By Jennifer Ahlstrom | Posted - Apr 19th, 2020

 

 

 

 

Protecting the Most Vulnerable: Judy Power's Myeloma Story

Editor's Note: This story is not about a COVID-19 positive patient but illustrates the extra caution myeloma patients may need to take when having myeloma or being in active treatment. 

By Sean Power

Back in 2016 when Judy Power came home from a wedding with a light flu, she could never have envisioned that it would end with her being in a coma for 2 weeks barely clinging to life.

Similarly to many victims of COVID-19, my mother fell into the category of being someone with ‘underlying conditions’. She had been diagnosed with a rare blood cancer called Multiple Myeloma in 2012. The subsequent chemotherapy, stem cell harvest, and reinfusion had left her immune system incredibly vulnerable.

Things began to go downhill incredibly quickly. It became clear that my mother’s health was deteriorating and that she would need to spend some time in the hospital. Even then, the full seriousness of the situation didn’t hit me, I suspected she’d need a couple of days on antibiotics and she’d be back home with us.

When I arrived up to visit my mother in hospital however, I was directed to the ICU where I saw she was unconscious receiving oxygen through a mask. Despite the name, I somehow still didn’t realise how serious being in the Intensive Care Unit was. It was only when the mask was replaced with a breathing tube, I started to grasp the severity of her condition.

My mother had been put into an induced coma and was on a ventilator (life support) as her lungs had been struggling to function. What followed were the 2 most difficult weeks of my life, as my father, my sister and I travelled to Dublin from Arklow every morning to be beside my mother until visiting hours ended.

The truth is, nobody can ever understand the horrible loneliness and desolation of an ICU until they’ve experienced it. Constantly being surrounded by death and grieving families takes a huge toll on your mental health. As the wards are full of critically ill patients, nurses have to regulate the number of visitors entering the ward, and the amount of time being spent with the patient. Once they return to the visitor’s room just outside, a receptionist will call the phone inside the room to tell another family member to come to the entrance where they will be buzzed in

The visiting room is the hardest place to be in, as you just want to be beside your loved one’s bed, there is an intense fear that they’ll pass away before you can go in to see them. You form a bond with other families who are in the same state of shock as you. You see people breaking down as they’re told by a family member returning from the ward that the person, they’re there to see has taken a turn for the worst or just passed away. Sometimes you see people who’ve received what they perceive as positive news trying to hide their joy so as not to upset other despairing visitors in the room, though this was rarer.

It’s an incredibly draining experience that never leaves you. Even when I was by my mother’s bed, she was just a still body in a dark and silent room, other than the intermittent beeping from the ventilator, heart rate, and oxygen monitors. In the solitude, you can’t help but become fixated on these machines, panicking if you think the heart rate is rising too much or dropping too low. Even to this day, if I hear a certain beeping noise from a checkout machine in a supermarket, the sound mentally teleports me back into that room again.

Though on many occasions, the doctors suggested we should expect the worst, my mother managed to pull through. One day her oxygen saturation levels began to rise, a few days later her ventilator tube was removed. After about 3 or 4 more weeks she was mentally back to herself and had regained the ability to walk again through physical therapy. When we were leaving, one of the doctors told us that for a couple of days my mother had been the most ill person in the entire hospital.

My mother did eventually pass away 6 months later after her cancer returned aggressively. She was unable to receive any treatment for quite a while because of her stint in the ICU, which was probably a catalyst for the progression of her cancer. Despite her death, those 6 months were the most priceless gift I could have ever received. Many other patients in the ICU aren’t as lucky.

Looking at the situation with the COVID-19 pandemic today, my heart goes out to families who are in a similar position. At least when I was in the hospital to visit my mother, I had the chance to be at her side and hug her or hold her hand.  Now with the pandemic, some families don’t even have the chance to have any contact with their loved ones or say goodbye.

It was heart-breaking to listen to Emily Glynn Homan talking on Ireland AM. Emily’s father contracted COVID-19 and tragically passed away from the virus. Emily’s brothers had to leave the hospital before he passed away, while Emily and her mother couldn’t even give him a hug or a kiss in his last moments.

For myself and my family, being able to hold my mother as she passed away still offers us huge comfort. Knowing that we were all beside her and that she didn’t feel alone makes such a difference when going through the grieving process. In truth, our time in the ICU was a more difficult experience than her death because of the separation and the sense feeling of despair in the visitor’s room.

It’s one of many reasons why we all need to take this situation so seriously. We don’t realise how many of the public are seriously affected by underlying conditions and the situation that awaits the families of those people in the ICU if they get infected. Unfortunately, it’s inevitable that many more will pass away from this virus, but it’s still all of our responsibility to make sure we do our part not to spread it to the most vulnerable.

 
Jennifer Ahlstrom
About the Author

Jennifer Ahlstrom - Jenny A - Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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