Showing posts with label albuterol. Show all posts
Showing posts with label albuterol. Show all posts

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.
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Wednesday, June 20, 2012

New Hardware

I wondered a few days ago just how much hardware a body can handle before the software  gives up.


This is a photo of my morning and evening routine:

On the left  you see the IV meds I take and on the right the 2 nebulizer treatments .
Now this may not seem like much to you, however upon waking my routine is weight (yuck), blood pressure, temperature, heart rate, pft's, and blood sugar and logging it all in on an Excel spreadsheet. Then 

Then round one of meds, breakfast, morning walk with boys, then round 2 of meds- then all the above before getting ready for work.
This is the picc line for the IV's  that I wrap after the treatment so it  isn't seen at work:
Yeah it hurt and itches like hell, but it's something I need for now. On Friday it comes out and I get a port in my upper right shoulder. Left is already full -a Pacemaker is strategically parked there. They told me the port would hurt about as much as the pacer being put in.. great.. SO that's why the Rx of Oxy..

Along with all this is the emotional  ( I dread to consider the financial) aspect too. That is the part not many see. I'm still remaining positive and refuse any negativity in my life.
And thanks to wonderful -fantabulous friends on FaceBook I'm making it with laughter!
This post was starting out vastly different, then I spoke to a few of those wonderful friends and they had me laughing like a banshee!  

Moral to the story:
The software can handle the hardware as long as it has wonderful caring friends and family.
Have you told your friends how special they are today??
Maybe you should