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Just Breathe – Battling HHT

It has been sometime since I have been able to contribute to the Cure HHT blog. Needless to say, the road has been challenging. I am excited to be able to partake in this journey with my fellow bloggers and readers once again; and share the many issues, obstacles and pertinent lessons learned along the way during my hiatus.


I was fortunate to experience a normal hemoglobin of 12.2 for the first time since my initial diagnosis in October 2004. Unfortunately, this was short lived due to the iron saturation being only three percent. In essence, iron saturation, when normal, enables the blood flow and circulation of the hemoglobin to properly function throughout the body. Therefore, the cells are able to develop, perform and nourish tissue, muscles, organs and other physical systems normally. A normal hemoglobin with a low iron saturation is of no benefit.


Over the past two years, I have traveled to Johns Hopkins for treatments and assessments. My iron levels and hemoglobin are on a constant roller coaster. More so, the travel is quite exhausting as well. Coupled with the HHT, I also deal with type two diabetes and this is not a good mix. Iron deficiency produces low energy and a high protein/starch diet is normally utilized to combat this. However, with type two diabetes, I must be cognizant of my diet and sugar levels. It is quite cumbersome to deal with.


More importantly and aggravating, are the medical insurance dilemmas coupled with strenuous costs and co-payments for medicine, surgical procedures and treatments.


At the end of the day, all I do is just BREATH. Encouraging others and myself with words of wisdom gained via my experiences is of great importance. The inspiration I offer today, is to just BREATH – inhale those items which bring life; exhale the negativity; and embrace things and people who uplift your mind, spirit and soul.


There are truly those days when all I want to do is curl up in a corner and hide. Days of exhaustion, shaking within my body and mind toward the thought of yet another infusion or blood transfusion. I cringe when my veins are poked with needles and I try to keep my head above water with the many relentless medical bills which are incurred. However, I BREATH in life and positive outlooks; and exhale all of the fearful and negative aspects of my conditions.


I have always been very open about how my Christian faith guides me through these storms. In addition, I focus on meditation, writing, cooking, gardening and most importantly, helping others. The aforementioned provides a source of relaxation, encouragement and allows me to cause others to reflect, grow and either overcome their situations and/or deal with their own circumstances more easily.


At the end of the day, HHT and any serious disease or illness people face must be supported by the undying work and assistance of others. More importantly, those facing severe illness and disease must find purpose within themselves to stand up, take control and be a help to themselves and others as well. This is why it is my sincere duty and calling to contribute to this blog once again.


I hope you are invigorated, influenced and blessed from my words.


  1. Rachel Lewis on February 18, 2020 at 5:27 pm

    Wonderful Thoughts, Which Will Uplift The Reader. Good Job. I Feel Invigorated After Reading Your Blog. Thank You.

  2. Charles Davis on May 22, 2020 at 12:51 pm

    Me and Mrs Jones,
    Yes we have a thing going on, we both know it wrong……Wow!!!
    Love you Blog,
    I have had some experiences with HHT as well as other Family members. Really understand where you are coming from and will offer my support in this EFFORT TO SHINE MORE LIGHT ON hht .
    Thank you for being such a warrior against this horrible disease.
    Charles “Bigmack” Davis Pres
    NFL ALUMNI Houston

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