Sharing Mayo Clinic - August 2011 Archives

By Patricia Wagner In this final entry, I’ll be sharing as one patient to another the complementary practices which have enhanced my total health. I am most grateful to the M.D.s who treat me, as I’m sure most of you are. I do not look to them for everything, however. I personally have benefited from my spiritual quest. Having a near-death experience as a result of the brain stem stroke gave me a different perspective than most. I am fully aware of my eternal nature and no longer fear physical death. I have found that every blood test and every doctor visit is, however, a reminder that my time here on earth is precious. I intend to be here in the present moment and to have no regrets when my time as Patricia Wagner is finally ended.

I woke up to a sound I had been dreading – rain. And lots of it, hitting the window of my bedroom. With the steady ...

by Patricia Wagner Thanks for sticking with me! In this entry, I’ll be talking about what is involved in being your own advocate. I believe that for myself, I would not be alive to write to you now had I not realized that I am in charge – not the professionals whose help I seek. Initially, I looked for information at my local library. Everything I found on the subject was brief and grim. Eventually, I found a small online support group. We were all in the same boat: we didn’t have knowledge of our disease, how to treat it, or who could help us. In comparing our situations we began to pull together some of the answers. As the support group grew, we even developed an internal list of the doctors we trusted.

by Patricia Wagner In this entry, I’ll talk about how the disease started and a look into how I was affected. Bear in mind that every case is different and you shouldn’t conclude that you’ll go through the same things I have. My case, in fact, is more dramatic than most. I first suspected that something was wrong when I began to lose some of my mental quickness and my physical energy. I also had many other symptoms: bleeding gums, bloodshot eyes, flushed complexion, and abnormally long periods. I saw different specialists for each problem. Then a blood test ordered by my internist revealed very high red, white, and platelet counts. Referred to a hematologist/oncologist in my health plan, I was studied periodically by him but received no treatment. He thought perhaps I had Polycythemia Vera but wasn’t sure.

I’m Patricia Wagner. I’m 58 years old and live in a retirement community with my husband and two cats. I’m now followed by Dr. Ruben Mesa, a hematologist at the Mayo Clinic in Scottsdale. I’m writing this blog series to help others by giving you a glimpse into how I have been impacted by myelofibrosis yet still consider myself to be blessed with a very happy and fulfilled life. If you are a fellow patient, perhaps you have learned much of what I have along the way. If you are recently diagnosed, some of the things I’ll relate may be new to you. My hope is to share a few helpful new ideas with you regardless.

In case you missed Part 1, click here: "Coping with Lewy Body - Part 1". Don writes: Coping with Self-knowledge and Self-doubt I  entered into last summer with the  conviction that I had a fairly good knowledge of my strengths and weaknesses,  that I would know what I can expect of myself in almost any circumstances. Then came the hallucinations and related events. I was told that these experiences had stretched over several weeks rather than the four or five days that I remembered. Most of these “episodes” I neither remember deciding to do or doing. Even when one makes allowance for the effects of various medications which the doctors were using as they attempted to find the most effective combination, this all dramatically called into question my self-knowledge and raised self-doubt.

Don writes: In July of 2010, I was diagnosed as ill with Dementia Lewy Body (DLB). I read whatever I could find on the subject and asked the specialists who were treating me many questions for my own information and to be able to explain to friends how I could be ill while externally appearing as healthy as ever.  One of my most valuable findings was the Lewy Body Journal, an on-line publication by letters from individuals somehow touched by DLB.  With deep gratitude for publishing the journal, I have returned repeatedly to it to acquaint myself and insofar as possible to prepare for what  in all likelihood lies before  me --  and  grateful not to be alone in facing  DLB.

We are proud to say that the Pediatric Oncology Nurses/Nurse Practitioners implemented the Beads of Courage Program at Mayo Clinic using money received from the ...

When Corinne was 6 years old, she was diagnosed with Ewing's sarcoma, a childhood cancer of the bone marrow. Corinne's parents, Mike and Deb Watters, ...

A radio and television broadcaster whose career has spanned more than four decades, Mort Crim has spent a lifetime telling other people’s stories. But in retirement, Crim, who was Paul Harvey’s permanent vacation fill-in and the voice of ABC Radio during the first moon landing, is telling his own story — about surviving cancer and living a full life after the disease. After treatment for both prostate and colon cancer — and supporting his wife, Irene (Renée) Crim, during treatment for breast cancer — Crim says he hopes his experiences can inspire other cancer survivors. He credits Mayo Clinic for his good health today.

For more than a decade, Debra Testa suffered from nasal congestion and severe headaches first thing in the morning. “Even before my head came off the pillow, I would have an excruciating headache, and it was happening quite often — at least once a week if not several times a week,” says the Connecticut native. Testa, now 52 and living in Jacksonville, Fla., visited various doctors over the years. Allergies were ruled out. She was eventually diagnosed with mild sleep apnea — doctors thought this was the cause of her headaches — and given migraine medication. The pills seemed to help after the fact, but Testa says her quality of life was affected. She was constantly tired. The medicine caused debilitating nausea — so severe it began to impact her job. “I felt so sick that I couldn’t get into work on time. When I did come in, my productivity was affected because the medicine made me groggy, too.” On weekends, she was often unable to join her husband of 33 years on bike rides or walks they enjoyed.

When Rob Clary, 44, of Cave Creek, Ariz., needed surgery for cancer in his throat, the surgeon was able to remove the cancer through Clary’s mouth. Last February, Clary had surgery at Mayo Clinic in Arizona, one of a few hospitals in the United States to offer this transoral approach for head and neck cancers. Having this minimally invasive surgery through the mouth, rather than traditional open surgery, allowed Clary to avoid having an incision in his chin, his jaw cut in half, an incision in his mouth back to his tongue and throat, and reconstruction with grafts and plates.