Thank you for visiting my Personal Fundraising Page. On May 1, Matt, Jozz and I are becoming part of the 1st annual CareWalk for thalassemia, to help raise money for the Cooleys Anemia Foundation (CAF). CAF is the nation's leading advocate for people with thalassemia. The Foundation provides valuable patient service programs, funds important medical research and educates the public, the medical community and elected officials about thalassemia. One of most vital parts of CAF is the Thalassemia Action Group (TAG) which is their patient outreach and support group. I was elected as TAG President last year as many of you know. Being in this position has highlighted even more the need for fundraising. (For more information, visit www.cooleysanemia.org or call 800-522-7222.)
As you all know I have thalassemia and consequently receive life saving blood transfusions every other week. By May 1st of this year I will have received 298 blood transfusions which totals approximately 745 units of blood. Blood transfusions are the easy part though. Although a typical transfusion day is no less than a 12 hours, I also need to follow a very intense medical regimen (READ MORE about my medical regimen below).
The most difficult part of having thalassemia is of this disease is that I NEVER get a break – I am very compliant with my therapy and every year I follow my comprehensive annual care regimen, just to start over again. Of course my reward is that I am still alive, but sometimes when I get down I wonder “is it all worth it? Am I worth it?” This past year has been a challenge for me – both healthwise and otherwise I have had my share of breakdowns – but it is worth it. We lose close friends every year – this year I lost one of my very best. The average age for a person with thalassemia is 31 years old. I am 38!
As for Matt - I think he has a more difficult role than me, because he has to live with me, my ups and downs, my good days and bad. He often feels helpless when I am riddled with pain and no one wants to watch that. Yet he loves me with all of his heart and lives life to the fullest. Despite being told I had thalassemia on our 3rd date, he dove into our relationship without trepidation, and rather than running away he has embraced the "thal world." He has become a pillar in the thalassemia community, helping patients at our retreats, speaking at events, editing newsletters, and doing a lot of behind the scenes work on his own spare time. I think being the patient is easier than the constant stress and worry he must face deep down - not that he ever shows it. He has been nothing but a loyal and selfless husband who is with me "every step of the way." In honor or thalassemia he plans to walk 20 miles on May 1st.
Jozzie is a huge part of our lives and our absolute joy, along with our parakeets Moose and Thor who will fly their laps that day. Jozzie isa very sensitive doggie and she knows when I am not feeling well. When I am down for the count she lays by my side until I feel better. She is amazing! Jozz will plan to walk 3-5 miles on May 1st in honor of her mommy.
Beyond the funding – which is vital, CAF and TAG provide me with a sense of unity, caring and acceptance. At the age of 25, I met someone else with Thalassemia for the first time (shout out to you Rose) and went to my first TAG conference where I met Dr. Vichinsky. Without CAF/TAG and that chain of events I would be long gone. That is why I have devoted much of my life to thalassemia and giving back to the cause.
All of you at one time or another have asked me what you can do to help. Being my friend of course is the best gift you could give me and will always be. I have never been one to talk much about my medical challenges outside of the professional arena, or really taken up your offer to help me. So now is the time I am asking for your help. Your willingness to sponsor Matt and I will enable CAF to continue their vital work. Many thanks for your support - and please forward this to anyone you think might want to donate too!
AND THE INFO YOU HAVE BEEN ASKING ME ABOUT: WHAT EXACTLY DO YOU HAVE TO DO TO STAY ALIVE??
Since thalassemia is so complex and time consuming I have broken down my medical regimen into categories and kept track of how many hours I spend on medical care for a 3 month period.
□ Hematology – everything blood related: 6 blood transfusions – 12 units of blood – 72 hours; Blood Tests which include my pre-transfusion type and cross match and Shots – 2 hrs;
Doctors appt with my Hematologist – 1 hour
□ Chelation therapy (lovingly called the Desferal Pump) - this gets rid of excess iron caused by blood transfusions. I administer a liquid medication called Desferal via a little plastic pump with a needle which I poke into my stomach or legs. I infuse this medication no less than 15 hours a day - usually up to 20-24 hours - 7 days a week. it is rigorous but vital to my health and well being. 1590 Hours of wearing the Desferal Pump; 12 hours mixing Desferal and organizing supplies
□ Cardiology – heart failure is the #1 cause of death and I have a complex cardiac history including 2 incidences of congestive heart failure, a diagnosis of pulmonary hypertension since resolved and a cardiac clot. Echocardiogram, 2 EKGs, 2 Cardiology appts. – 3 hours
□ Gastroenterology: all the medications I take effect my GI track. GI Doc appts: 2 hours. I had 3 endoscopies in 9 months to treat a pyloricstenosis - 17 hours
□ Research Studies: Children's Hospital Oakland, where I go 1-2 times a year for care specializes in thalassemia. I donate my body to thalassemia research whenever I qualify for a study which most recently was on Osteoporosis (also caused by thalassemia). I have the bone age of a 71 year old woman and am with osteopenia which is the step before osteoporosis. Arthritis in my back, hips and other joints. I spent 20 minutes a day standing on a vibrating platform – 28 hours.
I also too a Trip to LA to participate in iron studies. I did an Oral Glucose Tolerance Test to check for diabetes and MRI study of iron storage in the pituitary gland, pancreas and heart – 11 hours.
□ Alternative Medicine – infection is the second leading cause of death among people with thalassemia so a few months back I started going back to an acupunturist - 24 hours
□ Pain Management: Chronic back pain is my #1 issue and as most of you know I have tried EVERYTHING. I began going to a Chiropractor for adjustments, traction, muscle therapy– 12 hours; X-Rays – back and hand – 1 hr minutes; Physical Therapy – visits to the therapist and home exercises - 17 hours; Pain Physician – 1 hr
□ General Care: Appointment with a primary care physician/annual physical – 1 hour. I take 16 medications = 30 pills a day. I organize my medications every Sunday. 3 hours. Traveling to and from medical appts – 39 hours; Paperwork, paying bills, making appts, phone calls etc – 10 hours;
Grand Total for 3 months = 256 hours (85.3 hours a month) + 1590 Hours of wearing the Desferal Pump
Please help by sponsoring our walk; taking a walk; passing this information along.
Our goal is 1,000 walks on May 1st. Thank you for helping our cause.