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.
Sunday, April 14, 2013
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.
Thursday, March 7, 2013
Keratoacanthoma part 2
I finally got it removed and am stitched quite well.
Once I got in to see the Plastic Surgeon, he took one look and said "This has to come off now" Yeah no kidding?? By then, the only way I can describe it is a medium sized mushroom cap, only disgusting looking. I kept it covered so my skin was already red and raw from the adhesive for 3 months.
I did however get creative with ways to wear a bandage :)
Here is the end result of the surgery:
I had no idea a medium mushroom cap would create such a spectacle ! When I left after surgery I was taped from one shoulder to the other and half way up my neck ! Sure makes looking to the side difficult, I still am unable to look up for eye drops or mouthwash. I dreaded removing the outer bandage the next day- but so wanted a shower ! He said the skin will eventually stretch to accommodate.
He also mentioned having to pull skin down from my neck and up from my chest to close the incision. I believe it , especially when I try to move. A few of the sutures were removed this week, but the anchor sutures have to wait another 2 more. It has made putting on a shirt a new experience, as well as a shirt has to button down the front so the scar isn't irritated. I honestly don't want others to have to see it, but oh well.
I'm dreaming of the day when I can again sleep on my side (the back side gets sore) and not itch !
Moral to the story: If you have a whitehead appear mysteriously overnight- GET it checked out !!
Once I got in to see the Plastic Surgeon, he took one look and said "This has to come off now" Yeah no kidding?? By then, the only way I can describe it is a medium sized mushroom cap, only disgusting looking. I kept it covered so my skin was already red and raw from the adhesive for 3 months.
I did however get creative with ways to wear a bandage :)
I had no idea a medium mushroom cap would create such a spectacle ! When I left after surgery I was taped from one shoulder to the other and half way up my neck ! Sure makes looking to the side difficult, I still am unable to look up for eye drops or mouthwash. I dreaded removing the outer bandage the next day- but so wanted a shower ! He said the skin will eventually stretch to accommodate.
He also mentioned having to pull skin down from my neck and up from my chest to close the incision. I believe it , especially when I try to move. A few of the sutures were removed this week, but the anchor sutures have to wait another 2 more. It has made putting on a shirt a new experience, as well as a shirt has to button down the front so the scar isn't irritated. I honestly don't want others to have to see it, but oh well.
I'm dreaming of the day when I can again sleep on my side (the back side gets sore) and not itch !
Moral to the story: If you have a whitehead appear mysteriously overnight- GET it checked out !!
Saturday, January 19, 2013
Keratoacanthoma
What a long word to try an pronounce !
This is my latest diagnosis from the Dermatologist. A few months ago I had a small "whitehead" appear on the left side of my chest. Being just above where you'd place your hand to say the Pledge of Allegiance and very visible, I did what anyone would do. I popped it. It bled, and bled, and bled.
So it was covered with a band-aid for another few weeks. Yes, I did take it off and change it nightly.
While away for the Christmas holiday, as I was changing the bandage I looked in horror ! This small unnoticeable whitehead (not to me) was now the size of a nickel and it looked infected. ! With my medical history and not healing well this past year I began to worry- plus it itches like hell . I kept it covered and out of the sun, and quickly made an appointment to see the Dermatologist when I got home.
My worst fears were realized. It was not infected, and she proceeded to rattle off that name. She removed the top for biopsy and referred me to a Plastic Surgeon. Her reasoning being that if it isn't removed completely it will get larger and spread. Oh great ! Just what I always wanted on my chest ...
Plus with my system immuno -compromised it's best to err on the side of caution.
My appointment with her was 2 weeks ago and it is now the size of a quarter and distinctly raised above the skin. Now to you a nickel or quarter may not be large. Put one on your chest and look in a mirror. See what I mean?
From what I've read this normally doesn't affect the chest area, so I'm curious if all my x-rays over the years for my lung transplants may have increased the possibilities in me.
My first appointment with the Plastic Surgeon isn't until the middle of February, so I sit and wait and wonder how large it will be by then.. Oh, and how in the heck will it be removed.
This is my latest diagnosis from the Dermatologist. A few months ago I had a small "whitehead" appear on the left side of my chest. Being just above where you'd place your hand to say the Pledge of Allegiance and very visible, I did what anyone would do. I popped it. It bled, and bled, and bled.
So it was covered with a band-aid for another few weeks. Yes, I did take it off and change it nightly.
While away for the Christmas holiday, as I was changing the bandage I looked in horror ! This small unnoticeable whitehead (not to me) was now the size of a nickel and it looked infected. ! With my medical history and not healing well this past year I began to worry- plus it itches like hell . I kept it covered and out of the sun, and quickly made an appointment to see the Dermatologist when I got home.
My worst fears were realized. It was not infected, and she proceeded to rattle off that name. She removed the top for biopsy and referred me to a Plastic Surgeon. Her reasoning being that if it isn't removed completely it will get larger and spread. Oh great ! Just what I always wanted on my chest ...
Plus with my system immuno -compromised it's best to err on the side of caution.
My appointment with her was 2 weeks ago and it is now the size of a quarter and distinctly raised above the skin. Now to you a nickel or quarter may not be large. Put one on your chest and look in a mirror. See what I mean?
From what I've read this normally doesn't affect the chest area, so I'm curious if all my x-rays over the years for my lung transplants may have increased the possibilities in me.
My first appointment with the Plastic Surgeon isn't until the middle of February, so I sit and wait and wonder how large it will be by then.. Oh, and how in the heck will it be removed.
Tuesday, January 15, 2013
Updates and Decisions
well.. the picc line was taken out and a Port now rests (cattywompus) on the right side of my chest. I have to get it flushed monthly. Our great Medicare system does not cover it, so my cost is $90 .
In anger I researched this and found the needle sells to these companies for $5.60 each.. Makes ya sick doesn't it?
Then with the hemorrhage in my left eye getting worse, I needed a shot to try and save my vision. When the Retina Specialist told me my co-pay for the shot was $493 I broke down.. Ya mean I have to pay almost $500 for someone to stick a needle in my eye ??? I opted for the experimental version at $36 since I was looking at a possible shot every 6 weeks.. Oh yeah and I was in that wonderful Black Hole they call the coverage gap.. Already hitting $500-600 a month on my med copays there.
I looked like a creature straight from a Halloween Horror Show, but it worked. My vision is still a little blurred but doable with my glasses. Whew!
In December Shands Hospital showed my the latest x-ray of my lungs. The right side is one grey area- but you can still see a lung on the left. I was told I would have this horrid cough for the remainder of my life - a side effect of Bronchiolitis Obliterans and scar tissue. Plus that grey right lung is gathering mucus and Pseudomonas, similar to a person with CF..
I now have a recumbent exercise bike (from the best hubby in the world) and am trying to regain my strength and endurance. I still try the treadmill- but the feet hurt so bad for the next few days it almost makes it not worth it.
I have lost my will and determination with this past year of illness. I want to reclaim it. I know without it, I am doomed. First will have to be my energy. I remember days where I would spend 2-3 hours on a treadmill so I could stay on the list for a lung transplant. And that was while on oxygen! I need to find that person again !
I need to reclaim me !
In anger I researched this and found the needle sells to these companies for $5.60 each.. Makes ya sick doesn't it?
Then with the hemorrhage in my left eye getting worse, I needed a shot to try and save my vision. When the Retina Specialist told me my co-pay for the shot was $493 I broke down.. Ya mean I have to pay almost $500 for someone to stick a needle in my eye ??? I opted for the experimental version at $36 since I was looking at a possible shot every 6 weeks.. Oh yeah and I was in that wonderful Black Hole they call the coverage gap.. Already hitting $500-600 a month on my med copays there.
I looked like a creature straight from a Halloween Horror Show, but it worked. My vision is still a little blurred but doable with my glasses. Whew!
In December Shands Hospital showed my the latest x-ray of my lungs. The right side is one grey area- but you can still see a lung on the left. I was told I would have this horrid cough for the remainder of my life - a side effect of Bronchiolitis Obliterans and scar tissue. Plus that grey right lung is gathering mucus and Pseudomonas, similar to a person with CF..
I now have a recumbent exercise bike (from the best hubby in the world) and am trying to regain my strength and endurance. I still try the treadmill- but the feet hurt so bad for the next few days it almost makes it not worth it.
I have lost my will and determination with this past year of illness. I want to reclaim it. I know without it, I am doomed. First will have to be my energy. I remember days where I would spend 2-3 hours on a treadmill so I could stay on the list for a lung transplant. And that was while on oxygen! I need to find that person again !
I need to reclaim me !
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