Oceans of Lemonade

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Oceans of Lemonade - By: Shari

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Summary:

A near-death experience and a misdiagnosis motivate a patient to become an advocate

Story:

We are all aware of the expression about what to do when life gives you lemons. I can undeniably and unequivocally say that, with the help of my family and friends, I was able to turn lemons into lemonade – oceans of it.

Six years ago, this was not the case; I suffered from ruptured esophageal varices. (Varices, varicose-like veins that form in the esophagus because of restricted blood flow to the liver, are a symptom of cirrhosis.) I was unaware I was HCV-positive.

On a November morning, I was fighting what I thought was a bout of stomach flu accompanied by heavy vomiting; it had never occurred to me that I was rapidly losing blood. Breathing difficulties and weakness forced me finally to relent and allow my husband, Jeff, to take me to a hospital in New York City. My memory fades, but upon arrival, according to my husband, “all hell broke loose.”

The outcome of the ruptured varices was nearly fatal in my case. I required 13 transfusions to replenish the blood I had lost. I lapsed into a coma, and doctors advised my family that my survival was in serious doubt. Although they banded the ruptured varices in my esophagus, they held little hope that more vessels would not rupture and cause further bleeding.

My condition deteriorated rapidly. I developed pneumonia from intubation (the use of a tube for respiratory issues common with comatose patients), and high fevers persisted. I was incorrectly diagnosed as an alcoholic, and my varices were presumed to be caused by alcohol consumption. Had it not been for my strongest personal advocate, Jeff, and his own awareness about HCV, a correct diagnosis may not have surfaced. Strong regimens of antibiotics were administered, and the initial banding procedure did stop further bleeding. Two weeks after I was admitted to the hospital, I came out of the coma.

Once home, my ability to remain of sound mind diminished daily. A local gastroenterologist, recognized these signs as classic hepatitis C manifestations. His quick action to send me for transplant evaluation at Mount Sinai Hospital proved to be correct. It was agreed by the evaluation team that I needed to be placed on the liver transplant list.

Some lemonade

Four years after being listed for a transplant, and after much consideration by my doctors, it was determined that I could try interferon/ribavirin treatment.

Only after I was seen by immunologists, endocrinologists, pulmonologists and ophthalmologists, and had a series of lab tests ordered by each of them, did I finally get approval to start treatment.

Warnings put me at serious risk for liver failure, yet I would not be deterred. I felt confident in knowing that, because I had genotype 2b, the 52-week treatment of Pegasys/Copegus increased my chances of being virus-free. My treatment began in October 2004.

Lab work was done weekly; my white blood counts dropped and my platelets dropped, and reducing the treatment dosage was considered. So, levels read low, but they remained stable. At week six, a PCR (viral load test) proved the virus had taken a hike. I was undetectable, and it felt great.

I needed to persevere, and I needed focus. If I could be misdiagnosed at a sophisticated, state-of-the-art hospital in New York City, I held little hope that others did not share my plight, especially those in rural areas where hepatitis C and stigma coexist at their worst.

HCV advocacy was not new to me, but never had it become so clear that in my suburban community, and in the state of New York, the need for HCV public education was sorely needed.

Status C Unknown Inc. (SCU) was born while I was on treatment. I built our Web site having never attempted prior Web design – this during sleepless periods and when my side effects were at their worst. SCU provided me with an agenda and sanity.

Had it not been for the strength of my family and their never-wavering support – and my nurse practitioner, Deborah Lupo – I would not have been able to complete the 52 weeks of treatment.

Had it not been for the strength and support of my coworkers, SCU would not be the successful New York hepatitis C awareness organization that it is today. Visit www.statusCunknown.org for more information about our events and advocacy.

More lemonade

I have achieved SVR (Sustained Virologic Response) and have been this way for 10 months. As of March 31, I am no longer listed on the UNOS transplant list. I must have yearly endoscopies and liver scans at six-month intervals because I have small growths on my liver. They have not changed in size, and I remain ever hopeful. The director of Mount Sinai Adult Transplant Center declared me a success story. I don’t think he can imagine how successful and healthy I truly feel.

As I’ve said many times, for Jeff and my sons, I fought the hard fight. My story is one of victory. I love my mom and dad – the strong octogenarians – and my siblings for their unrelenting support and for accompanying me to endless doctor appointments. I will never forget my most loyal treatment companion, my dog Mozart, who joined me for daily naps and always listened when I complained.

Without all of these people in my life, I would never know true success. But most important, I would never know how to make lemons into lemonade – oceans of it.

http://www.hepatitismag.com/storydetail.asp?storyid=160