A Life That Has Been Changed: Debbie Vostello
I began experiencing health issues at a very early age. Breathing was often a struggle. In 2011, a doctor came into my life who started talking about pulmonary hypertension (PH). It took until 2015 and until age 52 to get the correct heart catheterization, a right-heart catheterization, not a left, and to actually get the diagnosis.
During this time, I had stopped working, which left me with no funds since I had been in and out of work for so many years. Personally, I am thankful for the PH diagnosis because I was able to get the assistance I needed. I had consistent health care. I found the Caring Voice Coalition who worked with me to get my disability approved. PH was only one of the many diagnoses it was based on.
I used what energy I had to learn. I was given a scholarship to the Pulmonary Hypertension Association Conference, where I gained valuable information. I learned PH meds would make it harder to breathe, which was happening to me, so I need to fight for better lung care. The trip took more out of me than my lead doctor thought it would, but I brought back information we could use. I started a support group based on the idea of “news we can use to improve our quality of life.” Even the support group had to be stopped when my health declined.
During this time, I obtained a motorized chair with the encouragement of my pulmonary rehabilitation trainer. I saw the chair as a blessing. I could do more with it then I could without. The chest pains were less.
Friends and paid individuals came over and helped adjust my kitchen. I got rid of anything that was heavy. Lightweight plates are easier to unload from the dishwasher. I purchased a pan that allowed me to cook more in the microwave, along with other lightweight pans. Laundry became a little easier when I discovered a laundry basket on wheels. A grabber was valuable in unloading the dryer. Everyday items were put at arms reach to prevent bending over.
I also started singing in the choir while sitting in my motorized chair. Do what you can at the level you can. Don’t be afraid to adjust things to meet the needs you have. Your body and mind will thank you.
All the above and so much more has led to a big change in my life. My lead doctor and I fought to add new doctors to the team over about the past year and a half. A lot of my time has been spent at or traveling to medical appointments. I have not used the wheelchair in seven months. I have started tutoring 12 hours a week, mostly online to avoid the germ issue. I am doing what I love to do again in a different format. I have started a new support group. It is bringing together various agencies in our community to help individuals in need. Amazing relationships are developing between the various agencies in our county.
The medical appointments have not let up. The health struggle is not gone for the doctors or for me. We all know my life has been changed. Doctors have already said they do not know how long they can keep me at this level. One said it was scary treating me last year when we first met. He told me that if any one of the many specialists made a misstep, things could have gone another direction. He is a skull-based surgeon, yet treating me is scary!
Keep fighting even when you think there is no way, and even when doctors tell you there is no way. Many doctors were telling me nothing could be done, and I would be homebound. Firing doctors is a must at times. Sometimes their lack of knowledge or fear could be what is holding you back.
