If I had Only Known About Patient Advocates:A Story

This entry is written by Jen about an experience in the hospital.

When I first spoke with Hari, it had been almost two years since my life changed forever. I felt a instant connection with Hari, and only wish I would have known that her profession was available to me a few years ago, my life could have been a whole lot different.

In May of 2008, I gave birth to my second daughter, 6 weeks before she should have been here. It was a very normal c-section, and actually went a lot better than my first. The birth went well and my daughter was born 6 pounds 8 ounces. She was having a few issues breathing so they wanted to take her to NICU for 48 hours to help her out a little.

Over the next few days, my early bird daughter was doing amazing, with no complications. I, on the other hand, started to have extreme pain in my left calf that seemed to get more intense as the hours went by. My mother and husband spoke with the nurses on ten separate occasions, asking them to check on me just one more time. The final time that they came in, my leg hurt so bad I just wanted pain medicine to make it go away.  The pain was unbearable.

The nurses checked my leg out and said that there was no redness, warmth or swelling (which is weird because my whole body was swollen). They said that there was no need to page the doctor, do a doppler and that I was just fine. I was told the pain was probably due to so much activity walking back and forth to the NICU right after a c-section. My mother called my dad who is a retired DOCTOR and asked him what his thoughts were. He called the nurses station and asked them to do a doppler right away, and to please call my OB/GYN if they needed too because I was showing classic signs of a deep vein thrombosis. They told my father he wasn’t acting like a Dr he was acting like a father, and that I was just fine.

Both my daughter and I were released from the hospital four days later on Mother’s Day. Little did I know what was lurking around the corner. Ten days after bringing our new daughter home, I woke up feeling like I had the flu. My husband  told me to lay down and rest.  A few hours later,  I was having a hard time breathing and was in a lot of pain. I decided to go to the hospital after I did some research, fearing that I had a pulmonary embolism, or blood clot in my lungs. When I got to the hospital, I told the nurse all my symptoms including the ones from TEN days ago after having a baby. I was told to go sit down and I would be called soon. Three hours went by and my breathing and pain seemed to worsen. My husband spoke with the nurses on several occasions and he started getting a little angry.

Finally, someone called me back for a ultrasound with dye, to see if there were any clots.  After that was done, I was told to go back to the ER waiting room.  Another four hours went by, I was hunched over in a wheel chair in endless amounts of pain, when finally a Doctor came out and called my name. I stood up and said its about time!  Before I could say anything else, the ER MD and nurses put me in a bed, started an IV, let me know that I was one of the lucky ones and that everything was going to be ok. He informed my husband that I had THREE large clots on the left side in my main artery, and that is why I was having so much pain. He told me that I was lucky, another 24 hours I would have been dead.

I was in complete shock, I didn’t know what to say, what questions to ask, or what was to come. As I was wheeled into intensive care and hooked up to Heparin (God knows what else), I asked what was going on, and the Dr told me that there was scarring in my left calf and that these clots broke off from there.

A few minutes after the ER Dr left, a cardiovascular specialist came in and asked how I was doing, and I said that I was in a lot of pain. He informed me that they would figure out what was causing this very soon….

I said, what are you talking about I already know why I am here! He said ,you do? I said yes I have 3 clots in my lungs. He said, we don’t know that yet.                                                                                                                At this point I was fuming,

I said, I was just rushed up here, stuck with dye and told that I had clots, and now you are saying I don’t have them? He said, we don’t know for sure we are waiting for your results.

At this point ,I told him that I just wanted to go home and be with my baby, if there was nothing wrong there was no reason for me to be here let alone be stuck with all these different medications to treat blood clots if I didn’t have any. He informed me that he would be back soon with the results.

Several hours later, another Dr returned, Dr Shivelband a hematologist. He sat down with me and asked if I had any questions.  I said really you want to know what I am thinking, wow that’s a first. He took out my ultrasound pictures, a piece of paper, and a marker. He sat next to my husband and I and showed us in the picture where the clots were, and where they came from. He then drew a picture of how all of this took place. He spent over two hours with me answering all of my questions and honestly was the only person that I trusted medically in the last  ten days. He knew what he was talking about, brought information to support what was happening to me, and explained what would take place, now and in the future. After everything I went through, I will say he was my amazing grace. I would be visiting him frequently over the next few years, and learn what true gift from God he would become.

Unfortunately I had to go through several doctors and unanswered questions before Dr Shivelband found me.  If I only would have known about Hari, it would never have gone this far. My life has changed drastically over the last 31/2 years. There are many things that I can’t do now because the clots ended in my lungs. If the nurses and doctors had listened to my complaints, the clots would have stayed in my leg and been resolved there. It only would have taken a five minute doppler check to find them.

It didn’t matter that I had a family fighting for me at the hospital explaining to these nurses about my symptoms and fears of a clot.  It didn’t matter that my father was a retired Dr that told them to do the doppler.  No one listened, no matter how hard we yelled.
People don’t realize how important patient advocates are until they are in a life threatening issue, and that shouldn’t be the case. Because the clots progressed, I will never be able to have any more children, and any future surgeries I may need will be a higher risk for blood clots.
It has been almost two years since I have been part of Hari’s life, and learned all of the things that she has gone through fighting for each of her patients so that their voice can be heard. To me, Hari is doing angels work, and by getting her message out I can only hope that is ONE more life saved. Hari is the voice of every patient out there!