We all have them. Those places and people that we know we can trust with our lives. They know us there. They support us and often literally keep us alive.
This is extremely true for transplant recipients. Our Transplant Centers are our Comfort Zones. for many of us, this is where we found the physicians that have ever been able to answer our questions about our diagnosis. I remember my first trip to University of Pittsburgh. I searched 28 years for answers to what my diagnosis actually was, and the cause. Then as if by magic, I was overwhelmed with answers ! And the Coordinators- oh my ! if all health care staff could be just like them. They were caring , positive, and so friendly.
Great flash back... and you know, even now at a different transplant center, this remains true. We as patients literally put our lives and well being into their hands. No other doctors office runs like these do. We talk to a live person, we get call backs, we get answers AND we do not have to wait 48 hours! Many times I have said, "I wish all offices could be like my center."
I am currently in a concerning dilemma.
I sense the chronic rejection/infection from my right lung has sneakily taken up residence in my left lung. Now this devious organ has tried this before, many times. We try to catch it early and make it move back home. Let me give you a little history here. The right lung is from a double lung transplant almost 26 years ago (I know, Yay me !) while the left lung was re-transplanted at Shands Hospital almost 15 years ago (again Go Me !!). I am known for doing all possible to stay away from hospital admissions.
Through the years my transplant coordinator has always known that if I call and say there is an issue, we jump right on it. We've shared many hospital admissions that took me years to get my strength and endurance back, and neither of us want a repeat. Bette, happy and medically managed healthy is a wondrous thing to be !
I've noticed my cough ( part of right lung chronic rejection, and as Heddi would say "A real Bugger") has gotten more prominent. Pain in my right side tells me it's on the move. Pain on my left side screams "Get it out !" My cough can be loose (preferably) or tight to the point of choking me (not fun). When you are woken up at 3AM choking and cannot get air in to make ANYTHING move- it is NOT a good thing. Both sides ache from muscles being strained to unbelievable levels. Been there. done that. Sadly it will happen again many times in my life. My friends know, my biggest fear is suffocating, alone and no help.
This is where I am now. Plus temperatures off and on for the last 3 weeks. Now comes the inevitable, walking across the room and I am struggling to breathe. This is NOT the Bette, who was walking and climbing in Maine just a few months ago ! This is NOT the Bette I want to be !
I coughed/ choked so long and hard on Sunday morning I went into A-Fib- today is Tuesday and I am still trying to get my heart rate back to normal. I will, if not my cardiologist will bring me in and there is an IV that works - just an annoyance is all.
Now the real concern... There is not one physician or coordinator who remembers my past history. They are all NEW ! I was called in a prescription for Levacquin, 1 tablet a day for 7 days. Ha ! I laughed hysterically.. I know it has to be knocked out and fast. This infection will shore up the tower, bring out the seige enginges and merely enjoy the little attack on it's defenses. Plus, I cannot take it. Levacquin causes a prolonged QT wave in your heart. I already have that, plus it does not play nice with my heart medication Multaq. I had open heart surgery with the double lung transplant instead of a heart transplant as well.
I called up Monday and asked if there was availability for a Wednesday visit. They were full & overbooked. Now, under different circumstances, this infection would have been long moved back to it's home with me being treated like we normally do. Heavy duty antibiotics called in & if I don't feel better within 14 days, a visit to start IV meds. I have repeated my history multiple times. I wonder if they are tired of hearing "This is what Dr. Baz always did for me and it worked ?" Maybe I should change it to Dr. Baz, Dr. Akindipe & Dr. Salgado ? In my defense, my previous physicians proved to me time and time again- they would keep me alive. Those transplant coordinators deserve a universe of praise as well ! I admit, when I'm sick, I want to get well NOW. I had all these transplants to embrace life and this is merely an interference with me getting on with life.
I guess what I'm saying is, after trial and error we found what works for me. I don't really want to go through trial and error again. Is it too much to ask, to have a physician who KNOWS me and a coordinator as well.
During this phone call, I spoke with Rita the transplant assistant. When I mentioned coming up, her response was, "You're one of our strongest patients, when you call we know you are serious." My response: "I know! right! You're the only one there who remotely remembers my history." I did get an appointment, with a promise that I will be given nothing unless in conjunction with my Cardiologist approval. As long as he knows, and we are proactive, I'm OK with it.
My suggestion for hiring coordinators. Let's not look at qualifications, but more at longevity. My coordinator in Pittsburgh is still there 26 years later. How comforting that is. My original coordinator at Shands, I had for many years & was heartbroken to lose her as well as my physician (happily married with gorgeous kids), but there was a long period of transition to Sonja. Sonja was moved to pre-transplant after a few years and I got Chad who after 2 visits took a promotion and I got Sherrie. I just barely knew her and she left. After a few talks with Ashley-Marie my new coordinator, she is trying her best to know me and be my advocate. I only hope she stays for a long time.. The foundation of my comfort zone has shaken just like out recent Hurricane. This appointment will be stressful as I fight for what I know I need from years of experience, as well as try to not bring up physicians of the past.
Safe to say, I will get through this. I am not ready to check out yet, even with continual coughing for 5 years and lack of sleep from said coughing.. This is still my life and I intend to check out when I am ready. My goal to be back in Maine next summer and walking those inclines again ! Oh, and the lobster and Haddock are a great enticement too :)
Be safe... Be a Donor.... Lives depend on you .
Showing posts with label breathing. Show all posts
Showing posts with label breathing. Show all posts
Tuesday, September 26, 2017
Tuesday, September 1, 2015
And The Fun Continues
The last month or so has brought about changes and new /old decisions.
I am now also seeing a local Pulmonologist, in case of emergency. This was my suggestion so a physician here will know of my status should I need to go to a local hospital. Which would be absolutely one foot in the grave for this to happen. I have a dreaded fear of my local hospitals, that they seem to reinforce at every turn. If you are an organ transplant recipient, you will agree that your transplant center is leagues ahead of local hospitals ~hands down.
If I am not blogging much this is for two reasons. When I do not feel well, I honestly haven't much to say. I become a serious introvert, quiet, and conserving my energy for getting well. Plus, who wants to always hear me whine about aches, pains, "I'm getting worse !" on Social Media. To me it's a downer and at this stage of my life something I need to avoid. I understand the occasional, but it is the constant and somewhat depressing outcry that can bring us all down, and not who I promised myself I'd become. I want my friends/ family to laugh, smile and keep me encouraged. I do feel for those who aren't feeling well or facing life altering changes, and I feel very deeply for them. This is just my viewpoint on me. Secondly, I rarely make it to my computer to do much of anything when I feel bad. Since my days already consist of multiple naps, when feeling bad there is usually more napping involved ~ and let's be honest. Would you turn down a great nap, in a cool dark room, covered in soft blankets- for typing on Social Media?
But I digress. Over the last month, I have found I no longer qualify for a Handicapped parking permit. That was a Prednisone moment for a few days. Me? who can barely breathe on a good day, no longer qualifies. Sure... that's our wonderful State Legislature and my Senator in particular Nancy Detert hard at work for us. I spoke with her office about changing the laws back or giving a bit of slack to those of us who must park at the end of the lot and struggle to get to that Blessed air conditioning- and was referred to the Department of Motor Vehicles ! Imagine that, passing the buck when she had a hand in making these rules tighter. I consider myself a responsible Handicapped Permit person. On days when I feel good- I walk, there are others who need that spot more than I . However on those days when it is a struggle, yes I need a bit of assistance. Well, apparently not now.
This last month has also seen a few changes in my health. I am back on my antibiotic Colistin until my Amikacin arrives. Plus who really wants to waste $400 of medicine? Hopefully the Amikacin will "jolt" my lungs into fighting, well my left lung anyway. I'm not sure if I mentioned this or not, but I have my nebulizer next to my stationery bicycle. So, I must either sit on my bike or ride it , albeit slowly while I nebulize. Great way to psychologically make me exercise- right? I thought so too. I am however very winded when I finish, due to the ride and the Colistin trying to tighten my airways . Plus I am always fatigued and ready for nap #1. Hopefully the Amikacin will change this, update to follow.
The main event in my month happened yesterday while talking with my Coordinator. She asked if I was opposed to going back on oxygen. That brought about a flood of memories and thoughts. Opposed? No.. Do I want to ? No Did I eventually know this would happen? Of course. We discussed using oxygen while I sleep and exercise. Which is usually the norm in starting use. I used to sleep the sleep of the dead when I had it eons before. AND no massive headaches when I woke up. I breathe shallowly during sleep, I can create a headache. It sometimes goes away after a few hours and sometimes not. I also noticed during my last clinic visit, that walking from the waiting room to get my vitals done, my O2 sat level had dropped to 90 but slowly came back up to 95. We lungers have secret ways to get those sats back up ;) So this might just help a bit in the long run. We're gonna wait and see if the Amikacin helps with the symptoms, yes the Colistin causes headaches as well and take it from there during my next visit in October.
I have been hesitant about oxygen, as this is a new step for my husband too. He met me just after my 2nd lung transplant and hasn't really witnessed me being sick. Well the hemorrhaging last year was a huge wake up call for him. Plus, depending on the oxygen I get, it can be noisy. Not really conducive to romance either... We shall see..
All changes in lifestyle, but nothing that cannot be overcome. I have always viewed using oxygen as giving my body what it vitally needs that I can no longer supply as needed, much like a person with a prosthetic. It helps keep the rest of me oxygenated and healthy, while the lungs deteriorate. Merely being honest.. I am known for the bold truth.
Oh ! I almost forgot... I will be checking off an item on my Bucket List sometime soon ! I can't tell- after all this is Social Media and can't let "the cat out of the bag" just yet. More to come though !
Have a happy, joyous life no matter your health issues. You are here, and your family and friends are delighted !
I am now also seeing a local Pulmonologist, in case of emergency. This was my suggestion so a physician here will know of my status should I need to go to a local hospital. Which would be absolutely one foot in the grave for this to happen. I have a dreaded fear of my local hospitals, that they seem to reinforce at every turn. If you are an organ transplant recipient, you will agree that your transplant center is leagues ahead of local hospitals ~hands down.
If I am not blogging much this is for two reasons. When I do not feel well, I honestly haven't much to say. I become a serious introvert, quiet, and conserving my energy for getting well. Plus, who wants to always hear me whine about aches, pains, "I'm getting worse !" on Social Media. To me it's a downer and at this stage of my life something I need to avoid. I understand the occasional, but it is the constant and somewhat depressing outcry that can bring us all down, and not who I promised myself I'd become. I want my friends/ family to laugh, smile and keep me encouraged. I do feel for those who aren't feeling well or facing life altering changes, and I feel very deeply for them. This is just my viewpoint on me. Secondly, I rarely make it to my computer to do much of anything when I feel bad. Since my days already consist of multiple naps, when feeling bad there is usually more napping involved ~ and let's be honest. Would you turn down a great nap, in a cool dark room, covered in soft blankets- for typing on Social Media?
But I digress. Over the last month, I have found I no longer qualify for a Handicapped parking permit. That was a Prednisone moment for a few days. Me? who can barely breathe on a good day, no longer qualifies. Sure... that's our wonderful State Legislature and my Senator in particular Nancy Detert hard at work for us. I spoke with her office about changing the laws back or giving a bit of slack to those of us who must park at the end of the lot and struggle to get to that Blessed air conditioning- and was referred to the Department of Motor Vehicles ! Imagine that, passing the buck when she had a hand in making these rules tighter. I consider myself a responsible Handicapped Permit person. On days when I feel good- I walk, there are others who need that spot more than I . However on those days when it is a struggle, yes I need a bit of assistance. Well, apparently not now.
This last month has also seen a few changes in my health. I am back on my antibiotic Colistin until my Amikacin arrives. Plus who really wants to waste $400 of medicine? Hopefully the Amikacin will "jolt" my lungs into fighting, well my left lung anyway. I'm not sure if I mentioned this or not, but I have my nebulizer next to my stationery bicycle. So, I must either sit on my bike or ride it , albeit slowly while I nebulize. Great way to psychologically make me exercise- right? I thought so too. I am however very winded when I finish, due to the ride and the Colistin trying to tighten my airways . Plus I am always fatigued and ready for nap #1. Hopefully the Amikacin will change this, update to follow.
The main event in my month happened yesterday while talking with my Coordinator. She asked if I was opposed to going back on oxygen. That brought about a flood of memories and thoughts. Opposed? No.. Do I want to ? No Did I eventually know this would happen? Of course. We discussed using oxygen while I sleep and exercise. Which is usually the norm in starting use. I used to sleep the sleep of the dead when I had it eons before. AND no massive headaches when I woke up. I breathe shallowly during sleep, I can create a headache. It sometimes goes away after a few hours and sometimes not. I also noticed during my last clinic visit, that walking from the waiting room to get my vitals done, my O2 sat level had dropped to 90 but slowly came back up to 95. We lungers have secret ways to get those sats back up ;) So this might just help a bit in the long run. We're gonna wait and see if the Amikacin helps with the symptoms, yes the Colistin causes headaches as well and take it from there during my next visit in October.
I have been hesitant about oxygen, as this is a new step for my husband too. He met me just after my 2nd lung transplant and hasn't really witnessed me being sick. Well the hemorrhaging last year was a huge wake up call for him. Plus, depending on the oxygen I get, it can be noisy. Not really conducive to romance either... We shall see..
All changes in lifestyle, but nothing that cannot be overcome. I have always viewed using oxygen as giving my body what it vitally needs that I can no longer supply as needed, much like a person with a prosthetic. It helps keep the rest of me oxygenated and healthy, while the lungs deteriorate. Merely being honest.. I am known for the bold truth.
Oh ! I almost forgot... I will be checking off an item on my Bucket List sometime soon ! I can't tell- after all this is Social Media and can't let "the cat out of the bag" just yet. More to come though !
Have a happy, joyous life no matter your health issues. You are here, and your family and friends are delighted !
Saturday, June 20, 2015
Managing My Time
My agenda starts as soon as I wake up..
Most cannot fathom all that is involved with the regimen we follow as well as everyday life.
Add into that taking a Thyroid pill and waiting an hour before you can eat or drink anything besides water, getting my day started is jumbled. Depending on how I feel also denotes how fast I move.
I want to strengthen my lungs and increase my energy a bit more, so I usually walk my Treadmill after my nebulizer to get rid of the jittery shakes from the meds.. My body is good for very little while shaking so bad. Now the Plantar Fasciitis is rearing it's ugly head, my feet are extremely painful within a few hours of walking. Pair this with the fact that Ozzi now prefers a car ride to walking, and Bette gets less exercise. He is 13 now and slowing down , regrettably. My hope has been to spend 15 minutes on the Treadmill after each meal. I can skip breakfast if I convince Ozzi to walk.
Now that hubby is retired, or partially fitting in time for a nebulizer is difficult. I can't do it while he is sleeping, it is one noisy machine and he seems raring to go once he has breakfast. He is a man of lists and plans out what he wants to do the day before. After 11 years, I still have not gotten through that thick New England skull to chek on my list too :) Or my routine.
Today we decided to try an experiment.
Only he was up earlier than I planned...
I had taken my pill and was chugging water when he woke up. So instead of the treadmill, after breakfast we took Ozzi for a ride, and a walk in a different area.. Completely new dog ! He's apparently bored with the old routes..
I did notice it getting more difficult to breathe at the end of the walk, so couldn't wait for the nebulizer to open everything up and then the antibiotics. Hubby had different plans..
We then went to the Produce stand and bought fresh vegetables.. I love the tomatoes this time of year so happily agreed..Knowing in the back of my mind the nebulizer awaited.
Then it was a stop at PetSuperMarket just because- Ozzi had been so good ! Then gas for the vehicle and finally home.. Yay- nebulizer time !
Hubby wanted lunch before he cleaned the cars...
With all this scrambling in my head, I made lunch. Wondering how on earth I will fit in that nebulizer, ride my stationery bike ( over the treadmill) and complete the ring and pendant order sitting at on my table screaming at me.
Solution!!!!!
I put a small table by the bike (recumbent) with the nebulizer. With my meds ready, water bottle in hand and a good book, I proceeded to hit my 15 minutes or 2 miles.
I'm thinking I may keep it this way... Two projects with one stone..
Here I have to mention,. it is imperative to have a good book to read.. I am reading Between Before And After by Amanda Dick. I highly recommend it ! I actually kept riding so I had an excuse to keep reading the chapter I was on !! This is her second book I've read and both are well worth the time.. She is about to release her third and I cannot wait !! She can easily be found on Amazon for you Kindle or Kindle App.
So now with jitters gone, and fully recharged...thank you Amanda for keeping me exercising, I leave you to begin designing those orders :)
Most cannot fathom all that is involved with the regimen we follow as well as everyday life.
Add into that taking a Thyroid pill and waiting an hour before you can eat or drink anything besides water, getting my day started is jumbled. Depending on how I feel also denotes how fast I move.
I want to strengthen my lungs and increase my energy a bit more, so I usually walk my Treadmill after my nebulizer to get rid of the jittery shakes from the meds.. My body is good for very little while shaking so bad. Now the Plantar Fasciitis is rearing it's ugly head, my feet are extremely painful within a few hours of walking. Pair this with the fact that Ozzi now prefers a car ride to walking, and Bette gets less exercise. He is 13 now and slowing down , regrettably. My hope has been to spend 15 minutes on the Treadmill after each meal. I can skip breakfast if I convince Ozzi to walk.
Now that hubby is retired, or partially fitting in time for a nebulizer is difficult. I can't do it while he is sleeping, it is one noisy machine and he seems raring to go once he has breakfast. He is a man of lists and plans out what he wants to do the day before. After 11 years, I still have not gotten through that thick New England skull to chek on my list too :) Or my routine.
Today we decided to try an experiment.
Only he was up earlier than I planned...
I had taken my pill and was chugging water when he woke up. So instead of the treadmill, after breakfast we took Ozzi for a ride, and a walk in a different area.. Completely new dog ! He's apparently bored with the old routes..
I did notice it getting more difficult to breathe at the end of the walk, so couldn't wait for the nebulizer to open everything up and then the antibiotics. Hubby had different plans..
We then went to the Produce stand and bought fresh vegetables.. I love the tomatoes this time of year so happily agreed..Knowing in the back of my mind the nebulizer awaited.
Then it was a stop at PetSuperMarket just because- Ozzi had been so good ! Then gas for the vehicle and finally home.. Yay- nebulizer time !
Hubby wanted lunch before he cleaned the cars...
With all this scrambling in my head, I made lunch. Wondering how on earth I will fit in that nebulizer, ride my stationery bike ( over the treadmill) and complete the ring and pendant order sitting at on my table screaming at me.
Solution!!!!!
I put a small table by the bike (recumbent) with the nebulizer. With my meds ready, water bottle in hand and a good book, I proceeded to hit my 15 minutes or 2 miles.
I'm thinking I may keep it this way... Two projects with one stone..
Here I have to mention,. it is imperative to have a good book to read.. I am reading Between Before And After by Amanda Dick. I highly recommend it ! I actually kept riding so I had an excuse to keep reading the chapter I was on !! This is her second book I've read and both are well worth the time.. She is about to release her third and I cannot wait !! She can easily be found on Amazon for you Kindle or Kindle App.
So now with jitters gone, and fully recharged...thank you Amanda for keeping me exercising, I leave you to begin designing those orders :)
Saturday, June 6, 2015
The Grand Adventures of Oz.
Many of you already know Oz. For those who do not, Oz is the last of my 3 boys.
we lost Dibs in February 2 years ago, his brother CC in March of this year. Oz is our Skye Terrier who after being dropped off at my house at 8 weeks- rescued me.
After losing CC, a deal was made with Ozzi. He will be our only dog , as long as he promises to live forever :)
Since he is now 13 and greying, and I decided to start working on my Bucket List again. I thought , how about we check items off together !
Without further ado.... may I present Ozzi.
Oz here....
Mom & Dad are taking me everywhere ! Being the only dog has it's advantages. It was great having Dibs & CC around for fun and blaming each other when we dug up the yard... but like Mom says...
It's Good To Be The King!
We're off in the Motorhome, my first time without my brothers. We had mechanical issues -again- but no blown tires on the highway... yay ! We left the 1st campground in a hurry... yuck... but now are in a great place on a lake with lots of ducks!!!
Today was my 1st trip to a Flea Market. I walked with my tail high acting like I owned the place. Mom kept telling me to slow down, but I wanted to sniff everything! I have to remember Mom can't catch her breath like when we walked 3-4 miles every morning. But this was her 1st trip to a place like this in a long time too.
Then we rode the highway looking for a place for lunch. Dad said it had to have outside seating so I could go to.. they love me soooo much. Yay for Firehouse Subs!
Mom is always sharing her meals with me. Don't tell Dad,but I take her to lunch when he's working...lol. Back in the car and headed back to our motor home,I heard Mom say they wore me out ! I'm gonna let Em think that until I get out of the car.
Tonight Gracie & Ashton will be flying in ! I really love the girls !
Tomorrow we drive out for a new grand adventure. ...
Ozzi out fur now ...
we lost Dibs in February 2 years ago, his brother CC in March of this year. Oz is our Skye Terrier who after being dropped off at my house at 8 weeks- rescued me.
After losing CC, a deal was made with Ozzi. He will be our only dog , as long as he promises to live forever :)
Since he is now 13 and greying, and I decided to start working on my Bucket List again. I thought , how about we check items off together !
Without further ado.... may I present Ozzi.
Oz here....
Mom & Dad are taking me everywhere ! Being the only dog has it's advantages. It was great having Dibs & CC around for fun and blaming each other when we dug up the yard... but like Mom says...
It's Good To Be The King!
We're off in the Motorhome, my first time without my brothers. We had mechanical issues -again- but no blown tires on the highway... yay ! We left the 1st campground in a hurry... yuck... but now are in a great place on a lake with lots of ducks!!!
Today was my 1st trip to a Flea Market. I walked with my tail high acting like I owned the place. Mom kept telling me to slow down, but I wanted to sniff everything! I have to remember Mom can't catch her breath like when we walked 3-4 miles every morning. But this was her 1st trip to a place like this in a long time too.
Then we rode the highway looking for a place for lunch. Dad said it had to have outside seating so I could go to.. they love me soooo much. Yay for Firehouse Subs!
Mom is always sharing her meals with me. Don't tell Dad,but I take her to lunch when he's working...lol. Back in the car and headed back to our motor home,I heard Mom say they wore me out ! I'm gonna let Em think that until I get out of the car.
Tonight Gracie & Ashton will be flying in ! I really love the girls !
Tomorrow we drive out for a new grand adventure. ...
Ozzi out fur now ...
Thursday, May 27, 2010
Chronic Rejection
For some reason unknown to me, this topic has been on my mind lately. I certainly hope it is not a harbinger of the doom to come. I can honestly say I have endured chronic rejection with my first double lung transplant, and have NO desire to be tested in this way again. I decided to do a quick search on the topic, with respect to lungs, and found numerous medical updates on the net, literally filled with doom and gloom.
Clinical aspects aside, not one touched on what a patient actually feels at this time in their life.
Chronic rejection in a lung transplant feels like a death sentence-mentally, physically and yes emotionally. Many times I described it just like that.. Before I actually knew the true meaning of those words. I can still vividly remember the day I was told. I was at work when the call came in. Thankfully, someone saw my expression and stood behind my chair. If not there would have been the sight of me & the chair gliding across the room.. I fell into my chair speechless, mind totally blank unable to process the words. What now? I knew I was short of breath, but this? The feeling is similar to being first diagnosed. That helpless feeling of not knowing what to do. Knowing in my subconscious what was about to happen in my future-or lack of.
To be totally honest, I was woefully unprepared for the next few years of my life. Internet searches tell of the morbidity rate in chronic lung transplant rejection, so this was something else to add to my thoughts. At 40 years old, one rarely thinks of "final arrangements". This I had to do because it was the last thing I wanted my parents to worry about afterwards. They had watched me struggle and survive enough. I made plans for a month long visit to UPMC for treatment and a re-eval for possibly listing for another transplant. To say the least, chronic rejection treatments back then left alot to be desired. I remember having a death grip on the bed rails, screaming with pain in my knees, while the wonderful nurses ran for something to knock me out. And then just when we thought I'd crossed the hurdle- the serum sickness started... Oh what a joy... I'll leave that descruption to your imagination. Believe me, it was not pretty. I finally left UPMC in a wheelchair, my legs too weak due to the knew pain. I was also denied a relist, due to kidney function.
I geared up to find a center who would consider me for a relist along with all the other issues I was tackling. I found one. A wonderful center, and I still go there today. UF is MY comfort zone. Back to the story. My knees were so weak, if I sat on the floor-forget getting up. I had to crawl to a chair and using my arms lift myself up into the chair, in order to eventually stand. I actually got stuck in the bath tub...alone.. until I figured a way to gt myself out. It's funny now, but believe me, not when you're freezing and pruning at the same time. I fell in the balcony to my apartment and couldn't get up. I waited until someone came home from work, sunburnt and almost out of oxygen before I could get help. Sweeping floors was an all day affair, for one room only. I had a bar stool and my broom. I'd sweep 2 tiles and sit to catch my breath. Move the chair, sweep...you get the picture. Literally an all day affair. I had lost so much weight trying to breathe, a light wind almost blew me over. Thank goodness Mom was there at the time to catch me.
I would sit outside each morning watching the sunrise, drinking my cup of coffee and wonder how many of those beautiful scenes I'd enjoy. I told everyone that God was whispering through the palm trees, it wasn't the wind blowing. I reveled in all the scenes I could. This is what kept me going mentally.
UF kept me going physically. I had an exercise program that would make an olympian jealous. Well, you get the idea. I went to rehab 3 days a week, had (still have) a multi station gym and treadmill at home. On weekends I would walk the mall. I knew exactly where each bench was to sit down and catch my breath. Every clinic vist, every three months my physical progress was checked. I had to be able to leg press 80% of my body weight. When I finished I was actually lifting 10 pounds more than my body weight.
Psychologically, I was told to stop doing my spirometry at home. Watching those numbers drop daily is so defeating. I already knew what was happening. This was showing me the undeniable proof. Thanks to the transplant team at UF I've learned that if I can exercise when I'm dying and on oxygen, I can do it when I'm not.
I remember many times wondering why I ever had the first transplant at all. Surely my original symptoms were nothing like this. But those thoughts have to be stopped. My original disease had not progressed that far, soI couldn't realistically say this. Plus, I had enjoyed 9 years of life that I would never have had. I competed in the 1994 US Transplant Games, hiked El Yunque in Puerto Rico, and so many other wonderful things I would have only imagined if I had not taken the chance on a lung transplant. I went back to work, attained goals and dreams all through lung transplantation. I remember saying after my first transplant that I'd never have a second. How wrong I was. I would not trade one part of my life to go back and change my mind.Good, bad, ugly, or otherwise.
My biggest fear is that I will once again hear those life altering words: You have chronic rejection.
I know the outcome, but would rather spend my time not thinking about it and living my life.
To my friends facing chronic rejection: I feel your pain, I remember the emotions. I'm here for you.
And I'm praying for you to desperately get the chance. I'm also promoting organ donation and research to help us all.
Clinical aspects aside, not one touched on what a patient actually feels at this time in their life.
Chronic rejection in a lung transplant feels like a death sentence-mentally, physically and yes emotionally. Many times I described it just like that.. Before I actually knew the true meaning of those words. I can still vividly remember the day I was told. I was at work when the call came in. Thankfully, someone saw my expression and stood behind my chair. If not there would have been the sight of me & the chair gliding across the room.. I fell into my chair speechless, mind totally blank unable to process the words. What now? I knew I was short of breath, but this? The feeling is similar to being first diagnosed. That helpless feeling of not knowing what to do. Knowing in my subconscious what was about to happen in my future-or lack of.
To be totally honest, I was woefully unprepared for the next few years of my life. Internet searches tell of the morbidity rate in chronic lung transplant rejection, so this was something else to add to my thoughts. At 40 years old, one rarely thinks of "final arrangements". This I had to do because it was the last thing I wanted my parents to worry about afterwards. They had watched me struggle and survive enough. I made plans for a month long visit to UPMC for treatment and a re-eval for possibly listing for another transplant. To say the least, chronic rejection treatments back then left alot to be desired. I remember having a death grip on the bed rails, screaming with pain in my knees, while the wonderful nurses ran for something to knock me out. And then just when we thought I'd crossed the hurdle- the serum sickness started... Oh what a joy... I'll leave that descruption to your imagination. Believe me, it was not pretty. I finally left UPMC in a wheelchair, my legs too weak due to the knew pain. I was also denied a relist, due to kidney function.
I geared up to find a center who would consider me for a relist along with all the other issues I was tackling. I found one. A wonderful center, and I still go there today. UF is MY comfort zone. Back to the story. My knees were so weak, if I sat on the floor-forget getting up. I had to crawl to a chair and using my arms lift myself up into the chair, in order to eventually stand. I actually got stuck in the bath tub...alone.. until I figured a way to gt myself out. It's funny now, but believe me, not when you're freezing and pruning at the same time. I fell in the balcony to my apartment and couldn't get up. I waited until someone came home from work, sunburnt and almost out of oxygen before I could get help. Sweeping floors was an all day affair, for one room only. I had a bar stool and my broom. I'd sweep 2 tiles and sit to catch my breath. Move the chair, sweep...you get the picture. Literally an all day affair. I had lost so much weight trying to breathe, a light wind almost blew me over. Thank goodness Mom was there at the time to catch me.
I would sit outside each morning watching the sunrise, drinking my cup of coffee and wonder how many of those beautiful scenes I'd enjoy. I told everyone that God was whispering through the palm trees, it wasn't the wind blowing. I reveled in all the scenes I could. This is what kept me going mentally.
UF kept me going physically. I had an exercise program that would make an olympian jealous. Well, you get the idea. I went to rehab 3 days a week, had (still have) a multi station gym and treadmill at home. On weekends I would walk the mall. I knew exactly where each bench was to sit down and catch my breath. Every clinic vist, every three months my physical progress was checked. I had to be able to leg press 80% of my body weight. When I finished I was actually lifting 10 pounds more than my body weight.
Psychologically, I was told to stop doing my spirometry at home. Watching those numbers drop daily is so defeating. I already knew what was happening. This was showing me the undeniable proof. Thanks to the transplant team at UF I've learned that if I can exercise when I'm dying and on oxygen, I can do it when I'm not.
I remember many times wondering why I ever had the first transplant at all. Surely my original symptoms were nothing like this. But those thoughts have to be stopped. My original disease had not progressed that far, soI couldn't realistically say this. Plus, I had enjoyed 9 years of life that I would never have had. I competed in the 1994 US Transplant Games, hiked El Yunque in Puerto Rico, and so many other wonderful things I would have only imagined if I had not taken the chance on a lung transplant. I went back to work, attained goals and dreams all through lung transplantation. I remember saying after my first transplant that I'd never have a second. How wrong I was. I would not trade one part of my life to go back and change my mind.Good, bad, ugly, or otherwise.
My biggest fear is that I will once again hear those life altering words: You have chronic rejection.
I know the outcome, but would rather spend my time not thinking about it and living my life.
To my friends facing chronic rejection: I feel your pain, I remember the emotions. I'm here for you.
And I'm praying for you to desperately get the chance. I'm also promoting organ donation and research to help us all.
Thursday, January 28, 2010
Today's gonna be a great day!
While this may be great lyrics for a song- The Blackeyed Peas just in case you haven't heard it on TV, I have gotten in the habit of telling myself this each and every morning. I am Blessed to wake up. I am Blessed to be out of the wheelchair. I am Blessed to be off oxygen. I am Blessed my kidneys work and no more diet restrictions.
Let's face it... I'm Blessed.
Actually we are all Blessed to be alive and enjoying life's good moments and obstacles. It wasn't that long ago I was told (3 times) I was going to die. Those are words no one should have to hear, especially at 17, or 31, or 45 for that matter.
I actually didn't hear it at 17, my parents did and told me later. So there wasn't much impact. I did know that my life was going to be shorter than most. So I justified it by telling my parents my philosophy:
"If I die old -no one remembers, BUT if I die young, no-one forgets." This was merely a way for me to put this part of my life in perspective, and cover my nervousness.
This death sentence was always pushed up each time I hit a new milestone. When I passed 20 it was pushed to 25, then to 30. I guess back then it was all the doctors had to go on. I remember mentioning to my Mom that turning 30 was difficult enough, geez do they have to put a death sentence on too?
Of course there were hospital visits during all of this. After all, I was a boisterous young adult. Plus I was told to go out and live my life to the fullest. If I died, I was going to anyway. Good thought. I took all this in and did just that.
Waiting for the first transplant didn't seem so bad. I had all this time to prepare for my impending departure. You might say I had consigned myself to the inevitable. NOW,the second was devastating. To say it was devastating is an understatement. To spend 9 years of total freedom, doing things I never dreamed of and then be told I had chronic rejection was enough. The disease and destruction was so fast I found myself wishing I still had Pulmonary Hypertension. After all, it was easier to deal with. To be given soemthing so wonderful as breathing, set goals in life, achieve those goals and then .... You get the picture I'm sure. Oxygen, wheelchairs, gasping for breath, total and utter defeating debilitation. This time was extremely difficult for me to accept. I was NOT ready this time. Please don't take away what I've so recently learned to enjoy!
This is the time when I began to find comfort in so many little things we take for granted. Sitting outside in the morning with a cup of coffee watching the breeze blow through the palms, a light rain on leaves, the calm of a glassy lake. I also began continual conversations with God. I've talked with God all my life, now we were best friends talking about everything. He convinced me to use my every ounce of energy and breath to get out of bed each morning. Take my meds. Eat-when I'd decided breathing was more important. God was my support system, my main support system. Most of my days were spent alone, so God was my only friend and He stopped by to visit all the time. He taught me to look in the mirror every morning, see a face in pain, smile and say "It's gonna be a great day!"
So with each new hip pain, knee pain, whatever new obstacle thrown in my path: I still tell myself this every morning. It works.
By the way ...I still love the small wonders around me. Yes even the rain and cold.
Let's face it... I'm Blessed.
Actually we are all Blessed to be alive and enjoying life's good moments and obstacles. It wasn't that long ago I was told (3 times) I was going to die. Those are words no one should have to hear, especially at 17, or 31, or 45 for that matter.
I actually didn't hear it at 17, my parents did and told me later. So there wasn't much impact. I did know that my life was going to be shorter than most. So I justified it by telling my parents my philosophy:
"If I die old -no one remembers, BUT if I die young, no-one forgets." This was merely a way for me to put this part of my life in perspective, and cover my nervousness.
This death sentence was always pushed up each time I hit a new milestone. When I passed 20 it was pushed to 25, then to 30. I guess back then it was all the doctors had to go on. I remember mentioning to my Mom that turning 30 was difficult enough, geez do they have to put a death sentence on too?
Of course there were hospital visits during all of this. After all, I was a boisterous young adult. Plus I was told to go out and live my life to the fullest. If I died, I was going to anyway. Good thought. I took all this in and did just that.
Waiting for the first transplant didn't seem so bad. I had all this time to prepare for my impending departure. You might say I had consigned myself to the inevitable. NOW,the second was devastating. To say it was devastating is an understatement. To spend 9 years of total freedom, doing things I never dreamed of and then be told I had chronic rejection was enough. The disease and destruction was so fast I found myself wishing I still had Pulmonary Hypertension. After all, it was easier to deal with. To be given soemthing so wonderful as breathing, set goals in life, achieve those goals and then .... You get the picture I'm sure. Oxygen, wheelchairs, gasping for breath, total and utter defeating debilitation. This time was extremely difficult for me to accept. I was NOT ready this time. Please don't take away what I've so recently learned to enjoy!
This is the time when I began to find comfort in so many little things we take for granted. Sitting outside in the morning with a cup of coffee watching the breeze blow through the palms, a light rain on leaves, the calm of a glassy lake. I also began continual conversations with God. I've talked with God all my life, now we were best friends talking about everything. He convinced me to use my every ounce of energy and breath to get out of bed each morning. Take my meds. Eat-when I'd decided breathing was more important. God was my support system, my main support system. Most of my days were spent alone, so God was my only friend and He stopped by to visit all the time. He taught me to look in the mirror every morning, see a face in pain, smile and say "It's gonna be a great day!"
So with each new hip pain, knee pain, whatever new obstacle thrown in my path: I still tell myself this every morning. It works.
By the way ...I still love the small wonders around me. Yes even the rain and cold.
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