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Thursday, January 16, 2014

I received some terrific news today. I went to get my pathology report from the oral surgeon today, and he said there was no more cancer. All three sample were benign. I can't tell you what a relief it is not to have cancer. The first sample indicated dysplasia, which is pre cancerous, the second was a malmalenoma, and third sample turned out to be keratosis, which just some scar tissue. THANK GOD!! I'm over the moon with this good news.

I would like to thank all my family and friends that prayed and supported me through my little rough patch. I couldn't have done without everyone's support!


Stay on a positive path, pray, and don't be afraid to take a helping hand. Positivity feeds the mind, body, and spirit. It is a essential part of the healing process, and I think one of the most important.

Wednesday, January 15, 2014

Morning all, hope everyone is doing fine.

Spoke to my Dad today, and he is  trying to get his daily meds through Medicare. To delve into this you need to be aware of a a few things. First, and most importantly he is a lung cancer survivor and a diabetic. Second: he is  currently taking medications to maintain his breathing and diabetes. These meds are a necessity and maintain his current health.

He is currently on Medicare for his coverage. They changed his carrier to another. No notice, no time to adjust, just bam done! How is this possible? Now the new carrier decided that one of his insulin meds is not covered, and none of his breathing meds either. He must now gets his doctors office to prove he actually needs this required medication. Really? The system is broken here. Your going to interrupt someones care because of ignorance about medications. These are not policy decisions here this is our lives. Quit playing Russian rolluet, with our lives and use some damn common sense.

This is not the first time I witnessed this. The Medicaid system did the same exact thing to my mother while she was battling breast cancer. They actually suspended her chemotherapy treatment because she needed to go to a general prationer to say she had actual cancer, even though she was seeing and being treated by a oncologist. It's absolute insanity. And it needs to change!!

Tuesday, January 14, 2014

Transformed by Transplant: Thanking God and my donor for my life!

Transformed by Transplant: Thanking God and my donor for my life!: Thanking God and my donor for my life!
Great morning so far, made a appointment for my eye issue yesterday. Hopefully there is not too much damage.Moving right along the topic on my mind today is advocacy. I can blame some of my health issues on the medical treatment I received or lack thereof, but not everything is their fault. What  took me while to realize is that  I  had more power than I realized. The power of being my own advocate in my health care.

I strongly attribute my success in gaining control of my health care from learning to ask questions, and not being afraid to be assertive. I think most times people fail to realize that the doctors work for you, not the other way around.

When I was first diagnosed in the eighties we didn't have the Internet to supply us with information like we do now, it took some effort. My Mom spent hours in the public library, reading and researching everything she could get her hands on. I went to classes and support groups, but they didn't usually offer much information. We kept up with research and breakthroughs as much as possible. We had to advocate our interest to my doctors, and stop them from rushing us through their cattle line of care. I cannot tell you how many times we avoided tragedy and malpractice by being our own advocates, from everything to wrong doses being administered, to to shoddy medical diagnostic equipment. It is our job as patients and care givers to ask questions, ask your nurse in the hospital what your are being given. What's the dose? Who ordered it and why? You can say no if you don't recognize it or don't understand why it is being given. Most hospitals and doctors offices will provide you with information on procedures and drugs, you just have to ask. You are your own best weapon in fighting for your health care.

Monday, January 13, 2014

Thanking God and my donor for my life!

Morning all! Having a bit of trouble with my eyes today. I suffer from Diabetic Peripheral Retinopathy and I had a blood vessel rupture again, in a my left eye this time  (it's usually the right eye that gives me the most trouble). Blogging today is a bit of a challenge, but I feel as though I need to do it. I have come to realize it has been very cathartic for me to keep doing this blog.

The transplant wasn't the only incident health wise, to happen to me. When I was 10 years old I was diagnosed with Juvenile Diabetes.Struggling with that for many years caused a plethora of issues resulting from uncontrolled diabetes. I have : PDR, Gastropharesis, Neuropathy, Kidney Failure (resulting in the transplant), and most recently mouth cancer from the immunosuppresant drugs.  Through it all I tried to keep positive and move forward with my life despite setbacks.

Growing up this way sure wasn't fun, but I have to say to the main reason that I ended up in a downward spiral was lack of good quality medical care growing up. Not having insurance because of a preexisting condition was brutal. Limited by Medicaid as to how much you could have in medicine was stupid and dangerous. Only 1 bottle of insulin a month ( I used 2), 1 bottle of blood sugar test strips, no urine test strips,.I couldn't get approved for referrals to Endocrinologists, long clinic visits with  no result, and inexperienced staff at hospitals and clinics that didn't know how to treat a diabetic child. I was lost in the government shuffle.

Fortunately I'm no longer a diabetic, however the damage is done. My hope is that the Medicaid and Medicare can catchup with the strides in treatment. When I was younger I really would have benefited from a insulin pump to manage my disease. Medicaid didn't pay for them. Diabetic treatment has grown leaps and bounds in just a few decades.Medicare and Medicaid need to catch the hell up.

Sunday, January 12, 2014

My journey has been difficult. Despite those difficulties, I have tried to maintain a positive attitude, although at times it was hard. I found comfort in prayer, friends, and my family. I am so very grateful for everything I have. The transplant has made my life so much better. I often think about the family that lost a loved one and allowed me to live. You feel as though you want to take on the world, give back as much as you can so the family that donated to you, are proud of what you did with your  precious gift. I was fortunate to have a medical team that really treated the person, not just a ordinary patient. They really tried to help you navigate while you were there. Then you're home and you are own your own, and freaked the hell out.

Getting to the transplant stage was fraught with so many obstacles. The red tape is astounding, I mean it just blows your mind at how disorganized the whole process was. It was demanding and frustrating. The insurance company and Medicare never would work together,even though they know the rules of the pre authorization game. They just don't want you to know.

My feeling about giving back is with knowledge. The knowledge of trying to navigate the medical nightmare that was created by insurance companies and medicare.  I was so confused and frustrated by that process that sometimes, all I could do was just put my head in my hands and cry. It was a fulltime job jumping through the medical hoops that have been created by policy and ignorance of the illnesses.

I had to be my own advocate. After leaving my job due to my illness unbeknownst to me, I had gained a new job, navigating the medical community. 
This is my first blog on this forum. I am excited to be able to discuss topics pertaining to the struggles we face daily following transplant. The gift of life  is the greatest gift you can ever receive, but with that comes a great sense of responsibility and sometime survivors guilt. Also the constant battle to maintain and pay for the costly life saving medications that post transplant require.

I hope to be able to help myself and others navigate through this difficult journey.