I usually don't blog when I'm in a bad mood. I tend to hold my darker feelings closer preferring not to spew to a world that is already full of negativity and downers. But tonight it's different, I feel like venting, so let the ranting begin-
This week has been intense, it began with a bone density test that showed I have lost some bone mass. This is a nasty side effect from the massive amounts of steroids I've been on over the years. Unfortunately the future immunosuppresent drugs will cause further deterioration of my bones but I'll be fortunate if I live long enough for this to be any major problem.
Next was a CT scan of my sinuses. If infection is shown then I get the pleasure of having a sinus cavity debridement . Any residual infection will potentially negatively impact the new lungs and while I don't want that the thought of having a rotor rooter in my nose is not a pleasant one.
During the consult with the nutritionist she advised that I may need to lose another 10 pounds. The thinner you are, the easier it is for the surgeons. She advised not to go too low on the BMI scale as I will lose weight immediately after transplant. Apparently it takes your body time to learn to swallow again. Of course, that is if you are allowed to eat which sometimes you are not allowed to for weeks. Not to worry a convenient feeding tube will be shoved down your nose and inserted in your stomach.
The pharmacist went over the high cost of post transplant medication which can range from hundreds to thousands of dollars per month. These meds also contain a wide myriad of side effects including but not limited to- acne, hair loss, extreme agitation, depression, anxiety, fatigue, insatiable hunger, and the occasional loss of digits.
Then there was my annual pap smear. Enough said.
Tomorrow, I am getting a virtual colonoscopy. This procedure will involve pumping air into me while a CT scan looks inside, all without the joy of sedation, I might add. Today is prep day which involves not eating anything and drinking horrible, gross stuff- barium sulfate, magnesium carbonate and citric acid. The grumbling is building and soon the desired cleanse will begin. My very own gastric Mt. St. Helen complete with nauseous gases will erupt.
I have a head ache. I am hungry and grumpy. I am tired of being poked and prodded. The worst part is knowing there is no end in sight; it's going to get worse, much worse, before it gets better.
Thursday, January 31, 2013
Friday, January 25, 2013
Endoscopy complete.
Yesterday, As part of my pre-transplant exam I had an endoscopy. It's like a colonoscopy but from the opposite end. A tube with a camera was threaded through my mouth, down my throat, into my stomach and intestines. Thanks to the wonders of sedation I did not feel a thing. Pictures of my insides were taken and a clip was placed on my esophagus. For 48 hours this tiny tool measures stomach acid and communicates to a little computer clipped to my belt. Eventually the clip will dislodge and pass through my body.
The information the doctors are looking for is vital in assisting with the transplant. New lungs are fragile and if a patient has too much acid reflux then the acid can "spill" over into the lungs and cause damage that could result in rejection of the new organs.
This is one of the possible complications of transplant, to combat this problem the patient receives a stomach wrap and is not allowed to eat for weeks, some time months, while the body adjusts to the new lungs. I am hoping for good results and will not have to endure a stomach wrap.
The information the doctors are looking for is vital in assisting with the transplant. New lungs are fragile and if a patient has too much acid reflux then the acid can "spill" over into the lungs and cause damage that could result in rejection of the new organs.
This is one of the possible complications of transplant, to combat this problem the patient receives a stomach wrap and is not allowed to eat for weeks, some time months, while the body adjusts to the new lungs. I am hoping for good results and will not have to endure a stomach wrap.
Wednesday, January 23, 2013
Pulmonary Rehab
What is pulmonary rehab like? The words that come to mind are intense and exhausting. I come home tired, so tired that I have not been able to blog as much as I would like, nor read or play scrabble on-line or a myriad of other things I like to do when I have the energy. Such a finite world full of choices that we live in.
Below is an extensive account of a fellow patients' lung transplant experience describing pulmonary rehab. She paints with minute detail the picture of a typical day of pulmonary rehab, doing a much better job then I have the time and energy for at this juncture:
"I recently began actively making preparations for double lung transplant surgery by starting the intensive physical therapy program at Duke's Center for Living. All lung transplant candidates are required to attend 23 full sessions of Duke’s specialized and personalized exercise program, which prepares patients for the actual surgery and recovery. These sessions are from Monday through Friday, 12:30 to 3:30, and then 2-3 times a week we stay an additional hour for lectures. Many of the exercises are designed to strengthen the body in preparation for specific physical tasks and activities encountered during the time patients are in the ICU and Step Down “In-patient recovery stages” of post-transplant hospitalization. For example...making us do squats will enable us to go to the bathroom by ourselves. Bet you never really thought about how strong your legs need to be in order to lower and raise your body from a toilet seat. Actually, by the time patients find themselves in end-stage lung disease, even the simplest of tasks become enormous mountains to climb over. Things we previously took for granted such as washing our hair in the shower, now take monumental effort and we are exhausted after bathing, brushing hair and re-dressing.
After checking in to the center by scanning my ID card, I grab a couple towels, head to the women's dressing room to weigh myself, stop by the counter and get a pair of medical gloves (required to help keep us free from passing or getting germs from equipment). Once all that is done I take a seat alongside the other patients and wait for the staff to begin their routines. They come by with our medical charts in hand and start drilling us with questions. "Do you have a clipboard yet? Are you in pain related to this program? Where? On a scale from 1 - 10 how would you rate the pain? Do you have to take your blood sugar? What were your readings? How much did you weigh today? What level oxygen are you on right now? Give me your finger." (How much is my oxygen? I wonder.) "It's 96 percent. That's pretty good." (I think: 96%? Well, you shoulda took it when I stumbled through the door a little while ago!!!!) "Okay, let's get your blood pressure now." And so it goes...until all 35ish of us are done.
We all strap on leg weights…I am pretty strong so I started with 2 lb leg weights instead of one pound and I just got moved up to 3 pound this week. They are NOT designed for walking…they (and therapy bands) are designed to provide resistance during leg lifts and ankle rotations. We also use the dumb bells to increase our arm strength. We have trainers who guide us through a solid non-stop one hour workout.
Duke Center for Living staff are the most awesome people I have ever met. They are helpful, knowledgeable, and determined to help you have a successful operation and recovery. They KNOW their stuff. I like the fact that each day a different person leads the floor exercise instruction because each has their own specific style and area of the body they like to work out on. The routines are all fairly similar, but the trainers add their own twists. We have days that seem tougher than others….because some trainers are “grueling and unmerciful” (again, thanks David) while others use a slower pace with more breathing opportunities built in. But you know the saying, no pain…no gain. That goes for sweat too! I finally found out what that is! I have noticed how attentive the staff is to our needs: always checking the level of oxygen in our tanks, asking how we are doing, providing smiles of encouragement, assisting with equipment. They just represent customer service at its highest levels. I have NEVER seen anyone grumpy or upset. They all seem to really enjoy their work and it shows.
After floor exercise, we (or rather everyone else) must wipe down their equipment and mats and return them to the storage locations. It is not easy to pull an oxygen tank AND juggle a couple of mats, two leg weights and two hand weights and stop and clean them before hoisting them up on the storage rack.
While we were on the floor, a white board has been set up with three groups identified: Walk, Weights and Bike. Each category has 15 or so names listed. The group has been split up into exercise stations that we will rotate through in a clockwise manner. Each day we are rotated to start at a different station. So, if I started at the weights today, then tomorrow I’ll start at bikes and the next day my starting activity will be walking. It breaks up the monotony that way. Another help in breaking up the routine is by alternately walking counter-clockwise around the track one day and switching to clockwise the next. If the group I am assigned to is walking, then first we must report in to the trainer desk.
They verify that our tanks have sufficient oxygen in them to get us around track for our duration, if it is set to the proper oxygen level, and if we have our counting beads with us. On our first day we were presented with a cord of approximately 30 little plastic colored beads strung on. I tried using them a day or two. But I found them too small and easy to miscount with. I bought me some larger wooden beads with substance of varying textures, sizes and color tones and made my own counting beads. The trainers set a timer for 20 minutes, unless it is Tues or Thurs, and then we have to walk for 30 minutes.
Next stop is the weight section and I don’t mean Biggest Loser weigh-in. It’s power lift time! There we will alternate days between working on our upper body and lower body. The physical therapist has evaluated our abilities and developed a weights plan to gradually build our strength up. We have about 4-5 different machines for upper body and 4 more challenges such as lifting hand weights, a cane, squats, etc. The next day involves much of the same designed for our specific lower body needs.
. We call them bikes, but they are actually something called Nu-Step. We are seated in a recumbent position. Just like sitting in a car. Our feet are extended onto foot pads. Instead of rotating our feet in circular motion like a bicycle does, we use stepping motions to apply pressure on the mechanism that measures our distance, level of resistance, time, watts produces, steps taken, etc. There are also two handles that some people use to help strengthen the arms and assist with the force requirements. We do this for 20 minutes."
This is my new routine.
For Susan Traxel Marvin's full account go to - www.dukelungs.org/Pulmonary_Rehab.html
Below is an extensive account of a fellow patients' lung transplant experience describing pulmonary rehab. She paints with minute detail the picture of a typical day of pulmonary rehab, doing a much better job then I have the time and energy for at this juncture:
"I recently began actively making preparations for double lung transplant surgery by starting the intensive physical therapy program at Duke's Center for Living. All lung transplant candidates are required to attend 23 full sessions of Duke’s specialized and personalized exercise program, which prepares patients for the actual surgery and recovery. These sessions are from Monday through Friday, 12:30 to 3:30, and then 2-3 times a week we stay an additional hour for lectures. Many of the exercises are designed to strengthen the body in preparation for specific physical tasks and activities encountered during the time patients are in the ICU and Step Down “In-patient recovery stages” of post-transplant hospitalization. For example...making us do squats will enable us to go to the bathroom by ourselves. Bet you never really thought about how strong your legs need to be in order to lower and raise your body from a toilet seat. Actually, by the time patients find themselves in end-stage lung disease, even the simplest of tasks become enormous mountains to climb over. Things we previously took for granted such as washing our hair in the shower, now take monumental effort and we are exhausted after bathing, brushing hair and re-dressing.
After checking in to the center by scanning my ID card, I grab a couple towels, head to the women's dressing room to weigh myself, stop by the counter and get a pair of medical gloves (required to help keep us free from passing or getting germs from equipment). Once all that is done I take a seat alongside the other patients and wait for the staff to begin their routines. They come by with our medical charts in hand and start drilling us with questions. "Do you have a clipboard yet? Are you in pain related to this program? Where? On a scale from 1 - 10 how would you rate the pain? Do you have to take your blood sugar? What were your readings? How much did you weigh today? What level oxygen are you on right now? Give me your finger." (How much is my oxygen? I wonder.) "It's 96 percent. That's pretty good." (I think: 96%? Well, you shoulda took it when I stumbled through the door a little while ago!!!!) "Okay, let's get your blood pressure now." And so it goes...until all 35ish of us are done.
We all strap on leg weights…I am pretty strong so I started with 2 lb leg weights instead of one pound and I just got moved up to 3 pound this week. They are NOT designed for walking…they (and therapy bands) are designed to provide resistance during leg lifts and ankle rotations. We also use the dumb bells to increase our arm strength. We have trainers who guide us through a solid non-stop one hour workout.
Duke Center for Living staff are the most awesome people I have ever met. They are helpful, knowledgeable, and determined to help you have a successful operation and recovery. They KNOW their stuff. I like the fact that each day a different person leads the floor exercise instruction because each has their own specific style and area of the body they like to work out on. The routines are all fairly similar, but the trainers add their own twists. We have days that seem tougher than others….because some trainers are “grueling and unmerciful” (again, thanks David) while others use a slower pace with more breathing opportunities built in. But you know the saying, no pain…no gain. That goes for sweat too! I finally found out what that is! I have noticed how attentive the staff is to our needs: always checking the level of oxygen in our tanks, asking how we are doing, providing smiles of encouragement, assisting with equipment. They just represent customer service at its highest levels. I have NEVER seen anyone grumpy or upset. They all seem to really enjoy their work and it shows.
After floor exercise, we (or rather everyone else) must wipe down their equipment and mats and return them to the storage locations. It is not easy to pull an oxygen tank AND juggle a couple of mats, two leg weights and two hand weights and stop and clean them before hoisting them up on the storage rack.
While we were on the floor, a white board has been set up with three groups identified: Walk, Weights and Bike. Each category has 15 or so names listed. The group has been split up into exercise stations that we will rotate through in a clockwise manner. Each day we are rotated to start at a different station. So, if I started at the weights today, then tomorrow I’ll start at bikes and the next day my starting activity will be walking. It breaks up the monotony that way. Another help in breaking up the routine is by alternately walking counter-clockwise around the track one day and switching to clockwise the next. If the group I am assigned to is walking, then first we must report in to the trainer desk.
They verify that our tanks have sufficient oxygen in them to get us around track for our duration, if it is set to the proper oxygen level, and if we have our counting beads with us. On our first day we were presented with a cord of approximately 30 little plastic colored beads strung on. I tried using them a day or two. But I found them too small and easy to miscount with. I bought me some larger wooden beads with substance of varying textures, sizes and color tones and made my own counting beads. The trainers set a timer for 20 minutes, unless it is Tues or Thurs, and then we have to walk for 30 minutes.
Next stop is the weight section and I don’t mean Biggest Loser weigh-in. It’s power lift time! There we will alternate days between working on our upper body and lower body. The physical therapist has evaluated our abilities and developed a weights plan to gradually build our strength up. We have about 4-5 different machines for upper body and 4 more challenges such as lifting hand weights, a cane, squats, etc. The next day involves much of the same designed for our specific lower body needs.
This is my new routine.
For Susan Traxel Marvin's full account go to - www.dukelungs.org/Pulmonary_Rehab.html
Tuesday, January 22, 2013
CF Poem
Cystic Fibrosis Poem
This is my life, Every morning to every night, Everyday there is a constant fight.
But not everyone can see, this fight is between my body and me.
I hurt, I cough, I cry, I breathe, I just want a break is it hard to see?
They say I'm a hero, they say I'm strong, but sometimes I think they are all wrong,
I smile, I laugh and pretend I'm okay, Truthfully, that’s how I make it, day by day.
I constantly hear healthy people complain. Seriously? How many times have you had a needle shoved in your veins?
I sit, I cough, I gasp for air, and at the same time, it feels my lungs are starting to tear.
Doctors, treatments, needles and pills, Just the sound of them, gives people the chills.
Im fighting, I'm breathing, but at times I'm simply deceiving.
It might seem simple, maybe easily done, but I've been fighting my whole life. And this battle I still haven’t won.
You know I'm greatly jealous of you, because you have lungs that for me, would be considered brand new.
But really what else should I say? I shouldn’t just sit here and complain.
I have my friends, my family, and I have myself. That’s really all I need, even if I'm not in great health.
I'm going to fight and im going to win, I'm going to use all the strength I have within.
I've came this far along, and I promise you, im going to stay strong.
Thousands of people, fighting to breath every day, Thousands of people, just waiting to be okay.
This isn’t something you can just simply ignore. I think it’s time for a cure Need I say more?
-Unknown writer.
Thursday, January 17, 2013
Love Remembers You
by Same State
You’ve got a tear in your heart
Seems like it’s been there for years
You’ve never known love without scars
Or hope without fear
You blame all your trouble on God
You think he forgot about you
Cause life wouldn’t have to be hard
If He’d just come through
But He’s gonna come through
Cause tears don’t last forever
You ain’t always gonna lose
So if you’re frozen like December
The summer’s commin soon
Love remembers you
Love remembers you
So lift up your eyes oh weary soul
Quit makin friends with your pain
Cause you’ve got a heart made of gold
He won’t let it go to waste
You’re going to be okay
So hold on tight
You’re surrounded by
Saints and angels
And there’s a light
Shinen all the time
For all the faithful
Cause tears don’t last forever
You ain’t always gonna lose
So if you’re frozen like December
The summer’s commin
Oh summer’s commin
Cause tears don’t last forever
You ain’t always gonna lose
So if you’re frozen like December
Summer’s commin soon
Love remembers you
Love remembers you
Oh love remembers you
http://www.youtube.com/watch?v=zQbE3cYSt10&feature=youtube_gdata_player
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