Life Is Tough, but So Am I
“Life is tough, my darling, but so are you.” –
My husband pushed me in my wheelchair through the main hospital entrance. My pulmonary hypertension (PH) medical team wanted me to avoid chaos in the emergency room. I am grateful that he made my health the top priority.
As we waited for the admission paperwork in the empty and silent waiting area, a nice young lady came out and asked me a few questions. After I answered, she said that she would be back with my admission bracelet.
I fell and never told anyone.
The week before, I was experiencing dizziness and lightheadedness sporadically. I fell the week before that coming in my back door. I never told anyone — until two days before my hospitalization.
My husband started to notice my balance issues as I held on to the walls and furniture while walking. This was at a snail’s pace, too. I walked into the kitchen and stopped to grab a counter as I thought that I would faint.
Besides the balance issues, he noticed me rolling myself into a fetal position on the couch as the pain took over my body. My legs were like lead. These were some of the reasons that my PH medical team decided to admit me. We thought that it was an increase in PH symptoms, but could it be more?
Was that code blue for me?
While waiting in my wheelchair, the dizziness and lightheadedness started again. It was like the room was spinning. I tried closing my eyes to see if that would offer relief.
The next few minutes are almost a blur. I remember my husband standing in front of me and trying to talk to me. I think he said something like, “Boo, stay with me.” Medical personnel appeared from the hallways and elevators. What I didn’t realize at that moment was that this was the hospital code team. Someone hit the code blue alarm for me!
Lying in the hospital for four days with no real answers is frustrating.
The scariest part of living with a chronic illness like PH is when my medical team can’t agree. They blame each other. This is often a struggle when managing coexisting conditions that require many specialists. But here I am after lying in a hospital bed for four days with no answers and little relief. Leaving the hospital frustrated and with conflicting advice is discouraging.
And yet another specialist.
While in the hospital, the neurology team was consulted due to the “episode” that occurred during admission. They performed an MRI and an electroencephalogram (EEG).
After enduring several long hours of the technician gluing a ton of electrodes to my scalp, the test was ready to begin. It would run for at least 24 hours.
The seizure-like activity was dismissed. Just before my discharge, a staff neurologist called to tell me that the tests were inconclusive. The EEG results showed some activity, but they credited it to “artifacts.” He did say that I should contact a local outpatient neurologist. My primary care doctor is working on that referral now as he thinks more testing is needed. I will possibly need more testing with my PH specialist; they will keep me busy.
I was ready to go home after four days, especially not having seen my husband the last two. I didn’t care that I had no answers and little relief. After a day or two, I realized that I came home too early. But I am grateful that we worked on pain management again. Hopefully my outpatient pain management team will agree with the inpatient team. This would offer me a better overall approach to my pain.
Often I feel like a yo-yo, going back and forth as I take the advice of one doctor, then shortly after am told something different. Do you ever feel like this when seeing multiple specialists? It is quite exhausting. But, once we find answers, it will all be worth it. Because I am worth the PHight!
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
This is the reality people never get to see or witness. She doesn’t look sick is fooling to the healthy person but let me tell you it’s false. Ive come to realize Drs are lost, they are human but I believe they should
Listen more to the patient besides going off readings and tests.
Thank you, Boo. I'm sorry to put you through this. Just reading your comment makes me tear up. Together we continue on our rollercoaster ride. XOXO
Carol A Kolefas
True, the patient has inside information no amount of tests, scans or anything else can answer the whys
Thank you for reading Carol. I am hopeful that you benefited from reading my experience.
I have experienced this after having a stroke one year ago. It is frustrating when medical professionals don't agree. It leaves the patient at limbo, confused and frustrated with no answers. Keep fighting Jen and never give up. Great article.
I'm sorry that you have experienced this frustration and confusion. It certainly does make one want to stop going to the doctors and hospitals. But that's not us; we continue to persevere. Thank you for your support.
God Bless you Jen and Manny. You will be at the top of my prayer list!!!
Thank you, Jeanne. We appreciate your prayers. Thank you for reading my column.