This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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So far.........here's the scoop!

So here it is Sunday....okay, looking at the time it is actually Monday. Where did the weekend go? I feel as if I just got home and it's already time to head back to Seattle. Sigh. It has been nice to be home....I really needed a couple of days of just doing nothing.....that was nice.

So here's the scoop.....

Last week was a whirlwind of doctor's appointments. And, instead of going on and on about each and every appointment I have decided to just give you my schedule. This way those who are interested, curious, or just happen to be reading this....know just what the pre-transplant testing includes.

Monday, August 3rd: Check into the Pete Gross House, Spinal Tap (which includes CSF testing: Oligoclonal Banding, Gram Smear, Cultures (make sure there is no meningitis), Cytocentrifuge (looking for malignant cells), Glucose & Protein. Also lab work: Glucose & IgG)
Tuesday, August 4th: Registration (to "officially" become a patient at SCCA), lab work (which included a UA, crossmatch sampling, CBC w/Smear, CMV, CMP, HIV, HSV Western Blot, JC Virus, Blood Typing, Antiglobulin, and Varicella (Chickenpox). Next was a History & Physical with the transplant PA then an appointment with the transplant RN.
Wednesday, August 5th: Chest X-ray, Appointment with Social Work, EKG, Meet with Financial Representative (Insurance paperwork), Appointment with the Attending Physician & Transplant RN (to go over the various paperwork and sign required consent forms), and last but not least an appointment with the GYN ARNP for a women's health history, physical, breast exam, pap and pelvic exams.
Thursday, August 6th: My one "easy" day, only one appointment.....meet with the Research MD.
Friday, August 7th: Dental history & x-rays, Pulmonary Function testing and meeting with the transplant nutrition specialists.

This is what I have done so far. My schedule (that I have so far) for next week is as follows.....

Monday, August 10th: Lab work, conscious sedation assessment and Bone Marrow biopsy.
Tuesday, August 11th: Caregiver Orientation/Teach with the transplant RN, Culture exam (I'm not quite sure what all they are culturing but I'm guessing it will consist of a stool sample and nasal swab....make sure there are no active infections brewing). Then I will end the day with a full dental work-up.

Currently I do not have anything scheduled for Wednesday and Thursday is the 3 week MRI (you may remember that this whole thing started with a MRI on July 28th....the MRI's have to be about 3 weeks apart).

Most of the blood work is back in and so far looks good. I have not gotten any of the other results yet, however I was told that if anything came back that would be problematic they would notify me right away. So, no news is good news. :)

I have been told that all of the results will be in by Thursday and the hope is that I will be meeting with the doctor for my data review (to go over all the results and get the official yes or no on the transplant) on Friday....Monday at the latest. I should also have the Hickman cath placed either this Friday or next Monday and I should be starting the growth hormone (which stimulates the growth of stem cells) around the same time.

So that is all I know for now. I promise to keep you all updated as I know more. My plan (or should I say hope) is that I will be able to post a combination of posts that will include how I am feeling, my thoughts....hopes, worries, fears and whatever else comes up but also posts that will just be the meat of it all.....my schedule, what that day brought and more.

For now just know I am here blogging to all of you who either live with this illness or know someone who does. I am here to help all of us find a little hope for the future....that we may know that there are people out here doing their best to find an end to MS as we know it and that I am here hoping that my involvement in this study will not only give me my life back but it will get us all that much closer to better treatments and (knock on wood) one day a cure!

1 comments:

kmilyun said...

Jaime,

Whew, what a week of appointments.
I will be reading to see how it goes with the transplant study. Looks very promising!

Hope you get the official Yes Friday so you don't have to wait till Monday.

Jan


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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