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 !
Tuesday, September 1, 2015
Wednesday, July 29, 2015
The Fun Begins Anew
I have been off my nebulizer since Thursday night. Per my Coordinator, stay off until we get a new plan together. I will admit, each day has been glorious watching these symptoms slowly disappear. I have more energy than possible, no headache, the horribly bad taste is gone, nausea leaving, and my appetite has returned to the point I once again enjoy cooking !
That is until last night. My cough is slowly returning. It isn't serious, merely constantly annoying and has a mission to interrupt my sleep. I cleared my throat and coughed all night.
I suspected my feeling ill was lack of sleep, that is until my temperature started rising. It isn't super high, but is a definite marker of what is to come.
So, with shivering body, socks, heavy robe, I'm huddled under many blankets, Ozzi at my side hopeful the TV will set up and I can watch my Amazon Prime movie, Hercules. What better way to feel better !!!
All will be better soon, I have faith.
That is until last night. My cough is slowly returning. It isn't serious, merely constantly annoying and has a mission to interrupt my sleep. I cleared my throat and coughed all night.
I suspected my feeling ill was lack of sleep, that is until my temperature started rising. It isn't super high, but is a definite marker of what is to come.
So, with shivering body, socks, heavy robe, I'm huddled under many blankets, Ozzi at my side hopeful the TV will set up and I can watch my Amazon Prime movie, Hercules. What better way to feel better !!!
All will be better soon, I have faith.
Thursday, July 23, 2015
Treating the Whole Patient and Not Merely Organ Specific
I'm not certain if anyone else has had this in their quest for better health. You have a Physician specializing in one specific organ, whether it be Cardiology, Dermatology, Endocrinology , etc. and they can only see and care for that particular part of you. This can be frustrating to say the least.
Or they get so focused on caring for that one part, they can't see what the treatment is actually doing to you, the patient.
In a previous blog post, I mentioned that the Pseudomonas from my right lung is now in my left lung and slowly destroying it as well. I normally do a Combivent nebulizer to open my airways so my Colisin antibiotic can get into the smaller airways to keep everything at bay. It has been well documented for decades, I am NOT an Albuterol candidate. The rapid cardiac response it causes is magnified in me. Xopenex I can tolerate a bit better, but insurance (the bain of our existence) refuses to see when it can be beneficial for a patient. So a combination of Albuterol and another medication is used for this.
After 3 weeks of living with A-fib, I thought the nausea, headache, worsening fatigue among other symptoms was a product of the increased dosage of the Multaq and Metoprolol. One has to admit raising a dosage from 12.5 mg twice a day to 50mg twice a day can be "depressing" literally. I was waking up at 5-6AM and going back for a nap around 11AM until 3PM No appetite and back in bed by 8PM. Clearly not the "I hit the ground running" gal I used to be. So into the Cardiologist I went. I received an IV of Cardizem and within seconds of it starting, I could feel my heart & chest relax and begin to settle. Ahhhh the sensation.... I left the doctor with a happy heartbeat of 64 beats per minute. Still up for me but much better than the 124 I was carrying around.
My Cardiologist mentioned that the Metoprolol would slow me down, but it shouldn't make me feel this bad.
Later in the evening I got my nebulizer ready. Within 4 minutes of starting the Combivent my heart rate sky rocketed ! That rapid cardiac response Albuterol had re-triggered my A-Fib! So I once again mentally prepared myself for the 50 mg of Metoprolol. Wednesday morning it was around 88 beats per minute. I left a message with my Cardiologist and went for my PCP appointment. Yep my life is one doctor after another :) Thankfully my PCP is one who likes to unravel mysteries.. So we started Googling side effects for all my meds... This due to the fact that my blood levels were perfect. I do have Epstein Barr which causes Chronic Fatigue, but with the vitamin regimen I'm on, I shouldn't feel THIS bad.
This search took a bit since I take so many meds. The one thing we discovered- all my worsening health issues were side effects of one medication.... The Colistin antibiotic I use as a nebulizer. I also discovered that not only can it help my lungs with the Pseudomonas, but it can also cause severe lung damage.. Talk about a double edge sword ! While I understand this is the one antibiotic my non-cystic fibrosis Bronchiectasis is sensitive to, I believe we should also watch the side effects.
These side effects are to the point where I should own stock in Tylenol for the never-ending headaches, Fatigue- geez all I can do is sleep, The worst taste in my mouth imaginable leading to no appetite, ringing in my ears enough to drive me insane, plus if not done just after the Combivent there are bronchospasms, shortness of breath (isn't that what we were trying to help?) and hoarseness.
Yesterday these side effects became so pronounced, nothing would help the headache. I had to force fluids, the taste was horrendous and nothing helped, I slept until 4PM made a nice dinner and was too tired to eat much. Then the nausea hit.. I sat on the bathtub for 30 minutes with a facecloth filled with ice on the back of my neck to prevent the inevitable.
I finally had to break into those Oxycodone I swore to never touch in the hopes of headache relief. I hit my pillow at 8PM - even earlier than normal. I was so nauseous I did not do my nebulizer. Instead of waking up at 4AM I drug myself out of bed at 7AM feeling a little better. I am hesitant to pick up my nebulizer. Yes I am a little short of breath, but nothing like yesterday. Yes, I know this is the only way to keep my left lung healthy. But can't there be a happy medium?
Colistin is normally a 30 day on , 30 day off protocol. I was changed to everyday -twice a day and 150 mg each time. I was doing 75 mg twice a day and seemed to tolerate it much better.
I wonder if in the zealousness to stop the infection in my left lung I became toxic to the higher dose of Colistin? My symptoms kept getting worse to the point I was worried this was the beginning of a rapid end.
I will be having yet another conversation with my lung transplant doctor about caring for ALL of me, and not just parts.. I miss Dr. Baz... He looked at the entire patient and involved me in my care. With a heavy heart I wonder if I should seek out a new transplant center. After all I must do what I have to for my survival right?
Disclaimer: These are merely my experiences and thoughts throughout my 24 years of organ transplant life. I am not a negative person, but one who likes to search all sides.My posts are in no way meant to dissuade you from having an organ transplant. If given the chance, I would be 1st in line for another one.... Life is what we make it.. I choose to live mine feeling Blessed each and every second I am here- good bad or otherwise.
.
Or they get so focused on caring for that one part, they can't see what the treatment is actually doing to you, the patient.
In a previous blog post, I mentioned that the Pseudomonas from my right lung is now in my left lung and slowly destroying it as well. I normally do a Combivent nebulizer to open my airways so my Colisin antibiotic can get into the smaller airways to keep everything at bay. It has been well documented for decades, I am NOT an Albuterol candidate. The rapid cardiac response it causes is magnified in me. Xopenex I can tolerate a bit better, but insurance (the bain of our existence) refuses to see when it can be beneficial for a patient. So a combination of Albuterol and another medication is used for this.
After 3 weeks of living with A-fib, I thought the nausea, headache, worsening fatigue among other symptoms was a product of the increased dosage of the Multaq and Metoprolol. One has to admit raising a dosage from 12.5 mg twice a day to 50mg twice a day can be "depressing" literally. I was waking up at 5-6AM and going back for a nap around 11AM until 3PM No appetite and back in bed by 8PM. Clearly not the "I hit the ground running" gal I used to be. So into the Cardiologist I went. I received an IV of Cardizem and within seconds of it starting, I could feel my heart & chest relax and begin to settle. Ahhhh the sensation.... I left the doctor with a happy heartbeat of 64 beats per minute. Still up for me but much better than the 124 I was carrying around.
My Cardiologist mentioned that the Metoprolol would slow me down, but it shouldn't make me feel this bad.
Later in the evening I got my nebulizer ready. Within 4 minutes of starting the Combivent my heart rate sky rocketed ! That rapid cardiac response Albuterol had re-triggered my A-Fib! So I once again mentally prepared myself for the 50 mg of Metoprolol. Wednesday morning it was around 88 beats per minute. I left a message with my Cardiologist and went for my PCP appointment. Yep my life is one doctor after another :) Thankfully my PCP is one who likes to unravel mysteries.. So we started Googling side effects for all my meds... This due to the fact that my blood levels were perfect. I do have Epstein Barr which causes Chronic Fatigue, but with the vitamin regimen I'm on, I shouldn't feel THIS bad.
This search took a bit since I take so many meds. The one thing we discovered- all my worsening health issues were side effects of one medication.... The Colistin antibiotic I use as a nebulizer. I also discovered that not only can it help my lungs with the Pseudomonas, but it can also cause severe lung damage.. Talk about a double edge sword ! While I understand this is the one antibiotic my non-cystic fibrosis Bronchiectasis is sensitive to, I believe we should also watch the side effects.
These side effects are to the point where I should own stock in Tylenol for the never-ending headaches, Fatigue- geez all I can do is sleep, The worst taste in my mouth imaginable leading to no appetite, ringing in my ears enough to drive me insane, plus if not done just after the Combivent there are bronchospasms, shortness of breath (isn't that what we were trying to help?) and hoarseness.
Yesterday these side effects became so pronounced, nothing would help the headache. I had to force fluids, the taste was horrendous and nothing helped, I slept until 4PM made a nice dinner and was too tired to eat much. Then the nausea hit.. I sat on the bathtub for 30 minutes with a facecloth filled with ice on the back of my neck to prevent the inevitable.
I finally had to break into those Oxycodone I swore to never touch in the hopes of headache relief. I hit my pillow at 8PM - even earlier than normal. I was so nauseous I did not do my nebulizer. Instead of waking up at 4AM I drug myself out of bed at 7AM feeling a little better. I am hesitant to pick up my nebulizer. Yes I am a little short of breath, but nothing like yesterday. Yes, I know this is the only way to keep my left lung healthy. But can't there be a happy medium?
Colistin is normally a 30 day on , 30 day off protocol. I was changed to everyday -twice a day and 150 mg each time. I was doing 75 mg twice a day and seemed to tolerate it much better.
I wonder if in the zealousness to stop the infection in my left lung I became toxic to the higher dose of Colistin? My symptoms kept getting worse to the point I was worried this was the beginning of a rapid end.
I will be having yet another conversation with my lung transplant doctor about caring for ALL of me, and not just parts.. I miss Dr. Baz... He looked at the entire patient and involved me in my care. With a heavy heart I wonder if I should seek out a new transplant center. After all I must do what I have to for my survival right?
Disclaimer: These are merely my experiences and thoughts throughout my 24 years of organ transplant life. I am not a negative person, but one who likes to search all sides.My posts are in no way meant to dissuade you from having an organ transplant. If given the chance, I would be 1st in line for another one.... Life is what we make it.. I choose to live mine feeling Blessed each and every second I am here- good bad or otherwise.
.
Sunday, July 19, 2015
Is There Ever A Normal?
In June when my husband looked at me and oh so seriously stated, "Well it is that time of year for you." I wanted to dig out my cast iron skillet and go "Southern" on that mans head. period. I believe my look, said it all though.
True to form, I had an appointment with my Lung Transplant clinic on July1, and was promptly admitted. Though I still wonder why. Yes, I was coughing terribly. Yes, my PFT's were down. But seriously folks, It's that time of year. I have always given myself IVs . I mean who has time to wait for a nurse twice a day? This is my life, and I choose to do them myself.
One of the new Transplant Docs has a wonderful way of making his patients feel secure and safe. Just like Dr. Baz used to. I was feeling so horrible, I fell for it- hook, line and sinker. I agreed to be admitted, start antibiotics and have a bronchoscopy in the morning. I was put on the overflow wing the 8th floor. At first I was hesitant, until I realized these were all the nurses I had when on 11 in the old building ! It was like old home week, we talked, chatted and laughed- well until Dr. Salgado popped in and said I was being moved to 5. Deep depression sets in... My feeling of safeness slowly dissipates.. My nurse Eron, accessed my port and I did not even feel it! That is a huge Hooray for me.
For those of you who have never had a port, it feels like a small nickel size circle under the skin on one side of your chest. This is accessed with a special needle, and many make it feel like they are trying to pin you to the chair when inserting the needle. It never comes out- so my other veins (which are non-existent) get saved. The only down side is, when they change the needle there is no new place to go into. Yep, the needle goes into the same slightly sore spot your old needle just left.
Needless to say, I was only in for one day. I could not wait to leave ! A letter to hospital Administration is in the works. This was the most traumatic experience I can remember. I was discharged with A-fib on July 2 and to this day still have it. This may not seem like much to you, but I had been A-fib free for close to one year and we were decreasing my meds. The stress caused by 2 nurses on 5 started this.Suffice it to say, trauma nurses should not be lung transplant nurses. They should not be required to leave the room of a trauma patient and decompress to care for a transplant patient on the mend.
Enough on that subject. The situation we have fought for 6 years has happened. The "pus" and infection from my right lung has now started settling in my left lung. They should have yanked that trouble causing PITA when I asked years ago ! So now my natural progression will more than likely speed up. I have faced this before, and will again.. Only this time there will be no new transplant - the only light at the end of the tunnel will be final freedom of pain.
So I came home with IV antibiotics, nebulizer again twice a day (which will be continuous) and alot of prayers. My IV was finished on Friday. Yay for a decent shower! So now I am hopeful the A-fib will correct itself. I have gone from 12.5 mg of Metoprolol twice a day to 50mg twice a day. I can barely stay awake as this slows not only my heart rate( which it hasn't as of yet) but the rest of my body as well. Naps are no longer around 1PM, but 11Am lasting until about 5PM. So basically, I have no life except for auditioning for the role of Sleeping Beauty :) This medication also creates nausea and what feels like an intestinal flu but is in reality a side effect. Yes, it is too high a dose for me. I guess the next option will be to shock my heart back into a normal rhythm... They better start convincing now for say 2017 right?
I'm ever anxious to get my body and life back on track and start living again. No this is not a complaint, just stating a mere fact. I have a Bucket List to experience with Ozzi after all- who has recently had a tumor removed from his nose. We are quite a pair in our old age ain't we?
True to form, I had an appointment with my Lung Transplant clinic on July1, and was promptly admitted. Though I still wonder why. Yes, I was coughing terribly. Yes, my PFT's were down. But seriously folks, It's that time of year. I have always given myself IVs . I mean who has time to wait for a nurse twice a day? This is my life, and I choose to do them myself.
One of the new Transplant Docs has a wonderful way of making his patients feel secure and safe. Just like Dr. Baz used to. I was feeling so horrible, I fell for it- hook, line and sinker. I agreed to be admitted, start antibiotics and have a bronchoscopy in the morning. I was put on the overflow wing the 8th floor. At first I was hesitant, until I realized these were all the nurses I had when on 11 in the old building ! It was like old home week, we talked, chatted and laughed- well until Dr. Salgado popped in and said I was being moved to 5. Deep depression sets in... My feeling of safeness slowly dissipates.. My nurse Eron, accessed my port and I did not even feel it! That is a huge Hooray for me.
For those of you who have never had a port, it feels like a small nickel size circle under the skin on one side of your chest. This is accessed with a special needle, and many make it feel like they are trying to pin you to the chair when inserting the needle. It never comes out- so my other veins (which are non-existent) get saved. The only down side is, when they change the needle there is no new place to go into. Yep, the needle goes into the same slightly sore spot your old needle just left.
Needless to say, I was only in for one day. I could not wait to leave ! A letter to hospital Administration is in the works. This was the most traumatic experience I can remember. I was discharged with A-fib on July 2 and to this day still have it. This may not seem like much to you, but I had been A-fib free for close to one year and we were decreasing my meds. The stress caused by 2 nurses on 5 started this.Suffice it to say, trauma nurses should not be lung transplant nurses. They should not be required to leave the room of a trauma patient and decompress to care for a transplant patient on the mend.
Enough on that subject. The situation we have fought for 6 years has happened. The "pus" and infection from my right lung has now started settling in my left lung. They should have yanked that trouble causing PITA when I asked years ago ! So now my natural progression will more than likely speed up. I have faced this before, and will again.. Only this time there will be no new transplant - the only light at the end of the tunnel will be final freedom of pain.
So I came home with IV antibiotics, nebulizer again twice a day (which will be continuous) and alot of prayers. My IV was finished on Friday. Yay for a decent shower! So now I am hopeful the A-fib will correct itself. I have gone from 12.5 mg of Metoprolol twice a day to 50mg twice a day. I can barely stay awake as this slows not only my heart rate( which it hasn't as of yet) but the rest of my body as well. Naps are no longer around 1PM, but 11Am lasting until about 5PM. So basically, I have no life except for auditioning for the role of Sleeping Beauty :) This medication also creates nausea and what feels like an intestinal flu but is in reality a side effect. Yes, it is too high a dose for me. I guess the next option will be to shock my heart back into a normal rhythm... They better start convincing now for say 2017 right?
I'm ever anxious to get my body and life back on track and start living again. No this is not a complaint, just stating a mere fact. I have a Bucket List to experience with Ozzi after all- who has recently had a tumor removed from his nose. We are quite a pair in our old age ain't we?
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 :)
Thursday, June 18, 2015
How Would You Like To Be Remembered ?
Over the last few months, I've witnessed quite a bit of bitterness in the Social Networking Groups and Personal pages of friends. It has me worried. I keep seeing, "I don't want to die waiting". "I can't wait for my transplant so I can get off oxygen". " I need to be transplanted now!" More often than not, I see posts filled with bitterness and anger. Is this how we want to be remembered? Someone who was bitter to the end? Or do we want to be thought of with warmth and thoughts of she smiled to the end...
Think about it....
After working in the medical field for years and witnessing a variety of emotions from patients, I made a solemn vow that the bitterness would not over take me. I would have no regrets. One of the best things my transplant center did was stress...
1. You may not get transplanted.
2. You may not come out at 100%
3. You may come out and still be on oxygen.
4. Live your life NOW
I always kept this in the back of my subconscious.
If I didn't get my transplant, well I died trying and gave it my best- laughing to the end.
If I didn't come out at 100% or on oxygen- I would deal with it. It's better than where I was right?
I was also told to not spend what time I had left pinning all my hopes on a transplant. What was left of my life would fade away without me realizing it. I hope others take that to heart. Too many times we focus on this pain or that ache and not living life.
Life is meant to live- no matter your limitations.. Enjoy your family outings even if from a chair. You are there.. Your family is overjoyed you are there too.
Those birthdays are so important. Many parties show me celebrating with the birthday person on oxygen. I have a wedding photo while on oxygen. This is my life and my memories !
I cannot let anyone take those from me, or not experience them due to bitterness. Refuse to let it consume you.
Point to ponder... If you pin every hope and dream on a transplant- what happens if you don't come out 100% ?
Think about it....
After working in the medical field for years and witnessing a variety of emotions from patients, I made a solemn vow that the bitterness would not over take me. I would have no regrets. One of the best things my transplant center did was stress...
1. You may not get transplanted.
2. You may not come out at 100%
3. You may come out and still be on oxygen.
4. Live your life NOW
I always kept this in the back of my subconscious.
If I didn't get my transplant, well I died trying and gave it my best- laughing to the end.
If I didn't come out at 100% or on oxygen- I would deal with it. It's better than where I was right?
I was also told to not spend what time I had left pinning all my hopes on a transplant. What was left of my life would fade away without me realizing it. I hope others take that to heart. Too many times we focus on this pain or that ache and not living life.
Life is meant to live- no matter your limitations.. Enjoy your family outings even if from a chair. You are there.. Your family is overjoyed you are there too.
Those birthdays are so important. Many parties show me celebrating with the birthday person on oxygen. I have a wedding photo while on oxygen. This is my life and my memories !
I cannot let anyone take those from me, or not experience them due to bitterness. Refuse to let it consume you.
Point to ponder... If you pin every hope and dream on a transplant- what happens if you don't come out 100% ?
Tuesday, June 9, 2015
Ozzi's Grand Adventure - Cocoa Beach
Cocoa Beach is soooo dog friendly, we (Mommy & me) thinks it's awesome !
Yesterday I got to ride with everyone to Ron Jon Surf Shop. On the way we rode through the cruise terminals so the girls could see the big ships. .. wow ! A cruise would be so cool, but I think I'd miss rolling in the soft grass too much.
Mommy was walking me around while Dad & the girls shopped. Ron Jon is a nice place to walk. Lots of shady areas and tables. I drug mommy from door to door searching for Dad,when a nice lady who works there came out and told us they were dog friendly! ! Can you imagine ? A place this huge loves dogs ?? I did want to let her know I was not a dog-but mommy's boy- but mommy was soo happy I didn't want to ruin it.
Off we went inside.... it was overwhelming.
I had to see everything! Ohhhh and those stairs. . I had to show mommy & daddy I could climb them all! Dad had to take me though, the stairs caused mommy to have a ard time catching her breath. Once mommy took over, she let me walk everywhere.
Oh! And Customer Service even had a doggy treat for me. .. I wanna come back here.
Those stairs kept calling my name... they were so fun.. Mom & Dad took me on my 1st elevator ride there too...
Outside I got my picture taken with the girls. Aren't they the cutest beach bums ?
Oh and mommy too.
Then we were off to find lunch! My head out the window,revelling in the "Peppermint Patty Sensation " as mommy calls it. I know she really loves me when she has her window down for me. You see, she really needs the air conditioning to breathe easier. We chose Burger King, but took it back to the Motorhome because they had no outside seating. Mom said if I can't eat with them,we don't need to be there.
Back home and she gave me half her burger. She shares all the time.
Next a nap with Mommy, a walk to the camp store for another treat, then dinner. Dad took us in the car so we could see the Disney Dream leaving. Mommy really misses when she used to work for Disney Cruise Line, and sailing.. she said it was so rewarding and relaxing. She loves making others happy. I'm so lucky it was her front door I was left at.
Tomorrow is the Ozzi & Mommy show ! We stay home and walk, cook pulled pork and maybe an ice cream sundae from the camp store ! Dad & the girls are gonna be astronauts,whatever that is. They better be home for dinner though !
Oz out fur now...
gotta keep walking... I promised Mom I'd live forever, (whispers ) and I'm gonna make sure she does too 🐶
Yesterday I got to ride with everyone to Ron Jon Surf Shop. On the way we rode through the cruise terminals so the girls could see the big ships. .. wow ! A cruise would be so cool, but I think I'd miss rolling in the soft grass too much.
Mommy was walking me around while Dad & the girls shopped. Ron Jon is a nice place to walk. Lots of shady areas and tables. I drug mommy from door to door searching for Dad,when a nice lady who works there came out and told us they were dog friendly! ! Can you imagine ? A place this huge loves dogs ?? I did want to let her know I was not a dog-but mommy's boy- but mommy was soo happy I didn't want to ruin it.
Off we went inside.... it was overwhelming.
I had to see everything! Ohhhh and those stairs. . I had to show mommy & daddy I could climb them all! Dad had to take me though, the stairs caused mommy to have a ard time catching her breath. Once mommy took over, she let me walk everywhere.
Oh! And Customer Service even had a doggy treat for me. .. I wanna come back here.
Those stairs kept calling my name... they were so fun.. Mom & Dad took me on my 1st elevator ride there too...
Outside I got my picture taken with the girls. Aren't they the cutest beach bums ?
Then we were off to find lunch! My head out the window,revelling in the "Peppermint Patty Sensation " as mommy calls it. I know she really loves me when she has her window down for me. You see, she really needs the air conditioning to breathe easier. We chose Burger King, but took it back to the Motorhome because they had no outside seating. Mom said if I can't eat with them,we don't need to be there.
Back home and she gave me half her burger. She shares all the time.
Next a nap with Mommy, a walk to the camp store for another treat, then dinner. Dad took us in the car so we could see the Disney Dream leaving. Mommy really misses when she used to work for Disney Cruise Line, and sailing.. she said it was so rewarding and relaxing. She loves making others happy. I'm so lucky it was her front door I was left at.
Tomorrow is the Ozzi & Mommy show ! We stay home and walk, cook pulled pork and maybe an ice cream sundae from the camp store ! Dad & the girls are gonna be astronauts,whatever that is. They better be home for dinner though !
Oz out fur now...
gotta keep walking... I promised Mom I'd live forever, (whispers ) and I'm gonna make sure she does too 🐶
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 ...
Tuesday, May 26, 2015
Acceptance -OR How To Survive In This Crazy World
Over the last few months I've read many posts on Social Media about others health issues, life struggles, etc. It pains me to "feel" the heartache I sense coming through their words. I met a sweet lady, newly to the possible transplanted community recently, she stated she just finished reading my blog and wasn't sure if she could go through all I have.
First, let me say .... Not everyone will go through all I have. With the advances in medicine today, many will soar through their health issues with flying colors. I have met some of these new trail blazers and they warm my heart. Those of us with more than 15 years behind us (24 here) were the trail blazers of our day too. We helped spark that debate of, "What makes them thrive?" How does patient A live for 20 years with a transplant, while patient B rejects within 2 years?
I believe it can be summed up into two words: Acceptance and Overcome
Let's look at acceptance.
I accepted in 1977, I may not live to see 20 years old... I overcame it.
I accepted that in late 1989, I was given 12 months to live... Back then a physician had to give you this "death sentence" for you to be listed for a transplant.. I overcame it. On that 365th day I woke to a sense of , "is this my last" then I thought NO it will not be.
I accepted when my transplant team told me, this could be the last few years of my life- go enjoy it.
I cried over things I may never see again: the wind in the Palm Trees, the ocean, etc. BUT I overcame it by NOT falling into a mind trap of doing this everyday. I gave my "crying time" a priority of one hour once a month. The rest was devoted to my life. Each month I took my "woe is me" box from the shelf, opened it, had a good cry, closed it- and continued my life.
Just before Y2K, I was told I had chronic rejection. I was floored. Back then, it was a death sentence to us all. I cried for a few hours, then hit the Internet.. I researched, I read, and I researched more. My team gave me a game plan of what needed to be done. I accepted it. This game plan was my light at the end of the tunnel. It was rough.. It took all the strength and will power I had in me. BUT I DID IT! I learned I am stronger than I ever imagined, and more importantly I learned how to draw on that strength. We stopped the rejection... but...
I was refused a 2nd transplant....
I did not get depressed- I went into action. I contacted EVERY lung transplant center in the nation - and some were not so nice to me either. I found one who would evaluate me ! My new center saw a determination in me that my first one did not. I did everything that was asked of me.Limited breathing capacity, on oxygen (again), and knowing I would need a new kidney after my lungs were re-transplanted. Each time I was rushed in to the hospital, my Dr would give me a game plan of what needed to be done, I would reply "OK" . He knew beyond a shadow of a doubt, I was in 150%. I never asked how I would feel, if it would hurt, just "when can we start".
I overcame... I got my new lung, and stayed on a respirator for an additional week to give my kidneys a rest.
My next Acceptance was needing a kidney transplant. I did all they asked- except - accept that I would need dialysis. I researched... I had 3 pages of food to avoid that I created. Orange highlights had Potassium, Pink had phosphorus and green had both. I severely restricted my diet- never got dialysis... I overcame.. The thought of a 16 gauge needle in my arm gave me all the determination I needed.
If you have read most of my blog, you will remember that last year 2014 was not a good year for me. My right lung from the original transplant is becoming a little bothersome. My transplant team basically sent me home with the statement, there is nothing more we can do. I took this as being sent home to die. That is NOT being depressed. That is a call to action! Within 3 months I was back to my original strength, walking twice a day, swimming, and enjoying life within my boundaries. I asked one of my team if they had any idea of how long I had. I secretly wanted to prove them wrong :) He replied with anyone else I would estimate- you- we have no idea. That made my day !
I accepted this too... And I am overcoming it.
I have recently lost another beloved pet.. My Toy Fox Terrier CC (Capt Chaos) has left me. The loss of both "boys" has been hard. Dibs was due to an enlarged heart and CC to kidney failure. Both of which I can relate to. I still have my Ozzi with me. Though we have a deal- he will live forever as long as he is the only dog. You see, he thinks it's good being the king :)
This is not to say my life is all peaches and roses. I have a new regimen I follow to keep my right lung from affecting my left. I know I can still exercise, Dr. Baz taught me that when I was dying for a lung transplant. I can surely do it now. As my right lung wastes away, I can make sure the rest of me stays as healthy as possible. I will not give in ! That is not in my chemical, physical, or mental make up. It is not a fun journey at times, but it is still my journey to live. I intend to make it a grand adventure !
I have stated many times in my life, I CANNOT AFFORD THE LUXURY OF A NEGATIVE THOUGHT. This is more true than you will ever know, and has kept me from depression.
So... Accept and Overcome.. No matter what you face in life.. If you are diagnosed with Diabetes, Heart disease, or any other ailment- Accept it Now. So you can Overcome it and triumph ! For to not accept can only lead to more health issues down the road.
I would like to take a moment and thank Maher Baz MD for all he taught me through his time as my transplant physician. It is the inner strength, he showed me I had, that I now draw on. I think back to his teaching during the wait for my 2nd lung transplant and the quiet confidence I felt he had for me to overcome. I will always attribute my life and how I choose to overcome my obstacles to him.
First, let me say .... Not everyone will go through all I have. With the advances in medicine today, many will soar through their health issues with flying colors. I have met some of these new trail blazers and they warm my heart. Those of us with more than 15 years behind us (24 here) were the trail blazers of our day too. We helped spark that debate of, "What makes them thrive?" How does patient A live for 20 years with a transplant, while patient B rejects within 2 years?
I believe it can be summed up into two words: Acceptance and Overcome
Let's look at acceptance.
I accepted in 1977, I may not live to see 20 years old... I overcame it.
I accepted that in late 1989, I was given 12 months to live... Back then a physician had to give you this "death sentence" for you to be listed for a transplant.. I overcame it. On that 365th day I woke to a sense of , "is this my last" then I thought NO it will not be.
I accepted when my transplant team told me, this could be the last few years of my life- go enjoy it.
I cried over things I may never see again: the wind in the Palm Trees, the ocean, etc. BUT I overcame it by NOT falling into a mind trap of doing this everyday. I gave my "crying time" a priority of one hour once a month. The rest was devoted to my life. Each month I took my "woe is me" box from the shelf, opened it, had a good cry, closed it- and continued my life.
Just before Y2K, I was told I had chronic rejection. I was floored. Back then, it was a death sentence to us all. I cried for a few hours, then hit the Internet.. I researched, I read, and I researched more. My team gave me a game plan of what needed to be done. I accepted it. This game plan was my light at the end of the tunnel. It was rough.. It took all the strength and will power I had in me. BUT I DID IT! I learned I am stronger than I ever imagined, and more importantly I learned how to draw on that strength. We stopped the rejection... but...
I was refused a 2nd transplant....
I did not get depressed- I went into action. I contacted EVERY lung transplant center in the nation - and some were not so nice to me either. I found one who would evaluate me ! My new center saw a determination in me that my first one did not. I did everything that was asked of me.Limited breathing capacity, on oxygen (again), and knowing I would need a new kidney after my lungs were re-transplanted. Each time I was rushed in to the hospital, my Dr would give me a game plan of what needed to be done, I would reply "OK" . He knew beyond a shadow of a doubt, I was in 150%. I never asked how I would feel, if it would hurt, just "when can we start".
I overcame... I got my new lung, and stayed on a respirator for an additional week to give my kidneys a rest.
My next Acceptance was needing a kidney transplant. I did all they asked- except - accept that I would need dialysis. I researched... I had 3 pages of food to avoid that I created. Orange highlights had Potassium, Pink had phosphorus and green had both. I severely restricted my diet- never got dialysis... I overcame.. The thought of a 16 gauge needle in my arm gave me all the determination I needed.
If you have read most of my blog, you will remember that last year 2014 was not a good year for me. My right lung from the original transplant is becoming a little bothersome. My transplant team basically sent me home with the statement, there is nothing more we can do. I took this as being sent home to die. That is NOT being depressed. That is a call to action! Within 3 months I was back to my original strength, walking twice a day, swimming, and enjoying life within my boundaries. I asked one of my team if they had any idea of how long I had. I secretly wanted to prove them wrong :) He replied with anyone else I would estimate- you- we have no idea. That made my day !
I accepted this too... And I am overcoming it.
I have recently lost another beloved pet.. My Toy Fox Terrier CC (Capt Chaos) has left me. The loss of both "boys" has been hard. Dibs was due to an enlarged heart and CC to kidney failure. Both of which I can relate to. I still have my Ozzi with me. Though we have a deal- he will live forever as long as he is the only dog. You see, he thinks it's good being the king :)
This is not to say my life is all peaches and roses. I have a new regimen I follow to keep my right lung from affecting my left. I know I can still exercise, Dr. Baz taught me that when I was dying for a lung transplant. I can surely do it now. As my right lung wastes away, I can make sure the rest of me stays as healthy as possible. I will not give in ! That is not in my chemical, physical, or mental make up. It is not a fun journey at times, but it is still my journey to live. I intend to make it a grand adventure !
I have stated many times in my life, I CANNOT AFFORD THE LUXURY OF A NEGATIVE THOUGHT. This is more true than you will ever know, and has kept me from depression.
So... Accept and Overcome.. No matter what you face in life.. If you are diagnosed with Diabetes, Heart disease, or any other ailment- Accept it Now. So you can Overcome it and triumph ! For to not accept can only lead to more health issues down the road.
I would like to take a moment and thank Maher Baz MD for all he taught me through his time as my transplant physician. It is the inner strength, he showed me I had, that I now draw on. I think back to his teaching during the wait for my 2nd lung transplant and the quiet confidence I felt he had for me to overcome. I will always attribute my life and how I choose to overcome my obstacles to him.
Friday, April 3, 2015
The Joys Of Using A Nebulizer
I've kept in the back of my mind that I need to blog... But as always LIFE gets in the way.
Today I wanted to add a little humor .. Only lung patients will understand the basis of my blog.
When we say we are nauseous from our nebulizer, many think reguar run of the mill nauseau.
Not a chance ! This is one of those "read between the lines" sort of thing. You know, something we just cannot explain, and others would never think it actually happens.
So without further delay, I give you my meaning of :
Nebulizer Nauseau
That undeniably nasty feeling one gets when doing a nebulizer treatment (breathing) to open up airways. Medicines such as Albuterol or Xopenex.
The entire body inside and out jitters so ferociously the stomach is thrown into an upheaval and hence- minor nauseau begins.
But oh my friends, it does not stop there... Oh ! if ony life were so kind..
The first nebulizer treatment is followed by a second treatment. Usually an antibiotic or saline solution to "break up" mucous . Not just any mucous either.. This is thick, stick to your airways mucous. The kind that refuses to move, no matter how many times you chokingly cough, eyes water, etc.
This triggers a cough where all one can do is hang your head over a can and pray it happens fast !
Usually not the case.. You cough, and you cough, and you cough. This stuff is moving but even a tortoise could go faster. You feel it at the back of your tongue and wish- "Just move !" As it ever so slowly moves it's way out- it leaves that wonderful taste all over your taste buds.. This triggers more heaves.. Yep I never said it was easy.
At this point the jitters combined with the cough & horrid taste have made your stomach do a complete flip. It is now following the mucous on the way up..
You now have full blown
Nebulizer Nauseau
No cure, No relief (becasue you'll only cough more)
Oh! And keep that toothbrush handy... You'll wear those out in record time ;)
Today I wanted to add a little humor .. Only lung patients will understand the basis of my blog.
When we say we are nauseous from our nebulizer, many think reguar run of the mill nauseau.
Not a chance ! This is one of those "read between the lines" sort of thing. You know, something we just cannot explain, and others would never think it actually happens.
So without further delay, I give you my meaning of :
Nebulizer Nauseau
That undeniably nasty feeling one gets when doing a nebulizer treatment (breathing) to open up airways. Medicines such as Albuterol or Xopenex.
The entire body inside and out jitters so ferociously the stomach is thrown into an upheaval and hence- minor nauseau begins.
But oh my friends, it does not stop there... Oh ! if ony life were so kind..
The first nebulizer treatment is followed by a second treatment. Usually an antibiotic or saline solution to "break up" mucous . Not just any mucous either.. This is thick, stick to your airways mucous. The kind that refuses to move, no matter how many times you chokingly cough, eyes water, etc.
This triggers a cough where all one can do is hang your head over a can and pray it happens fast !
Usually not the case.. You cough, and you cough, and you cough. This stuff is moving but even a tortoise could go faster. You feel it at the back of your tongue and wish- "Just move !" As it ever so slowly moves it's way out- it leaves that wonderful taste all over your taste buds.. This triggers more heaves.. Yep I never said it was easy.
At this point the jitters combined with the cough & horrid taste have made your stomach do a complete flip. It is now following the mucous on the way up..
You now have full blown
Nebulizer Nauseau
No cure, No relief (becasue you'll only cough more)
Oh! And keep that toothbrush handy... You'll wear those out in record time ;)
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