How the diagnosis of an autoimmune immune deficiency disease filled me with more Grace
than I ever imagined and how I am now living in that Grace each day.

Friday, June 1, 2012

Let's Start At the Beginning, A Very Good Place to Start

It all began in November 2011. Well, it actually began well before that, but this chapter began in November. I flew to Pennsylvania to help move my Dad into an Assisted Living home, and spend some time with my Nanny and Grandma. On my way home, I came down with a cold. It ended up moving into my chest. The following week, my dear, sweet Nanny passed away, and our family drove back to Pennsylvania. During that trip. everything moved into my chest, and I ended up going to Urgent Care while there because I was coughing so much I couldn't catch my breath. The doctor treated me for asthma, put me on steroids, and told me to follow up when I got home.

The following week, I had a chest x-ray and found out that I had pneumonia, the second week in December. It took me several weeks to get over it, and I ended up with a secondary infection in the middle. I took antibiotics and steroids. In January I came down with Bell's Palsy, and started another round of steroids. That same day, I went to the doctor and started planning some procedures to find out what was causing me to go to the ER with horrible stomach pains every few months. I had an upper endoscopy a week later, and my throat was so sore after that procedure and I started coughing again. A week after that, I had another test that showed that my gall bladder wasn't working, so we scheduled surgery for the second week in February.

Three days after my surgery in February, I came down with pneumonia again. After one round of antibiotics and steroids (4th time in 3 months), we saw no improvement, so we did a stronger antibiotic, inhalers, and narcotic cough medication. I felt like I wasn't getting better, so I did some research and made an appointment with an allergist/pulmonologist/immunologist. She took one look, said I STILL had pneumonia, a sinus infection, and put me on STEROIDS, even stronger antibiotics, and steroid inhalers. When I went back 3 weeks later, I still had the sinus infection, so we did a second round of the antibiotics.

During this time I cracked a rib, did not sleep through the night for 8 weeks, and was still trying to recover from my gall bladder surgery. In addition to this, I felt that something was just off. I don't remember much of March and April, I was so sick I didn't leave the house much. In April, my Immunologist also did some blood work to see why I kept coming down with these sinus infections and pneumonia. I also started my final round of antibiotics to clear up that infection. 

The week before Mother's Day I finished the medication, but I also felt awful. I couldn't stay awake, I felt groggy, and I just felt off. That Saturday I started having some stomach pain, but Topher had strep throat and we both always get tummy pains with strep, so I figured he had shared. I was going to wait until we got home from Charleston, but Sunday the pain got worse, so I called my doctor and she called in a Z-pack for me. On Monday, the stomach pain was so bad I went to bed early, but didn't sleep all night. Tuesday I told Carl I needed to go to the ER.

After x-rays, CT scans, ultrasounds and lots of bloodwork, it was determined that I was suffering from liver toxicity from the Biaxin that I had been taking for my sinuses. I spent a week in the hospital while my body worked to detox as well as recover from CDiff, another infection that had attacked my intestines. I went home on Friday. On Saturday, Carl was camping with Topher, and I started having another pain on my right side. It had started before I was discharged, but it wasn't bad. A friend took me to the hospital, and after x-ray and ultrasound, I was admitted. This time, I had a strep infection in my bladder. We also did a repeat CT scan and an upper endoscopy, and found some terrible inflammation in my stomach.

I had another week's stay, and came home on Thursday, May 24. On Friday I went to a previously scheduled appointment with a new Endocrinologist. After taking 3 pages of notes and not being able to find my thyroid, he did an ultrasound and looked at my blood work, and diagnosed me with Hashimoto's Thyroiditis, an autoimmune disease where the body attacks the thyroid and starts shutting it down. I had felt for months that something was wrong with my thyroid and this was an answer to prayer. I also thought it was  fitting that I was diagnosed on National Thyroid Day!

I processed over the weekend, and on Wednesday I had my follow-up with Dr. Swartz, my Immunologist. I had forgotten about the blood work she had done, so when she came in and brought a social worker with her, I didn't know what to think at first. She began by telling me that there were some things going on in my body that were not normal. Then she told me that I don't have AIDS, lymphoma, leukemia, cancer... I kind of shut down and started crying and tried to ask what I DO have. She began to explain HYPOGAMMAGLOBULINEMIA to me. Basically, it is an immune deficiency where the body's immune system can not make enough antibodies. She explained it that my body is attacking my bone marrow and shutting it down. Another name for what I have is  common variable immunodeficiency, or CVID.

What this means is that I have no immunity. The minimum low number is 795. My numbers were between 200-300. For the next few weeks I will be under "house arrest" until I start treatments. My treatments will be Infusions of IgG immunoglobulin, which is a product of donated blood. I will start treatments every 3 weeks, then after 6 months we will check my levels in my bone marrow and see if we need to continue every 3 weeks or if I can go to every 4 weeks. This will continue for the rest of my life. 

My life has changed. The lives of my family have changed. But the Lord knew this. He gave me a fight to find out what was wrong. When one doctor couldn't find it, He gave me leads on finding doctors who COULD find it. I have had excellent care, caring nurses, AMAZING friends who have cared for my family, and MOPS sisters near and far who have showered me with prayer and gift cards. The Lord has blessed me with this illness so that I can share my journey with others. 

This has been a long post. This is the beginning of my new life, my new journey. I love how David writes my thoughts in this Psalm that my dear friend Judith sent me when I shared my diagnosis: 

Psalm 121

A song of ascents.

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.
He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.
The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.
The Lord will keep you from all harm —
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore. 


  1. You know, we've been online friends for the last couple of years and I know you've shared some of this, but seeing it all laid out... man, what a struggle you've been given. I'm so thankful that God has finally chosen to reveal the answers to you and trust that He will be by your side through all of this. Phil 4.6-7

  2. Shawna Lee, You will continue to be in my prayers. Thanks for sharing your story and your journey. May God use your story to bless others. And I know He will and you already do! Love and prayers, Judith

  3. You are always in my thoughts and prayers. I am so blessed to be able to call you friend and I can't wait to see you this summer. Love you so much girl!

  4. Your faith through this whole long journey is such an inspiration to me. I love you and am praying for you! Can't wait to see you in Dallas!