I have been regularly berating myself for not posting, however once again why post if it's negative. I've been in that mood of "just nothing to say" for awhile now. The day to day struggle can wear a person down, and reminding myself to just get up and do it, doesn't always work. The mind is a powerful thing when it does not want to budge.
After discovering I was experiencing every side effect from long term use of Colistin, I have been changed to a different inhaled antibiotic. I am now using Amikacin, and it was amazing the first 3 weeks ! I had no cough, I was sleeping ALL night and my energy returned. Sadly so did an excruciating earache. Not just the ear, this extended all the way down my neck - ear canal- type of ache. Nothing worked. I then discovered in rare circumstances it can cause hearing loss....
Hmmmm choose between hearing or having my lungs.. Difficult choice huh? I stopped the Amikacin for a week,, and the cough returned with a vengeance. Yes , even to coughing so voraciously I lost my breakfast in the mornings. We decided to try once a day and see if kept the infection at bay. It did.. Well until December, when the nebulizer paralyzed my vocal cords... Yes ... completely.. I had no .. NO voice.. and it was painful to try and talk.
Eleven days in the Florida Keys in relative quiet. I guess my husband handled it quite well ;)
It was still the best and warmest Christmas to date. We played with a family of Manatee that were residents in the marina, and basically enjoyed the sunshine. My neice and her family came to visit for a day, being stationed in Key West, made Christmas away from family, better because there was family. Went into Key West for a day and Ozzi discovered the famous Key West Roosters ! We tried to visit again and after finding NO parking chose to go back to the campground.. Money saved-right ?
Ten days on Cipro for Diverticulitis caused me to once again stop the Amikacin. I had severe Vertigo and didn't need to give it anymore help. Now it is with regret, that I go back on schedule with the nebulizer, I feel the need to fight this infection once again. I will admit, the freedom of being away has been such a heavenly relief..
For now.... Back to the grindstone.... Well until the earache retuns again anyway..
Life is a series of things we simply don't want to do... Do them anyway.. It matters ..
Showing posts with label side effects. Show all posts
Showing posts with label side effects. Show all posts
Tuesday, March 1, 2016
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.
.
Tuesday, January 14, 2014
Retinal issues .
If you've been following my blog, you may remember a few years ago I had a retinal occlusion in my left eye that was hemorraging. I got shots in that eye and to this day still feel reminiscent that I was somehow auditioning to be a victim on the show "Criminal Minds".
I stress with each check up I'll once again hear "you need another shot". Today was another reprieve, however the EpiRetinal membrane has gotten a little bigger. These membranes eventually cover the retina and vision is distorted, blurred, and eventually lost. Surgery can remove the membrane, but my specialist feels I wouldn't have a "marked" improvement. So I chose to wait until it would be a marked improvement in my vision.
Yesterdays CT Scan showed my thyroid has gotten larger, and is pressing on my trachea. This could also be another reason for my coughing until I choke. More 5o come on that as I know.
You may be thinking "what else?" Believe me, I've asked myself that before too.
When I say my health care is a full time job, I mean it !
BUT. .. I am still here. I am still fighting. I still have alot to give.
I knew 24 years ago, and still agreed to be listed for that transplant. The overwhelming thoughts of a life off oxygen, no wheelchair, and the ability to breathe make this journey more than worth it.
Remember to always be thankful for what you have- good, bad, or otherwise for the alternative for me was to not be here at all to experience this life.
Grab life with both hands, stand strong and hold on tight. It's gonna be one helluva great ride !
I stress with each check up I'll once again hear "you need another shot". Today was another reprieve, however the EpiRetinal membrane has gotten a little bigger. These membranes eventually cover the retina and vision is distorted, blurred, and eventually lost. Surgery can remove the membrane, but my specialist feels I wouldn't have a "marked" improvement. So I chose to wait until it would be a marked improvement in my vision.
Yesterdays CT Scan showed my thyroid has gotten larger, and is pressing on my trachea. This could also be another reason for my coughing until I choke. More 5o come on that as I know.
You may be thinking "what else?" Believe me, I've asked myself that before too.
When I say my health care is a full time job, I mean it !
BUT. .. I am still here. I am still fighting. I still have alot to give.
I knew 24 years ago, and still agreed to be listed for that transplant. The overwhelming thoughts of a life off oxygen, no wheelchair, and the ability to breathe make this journey more than worth it.
Remember to always be thankful for what you have- good, bad, or otherwise for the alternative for me was to not be here at all to experience this life.
Grab life with both hands, stand strong and hold on tight. It's gonna be one helluva great ride !
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