IV Treatment Given Incorrectly

[JenniSam]

What is the name of your state (only U.S. law)? Michigan

I have lupus and dermatomyositis/necrotizing myopathy. After trying many drugs and treatments my rheumatologist suggested I try IVIG infusions. After approx a year of trying 3-4 different drugs, this was the only one that worked. The doctors order was: IVIG every month for 2 consecutive days and to be administered for 8-10 hours. Preferably 10 hours. Treatments from November 2010-March 2011 went well. My blood work was the best it’s been since my diagnosis and I was improving overall.

November 2010: Started IVIG infusions. To be given each month, over 2 consecutive days at 8-10 hours each day. 10 hours is preferred.

December 2010 - March 2011: IVIG going well

April 2011: Nurse gave infusion in 4 hours. Nurse said she has other patients that can take the drip in less time and they can’t stay open long enough to drip for 10 hours. 2 days after the treatment I was hospitalized because I was given too much too fast. What the nurse didn’t realize is that every time that drug is shipped I am weighed before the order is put in. This is because the patients weight plays a big factor in how much you can tolerate and how fast. So her other patients may be able to take it faster but they could be twice my size. When I am not on steroids I am normally 115-120 lbs. On Steroids I fluctuate between 130 and 140 lbs.

May 2011: Rheumy spoke with clinic. Clinic agreed to administer as instructed over 10 hours. Chart was not updated, new nurse gave to fast. Was sick again.

June 2011: body rejects medicine no more improvements Now I only get sick after receiving treatment.

July 2011: Had to stop IVIG. Started new med that takes 3 months to get in system. But ultimately did not work for my condition. No improvements all.

Aug-Oct 2011: Complete loss of muscle function. CPK level went from under 1000 and shot up to 14,000 (normal cpk level is around 200). Cannot walk, get out of bed, roll over in the bed, use the restroom without assistance in and out, cook, clean etc… I was hospitalized 2 times in August due to complications with the disease being out of control. I am just now starting to walk again.

The good news is that it seems we just had to wait for the drug to get out of my system and I am able to try IVIG again. Now a nurse comes to my house for 10 hours and to give the IV. I have been back on it since late October 2011 and I am starting to walk again. But from August – October I couldn’t do anything. Just imagine waking up one day and not being able to move. That is basically how it happened and I had to pay someone to do the things I would normally do myself, from getting out of the bed, to cooking, cleaning, grocery shopping, caring for my dog and taking me to tons doctor’s appointments because I was deteriorating so fast. I was in the hospital twice in August for almost 14 days and I had to alter my house tremendously to accommodate being handicapped. I had to have things like ramps put in so my mother could get me in and out of the house for doctors visits. I had to get a wheelchair and now I’ve upgraded to a walker (YAY! What 31 year old is happy about using a walker?). I had to purchase a lift chair and it is the only chair in my home that I can get up from without being pulled up by someone else. I pay people to come in the mornings to get me out of bed and just to do the daily things that I can no longer do. I spoken to a law firm and they say that most won’t take a malpractice case under $80,000 and that litigation is long and costly. I am not seeking $80,000. I have had a tough year when it comes to doctors and I want my out of pocket costs for what I had to buy and services I had to pay for. I dont mind paying my own insurance and health care costs. But I have to draw the line when I have to pay for a someone else to make the same mistake twice.

I thought of pursuing this on my own by sending the clinic a letter asking for compensation and saying that legal action would be my next step. Of course I realize there are no guarantees but my local rheumatologist, the rheumatologist I see at the university of Michigan and the hospital all agree that my rapid deterioration is due to the clinic giving me the drug incorrectly in April and May. Any thoughts or suggestions on persuading the clinic that it would be best to compensate me without going to court?What is the name of your state (only U.S. law)?What is the name of your state (only U.S. law)?What is the name of your state (only U.S. law)?

 

[ecmst12]

I would definitely NOT go sending any letters threatening legal action without medical evidence of a definitive connection between your problems and the medicine being given too fast.

 

[JenniSam]

I have what I think is medical evidence but others can chime in with their opinions. I have the hospital report and a 12 page report written up by the U of M Rheumatologist. She had to present my case to a group of doctors at U of M to solicit help with my case. After the group evaluation, my case was turned over to the neurology department at U of M. The neurologist wrote a very detailed report as well, that includes all my meds, when I was on them, the dosage and my CPK levels at that time. She created a chart as well. My CPK level at that time was checked weekly, now its bi –weekly. The CPK level represents how well a medication is working and (usually) indicates how I feel. The blood work showed great improvement up until that April treatment. Given the frequency of my blood work, I would think that this would provide good historical data of my improvement before the mistake was made, how my health declined after the mistake was made and my improvement now that I get the treatment correctly. In November 2010 CPK was around 10,000. After correct treatments it came down consistently to as low as 700. After the incorrect treatment my CPK went as high as 14,000. Now that I get the IVIG again (correctly) my level is down to 800 as of last Friday. There seems to be correlation between the IVIG being given correctly and the lower CPK. The only significant increase was in April then through October when I could not take the drug. This basically what the doctors reports say as well.

All the reports (hospital, Rheumy and Neurologist) I have state that IVIG treatment was discontinued after it was given too fast and myopathy no longer responds. Recommendation: Stop IVIG and begin cellcept with increased steroid to preserve muscle function.

 

[ecmst12]

What you would need is a medical expert (doctor) to state definitively, and be willing to testify as well, that getting the IVIG more likely than not was the cause of your increased symptoms.

The other question is, after the first time it was given too fast and you ended up in the hospital, WHY did you allow it to be given at the same speed twice more?

 

[JenniSam]

Thanks for your input and helping me think through this.

After my hospital stay, it was given once more incorrectly.

In April I was given the drug too fast day 1 and day 2. You are right, on day 1, I did not question it. On day 2, I did question the nurse. She said I should be fine based on how fast she can give it to her other patients. I took her word for it. I don’t feel any effects from the drug (good or bad) usually until day 4. Day 4 I was sick and was sent to the hospital. Unfortunately, at that time, I did not know all of the things I understand now about being your own health care advocate. Most of what I know now was explained to me after the fact by the neurologist. I trusted the clinic to follow the order the doctors had written up.

In May, my Rheumy called the clinic to confirm they would follow the order as written up and they agreed. I also spoke with the office about it when I scheduled the day and time because they were opening early for me just so I could drip for the full time needed. On day one, I took my Benadryl and as usual it knocked me out. I am given a bag of steroid that drips for one hour before the IVIG and I was asleep when she started the IVIG. The drips always start out slow and they increase it as the day progresses, but it should only be increased so much. When I woke up, I saw how many bottles were done and I called my Rheumy. They slowed it down for the remainder of day 1 and then gave it correctly on day 2.

I can see the April occasion as a mistake… maybe. But the May incident happened because my chart had not been updated to state that I could not be given the drug faster and the conversation with my Rheumy was not noted either. At least, that is the excuse the nurse gave me. It could have been there and she just didn’t follow the orders. All I know is that they knew for sure in May that I could not tolerate the drug too fast.

I will talk with my neurologist about her findings. Her report and chart basically states that the IVIG controls the disease when given correctly. When given too fast, it makes me sick and I have to come off the drug and wait until it is compeletly out of my system before I can resume treatment. When I am off the drug, muscle deterioration is rapid and does not respond to other traditional treatments.