Monday, June 29, 2009

Against Medical Advice





There is no doubt in my mind had I not had insurance the hospital would have booted me out when all indications were that I was stabilized from the reaction I had with Copaxone and tests showed that I did not have a heart attack. The only reason they wanted me to stay for further heart tests was because of my family history of heart disease.

When are doctors going to realize a person who lives with a chronic illness know their bodies better than anyone does? Most importantly, chronically
ill people know when they need medical help and are intelligent enough to seek
it when needed. If you are like me, the less I have to seek medical
attention, the better off I am.


Give me a break, do you honestly think I care I had to sign a piece a paper that I was leaving against medical advice because I did not want to stay for a freakin stress test the next morning. The way I saw it the hospital just wanted to get more money from my insurance for an overnight stay...I HATE STAYING IN A HOSPITAL. Did they really think I want to be poked and bothered every four hours when my vital signs were stabled, just to have a stress test the next morning? Hospitals recommending and insisting on unneccesary hospital stays is one of the problems with our health care system.

I experienced my third Immediate Post Injection Reaction after my Copaxone injection. Seconds after pulling the needle out of my thigh and grabbing the cotton ball to stop the blood that oozed from the injection site. A volcano erupted inside my body. It felt as if the medication exploded. I literally felt a burning rush travel up the top half of my body and slowly flow back down to the soles of my feet. My eyeballs rolled backed as my chest tighten with every rapid heartbeat. I was scared out of my mind, I could not breathe, thank God, my husband felt something was wrong and came upstairs to check on me.

As he dialed 911, I prayed for calmness and not to fear what was happening. I knew in my mind it was an IPIR experience and I held on to the belief no one ever died from one. The grip on my chest eased to the point I could breathe a little better. I thought my experience was about to be over until the severe itching and whelps start popping up over my body and a strange taste entered my mouth.

I start cursing living with MS and the medication that caused the hell I was living now. I could not understand why this was happening to me again. I thought IPIR’s were so rare that the odds of me having one again were slim to none. Well, the joke is on me. I was told that when I experienced my first one in 2007, yet I had another one months later in 2008.

On the transport to the emergency room, my tongue felt as if it was swelling and the itching made me want to peel my skin off. The EMT feverously injected an IV in my veins and shot me up with Benadryl. By the time I made it to the ER, I was drowsy and in a better state of mind. Hours later after an infusion of Solu Medrol, my body felt like its regular multiple sclerosis living self. The ER doctor asked how I felt and I told her the truth, she informed me that my test came back good and my vitals were stabled and I could go home after she consult with the ER doctor in charge.

I could have been knocked over by a feather when she came back in and said, "We want to keep you for further tests." "Why!", I asked. She said, "There are other test that they wanted me to take in the morning to check my heart." There was no need for me to stay to take further heart tests the next day, so I refused to stay. I explained to them, "I have a cardiologist and I have been given all required test because of my family history last year in May. You asked how I feel and I told you I feel much better than when I arrived, my vitals are stabled, and the heart enzyme blood work came back indicating all is well, therefore, there is no need for me to stay overnight for further heart testing in the morning."

I kid you not they were trying to put the fear of God in me. They went on and on about the chest pain I had with the IPIR and it was in my best interest to let them perform further testing because of family history. I was getting annoyed with their persistence about staying in the hospital. Why it is medical personnel do not really listen to patients who are in tune with their health situation and body is beyond me. Did they not hear me! When I said, “I recently had the tests they wanted to perform done by my own cardiologist and I will call him first thing Monday morning to follow up on why the wanted me to stay in the hospital.” The last place I wanted to be was in a hospital and my birthday was coming up Sunday, when I knew all was right with me again.

This may sound strange, but I was elated and confused knowing I was not going to die after having an IPIR. I was and still am confused on what to do about a disease-modifying drug to slow down the progression of my multiple sclerosis. Should I continue taking Copaxone? I know Copaxone is working for me because I have not had any new brain lesions and my exacerbations have been less lately during the years I have been taking Copaxone. Unfortunately, the IPIR reactions are worse each time I have one. I am obviously, in that rare percentile that experiences IPIR while taking Copaxone. It is a terrible experience and I do not like going through it, but who is to say I will not have worst experiences on my other three choices of a DMD. I thought about not taking anything at all, but after talking with my Dad. I promised him I would continue taking a DMD for my disease For now, I am going to take some time off from taking my daily injection until I make a decision on what I am going to do.

Anywho, all is well for now and I enjoyed my birthday with my family at home :) I will make a decision soon, but I am leaning towards staying on Copaxone because at least I know what it will do to me unlike the other DMD's.

10 comments:

Anne said...

Hi Debra:

First a disclaimer: Check with you doctor before you do anything I suggest, and if they disagree, then don't do it. LOL

Years ago, it was common practice to give 50 to 100mg of Benadryl (depending on patient's height/weight)with a drug that was known to have high incidence of side effects that resemble anaphalaxsis (which is what you described in your post).

I, myself, cannot take certain drugs for the same reason. There is one antibiotic that I take now but I can't take it without Benadryl about an hour before time.

So ask your doctor if taking 50 to 100mg of Benadryl (or more if he suggests it per your height/weight) about an hour before your shot would help you.

I know too well the fear you were going through during the IPIR experience. If you are still sold on Copaxone (because of your good MRI/lesions results), and not interested in looking into any of the other DMD's, then maybe the Benadryl will help you.

As you know, I don't take any of the DMD's, but I would be the last person to not support your decision to continue with them. We each make our own choices, and I think you and I get along well because we respect that in each other.

Take care and Happy Birthday,
Anne

PS I would have left the hospital too -- they are so gung ho on doing more tests when they see good insurance!

Herrad said...

Hi Deb,

Blimey what an experience hope your Birthday was very good.

Have a good day and take it easy.

Love,
Herrad

Tia's Real Talk said...

Debra!! God is good! I had no idea that the one thing I came here to tell you, you would touch on in your post!! Have you heard of Noni Juice? Well my team is the one who introduced Noni to minorities and we are bringing a fairly new product(since 2005) to the market again.
Monavie has been helping me with my MS and it is said that it fights cancer cells. The crown jewel ingredient is the Acai' berry that has been on Oprah, Fox, CNN, The Doctors and Racheal Ray lost her weight from it. It has the hightest levels of antioxidants found in a fruit today. There are 19 fruits in all 3 juices (let me know if you want to know what they are) One daily serving provides you with 13 servings of fruits and veggies!! Oringal is for the overall healthy person. Pulse is for the heart. It has plant sterols good for cholesterol levels, resveratrol which is good for the cardiovascular system by helping protect blood vessels. Active has glucosamine for flexible joints and fights free radical and helps arthritis. Let me know your city so I can invite you out to a tasting party. You can also go to

www.mymonavie.com/theberryhealthy

for more info on all of the natural juice products. Please share with any and everyone!!!

Denver Refashionista said...

I agree. we know our own bodies best. I think a hiatus from the injections is a good idea. I do not take any DMDs and so far so good. My next MRI is July 12th so I'll let you know how my brain is looking but honestly, as long as I rest and don't do too much I'm ok. I'm glad you got to spend your birthday with your family.

Diane J Standiford said...

Oh, do I know what ya mean. My 1st IPIR scared me to death. By time medicas arrived I had resolved and had to page my neuro to have him tell the medics it was ok to leave me at home. I stayed on Copax another 8 years, then just stopped. I just don't see how that intense heart event is NOT bad for us. A big reason I don't trust MS docs. I was also told would only happen once. For me, that was true but I hear stories like yours all the time. Happy Birthday my MS Sister.

blackwomenblowthetrumpet.blogspot.com said...

Hey there!

I know what you mean...

The hospitals want to run every test known to man when they find out that you have good insurance!!

I think that some hospitals ARE NOT trying to scam the patients and they are trying to avoid any potential issues.

I keep thinking how avoidable Michael Jackson's death was....how they said that he was saying he was not feeling well the night before and they didn't take him to the hospital THEN and in the morning, he looked horrible but they kept him in bed and finally, someone checked on him and he wasn't breathing...

I wonder if he would be alive right now...if ONLY someone had called an ambulance even when it didn't seem necessary...

My point is that even if the hospital decides on what SEEMS unnecessary, they really may be trying to save your life and not trying to hustle money from your insurance...

Blinders Off said...

Thanks for the birthday wishes. Herrad, I had a wonderful day and I have to take a picture to post of the worry dolls my daughters gave me.

Anne,

I was told to get the dissolvable Benadryl to keep on hand.

Tia,

I know someone who lives with MS an drink Noni Juice. I am a little slow at trying something new, but I have been reading about Noni Juice. I will let you know if I decide to try it.

Nadja,

I hope all go well with your MRI. I have been fortunate and not had any new lesions since I have been taking Copaxone injections.

Diane,

Experiencing an IPIR is enough to make anyone stop taking Copaxone. I decided to give it another try starting Monday. Hopefully, I will never experience another one, if I do I probably give up on DMD's for awhile.

BWBT,

In this case the hospital was seeking to get more from my insurance. The test they wanted me to stay overnight to have the next morning can be done at my cardiologist office. I did follow up with my cardiologist and will be seeing him in a week.

Tia's Real Talk said...

Hey lady!

No it's not noni juice. We are the ones who introduced you to noni juice. We are bringing a new juice to the market. Monavie is the name. Go to

www.monavie.com/theberryhealth

and read about the 3 different juices and energy drinks. It helps with everything from weight management, lowering cholesterol, blood pressure, joint and back pain, arteries/blood vessels, fights free radicals and is the highest form of antioxidants found on earth today. It is helping me greatly with my symptoms. Read up on it and I have tons of research info if you ever want it.

Blinders Off said...

Sorry Tia,

I had Noni Juice on my mind. I did not know there was another juice on the market. I will check out the website and get back with you.

Tia's Real Talk said...

Oh thats fine..you had noni on your mind because I informed you that our team introduced minorities to noni and we are doing the same thing again. No one really knows about it. Its been out since 2005 but minorities have yet to hear about it. We are getting the word out!!