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Marsha’s Story (Lupus, Heart Disease)

Marsha's Story Lupus Heart DiseaseIn 2005, I was diagnosed with Brugada Syndrome, a heart disease that causes dysrhythmia. The doctor implanted a defibulator/pacemaker to help control the dysrhythmia. In 2008, I was diagnosed with lupus. Before my diagnoses, I experienced fatigue, joint pain, and pain in my spleen. My sister-in-laws’ wedding was coming up in October of 2008. In June, we went to try on shoes for her wedding because I was the maid of honor. My feet were swollen that day, and after I got to the mall, I didn’t feel well at all. I went to the emergency room and found out my kidneys weren’t functioning correctly, my spleen and liver were enlarged, and I was anemic. I was admitted to the hospital and received several tests. After a week in the hospital, the doctors didn’t know what it was, so they sent me to the Ohio State University Medical Center. The doctors at Ohio State eventually found out what was wrong. I spent another two weeks there.

A few months after finding out I had Lupus, my husband lost his insurance. My medication was too much for us to pay for. I was put on a different medication for my Lupus, which caused it to flare up. I was put back on the immunosuppressant I started on. I was able to get help paying for my medication, but I still had to pay for doctor appointments and being admitted to the hospital, as I had to go to the emergency room several times. I tried to apply for Medicaid, but was denied because my husband and I didn’t have children. The doctors at Ohio State eventually helped me get Medicaid a year and a half after I was diagnosed with Lupus. Within that time, I was in the hospital several times. My lupus had flared up, causing my potassium level to raise a few times. I have had two kidney biopsies, a liver biopsy, and two blood infusions between 2008 and 2010. I have been on several medications since then. At the moment, I am taking about 20 pills a day. My lupus has been under control since 2010.

In 2013, I had to receive a mechanical valve in my aortic valve, after finding out I would need one two years before. The surgery went well. I felt so much better after having the surgery. In 2014, I had to replace my defibulator/pacemaker because I had it in for 9 years. They usually last about 10 years. I had to get the leads replaced because there was a recall on one of them. Usually the doctor would only replace the box, but the leads had to be replaced, too. This box lasts longer than 10 years and is smaller in size. I had to spend longer in the hospital than anticipated because I got a fever. I felt fine for awhile, but started getting exhaustion and dysrhythmia again. I saw the doctor, and he found that I was having more premature heart beats than usual. I was put on a medication, which helped significantly. I still have a few issues with fatigue, but have been doing better.

During this time of trial with my health, I was working part time and going to school part time. It took me 10 and a half years to complete my degree, but I graduated this past May. I have a degree in history and am close to having a degree in zoology, which I hope to finish at a later time. I also would like to become a certified naturalist.

Marsha
Ohio
Submitted 06/25/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Tammy Bettencourt

    I was healthy my whole life until 2004.. I started getting ill for unexplained reasons.. Hospitalized several times,doctors baffled over what 8t was wrong with me. Then in 2007 at the age of 32 they thought I was having a heartattack!! I was freaked out and passed out woke up to my husband panicking!! I was in there for almost 3weeks but they did all kinds of test on my heart couldn’t figure it out. Had many more hospital visits still no known reason y this time it was my kidneys,then they sent me to this specialist.. She took one look at me and said I’m gonna run all these blood work on you and make sure I’m right.. So my husband I waited I was so nervous and scared and just ready to find out what was wrong with me. I hurt all of all the time I ran fevers and got sick a lot and had these butterfly marks and rash like marks all over I was embarrassed of my body. I was so tired all the time, I use to work 12hr shifts and still keep up with daily activities, then it got to where I couldn’t get thru not even part time hours.. 3 days later they called us in and explained to my husband and I that I have Lupus SLE… They explained to me that there’s no cure and really all there is to do is to take all these meds steroids and inflammatory meds to help control the flare ups… I was crushed I felt broken and asked”God Why” I didn’t understand and I’ve done much research and my family and friends never understand much!! Now it’s 2015 and I am now disabled have few good days,but I still always try to put on a smile!! I would be lieing if I said that a little part of me isn’t angry and hurt because I am. If u have a loved one with Lupus please take the time to do some research to better understand a little of what’s going on with them and just give them a hug and support.. I will fight this with all my might til the last breath I take.

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