Meeting Dr. Brodsky

The consult went well today at Hopkins with Dr. Brodsky. He was very knowledgeable, patient with my questions, open to ideas, and most importantly, confident about this treatment for autoimmune conditions. Whether or not my body stops attacking my muscles permanently is an unknown but something we will find out with time. Doing HiCy again is a possibility but that would only be if I was in remission for say 4 years, not if I flared again in a few months. Bottom line...50% or more of MS patients have improved from this and Dr. Brodsky didn't see any reason why I wouldn't follow this trend.

Other good news, with my age, 34, there isn't much risk to ovaries (5-10%). Other positive parts, were that if all goes well and with Dr. Christopher-Stine's OK, we could taper my dose of Prednisone following the HiCy treatment. There is more risk for me in terms of bone loss, cause for cancer, etc. with all the drugs I have been on than with this treatment. The mortality rate with HiCy is less than 1% (among 140 patients none have died), nothing more than what I have dealt with with already.

Good news on the family front, seeing Graham the first month I come home is fine and no problem. My immune system will be able to handle most normal things, but I heard that I have to stay away from people or babies that have just been vaccinated with live vaccines. All those vaccines I had for Africa travel will be long gone.

Also good news, it is OK to have raw fruits and veggies as long as they can be peeled- this means we can continue juicing instead of eating hospital/hotel food etc. OK, I probably won't be doing my normal wheatgrass shots right away, maybe Andrew will be able to bring in some real food. Also, catheter will be smaller than the pheresis one.

Dr. Brodsky went over what to expect: Hair loss, nausea, immunity will go to zero and will come back with the help of meds, and I will probably need a blood transfusion. I was aware of all of this. Hair is nothing in comparison to not moving, being nauseous I can handle, if I get a fever they will give me antibiotics, and I just have to accept the fact that I may need a transfusion. Also, we will have to stay in the Baltimore area for 3-4 weeks and found out that housing is not covered by insurance. Joyjoy.

We then went over polymyositis triggers and how it might affect this treatment if one of the triggers was still unidentified in my body. There are many viral and environmental triggers, and if there was an infection in the body which triggered all of this, I would have cleared it by now. Doing this HiCy would actually introduce tolerance for such infections, meaning if I still had some bacteria in my body my new immune system would be better able to fight it.

We did a strength test and he was surprised by my weak hip flexors and upper arm strength. I did well on balance! But I didn't have a moving child, toy, or dog to walk around=)

So now we wait for Dr. Brodsky to get the verbal OK from Dr. Stine and then we can set up an appointment to do some testing to make sure once again that we can go forward. ex. blood work, pulmonary function (which I have already done), heart/MUGA test, and probably more. So after that day, we set up a day for the line to be put in, and we start treatment. It did not sound like a lot to go through to get started. The longest wait may be for doctors to talk and for insurance to go through. He did mention that this protocol is used so much now that insurance is covering it with less hassle. He said we could possibly start in a month, which is what I would prefer. I am anxious to get this over with before the holidays and before flu season.

I will try to do some video of my graceful self so I can have a strength comparison.

Thank you all for your thoughts, wishes, and offers to help. We have such amazing family and friends and are so grateful.