Steven visited the endocrinologist today. No regular clinic visit. He still had to get his blood drawn for lipid panel and metabolism panel. Steven's counts all look good....most important is his glucose, cholesterol and lipids were all normal. The past huge spike in glucose was due to his immunosuppressants and TPN when he wasn't eating when admitted. Thank goodness. A diagnosis of Type 2 Diabetes or pre-diabetic is a diagnosis that effects your health insurance the rest of your life. It's a stigma that you can't get rid of. I couldn't be more happy that his chemistries seem to be back to normal and even happier that he doesn't have to check his glucose anymore.
Steven has started the process to be a Peer Counselor for Be The Match. Be The Match will match Steven with BMT patients that have questions or concerns and want to talk to someone who has gone through the process. It's a great program...similar to the one I participated in for caregivers. It's so good to be able to vent or bounce ideas off someone who can emphasize and sympathize. Steven passed his background check and is currently working on his on-line training. It's good to give back!
Wednesday, March 22, 2017
Wednesday, March 8, 2017
Day +454-Day +504
Another month since our last appointment and everything seems to be going well. Steven has had little to no GVHD that we have seen and he took his last Tacrolimus pill 4 weeks ago. He is officially off of his immunosuppressants. We got his counts back and everything looks good! Our oncologist said we need to be vigilant looking for graft vs. host disease and will need to call him. So far, the only GVHD has been in the form of a rash on his neck and chest. Nothing earth shattering however, something that needs to be monitored and noted. No immunosuppressants.......a huge milestone! We don't need to be seen for 2 months.....but we have an endocrinologist appointment in March. Oh well!
Steven has an overdue appointment at the eye clinic at USC. We should have made this appointment a long time ago. Our local ophthalmologist said Steven's eyes looked good but our COH oncologist wanted us to see an oncology ophthalmologist who specializes in GVHD and he recommended the Doheny Eye Clinic at USC. After calling the USC Eye Clinic, it turns out the Doheny Eye Clinic merged with UCLA so they made an appointment for Steven at the Roski Eye Clinic at the USC Keck Medical Center....so confusing!!! Yep, I'm as confused as you are! Steven was there ALL morning. They did an extremely thorough eye exam with every test in the book. He was seen by a oncology ophthalmologist who said Steven had no evidence of GVHD in his retina....follow up in a year!
More collateral damage.....Steven's teeth moved some point in this process, big time. He had to see an orthodontist who recommended Invisalign. If all goes according to plan....is there a plan??...his treatment will be a year. Cha ching!! Thank goodness for insurance! I was hoping he could coordinate his rubber band colors with what he was wearing to work but no :) Don't ask what's next...we are taking one day at a time.
Steven has an overdue appointment at the eye clinic at USC. We should have made this appointment a long time ago. Our local ophthalmologist said Steven's eyes looked good but our COH oncologist wanted us to see an oncology ophthalmologist who specializes in GVHD and he recommended the Doheny Eye Clinic at USC. After calling the USC Eye Clinic, it turns out the Doheny Eye Clinic merged with UCLA so they made an appointment for Steven at the Roski Eye Clinic at the USC Keck Medical Center....so confusing!!! Yep, I'm as confused as you are! Steven was there ALL morning. They did an extremely thorough eye exam with every test in the book. He was seen by a oncology ophthalmologist who said Steven had no evidence of GVHD in his retina....follow up in a year!
More collateral damage.....Steven's teeth moved some point in this process, big time. He had to see an orthodontist who recommended Invisalign. If all goes according to plan....is there a plan??...his treatment will be a year. Cha ching!! Thank goodness for insurance! I was hoping he could coordinate his rubber band colors with what he was wearing to work but no :) Don't ask what's next...we are taking one day at a time.
Tuesday, January 24, 2017
Happy New Year 2017!
Happy New Year! Our holidays went well and we even got out and did a couple of things as a family. One of the memorable events was decorating the City of Hope float for the Rose Bowl Parade. I've always wanted to decorate a float but never thought in a million years it would be for COH. Not only did this have special meaning for us but some of the other volunteers were COH bone marrow transplant survivors. There is comfort speaking with others who understand what you have gone through. Sometimes it's hard to describe events to family and friends without sounding ungrateful or complaining. I guess part of the problem is if someone asks me how Steven is doing, I'm really going to tell you!
I've made a New Year's resolution to start living life again. Steven's illness was defining me and I started feeling like I couldn't think of anything else or move on. We still have challenges but we have come so far. It's time to start thinking of other things besides our next appointment and blood count results. There is a certain amount of PTSD involved with going through a major medical event. Ours was not without exception however it is time to move on.
We passed another milestone at Steven's January appointment, after next week, he can stop taking his last immunosuppressant. Steven has been slowly weening off of Tacrolimus, decreasing one tablet every 2 weeks. This past month we have been asked to be vigilant with any symptoms of graft vs. host disease (GVHD). It has presented itself in the past as a rash on his chest and up his neck. It's a mild symptom, never the less one we need to keep an eye on. Steven's new bone marrow is still trying to figure out what should be there and what shouldn't be there in the cellular world. The goal is to be off all immunosuppressants unlike those patients who have had a large organ transplant. They are on immunosuppressants the rest of their life. It's all about your immune system! We go back in another month.
I've made a New Year's resolution to start living life again. Steven's illness was defining me and I started feeling like I couldn't think of anything else or move on. We still have challenges but we have come so far. It's time to start thinking of other things besides our next appointment and blood count results. There is a certain amount of PTSD involved with going through a major medical event. Ours was not without exception however it is time to move on.
We passed another milestone at Steven's January appointment, after next week, he can stop taking his last immunosuppressant. Steven has been slowly weening off of Tacrolimus, decreasing one tablet every 2 weeks. This past month we have been asked to be vigilant with any symptoms of graft vs. host disease (GVHD). It has presented itself in the past as a rash on his chest and up his neck. It's a mild symptom, never the less one we need to keep an eye on. Steven's new bone marrow is still trying to figure out what should be there and what shouldn't be there in the cellular world. The goal is to be off all immunosuppressants unlike those patients who have had a large organ transplant. They are on immunosuppressants the rest of their life. It's all about your immune system! We go back in another month.
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