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.
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Thursday, July 23, 2015
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 :)
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