The Long Road to a CVID Diagnosis in a Patient Who Refused to Give Up

September 23, 2015

It all started back in January of 2007.

I was on a cruise ship and we were dock in St Thomas. I got sick on the second day of the cruise. I lost my voice all of a sudden. The whole cruise–for almost two entire weeks, I was silent and finally I scheduled an appointment to see my Ear, Nose, and Throat doctor. I had a scope done and they found lesions on my vocal cords, so I was on complete vocal rest for one week.

But I never got better and so my doctor tested me for mono and it was negative. The strange this was that my platelets were REALLY low. So he immediately sent me to a hematologist/ oncologist. I went through three grueling rounds of predisone and as a result I gained 65lbs.

In late May, they took me off the predsione and it helped a little then slowly my platelets started to decline again.  My hematologist knew there was something wrong but they couldn’t figure it out. Then, in earlier September -( 9 months still we are trying to figure this out,) they decided to take my spleen out.

That was on September 26. I was in the hospital for five days and my incision was two times the size it was supposed to be since my spleen was so enlarged. So after all of this was done I thought I was finally on the road to recovery–well think again!

My platelets started to decline yet again. In November of 2007 they started me on Rituxan to try and figure out what was eating my platelets. So I did four rounds of it. Perfect timing, I thought, as Thanksgiving and Christmas approached. That was hard on my body. My eye sight and memory got bad.

Early 2008 brought the diagnosis of RA and Fibro. I was all over Illinois and Missouri trying to find someone that could help me. Finally my doctor sent me to an allergist/immunologist to see if they could shed some light, I was in that office for 6 hours.

I would not react to dust. She was concerned. They did so much testing that day, I remember thinking if this doctor can’t find anything its really all in my head.

Sept 17 2008, I was 28 and this will be a day I will never forget. The doctor walks in and says are you here alone? I said yes. She shows me my lab work. I had no IgA, IgM, IgE and my IgG was barely there. She said I am sending you to the hospital and you will be in contact isolation, and be thankful you are still alive. Mind you I had no explanation at this point.

The doctor called my mother and my mom thankfully argued that I was not going to the hospital, and that I had lived this long out of quarantine. I called Dr. Migas, my PC, and he talked to the doctor and they decided not to admit me, that I would go over there and get more blood work and get going on IgG. Dr Migas finally gave me the diagnoses of Common Variable Immune Deficiency. Hypogammaglobianemia, and Complete IgA Deficiency.

I went for a second opinion just to making sure to cover all my bases and because no one in Central Illinois had ever heard of it. By this time I had two binders full of notes and lab work. (Make sure you get copies of everything) I went to Barnes in St Louis and they confirmed it. I started seeing Dr Pratt and I owe her the the world. I was on IGG from 2009-2011 and May 2011 I started Sub Q.

My numbers are now steady since I do weekly treatments. I have good days and bad. I am just thankful for everyday that I can help someone that has been diagnosed. I look back and when someone asks me how are you feeling, I say okay. I dont think I know what it like to feel good. I do what I can, I have to plan my weeks out. If I want to do something fun, I either have to take a day off or half a day off as I still work full time. Sleep is my friend and I have learned thats okay. I have learned that you have to lean on others that have this, they get it. I have only asked once why me, why do I have to go through this, and I will never forget I met a little kid at an event and his mom hands me a card as I was leaving and she says read this later. I will never forget the note or the child. I have this disease to help others. I changed her child’s outlook on life that day. He had a purpose now. I have met my bestfriends by having this and you have to surround yourself with people that will help you and be positive. Just never give up. Its not an easy road, lots of tears but tomorrow is a new day.


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