"I cry everyday with the thought of leaving my young daughter, my best friend..."
My husband and my daughter are all that I have in this world. Please help us stay together!
Hello. I am Katrina Vinuya, 27 years old, a dedicated mother and wife.
I've started having odd symptoms since November 2019 but didn't think it was something serious. I'd lose a lot of hair, found it harder to digest food, had cramping in my legs and had sudden onset of extreme depression and dark thoughts. Come April 2020, I suddenly had numbness which spread in my entire body together with several episodes of extreme weakness, tetany, tremors, palpitations, stroke symptoms and excessive sweating. My flanks also started to hurt a lot and my vision would get blurry at times.
We had a doctor who lived nearby give me some requests for lab tests all of which of which came back normal. But when the attacks became very frequent and had caused my left arm to go limp and caused me extreme weakness, tremors, palpitations and heaviness in my legs, I was rushed to the ER last May and underwent a few tests all of which came back normal except for a very high blood pressure of 160/110. I came home with no answers.
Research lead us to seek the help of an endocrinologist which was not a very easy thing to do because most clinics were closed because of the lockdown and the few doctors we managed to call refused to see me mostly because of covid related fear. We eventually managed to see 2 endocrinologists who both told us that all of my symptoms were pointing to Pheochromocytoma/Paraganglioma- both very rare, potentially lethal tumors that secrete hormones that significantly increases the heart rate and blood pressure causing strokes, heart disease, significant organ damage and eventually, death. My first doctor wanted to rule out all the other possible causes of my symptoms and through a battery of tests I underwent, which all came back normal, it was clear that the only logical next step is to be tested for Pheochromocytoma- a disease that occurs only in 2-8 persons per million.
One of the difficulties that I'm facing right now is that the standard medications given by 2 different doctors to control my blood pressure for the time being are not working. I've started getting terrible allergies too (for the first time in my life!) so it's a risk everytime I take new medications. Any medication I take could either cause me anaphylactic shock or hypertensive crisis. Even just having a CT scan with contrast could endanger my life without proper supervision. Since May I've been consistently suffering from high blood pressure that is resistant to medication together with a lot of other symptoms. Even just eating certain foods such as fruits or vegetables, standing or even sitting in the bed induces my attacks and causes me a blood pressure with the average of 160/100 and a heart beat of 130-140 per minute. I've become scared of even sitting that I've remained lying down in bed most of the time for more than a month now which caused my muscles to become stiff and my nerves to become so weak that they cause me unbearable pain sometimes.
My first endocrinologist advised me to go to the ER weeks ago to have my blood pressure stabilized and to avoid possible life threatening complications of having continuously high blood pressure. Unfortunately, we cannot afford the hospitalization costs what more the tests needed to determine the existence of the rare tumor some of which are only available at St Luke's Endocrine Center: Plasma metanephrine test 20k/ 24hour urine metanephrine test 5k, Renin-Aldosterone test 10k , and adrenal CT Scan with contrast 20k. If the tests would confirm the suspicion of 2 endocrinologist doctors, I've consulted with, I was told that the very complicated surgery requiring an experienced doctor to save my life would cost around 500,000 pesos- an amount we have no capability to pay.
My family and I have been living a very simple life selling things online since I became a PWD. We've used up all that we had in trying to figure out what's wrong with me. I've had tons of tests done, an ER stay, several consultations with doctors either through phone or personal and all of our savings have been depleted. Most government aid are currently non existent since funds had been redirected to fighting the coronavirus. And because of the rarity of the disease and the covid pandemic, no government hospital is currently equipped to handle my situation. We can't help but feel cornered in helplessness and despair.
I really am in a very precarious situation right now. There's no telling when an attack would come or until when my body can hold on.
The donations we will receive we will use to have all the needed tests done and for my very much needed hospitalization and hopefully for the life saving surgery I might need very soon.
All I want is to be given a chance to live, not for myself but for my young daughter who depends on me and my husband who loves me dearly. I lost my mother to cancer at the age of 9. I dont want to let my daughter go through what I went through as an child. My daughter and my husband whose been beside me these entire time are also both suffering seeing me suffer everyday. They are both hoping and praying that through God's help and your kind hearts, I could get the help needed to survive this disease.
I am currently being assisted by a non profit organization, Philippine Society for Orphan Disorders. Unfortunately they have very limited funds and can't help me with all the tests hospitalization, and medical procedures that I need.
Please kindly send your donations at my husband's bank account
Timothy John Vinuya
BDO SM San Lazaro Branch
Or at GCASH# 0915 5842981
Your donations will be very much appreciated.