I know all of us are anxious in the current CV19 atmosphere in addition to waiting to hear from our tribe member Lori Gluckman Winterfeldt to tell her personal account of a 3 week hospital stay due to coronavirus. Lori will be personally giving her detailed account in the future but in the meantime she felt it imperative to give an update, to share, to help, to uplift her fellow tribe members.
Lori is a 28 year survivor (diagnosed at age 24) treated w/mantle radiotherapy and ABVD chemotherapy in the early 1990s. She has her spleen. Lori was diagnosed with hypothyroidism about 2 years post-treatment. She received treatment for breast cancer, received a pacemaker due to heart block as well as a mechanical heart valve, along with a mitral valve repair, all during her 40s.
Her CV19 symptoms were a feeling of coming down with something, low grade fever and some tightness with breathing. She was transported and admitted to the hospital after calling 911 on day 3 of symptoms.
A CT scan and symptoms were highly suggestive of CV19 but tested negative twice. Remarkably Lori, hospitalized on oxygen, was able to advocate for herself while keeping in touch with her survivorship Dr and cardiologist at MSKCC. As she got weaker w/gastrointestinal symptoms and breathing issues Lori was still in control to demand a rescue inhaler that nursing refused to provide.
Her fortitude continued by informing her husband and parents that she was adamant about not being put on a ventilator. She had a DNR order also. With Lori deterrorating, her medical team insisted a vent was her only option. At this point Lori knew she wanted palliative/hospice care thinking back to a recent experience with her Mother in Law. She was given morphine and prednisone, no vent, and does not remember much of this week. Her husband and family were allowed to visit and slowly Lori improved. Also, a third CV19 test came back positive. Once her home was prepared with a hospital bed, commode and oxygen she was transported home for hospice care. Ultimately she had no nursing care at home per her and her husband’s wishes.
To this day, Lori is reducing her oxygen intake and prednisone while getting stronger! Lori’s story is so much more than what I have written. Through her entire ordeal she was her own best advocate. She knows her history, her body, what is best for her. She was given enough strength to fight for what she instinctively knew she needed and wanted.
This rendition doesn’t portray the amazing sequence of events that Lori will provide in the future. She is anxious to help each one of us giving rise to the fact she is a founding member of Hodgkin’s International. We gathered to brainstorm in her home and shortly after HI came to fruition!