Hurry Up and Wait
With the help of my family, I have decided to get an HSCT, or stem cell transplant. This is a process that has been practiced for many years for blood related cancers and for MS, but the FDA only approves it for the treatment of cancer. What this means for MS patients is that insurance companies have the opportunity to deny funding it based on the fact that it’s considered an “experimental treatment.”
However, they have been doing this treatment to stop the progression of MS for close to 20 years now, so technically, it is not experimental. They know what they are doing, and it works. In fact, it works so well for some that one man who had it done 18 years ago has now had his medial records changed stating that he no longer has MS! He has a clean bill of health after getting the HSCT done! How can they not be openly calling this a cure? How can they not be recommending this for all MS patients that are going down hill and have failed all the medications out there, like me?
I would love nothing more than for a pill or take a shot to make me better! But for those of us that have failed all the meds out there, I believe that the HSCT is the best thing to happen to MS so far. It is hope for a cure! I believe it to be that cure, and I cannot wait any longer for something else to pop up. I am no longer able to work, I am no longer able to stay up for a normal period of time, I go to bed by 5 or 6 a lot of the time, and I live in constant pain. This is no way to live.
If it can help people before they end up in the state I’m in, why not try it? It has less potential to kill me than driving a car or heart disease, so I feel that’s pretty safe. I still drive my car every day! 😉
It really has stopped and reversed a lot of problems for over 85% of people who have had it done! I don’t understand why no one is informed about this unless they meet someone who knows about it. I don’t understand why it’s not all over the news and being talked about regularly by the MS Society. If there were a potential cure for cancer, wouldn’t it be all over the news?? I just find it odd that the MS Society is so disengaged from this treatment even through it has become so much safer than it was in the past.
For me, it is worth the risks that come with it for the hope of being able to keep taking care of my kids, and maybe to run again! I can’t stand this sedative life I have resorted to! I think a lot of people with MS feel the same way, too. A small chance of death and a slightly higher chance of getting cancer is worth the chance of living free of 24hr. pain and the inability to use my hands well or getting a wheelchair just so I can walk over 50 feet without resting. And what do I care if I lose my hair? I can no longer apply makeup, so what the hell? 🙂
My plan is to get it done, but now I need to figure out a way how. My insurance agreed to pay the costs of all the pretesting needed, which could not have been cheap considering it took 2 weeks and they did a lot of testing. So the fact that they denied the request of treatment within 48 hours was somewhat shocking. Why would they pay for the testing, which I cleared with flying colors, and then not even consider the treatment?
After the first denial, the hospital wrote an appeal speaking to all of their reasons why it was in fact necessary for me, and they had no reason to deny it. They shot back a nearly identical rejection letter within 24 hours! We have now retained a lawyer, who thinks we will win a lawsuit if I get denied again after she submits the second appeal on her letterhead. The problem with waiting for a lawsuit to process, is that it will likely be a year before it gets settled, and I do not feel I can wait that long at the rate I’m going.
So my backup plan was to get the treatment done in Germany, where it is performed on a regular basis for MS, and we would pay out of pocket the 90 grand needed and hope to get back when the lawsuit overturns the denial by the insurance company. I set up a fundraising site to help offset the costs here: https://m.helphopelive.org/find-a-patient/profile/index.cfm/patient/A72A1C7A-EB32-6872-B8FDE089D89F0FAE/
But my backup plan has disappeared. For some unknown reason, the hospital in Germany denied my request for treatment also. I have no idea why, I’m healthy except for the MS, and many neurologists I have seen here in the US think I’m an ideal candidate, and we were offering them cash. Why would the say no? I will let you all know when I find out, but for now, I just have to hurry up and wait some more. The 400 grand wanted by the Seattle hospital is not exactly the kind of money we have lying around for a rainy day!
Hopefully I will have heard about the second appeal filed by my lawyer next week. My plan to keep depression from taking over is to keep writing, keep hoping, and keep praying. I will get better, I just don’t know how yet!