Ivy Shapiro - Becoming a Patient Advocate

 

                                                  From Patient to Patient Advocate

 

 

From November 2000 until about June 2005 I was in out of the hospital more times than I can count for “catastrophic asthma”, syncope, slow gastric motility, and unexplained autoimmune issues. Finally, in 2005 I found both a rheumatologist and pulmonologist who gave me medications to take at home during flares of symptoms (high dose prednisone, nausea medications, antispasmodics for the stomach, and muscle relaxants). They both told me to avoid hospitals unless it was absolutely necessary.

The only thing I was given in the hospital was high dose IV steroids, which ended up making me sicker, for longer, and bags of fluids which did not help my autonomic symptoms at all; in fact, they made some of them worse.

This worked for quite a while, and I was able to avoid going in-patient for years…until recently. My neurologist suggested a medication as a “last resort” to treat my syncope (fainting issues)…and it caused such a severe reaction that despite trying for three days to treat my symptoms at home, I ended up in the hospital on March 9, 2013.

I figured that since ALL my specialists were there, I would receive the best care possible, especially since their neurologist prescribed the drug that put me in that position. I was wrong in so many ways.

The ER physician promptly heard my strider and treated that first (which was understandable); with a breathing treatment and high dose solu-medrol…although he did listen when I asked for the one with NO preservatives, since I am allergic to the inactive ingredients in the regular medications given. Since I was unable to speak, my Mom spoke for me, and described what happened the days before…the fainting, muscle spasms that looked like I was having a seizure (which NEVER happened before), and raising my prednisone up to 60 mg on my own, which did not help consistently. The ER doctor promptly called in the neurology resident consults, pulmonary resident consults, and admitted me right away (although that process took hours longer than expected).

Not ONE resident laid hands on my neck or back, despite me or my mom telling them ALL that I was having such horrible pain in my neck and back. I could barely turn my head, the pain was so severe.

The neurology resident even did a test in the ER that uses a metal instrument to ask whether you feel cold on both limbs…I felt no cold on my right arm, but I did feel it on my left. She did NO follow up test, and laid no hands on my neck or back to feel the spasms that were clearly showing through my skin.

The resident hospitalists disagreed with the pulmonary doctors about how to lower my prednisone, did not read ANY of my notes from my regular physicians that I have been seeing for eight years, which describe how delicate my health has become over the years…and the fact that I live have lived on 15 mg of prednisone for years.

The first person to lay hands on my neck was a nurse, because I kept complaining , where he SAW the muscles on my right side popped out, where my left side was pliable; my right side was tight and knotted up. 

Because the hospitals do NOT list inactive ingredients on ANY of their medications, because they only carry generics, the resident and I sat with MY tablet on rxlist.com and went over each medication that might be right for me to release the spasms.  He acknowledged that the spasms were half of my problem, at that point, and the reason I kept needing high dose IV solu-medrol every 6 hours.  The hope was that if the spasms that went from my lower back and wrapped around my throat released, we could finally lower the solu-medrol.

We agreed on using IV valium to release the spasms, as that is what it is used for: neuromuscular spasms.  He authorized only one low dose and then see how I did in the morning.  The one dose seemed to help, but by morning, the spasms were back, so the hospitalist in charge of my care agreed to give me IV valium every 6 hours, at a low dose, in the hopes of breaking the spasm.  In the middle of night, the IV valium that was ordered was somehow deleted by the pharmacy from the computer system. Not one nurse could get a hold of the resident on call…so I went three and a half hours with NO antispasmodic. 

I was told in the morning that the hospital ran out of the IV medication, and should have been given oral, but that did not happen.  When I was given the oral medication in the morning, it did not work at all.  Finally, hours later, when the spasm cycle started again, the hospital “found” one more dose of IV valium for me, which was only after my Mom went to the patient advocate and told her all about what was going on with me and the treatment I was receiving by the multitude of specialists. They still ended up releasing me 20 minutes after giving me the oral valium, not giving me any time to see if it would help. 

I was sent home in the same pain cycle I came in with…the only problem they “fixed” was my breathing.  They sent me home on oral prednisone, but a taper that my pulmonologist was horrified when he reviewed a few days later…knowing my fragile state.  

My pharmacist and rheumatologist came up with giving me liquid valium to help relieve some of the neuromuscular spasms, as the pills were not helping at all. 

I am still waiting to see if I can get brand name chemotherapy approved, since the generic has inactive ingredients I cannot take, and I have tried the entire immunosuppressant and failed.  The lowest dose of prednisone I am allowed to lower to without an immunosuppressant medication is 20 mg…a very high dose for a 32 year old woman. I wasn’t even formally diagnosed with SLE until I was 30 years old, because I was treated for ten years breathing issues, then gastroparesis, and autonomic dysfunction.  I was told it was more about “quality of life” then anything else.  I am waiting for my “quality of life” to come back after this hospitalization. 

This is the first hospitalization where they knew the problems, and were unwilling to fully treat the issues.  If my Mom and I weren’t my advocates, I am not sure I would have made it out of the hospital alive.

                Addendum:  I have been on the immunosuppressant for two full months now. Neoral seems to be working with helping me lower my prednisone level back down to my “normal” 15 mg dose.  I am now working on lowering the muscle relaxant that was given in such high doses in the hospital.  The doctors sent me home with such high doses that I now am slowly tapering that medication. 

Due to tapering the muscle relaxant, my autonomic dysfunction flared up, a few nights ago and I fainted in the middle of the night, and I got a concussion…my first:  scary, to say the least.  So although the hospital stay did not kill me, the aftereffects have definitely had a negative impact on my health months later.