Updates and Milestones...Concern and Celebration

The past month has been a busy one for me, with visits to several doctors multiple times. It has been exhausting and perplexing, painful and difficult. But it has also been a time of reflection and peace in the midst of chaos because through it all, I recognize how truly blessed I am. I had some diagnoses added to my list, one or two of no real consequence other than pain, added medication and inconvenience, and one that I must do something about soon. I finally got my reports from the testing done by the Pulmonologist, and I have combination/mixed Obstructive and Restrictive Lung Disease. I am praying that I am approved for a BiPAP machine which will help with my labored breathing and decreased oxygen saturation. I already fulfill the criteria required for insurance coverage, but am still scheduled for a titration sleep study on August 2nd. What I am praying for is a BiPAP machine that will not have a fixed setting, but allow me the freedom to set it for what I need as I need it...whether asleep or awake...so that I can avoid ER trips and intubations. Too many Myasthenia Gravis patients die due to respiratory failure from weak chest wall muscles and/or diaphragm failure because they don't get proper ventilation in time. Having a BiPAP will provide me with noninvasive ventilation when signs of impending crisis are evident before the actual crisis occurs. This will be a HUGE aid in my fight against MG, a vital addition to my arsenal of tools going forward.

I reached a milestone this week, one that I wasn't sure I would attain when I first started this journey. There is much unknown about Myasthenia Gravis, but one thing that is proving helpful to me considering my treatment limitations is IV Immunoglobulin (IVIG) therapy. I posted an update on Facebook the other day, but for those of you who support, pray for, and encourage me day after day, week after week, who do not have Facebook accounts, I am writing this for you...

"200". Three little numbers (two of which are zeros, generally referred to as "nil" and often viewed as nothing but place holders) that, when put together, have great meaning...especially to people like me. "Really?", you ask..."It looks like an inconsequential number to me. What significance could that number possibly hold?" Good question! Let me help you understand what the number "200" represents for me:

• Two years of driving over 600 miles round trip to an infusion clinic in Houston a minimum of every two weeks
• 3 1/2 years of weekly nursing care in my home 
• 8-10 amazing nurses
• Multiple needle sticks, collapsed veins and surgical placement of a port in my chest
• Three different home health care companies
• SIX different brands of IV Immunoglobulins (IVIG)
• One good pharmacy and one specialty pharmacy that exemplifies excellence
• A Patient Advocate that works tirelessly to help patients like me receive treatment they need
• Roughly $1.5 million in costs for these treatments alone
• Hundreds of thousands of DONORS who gave the gift of life through their plasma donations

Most of all, "200" represents LIFE...another year, another week, another day...to love my husband, my family, my friends; to worship my God--Jehovah Jireh (God, Who provides), Jehovah Rapha (God, Who heals). Yes, it is true. This past Tuesday, July 17, 2018, I reached another milestone in my IVIG therapy. Tuesday was my 200th treatment. I am still here, and I am blessed. To be sure, "200" is looking pretty awesome to me!

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through Whom we have gained access by faith into this grace in which we now stand. And we boast in the HOPE of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." ~Romans 5:1-4~

Thank you once again for your loving support. It means more to me than I can express.
God bless you, I love you...
Kathie Lea