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.
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 !
Wednesday, June 20, 2012
New Hardware
I wondered a few days ago just how much hardware a body can handle before the software gives up.
This is a photo of my morning and evening routine:
This is a photo of my morning and evening routine:
On the left you see the IV meds I take and on the right the 2 nebulizer treatments .
Now this may not seem like much to you, however upon waking my routine is weight (yuck), blood pressure, temperature, heart rate, pft's, and blood sugar and logging it all in on an Excel spreadsheet. Then
Then round one of meds, breakfast, morning walk with boys, then round 2 of meds- then all the above before getting ready for work.
This is the picc line for the IV's that I wrap after the treatment so it isn't seen at work:
Yeah it hurt and itches like hell, but it's something I need for now. On Friday it comes out and I get a port in my upper right shoulder. Left is already full -a Pacemaker is strategically parked there. They told me the port would hurt about as much as the pacer being put in.. great.. SO that's why the Rx of Oxy..
Along with all this is the emotional ( I dread to consider the financial) aspect too. That is the part not many see. I'm still remaining positive and refuse any negativity in my life.
And thanks to wonderful -fantabulous friends on FaceBook I'm making it with laughter!
This post was starting out vastly different, then I spoke to a few of those wonderful friends and they had me laughing like a banshee!
Moral to the story:
The software can handle the hardware as long as it has wonderful caring friends and family.
Have you told your friends how special they are today??
Maybe you should
Saturday, June 9, 2012
Listen to those "bad vibes"
My bad feeling about Larry leaving for work came true.. And darned if I wasn't reading a book about just that- trusting in those little vibes you get.
After a high temperature (100.6) on Tuesday I was told to be in clinic on Wednesday and to bring a bag "just in case" . Well we recipients know what that means.. Your happy butt will be admitted and you get 3 square meals ( if you could call it that) you don't have to prepare. I woke up at 3:30AM and hit the road. My first appointment was at 8:00 for an x-ray. Then the fun began: 6 minute walk, pulmonary function tests ( that wreaked havoc on my lungs with this cough), Dr Baz and then the news- I was to get a port for IV Cefipime. Everything is showing normal so all they can figure is the Pseudomonas is trying to return with a vengeance. Though in thinking about this, I remember Pseudomonas as leaving one with the taste of grapes in their mouth. This tastes nothing like that ! trust me
Finally a port ! It has taken me 10 years to convince Dr Baz a port is better than a picc line any day! Which also means no more 8 hour round trips to Shands for a picc line insertion. So it is then 11:00 and I think lunch since it could be 3-4 hours before they get to me.. WRONG~! nothing to eat or drink- gee thanks.. And he hands me a prescription for Oxycodone for pain. I thought you said this wouldn't hurt? Oh no more than your pacemaker did... Well that hurt like hell buster!
So I check in and decide to get the prescription filled so I don't have to on my way home. I give them my cell number only to discover I'm on the last bar and in the red ! great and 4 hours to drive home! I got out to 8 voice mails and cringed. Plug the phone in to charge, find a parking lot and clear them all. I sat in a McDonalds parking lot in the rain on the phone- starving.
I got a picc line again... :( I have to be fever free for 24 hours to get a port -plus someone needs to druve me home after anesthesia.. Anesthesia? you call fentanyl and versed anesthesia ? I call those bronch happy drugs.. I drive home after bronchs all the time. Well, they don't know that .. So it is a picc line. and it itches like a MADMAN !
So I now get Cefipime twice a day via IV and will start Colistin on Monday- inhaled 30 days on and 30 days off.. This is to be used as a preventative to keep "whatever" at bay. I am too exhausted and tired to even consider what this will do to the part D "black hole" I am about to sink into.. I only know if you hear a loud scream in a few months you'll know I got blind sighted with the bills.
Since Colistin is not an approved Medicare drug, I shudder to think of its cost. But I'm in this for the long haul, and if I can't hit the ground running each morning, I'll just be thankful I can wake up and hit the ground at all.
On a more serious note, my temperature elevated to 101.6 on Thursday night. I figure after the picc insertion, 4 hour drive through thunderstorms, and getting home at 9PM- what body wouldn't rebel. Shands thought differently and wanted me to drive back to be admitted. I simply did not have it in me. I pleaded for 2 Tylenol and to sleep. Yes we must get permission to take Tylenol when running a temperature. They let me ! I woke at 7AM, completely out of character for me and felt like I had just slept the sleep of the dead! Never have I slept that much or that soundly!
I'm still running a slight temp (shhh don;t tell anyone ), the nebulizer has been delivered, and on June 22nd I will once again make that drive to Shands. The picc line will be removed and a port inserted. I will be in continual healing mode this summer :) But I will be here for the summer (and beyond) THAT is the key.;
Time for an IV!!!
After a high temperature (100.6) on Tuesday I was told to be in clinic on Wednesday and to bring a bag "just in case" . Well we recipients know what that means.. Your happy butt will be admitted and you get 3 square meals ( if you could call it that) you don't have to prepare. I woke up at 3:30AM and hit the road. My first appointment was at 8:00 for an x-ray. Then the fun began: 6 minute walk, pulmonary function tests ( that wreaked havoc on my lungs with this cough), Dr Baz and then the news- I was to get a port for IV Cefipime. Everything is showing normal so all they can figure is the Pseudomonas is trying to return with a vengeance. Though in thinking about this, I remember Pseudomonas as leaving one with the taste of grapes in their mouth. This tastes nothing like that ! trust me
Finally a port ! It has taken me 10 years to convince Dr Baz a port is better than a picc line any day! Which also means no more 8 hour round trips to Shands for a picc line insertion. So it is then 11:00 and I think lunch since it could be 3-4 hours before they get to me.. WRONG~! nothing to eat or drink- gee thanks.. And he hands me a prescription for Oxycodone for pain. I thought you said this wouldn't hurt? Oh no more than your pacemaker did... Well that hurt like hell buster!
So I check in and decide to get the prescription filled so I don't have to on my way home. I give them my cell number only to discover I'm on the last bar and in the red ! great and 4 hours to drive home! I got out to 8 voice mails and cringed. Plug the phone in to charge, find a parking lot and clear them all. I sat in a McDonalds parking lot in the rain on the phone- starving.
I got a picc line again... :( I have to be fever free for 24 hours to get a port -plus someone needs to druve me home after anesthesia.. Anesthesia? you call fentanyl and versed anesthesia ? I call those bronch happy drugs.. I drive home after bronchs all the time. Well, they don't know that .. So it is a picc line. and it itches like a MADMAN !
So I now get Cefipime twice a day via IV and will start Colistin on Monday- inhaled 30 days on and 30 days off.. This is to be used as a preventative to keep "whatever" at bay. I am too exhausted and tired to even consider what this will do to the part D "black hole" I am about to sink into.. I only know if you hear a loud scream in a few months you'll know I got blind sighted with the bills.
Since Colistin is not an approved Medicare drug, I shudder to think of its cost. But I'm in this for the long haul, and if I can't hit the ground running each morning, I'll just be thankful I can wake up and hit the ground at all.
On a more serious note, my temperature elevated to 101.6 on Thursday night. I figure after the picc insertion, 4 hour drive through thunderstorms, and getting home at 9PM- what body wouldn't rebel. Shands thought differently and wanted me to drive back to be admitted. I simply did not have it in me. I pleaded for 2 Tylenol and to sleep. Yes we must get permission to take Tylenol when running a temperature. They let me ! I woke at 7AM, completely out of character for me and felt like I had just slept the sleep of the dead! Never have I slept that much or that soundly!
I'm still running a slight temp (shhh don;t tell anyone ), the nebulizer has been delivered, and on June 22nd I will once again make that drive to Shands. The picc line will be removed and a port inserted. I will be in continual healing mode this summer :) But I will be here for the summer (and beyond) THAT is the key.;
Time for an IV!!!
Tuesday, May 29, 2012
"STOP the world I want off ! "
Have you ever had one of those days where you want to throw your hands up and just scream.. Stop the world I want off.. Or for you Trekkies -Beam me up Scotty!
I seem to be having a year of those days.. Now this is not the rants and raves of a silly LOL (little old lady), I too have those times when I feel overwhelmed with health issues and trepidation of what is to come.
My year started with the Retinal Occlusion and the news that my vision would never return to normal in my left eye. Then on to my little boy (DB) and his heart lung issues and fearing I was losing him a few weeks ago.
For those of you reading my blog for the first time DB is one of my furry wet-nosed four legged boys. The alpha male of the household - yes all 10 pounds of him. And affectionately called Dibs since he is a smaller version of his 18 pound brother.
Next was a clinic visit to Shands and the news that my lung function and kidney function were down. I knew I couldn't ride that "all healthy and good" gravy train forever, but both?? The clinic visited resulted in a return trip for a bronchoscopy and cleaning all that "gunk" out of my lungs. To date nothing has grown in the samples, to my dismay. My cough left for a few weeks and just when I thought it safe to breathe again -Wham ! it returned with a vengeance. I mean drinking a bottle of water really fast and hanging over the porcelain throne to bring it all up. Daily... You see all that "gunk" likes to stick around and try to take up residence in my lungs- resulting in a high temperature and Levacquin for 5 days. Which is where I stand now. One more day left !
I have yet to decided which taste is worse: Prednisone sticking to the roof of your mouth , requiring that appendage with all those taste buds to jar it loose- or that metallic taste from Levacquin that NOTHING will remove. That plus the insomnia might put good ole Lev right on top.
For the last 3 weeks I've had dizziness for no apparent reason. I mean if I'm gonna lie down and the room spin- why can't I have the alcohol to make it worthwhile right?? It doesn't seem to happen when I bend down like "normal" folks- but after my walks - note to self- grabbing a palm frond to steady yourself is about as good as holding a flag pole in a thunderstorm.Now comes a 30-day event monitor.. Great ! I have negative feelings regarding heart monitors- stemming from a bad experience years ago. Plus with this happening daily should my Dr. really want me to wait and then wait again for it to be sent away for reading??
Most of this stems from the fact we were just told my husband is leaving Friday for an extended stay in New England for work.. Yes I am strong! Yes I can be fearless! But I'd be lying if I didn't admit that being alone with this heart issue is scary.
Please don't get me wrong. I am not angry. I am frustrated. A good phrase is Sick & tired of being sick & tired. I'm also concerned that this may be that time where I once again have to suck it up and realize I'm on borrowed time. But honestly, I'd rather not face that news alone.
I seem to be having a year of those days.. Now this is not the rants and raves of a silly LOL (little old lady), I too have those times when I feel overwhelmed with health issues and trepidation of what is to come.
My year started with the Retinal Occlusion and the news that my vision would never return to normal in my left eye. Then on to my little boy (DB) and his heart lung issues and fearing I was losing him a few weeks ago.
For those of you reading my blog for the first time DB is one of my furry wet-nosed four legged boys. The alpha male of the household - yes all 10 pounds of him. And affectionately called Dibs since he is a smaller version of his 18 pound brother.
Next was a clinic visit to Shands and the news that my lung function and kidney function were down. I knew I couldn't ride that "all healthy and good" gravy train forever, but both?? The clinic visited resulted in a return trip for a bronchoscopy and cleaning all that "gunk" out of my lungs. To date nothing has grown in the samples, to my dismay. My cough left for a few weeks and just when I thought it safe to breathe again -Wham ! it returned with a vengeance. I mean drinking a bottle of water really fast and hanging over the porcelain throne to bring it all up. Daily... You see all that "gunk" likes to stick around and try to take up residence in my lungs- resulting in a high temperature and Levacquin for 5 days. Which is where I stand now. One more day left !
I have yet to decided which taste is worse: Prednisone sticking to the roof of your mouth , requiring that appendage with all those taste buds to jar it loose- or that metallic taste from Levacquin that NOTHING will remove. That plus the insomnia might put good ole Lev right on top.
For the last 3 weeks I've had dizziness for no apparent reason. I mean if I'm gonna lie down and the room spin- why can't I have the alcohol to make it worthwhile right?? It doesn't seem to happen when I bend down like "normal" folks- but after my walks - note to self- grabbing a palm frond to steady yourself is about as good as holding a flag pole in a thunderstorm.Now comes a 30-day event monitor.. Great ! I have negative feelings regarding heart monitors- stemming from a bad experience years ago. Plus with this happening daily should my Dr. really want me to wait and then wait again for it to be sent away for reading??
Most of this stems from the fact we were just told my husband is leaving Friday for an extended stay in New England for work.. Yes I am strong! Yes I can be fearless! But I'd be lying if I didn't admit that being alone with this heart issue is scary.
Please don't get me wrong. I am not angry. I am frustrated. A good phrase is Sick & tired of being sick & tired. I'm also concerned that this may be that time where I once again have to suck it up and realize I'm on borrowed time. But honestly, I'd rather not face that news alone.
Saturday, May 5, 2012
Cinco De Mayo
To many of you Cinco de Mayo refers to the Commemoration of the Mexican Army's 1862 victory over the French in the Battle of Puebla in the Franco-Mexican War.
To me it does too, however I have a huge celebration as well. On this day in 2005 (yes o5-05-05) I received my third chance at a new life. I received a kidney transplant.
I am to this day amazed at how little we think of our kidneys, and how they bring everything into working order in these complex machines we call our bodies. I knew I was anemic and had high blood pressure because of the the insufficiency of my kidneys. But to see the day after transplant my blood pressure reading drop to a whopping 95/64 with no meds from barely controlled 120/92 (on a good day) while taking 2 different medications is phenomenal.. I mean how can this small organ, smaller than my fist accomplish such a huge feat?
I still have my 3 page list of foods I had to avoid. No they were not the fast foods we hear about today. These were ones I loved: bananas, oranges, broccoli, dairy, etc. I used to joke that anything that was naturally good and colorful was b-a-d for me. I held out to the very last with my Diet Coke. Can't have caramel colored soft drinks either, too much phosphorus. I only drank them when I had an upset stomach. That too was nixed in the end.
I no longer have my "Popeye" arm, where the fistula was placed. It was removed exactly 5 years to the day after it was put in. It had formed a clot due to non-use. I smiled to think non-use. Wow, first time I could actually say I had a surgical procedure done as a pre-cautionary that was exactly that! Now all that remains is a long scar from under my arm-pit to just below my wrist. A reminder to take care of that lone kidney I received from Suzie my sweet donor. And the wonderful Donor Dad who agreed to let me receive it.
Today is melancholy and yet happy. Today is my celebration, while Donor Dad is remembering his little girl he lost on May 3, 2005 her birthday. You too can honor my donor Suzie, please visit my page and see her picture and read a little about her too. We have alot of similarities in our lives.
Are you an Organ Donor ? The life you could save might be one you love.. ♥
Recycle yourself.. Become an Organ and Tissue Donor
To me it does too, however I have a huge celebration as well. On this day in 2005 (yes o5-05-05) I received my third chance at a new life. I received a kidney transplant.
I am to this day amazed at how little we think of our kidneys, and how they bring everything into working order in these complex machines we call our bodies. I knew I was anemic and had high blood pressure because of the the insufficiency of my kidneys. But to see the day after transplant my blood pressure reading drop to a whopping 95/64 with no meds from barely controlled 120/92 (on a good day) while taking 2 different medications is phenomenal.. I mean how can this small organ, smaller than my fist accomplish such a huge feat?
I still have my 3 page list of foods I had to avoid. No they were not the fast foods we hear about today. These were ones I loved: bananas, oranges, broccoli, dairy, etc. I used to joke that anything that was naturally good and colorful was b-a-d for me. I held out to the very last with my Diet Coke. Can't have caramel colored soft drinks either, too much phosphorus. I only drank them when I had an upset stomach. That too was nixed in the end.
I no longer have my "Popeye" arm, where the fistula was placed. It was removed exactly 5 years to the day after it was put in. It had formed a clot due to non-use. I smiled to think non-use. Wow, first time I could actually say I had a surgical procedure done as a pre-cautionary that was exactly that! Now all that remains is a long scar from under my arm-pit to just below my wrist. A reminder to take care of that lone kidney I received from Suzie my sweet donor. And the wonderful Donor Dad who agreed to let me receive it.
Today is melancholy and yet happy. Today is my celebration, while Donor Dad is remembering his little girl he lost on May 3, 2005 her birthday. You too can honor my donor Suzie, please visit my page and see her picture and read a little about her too. We have alot of similarities in our lives.
Are you an Organ Donor ? The life you could save might be one you love.. ♥
Recycle yourself.. Become an Organ and Tissue Donor
Tuesday, January 24, 2012
Another Day At The Office
I've been noticing this grey spot right in the center of my vision in my left eye. I didn't think much about it since my eye Dr. mentioned I had floaters. I knew when my atrial fib was acting up sometimes the vision in that eye got a sort of aura when I tried to look at things.
Well since it's been annoying me for a week, I went back to the Dr today.. And received not so good news.
It seems I have a Retinal Occlusion in that eye. So he checked the carotid arteries in my neck and all appeared normal. so he's guessing a possible blood clot broke loose and invariably settled in my eye.
Great... but just another medical issue to add to my "Medical Resume" The good thing is that I can still see peripherally which means my eye is getting oxygen -just not enough at the moment. There is this annoying oval/egg shape dark spot direct center of my eye. Which may or may not go away..
No, I'm not happy about it. But after all I've been through this is just another day at the office.. Tomorrow will be busier I'm sure once we get the Retinal specialist, my cardiologist and Shands in the picture.
Now to warn a few Dr's what to expect tomorrow!!
Well since it's been annoying me for a week, I went back to the Dr today.. And received not so good news.
It seems I have a Retinal Occlusion in that eye. So he checked the carotid arteries in my neck and all appeared normal. so he's guessing a possible blood clot broke loose and invariably settled in my eye.
Great... but just another medical issue to add to my "Medical Resume" The good thing is that I can still see peripherally which means my eye is getting oxygen -just not enough at the moment. There is this annoying oval/egg shape dark spot direct center of my eye. Which may or may not go away..
No, I'm not happy about it. But after all I've been through this is just another day at the office.. Tomorrow will be busier I'm sure once we get the Retinal specialist, my cardiologist and Shands in the picture.
Now to warn a few Dr's what to expect tomorrow!!
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