Hi! I’m Michelle Christine Bustamante, 38 years old. You can call me Mitel or Miti. I am currently bothered by multiple health concerns which greatly hamper my life.
1. Congenital heart condition – I was born with incomplete heart valve(bicuspid instead of tricuspid)
- It did not manifest when I was a child. The palpitation attacks started in 2008 and it was diagnosed in 2010. It progresses as I age.
- I tire very easily and breathing is always heavy even when I am just sitting down or at rest. I am often short of breath.
- The palpitation attacks may be triggered by too much physical activity, tight garment, stress and other unidentified causes. From the normal 70-100 beats per minute mine would reach to 220.For this to normalize I will be rushed to the ER and be injected with adenosine directly to my vein. From 220 beats per minute, my heart rate would drop down to 20 or lower in a matter of seconds. It is monitored until it slowly picks up to normal level. I need to describe how it feelsbecause it’s the one thing I dread the most. It literally feels like life is draining out of me each time my heart rate dips too low due to the drug.
- My cardiologist recommends an open heart surgery to replace my heart valve with a metal valve with an estimated cost of over PhP 800K. (Heart Center of the Philippines).
2. Primary Immune Deficiency, also congenital. I lack killer cells in my blood that is why I get cold, cough and flu very easily. Having cough and cold is normal but to have it for all years of my life, non-stop, lead to organs being damaged due to complications:
- Bronchiectasis - due to frequent pneumonia, and a major one back in 2004, part of my lungs is scarred and damaged permanently making them over-produce phlegm and the air passages swell and become narrow. All the more adding challenge to my breathing. It also makes me more susceptible to pneumonia. Many times my doctor will give up prescribing antibiotics ( after 3-4 sets of different classes of antibiotics, from the first line to the strongest tablet type available) because they fear I might develop resistance to antibiotics. They end up prescribing a mucolytic to dissolve the phlegm and prevent my lungs from being congested. After a break for a month or so my cough will turn bad again accompanied with fever and the possibility of pneumonia and so begins another cycle of antibiotics.
- Air pockets in my face are clogged - due to frequent cold. It’s causing my ears to ring. When someone talks to me while I am chewing food, I can hardly hear the person because all I hear is my chewing. During the latter part of March – April (2018), I couldn’t attend to meetings and other obligations because I totally cannot hear. I was prescribed with different antibiotics, steroid and salt nasal sprays. There was a little improvement but finally, my doctor has decided that we should proceed with the nasal surgery to drain the fluid or any clog.
- I can hardly smell anything for almost 5 years now. That also means I cannot fully taste the food I eat. On good days, I can catch a whiff.
- Frequent fever due to bacterial or viral infection.
Before we can proceed with any surgery for my nose or heart, my doctors are uniform in saying that we need to address my immune system concern first. Otherwise, the nasal clogging just might just recur due to frequent cold and my body will be at high risk with an open heart surgery. To address this, I will need to get a treatment called IVIG every 28 days. According to my doctor, it would cost PhP 100K -200K per session. The dosage and the number of sessions will depend on my response. The dosage and the number of sessions will depend on my response.
3. Mild scoliosis
It bothers me when I sleep. My doctor advised me to not use a pillow when I sleep and lie flat on the bed. But lying flat makes me cough all night because my lungs are filled with phlegm. I also can’t breathe through my clogged nose. So I need to elevate my head and upper body and use pillows.Every night it’s a choice between not coughing vs. not worsening my spine condition. Not coughing would win more often to allow me a bit of sleep.
4. Lump on my left breast
It’s the dormant one among my conditions except for occasional jabs of pain. Regular monitoring is required.
I mean, to feel all the symptoms and effects of these conditions in one body and at the same time is just overbearing at times. It goes beyond physical.
Primarily, due to my heart and immune condition I had to leave regular employment. I was already in and out of the hospital due to consecutive pneumonia and palpitation attack in early 2014. I took lighter jobs that pay based only on results because I needed the flexibility and the control of the work load. Thankful as I am to the industries that welcomed me and their great potential, my condition, being progressive, impose limits on my capacity on a day to day basis. Also, time that could have been used to work are spent in the hospital for check up, treatments, lab works and diagnosis that are all cost-centric. Last year, from March to mid June, I see 2-4 doctors of different specialization every week. That takes up 3-4 days. After that, the frequency lessened to 2 doctors every week and now it’s 2 doctors every other week. Not that I no longer need my other doctors anymore but that I need to focus on 2 conditions first, namely, my immune system and nasal concern because it is affecting my basic sensory functions. The others conditions, to follow.
The lack of guaranteed income plus the constant need to address whichever among my conditions is most bothersome at the moment had already exhausted my savings and is hindering me from addressing the really big issues of my heart and immune system. I am also supporting my mother, 75 years old, who lives with me.
I realized that I cannot do it on my own. I’ve already tried for so long. It feels like being trapped in a chicken or egg scenario. I can work, work, work to try to earn and end up getting more sick and risking a palpitation attack. Or I can rest, lessen the risk but not have money for my basic needs for nutritious food, medicines, treatments and check ups. Let alone rebuild my fund for the major heart surgery.
So I decided to create this account. I need help to get back on track. I am hoping for a better quality of life. I want to be a better daughter.I want to be fully productive.I want to be healthy and strong and start making and chasing dreams again. I want to beat my 3K run/walk record, be able to trek again (it used to excite me so much), or maybe, finally climb a mountain! I want to be able to sleep 6-8 hours straight, not bothered by cough or back pain. I hope to be able to smell and hear clearly again. I want to taste the full flavor of the food I am eating. The most basic, I just want to breathe, effortlessly.
Thank you for your time reading this. God bless you!