Welcome to my CaringBridge website. I am using it to keep family and friends updated in one place. I appreciate your support and words of hope and encouragement. Thank you for visiting.
I have been battling a lot of illness for a few years including but not limited to problems with my heart, lungs, spine, spleen and numerous major digestive system issues. I have been hospitalized numerous times in the past few year for varied reasons. My platelet count was always elevated and continued to rise as time went by. No one ever found a reason for the high platelet count until a new Nurse Practitioner at my doctors office saw me ant noticed the high platelet counts that had been going on and getting higher for a couple of years. She sent me to an oncologist who did a bone marrow biopsy. I was diagnosed with a very rare bone marrow cancer. It is incurable. I take oral chemotherapy and will the rest of my life. This bone marrow cancer does not cause everyone who has it the same problems. Some people suffer few problems with it. But there are many possible problems that can arise from it. Not only is it a rare cancer, I'm a rare person who is suffering from almost all of the possible effects of it. My oncologist and I will be treading a fine line between keeping the platelet count down but not killing too many white blood cells.
I have had two heart ablations in the past several months due to my heart rate being almost twice what it should be. Each ablation was in a different chamber of my heart. The last one was the end of this past September 2017. I knew I possibly was going to be needing another one but the plan was to wait until November 2017 when my Medicare would be in place. I was temporarily with out insurance for about 6 weeks while waiting for the Medicare. Unfortunately the need for the ablation became an emergency during that six weeks. I was admitted to the hospital. Three days after the ablation I developed a severe case of pneumonia. I spent eight more days in the hospital receiving extensive treatment for the pneumonia with three types of IV antibiotics and IV steroids. I was receiving visits at the hospital during this time by a pulmonary doctor, my cardiologist, my cardiac surgeon and my family doctor. There were follow-up appointments once I was finally released and continue to be many.
I have severe medical issues with my esophagus and entire digestive system. I receive numerous treatments and medications to keep my digestive tract even semi functioning and have to be very careful of what I eat. For a few years I have had to have my esophagus dilated and hernias fixed along the esophagus. A sphincter muscle that goes from the bottom of my esophagus into the stomach does not function properly. I get this all worked on about every six months. In January I was put back in the hospital for breathing difficulties, chest pain and upper abdominal pain. I was retaining a lot of fluid, very swollen and my blood pressure very low. They did some medication adjustments for this which has helped some..I had a series of scans and an endoscope on my esophagus. They determined my esophagus is now enlarged and is putting pressure on my heart and lungs. All the tissues of my esophagus are thickened causing even more frequent need of dilation. I will from now on have to have this done as little as every few weeks. I will be dealing with this the rest of my life. Because of the thickening of the esophagus I have great difficulty bending over, lifting or carrying anything. It is actually close to impossible. I also have scoliosis which causes pressure on my heart and lungs as well. I do not know what my future holds. I'm learning to face it one day at a time, put my trust in God and give as much of me to my family and friends for as long as I can.
We have been overwhelmed with my medical expenses over the past several months. We have found ourselves in a situation we cannot pull out of. The emergency medical crisis that landed me in the hospital without insurance is assuring we can't pull out. Even before this my out of pocket medical expenses have been massive and will continue to be indefinitely. My medical expenses I have incurred since Sept 2017 are past $100,000 and still growing. It is hard enough to be dealing with permanent chronic illness and inability to physically do for them. It kills me that me and my health issues have caused such financial crisis on us.
Several dear friends have been trying for some time to convince me to try to raise funds through a fundraising site. With the new medical developments this week I am realizing and accepting they are right. I'm going to have to try. So that's what I'm doing. I found it very difficult to make the decision to do this. I feel kind of guilty with all the problems in the world and because there are so many people with major health problems. But my friends convinced me it is ok and that I should try. I have always taken care of everyone around me and always done my best to help anyone who needed help with anything to the best of my ability. If I thought someone had a need I would do anything in my power to find a way to help them with the need or search out help for them. I have put fundraisers together in the past for others with a need. Some were very successful, some weren't but I tried. I am in need of help myself now. But even more than just me this creating a huge hardship on my husband and family. .... Anyway, I have been struggling, wrestling back and forth with the decision to ask for help. As I write this I'm still struggling to find the courage to actually post it.