Stem Cell or not to Stem Cell (Transplant)
Stem Cell Transplant
It's been awhile since I have been on here to talk about my autoimmune disease that I was diagnosed with this year. I have been doing quite a bit of research and have decided to go through a study/trial for a stem cell transplant. After going through IVIG treatments and having them not work very well and now being on Prednisone, which I do not want to be on for the rest of my life, I decided to take a more aggressive route, but one that may cure this disease. Of course, they can't call it a cure since it's still in a trial phase, but they have been doing it for at least 20 years for MS and have had great results, I have CIDP and they have only been doing the trial for about 5 years for that. This will require me to go to Chicago since that is the only place in the U.S. that does it for my disease.
The beginning of a new journey. In October I paid my first visit ever to Chicago to see Dr. Burt who does the stem cell transplant. This visit consisted of seeing Dr. Burt, having blood work done, lot's and lot's of blood, having an EMG & nerve conduction test and seeing a neurologist. On this visit I had to rent a scooter because my legs were so weak I could not walk far without tripping and falling. I had just started on Prednisone and Cellcept hoping I would see a quick difference. After visiting with the Neurologist, he recommended me not to take the Cellcept because it could take a few months for me to see any results and by that time I could possibly be getting my Stem Cell Transplant. Ok, so 5 days off Cellcept and Bam, I'm done. I was hoping to see if it would work, but he kept me on the prednisone and as much as I kicked and screamed about not wanting to get on it, it has helped, tremendously.
One month later, I paid a second visit to Chicago for Pre-transplant testing. This time around I was able to walk everywhere without assistance, I did fall twice, but I was overdoing it and pushing myself too hard, but i felt accomplished. I am also down 30lbs, Prednisone? Maybe, who knows, I just know that I feel better. This time around I had to get a CT scan of my sinus cavity, pelvic area and lower abdomen. The reason for the pelvic and lower abdomen is because one of my blood tests from my first visit came back abnormal, CA-125, could be cancer. I also had more blood work, an MRI of my full spine, a 2D Echo, an EKG, Pulmonary Function Test, Vein check, meet with a cardiologist and a psychologist. My first test was the CT scans and that is the one I was most anxious to hear the results of, luckily it is a cyst on my left ovary, nothing to worry about, so far. Now the Doctor wants me to get an ultrasound of my left ovary just to make sure it's nothing more to worry about.
Now is the waiting game. Still have to get the ultrasound and wait for those results then we have to wait and see if insurance will pay for this treatment and if so, how much? The treatment costs $125K to $150K. Yikes, but still cheaper than a lifetime of IVIG and other drugs. The best thing that could happen is that insurance would pay for all of it, but thats highly doubtful, so I doing fundraisers to raise my portion of it and if insurance does pay 100% of it there is still the cost of travel and lodging and medications and insurance premiums. This stresses me out just thinking about it, but it's even more stressful to think i could end up not getting the transplant and living the rest of my life like this. Even though my walking is getting better, my hands are getting worse. I sit here now typing this with one finger on each hand because I cannot spread my fingers out enough to type normal. My hands are weak, I cannot button and have a hard time zipping. I do not want to end up in a wheelchair or paralyzed.
So, what happens during a Stem Cell Transplant? First they will bring you in for mobilization. This consists of a one night in the hospital so they can give you a round of Chemo. The next day they send you to your hotel room with 5 to 7 days worth of Neupogen shots which you will start taking about 5 days after the chemo. Neupogen helps stimulate new stem cells which will be taken out around the 5th day through a vein in the neck and if they get enough stem cells, they send you on your way to go home or back to your hotel room for a week or two. After that nice break you will be checked into the hospital and start 5 days of chemo, thats when they start counting down the days. First day of Chemo is -5 and on day zero you get your stem cells back and that is your new birthday, the they start counting up and on day 10, if everything looks good and all blood tests come back ok, you're free to go home. Supposedly you start seeing some results within days, but it will take at least 3 to 6 months after the stem cell transplant before i am back to normal, if it works for me. What do I mean "If it work's for me?" Of course it will. I have kept a positive attitude and I am looking forward to this journey. I am living on HOPE.
My stem cell transplant fundraising page