Bust a Gut – Episode 3

Last time I shared with you my brokenness and my MTHFR diagnosis. Today I share more of the story, so glad you’re back. Thanks for inviting me to be a part of your day. Get comfortable and let’s get started.

My Story

There’s more to my story about MTHFR. I had another run in with health issues this past fall. In late October 2017, around the 29th I got really sick. I was losing my cookies and felt like death warmed over. I almost was….again. I tried to sleep but it was nearly impossible. I was so sick in such a short time, I became dehydrated and my potassium tanked. My defibrillator fired for the first time ever. It felt like a horse had kicked me in the chest.

It wasn’t until I felt something pop inside my gut that I finally told my husband to take me to the hospital. I thought my appendix had ruptured. I knew I was in trouble and that time was of the essence.

I was rushed into the operating room where I had an emergency surgery. I went to ICU and spent the next three days. I was going from bad to worse, and people were praying. I don’t remember much….I was dying. By the third day, it was apparent more surgery was needed. My white blood count had gone up to 28,700. I was septic and angels were singing.

I managed to communicate some important medical information that was critical to my survival. You see, getting the wrong medicine could cost me my life. My heart condition also includes Long QT Syndrome also known as LQTS. Certain medications can cause the heart rhythm to become elongated (or to long between beats) so much so that the heart stops and cardiac arrest ensues.

There’s a website called Credible Meds that allows a doctor, patient or pharmacist to look up any drugs to see if that drug is contraindicated for a patient with LQTS.

I don’t remember a lot of the details of my time in ICU, I’m retelling a lot of the story based on my husband’s recollection, not mine. Infectious disease had been brought in on my case. The labs confirmed the infection was E. coli that would only respond to penicillin.

My life hung in the balance. I was allergic to penicillin. Now the infectious disease doctor said it was my only hope. So a nurse sat by my bedside with an epi pen in hand while they waited for the results of the allergy test.

I had survived all of these surgeries. But wait, how could I? I have congestive heart failure…how could I still be alive? During my time in the ER they had done an echocardiogram. My heart failure was a thing of the past. It was a miracle. The cardiologist remarked that this wasn’t normal, patients aren’t known for reversing congestive heart failure, how did I do it? I’ll tell you what I told him…later. That’s another episode.

I lost count of all the miracles that happened in those three weeks in the hospital. I had a purpose. God wants me to tell my story. So here I am….thanks be to God.

MY RESEARCH

I had already learned I had high homocysteine levels in my blood due to my MTHFR issues. Without the proper support to keep the methylation working I have hyperhomocysteinemia, a disorder in which the body is unable to process homocysteine and methionine properly.

People with this condition often develop eye problems, abnormal blood clotting, skeletal abnormalities and brittle bones that are prone to fracture (osteoporosis), and cognitive problems. Less common forms can cause intellectual disability, failure to grow and gain weight at the expected rate (failure to thrive), seizures, problems with movement, and a blood disorder called megaloblastic anemia. Megaloblastic anemia occurs when a person has a low number of red blood cells (anemia), and the remaining red blood cells are larger than normal (megaloblastic).

Hyperhomocysteinemia is typically managed with vitamin B6, vitamin B9 (folate) and vitamin B12 supplementation. Supplements of these vitamins; however, do not change outcomes. These are the primary vitamins in the Methyl Care supplement that I take. Why is B6 so important?

A new term, homocystinuria was added to my growing vocabulary. One that I wish I never learned existed, at least in my world. This all goes back to the MTHFR.

The term homocystinuria describes an increased excretion of the thiol amino acid homocysteine in urine (and incidentally, also an increased concentration in plasma). No specific cure has been discovered for homocystinuria; however, many people are treated using high doses of vitamin B6 (also known as pyridoxine) or P5P (pyridoxal 5-phosphate) the bioavailable form of B6. Slightly less than 50% respond to treatment with just B6, so the standard method of treatment includes both B6 and P5P. Patients that respond favorablly to this treatment will need to take supplemental vitamin B6 and/or P5P for the rest of their lives.

SPIRITUAL

So many times in the Bible we are reminded that God is always with us. It is such a comfort to lean on him when the going gets tough. God’s will be done. I know he will always be with me, no matter whether I live or die.

The passage that kept going through my mind as I lay fighting for my life was:

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” — Deuteronomy 31:8

this same message appears again and again in the Bible.

God is good. He is all I need.

CLEAN LIVING

I learned that if I took my supplement that reduced my homocysteine, the MethylCare by Metagenics™, it provided the missing pieces for my methylation to be effective. I want to reiiterate that I am an UNDER methylator. This supplement is not intended for someone who is an OVER methylator.

I eat a lot of green leafy vegetables that are rich in folate (B9) and take my supplements daily, especially when under stress. I work with a biochemist to test and address my nutritional levels on a monthly basis. I believe understanding my nutritional shortcomings helped me to overcome my genetic misfortunes.

I have learned to live each day as though it could be my last. I am grateful for every precious moment I have on this earth. I share the gospel with whomever will listen. I am forever grateful for Dr. Kahn helping me discover my MTHFR status. I call him one of my angels. My biochemist Donald Gene Kraus, is also one of my angels. Let’s not forget the two angels that sang to me in my hospital room. Kathryn Christian is the hospital chaplin and has several albums out. Check out her music on her website.

God provided the opportunities for me to find these individuals to help me in such a critical time. I feel so blessed.