I have Lupus, Anti-Phospholipid Syndrome (a blood clotting disorder), CTEPH (Chronic Thromboembolic Pulmonary Hypertension), PAH (Pulmonary Arterial Hypertension), right sided CHF (Congestive Heart Failure), poly cystic kidney disease, Raynauds, vertigo, vasal-vagel syncope, throrasic spinal stenosis, gastroparesis, and migraines. I have had over 100 blood clots throughout my body. I have stents in both of my legs to keep the veins open due to clots. I have 2 filters hoping to prevent more clots getting into my lungs, other than the ones that form there. I had a small stroke on 2014. I have one clot in my internal jugular vein that blocks 70% of the vein. Both of my clavicle veins are completely blocked.
I'm only 45, and I have way to many things to experience in life before I go. I am a support group co-leader for a small Pulmonary Hypertension support group. I'm active in animal activism and I run our churches Facebook page. I'm a fighter and try to stay as positive as possible. My faith pulls me through.
I had surgery in 2012 to remove clots from my lungs and heart at the Cleveland Clinic. The surgery took 10 hours, then I spent 3 days in a medically induced coma, and after 6 weeks I was able to come home. This surgery saved my life as at the time of surgery I only had at most 2 months to live. The surgery has definitely prolonged my life, but it still is not easy. I go for chemo once a month to depress my immune system in hopes of controlling the clotting disease. I'm on a whole slew of medicines including 3 different blood thinners. There are no cures for my diseases and everyday is a gift.
I am in need of a new hospital bed mattress. I need what they call a low air loss and alternating pressure mattress. This helps your blood circulate and reduces the chance of forming blood clots when you are in bed for prolonged periods of time. We bought a cheaper one about nine months ago and it really needs to be replaced. The inner coils only last so long. You get what you pay for and a $300 mattress only lasted about 6 months before I noticed areas where I'd sink right to the bed frame. The inner coils have compressed in many spots. A decent good mattress starts at $3500. I'd just be happy to not have parts of my body sinking to the metal frame. I wake up very stiff and very sore each morning.
Further I just need help with medical bills. I know, your asking you doesn't? I get it. I'm disabled and I do get disability each month. With my various diseases I spend a lot of time in the hospital. I spend about 2 weeks out of every 6 in the hospital. That adds up very quickly especially when your insurance only covers 80%. I just opened one bill today and it's 3 times the amount I earn in disability for six months. I tried to get a secondary insurance and no one will insure me. I had Medicaid until this year. I keep reapplying and they keep denying me. I still don't understand why. I do get $16.00 a month in food stamps so I can get...well not much with that. And yes that is sixteen dollars a month. Without children you just don't matter to the government as much I guess. I do let it roll over each month and use it every six months to stock up on staples. Thankfully I have my sister who helps me buy groceries. She is a single mom with two kids though, but she just jumped right in to help me. She had been my caregiver since 2011. She takes me to all of my appointments and is my legal power of attorney should anything happen. I am very blessed to have her and could never thank her enough.
Thank you for taking the time to read my story and if you can donate even $5 or $10, it will go a long way. God Bless!
- Deborah Webster
- Cathleen Streit
- Lyssa Ann
- Karen Toronyi
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