returning from the vacation of a lifetime, it has not stopped speaking since .
This does give me serious thought. Were those IV antibiotics worth the cost ? Was it worth me taking a nose dive into that Black Hole known as the coverage gap? My checkbook loudly shouts NO! But my throat, chest and mind are nodding a vigorous Oh Hell Yeah!
7 days of blissful sleep is well.......heavenly.
I knew 22 years ago this could happen, but would you trade that many years of life on a maybe? Me neither. Being chronically ill means your health is front and center a full-time job. We can take breaks & mini vacations, but will always return to our job.
Yawning, I lean back in my recliner and hope to get a 20 minute power nap - game on me vs cough.
I've had one week without that dastardly cough waking me repeatedly during the night. The cough suppressants by the bed have been happily ignored! One week in almost 2 years ! Two pillows sit on the floor at night, when they used to join 2 friends under my head, forcing me to sleep upright, if I wanted to sleep at all.
Glancing at the clock and realizing you seriously slept is a beautiful thing.
Well, the pillows have gotten lonely and had clandestine meeting s with those cough drops. They will soon be back in their rightful places. My cough returned with a vengeance this morning! 5AM I bolted straight up in bed (vertigo hit too) coughing to the point of choking. Like an excited friend returning from the vacation of a lifetime, it has not stopped speaking since .
This does give me serious thought. Were those IV antibiotics worth the cost ? Was it worth me taking a nose dive into that Black Hole known as the coverage gap? My checkbook loudly shouts NO! But my throat, chest and mind are nodding a vigorous Oh Hell Yeah!
7 days of blissful sleep is well.......heavenly.
I knew 22 years ago this could happen, but would you trade that many years of life on a maybe? Me neither. Being chronically ill means your health is front and center a full-time job. We can take breaks & mini vacations, but will always return to our job.
Yawning, I lean back in my recliner and hope to get a 20 minute power nap - game on me vs cough.
Tuesday, April 16, 2013
Journey Part One
The exercise has been going well. Sunday I opted for walking around the Sharks Tooth Festival instead of the treadmill. Granted the cinnamon glazed, strawberry topped funnel cake did nothing for my cause :) But was it ever good !
I'm also noticing a slight increase in my energy level too which is a Blessing. Oh! and I finally tackled the multi-station gym ! Not much, just 2 sets of upper body weights, and I came to another realization. I am weak. The time for getting serious has long been waiting.
I know the strength training is crucial. Especially since my transplant cocktail includes the dreaded Prednisone! (Holds fingers in the shape of a cross and gives a hiss) Prednisone has many medical uses, helping prevent organ rejection is a great reason to keep it around. The side effects of long term use are no walk in the park either though. It loves to slowly chip away at bones and muscle, so strength training is important. My doctor once said "one week missed exercising for me was similar to a healthy person missing 2 months " !! *groans & hangs head* I have a lot of catching up to do.
I still firmly believe that since Prednisone has been around since the dawn of time they could've made it taste better! Have you ever had that tiny pill stick to your tongue? Or worse, the roof of your mouth? OMG! Nothing gets rid of that taste!
Since my IV stopped Saturday my cough is slowly returning as I knew it would. My vicious circle of survival :) but now the vertigo has reared her wavy head too. This morning I sat on the bed as the room spun a few times and considered calling out "Auntie Em!" Toto!" I'll up my water intake and see if it helps. If not, at least I won't be dehydrated-but possibly feel like the Titanic. ;)
Errands today and orders to finish and water to drink, my day is planned. Hope yours is happy and productive too.
I'm also noticing a slight increase in my energy level too which is a Blessing. Oh! and I finally tackled the multi-station gym ! Not much, just 2 sets of upper body weights, and I came to another realization. I am weak. The time for getting serious has long been waiting.
I know the strength training is crucial. Especially since my transplant cocktail includes the dreaded Prednisone! (Holds fingers in the shape of a cross and gives a hiss) Prednisone has many medical uses, helping prevent organ rejection is a great reason to keep it around. The side effects of long term use are no walk in the park either though. It loves to slowly chip away at bones and muscle, so strength training is important. My doctor once said "one week missed exercising for me was similar to a healthy person missing 2 months " !! *groans & hangs head* I have a lot of catching up to do.
I still firmly believe that since Prednisone has been around since the dawn of time they could've made it taste better! Have you ever had that tiny pill stick to your tongue? Or worse, the roof of your mouth? OMG! Nothing gets rid of that taste!
Since my IV stopped Saturday my cough is slowly returning as I knew it would. My vicious circle of survival :) but now the vertigo has reared her wavy head too. This morning I sat on the bed as the room spun a few times and considered calling out "Auntie Em!" Toto!" I'll up my water intake and see if it helps. If not, at least I won't be dehydrated-but possibly feel like the Titanic. ;)
Errands today and orders to finish and water to drink, my day is planned. Hope yours is happy and productive too.
Sunday, April 14, 2013
A Slow Journey
As a kid I always heard you have to put one foot in front of the other before you can get anywhere. Meaning you must take that first step.
Having mentally psyched myself up all day Friday to hop on that fiery steed (treadmill) & ride into battle, I did just that after the evening walk with the boys. Dreading the plantar fasceitis pain in the morning I was determined to try again. Plus I was hoping to regain that blissful sleep I longed for from released endorphins.
Nook ready I began my walk. Was this only 2.5 mph? I was walking that post transplant. Wow! I realized my endurance and stamina had taken a seriously long vacation and left me to pick up the pieces. Armed with a good book, I walked 30 minutes. All the while reminding myself I used to hit 90 and reset the timer.
I jumped the first hurdle ! Now to continue! Day 2 I rode my stationary bike, which is like taking a spear to the knees, but I jumped that too ! I took my IV out yesterday so now I'm looking at the multi-station gym with squinty eyes hoping to scare it into submission.
It's taken a longtime to get here, so the climb out will be too. But, to keep honoring my donors and their families, it is a mental must for me.
Having mentally psyched myself up all day Friday to hop on that fiery steed (treadmill) & ride into battle, I did just that after the evening walk with the boys. Dreading the plantar fasceitis pain in the morning I was determined to try again. Plus I was hoping to regain that blissful sleep I longed for from released endorphins.
Nook ready I began my walk. Was this only 2.5 mph? I was walking that post transplant. Wow! I realized my endurance and stamina had taken a seriously long vacation and left me to pick up the pieces. Armed with a good book, I walked 30 minutes. All the while reminding myself I used to hit 90 and reset the timer.
I jumped the first hurdle ! Now to continue! Day 2 I rode my stationary bike, which is like taking a spear to the knees, but I jumped that too ! I took my IV out yesterday so now I'm looking at the multi-station gym with squinty eyes hoping to scare it into submission.
It's taken a longtime to get here, so the climb out will be too. But, to keep honoring my donors and their families, it is a mental must for me.
Tuesday, April 9, 2013
Finding Myself
I am once again sitting upright in my recliner (since 2AM) with the boys trying to yet again stop coughing. My lack of sleep does give me a bit of thinking time.
Looking back I seem to have left "me" somewhere. I can just see myself at a roadside rest stop patiently waiting for me to come to the rescue.
I always had such determination, where has it gone ? My health has always been my health#1priority, but now I'm just tired.
I realize it's a culmination of events, and finding a way to jump the hurdle. 2002 was my 2nd lung transplant, giving me Blessed freedom from oxygen. But I came home from the hospital knowing I would need a new kidney.
November 2004 I got the fistula placed in my upper right arm in case of dialysis (which was looming on the horizon. ). Taking 6 months to heal and "cure" put a dent in my exercise routine.
Just as it healed, May 2005 I got a new kidney!
My right abdomen groaned with each step.... no treadmill..
Many of my meds to protect my kidneys were now stopped, which created that heart disease rearing to be noticed. I got a pacemaker. No lifting, exercising, etc for awhile. Then came SVT ....and heart ablation. Again no exercise.
What followed through the years was a series of at home IV infusions for Pseudomonas in my right (old transplant) lung, ending with spending 9 months taking Levacquin 750 mg & Keflex 500 mg daily. Both causing insomnia to the point I thought I was dreaming I was awake !
2012 was a bad year. Picc line for more antibiotics, plus more Levacquin (wonder if I glow neon in the dark yet ). Then a port to make IV's easier. And just when I thought it was now MY time here comes Keratoacanthoma and 3 months wait to have it removed. That is healed and in the past-so guess what is visiting now?
Most of my days are spent in a routine.
1. drink a bottle of water fast and hug the porcelain throne hoping to bring all this gunk out of my right lung, so I don't cough continually all day long. And it's one of these gut wrenching coughs, causing teary eyes and abdonimal muscle cramps.
If I don't get it loose and away, it blocks my airways and at times making me gasp for air and choke. It doesn't help my biggest fear is suffocating. Not a good feeling to wake from a nice, peaceful REM sleep to gasping the rest of the night.
The loss of my lil Dibs has created another chasm to jump. My lil guy has been with me through it all, on my lap or laying next to me. 8 weeks and it feels like forever. I tear up just trying to type his name :(
So here I sit, close to 5AM now, thinking how to reclaim Me again..
My middle man cuddled up close (a first, making me smile), I take a sip of lukewarm coffee, 30 minutes and my morning IV will be ready to start. I 'll trudge to the counter, holding my left side-diverticulitis has chosen to pay me a visit, grab the syringes and IV and start my day.
Looking back I seem to have left "me" somewhere. I can just see myself at a roadside rest stop patiently waiting for me to come to the rescue.
I always had such determination, where has it gone ? My health has always been my health#1priority, but now I'm just tired.
I realize it's a culmination of events, and finding a way to jump the hurdle. 2002 was my 2nd lung transplant, giving me Blessed freedom from oxygen. But I came home from the hospital knowing I would need a new kidney.
November 2004 I got the fistula placed in my upper right arm in case of dialysis (which was looming on the horizon. ). Taking 6 months to heal and "cure" put a dent in my exercise routine.
Just as it healed, May 2005 I got a new kidney!
My right abdomen groaned with each step.... no treadmill..
Many of my meds to protect my kidneys were now stopped, which created that heart disease rearing to be noticed. I got a pacemaker. No lifting, exercising, etc for awhile. Then came SVT ....and heart ablation. Again no exercise.
What followed through the years was a series of at home IV infusions for Pseudomonas in my right (old transplant) lung, ending with spending 9 months taking Levacquin 750 mg & Keflex 500 mg daily. Both causing insomnia to the point I thought I was dreaming I was awake !
2012 was a bad year. Picc line for more antibiotics, plus more Levacquin (wonder if I glow neon in the dark yet ). Then a port to make IV's easier. And just when I thought it was now MY time here comes Keratoacanthoma and 3 months wait to have it removed. That is healed and in the past-so guess what is visiting now?
Most of my days are spent in a routine.
1. drink a bottle of water fast and hug the porcelain throne hoping to bring all this gunk out of my right lung, so I don't cough continually all day long. And it's one of these gut wrenching coughs, causing teary eyes and abdonimal muscle cramps.
If I don't get it loose and away, it blocks my airways and at times making me gasp for air and choke. It doesn't help my biggest fear is suffocating. Not a good feeling to wake from a nice, peaceful REM sleep to gasping the rest of the night.
The loss of my lil Dibs has created another chasm to jump. My lil guy has been with me through it all, on my lap or laying next to me. 8 weeks and it feels like forever. I tear up just trying to type his name :(
So here I sit, close to 5AM now, thinking how to reclaim Me again..
My middle man cuddled up close (a first, making me smile), I take a sip of lukewarm coffee, 30 minutes and my morning IV will be ready to start. I 'll trudge to the counter, holding my left side-diverticulitis has chosen to pay me a visit, grab the syringes and IV and start my day.
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