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Back in late 2015, I was diagnosed with Myelodysplastic Syndrome (MDS). I went down to UCSF to have the diagnosis confirmed in the beginning of 2016. They said the cure to MDS is a bone marrow transplant. Instead of going through with the risky procedure (15% chance it could be fatal), I asked if it would be safe to wait a year so I could do a few exciting things before the procedure. The doctor said I should be fine given the diagnosis. Within that year I planned a trip to Disney Land, got engaged, moved to Oregon,and went on a cruise with my family. Positive stuff. Unfortunately, more negatives happened than positives.
I got so sick I was bed ridden and had to cancel the trip to Disney Land, my fiance left me the day our trip was actually planned for, then was hospitalized the next day due to a giant blood clot that had formed in my right leg. While in the hospital for this enormous clot, they found that pieces had broken off and gotten to my lungs. Thankfully the clots weren't big enough to kill me, but it raised some concern with the doctors. Not having the technology to break this clot up, the hospital had to fly me to a bigger hospital in Portland, OR. While in Portland, they were thankfully able to MOSTLY deal with the clot. (I'm still currently taking medication to try and deal with it fully. Hopefully only one more month to go.) While in the hospital, I was also diagnosed with Crohn's Disease (which explained my stomach issues, but we'll come back to this).
I was discharged two weeks later and picked up by my loving mother, and my brother (and my bone marrow donor). I decided to stay in Oregon a little longer and was able to stay with some friends. They, and a few others, helped me clean my stuff out of my, now old, apartment and move it to their garage for a temporary holding. My doctors didn't want me to work anymore, so I lost my job and cannot work until the clot is all gone.
About a week after getting home, I received a call from the Portland Doctor saying I may not have Crohn's and might have been misdiagnosed. Yay! No..I may have an even more rare disease called Behcets. I still have yet to get the final diagnosis on that, though I finally have an appointment to find that one out.
So, since I've been home, I've been constantly dealing with doctor appointments, setting up the transplant, and getting everything together financially.
Moving forward on the MDS stuff. I went down to UCSF to get the ball rolling. They did some blood work and told me a bit more about the procedure. I'm not sure if the chances changed, but they told me now there is a 10% of failure (instead of 15% :D). They also found something called Blasts on my cells, calling for a biopsy. So we did a Bone Marrow Biopsy, as I posted about last week, and we finally got the results. I was called today and told that I have Acute Leukemia. I'll have to start Chemo as soon as possible to fight that before we can start the Bone Marrow Transplant (which requires a different kind of Chemo Therapy). Do to the Chemo, I'm having to contact a Fertility Clinic so I can ensure that I can have future children of my own..and the prices aren't pretty.
Thankfully my family and close friends have been supportive through the whole thing. Not to mention the family members willing to put their lives on hold to be my caregivers through the procedure. Thank you all for being there for me, and continuing to do so through this little adventure.
I got so sick I was bed ridden and had to cancel the trip to Disney Land, my fiance left me the day our trip was actually planned for, then was hospitalized the next day due to a giant blood clot that had formed in my right leg. While in the hospital for this enormous clot, they found that pieces had broken off and gotten to my lungs. Thankfully the clots weren't big enough to kill me, but it raised some concern with the doctors. Not having the technology to break this clot up, the hospital had to fly me to a bigger hospital in Portland, OR. While in Portland, they were thankfully able to MOSTLY deal with the clot. (I'm still currently taking medication to try and deal with it fully. Hopefully only one more month to go.) While in the hospital, I was also diagnosed with Crohn's Disease (which explained my stomach issues, but we'll come back to this).
I was discharged two weeks later and picked up by my loving mother, and my brother (and my bone marrow donor). I decided to stay in Oregon a little longer and was able to stay with some friends. They, and a few others, helped me clean my stuff out of my, now old, apartment and move it to their garage for a temporary holding. My doctors didn't want me to work anymore, so I lost my job and cannot work until the clot is all gone.
About a week after getting home, I received a call from the Portland Doctor saying I may not have Crohn's and might have been misdiagnosed. Yay! No..I may have an even more rare disease called Behcets. I still have yet to get the final diagnosis on that, though I finally have an appointment to find that one out.
So, since I've been home, I've been constantly dealing with doctor appointments, setting up the transplant, and getting everything together financially.
Moving forward on the MDS stuff. I went down to UCSF to get the ball rolling. They did some blood work and told me a bit more about the procedure. I'm not sure if the chances changed, but they told me now there is a 10% of failure (instead of 15% :D). They also found something called Blasts on my cells, calling for a biopsy. So we did a Bone Marrow Biopsy, as I posted about last week, and we finally got the results. I was called today and told that I have Acute Leukemia. I'll have to start Chemo as soon as possible to fight that before we can start the Bone Marrow Transplant (which requires a different kind of Chemo Therapy). Do to the Chemo, I'm having to contact a Fertility Clinic so I can ensure that I can have future children of my own..and the prices aren't pretty.
Thankfully my family and close friends have been supportive through the whole thing. Not to mention the family members willing to put their lives on hold to be my caregivers through the procedure. Thank you all for being there for me, and continuing to do so through this little adventure.