This is going to be interesting. My fingers are throbbing already and I am just beginning this post. Nerve pain is no joke. I have tried everything my doctors and friends have suggested. No relief yet and the pain has just intensified. I am hoping to see a neuropathy specialist mid September. To say it's debilitating is the best description. But who needs hands and feet, right? Ugh!
The latest news:
My transplant doctor at Cedars Sinai called my doctor at University of Washington with the next plan of treatment. I have had to answer 2 questions for this treatment.
1. Do I want to go through with the treatment/ Do I want a heart transplant? My answer was YES. The only option to give me a chance for a transplant is to try this next step. It has more serious possible complications and side effects. . I have nothing to lose at this point. And there are no other options.
2. Where do I want the treatment done? My answer was Cedars in Los Angeles. The transplant team and nurses there have experience in using this new and still experimental drug on heart transplant patients. I need this experience. I don't know how to advocate for myself with a new drug I have never been given.
Tocilizumab is the new drug and will be given as an infusion I receive once a month for 6 months. I will be getting the plasmapheresis and IVIG back to back in the beginning, too. I am nervous but trying to trust the staff at Cedars can pre and post medicate me correctly for the IVIG. Never again do I want to experience the toxic side-effects that left me in the ER then hospital for a week like it did in January. I am hoping our insurance will approve for me to do the monthly infusions here in Portland at Providence. It would be so much easier on our family.
That's the scoop.
And it only took me 40 minutes to type.
Thanks for checking in and to my family and friends for checking on me. This journey is long.