Journal entry by Anne Gacek —
I am so sorry for my internet silence over the last month. With school and sports going in to full swing while also trying to increase my patient load at work, it has been a little overwhelming to keep up with everything. The good news is no news is good news and there have been no significant changes to really report so things have been going pretty well health-wise. Just the usual of trying to balance rest and activity and the ongoing advice from my therapist on how to do so. She thinks I am pushing too hard at times and our weekly meetings generally center around my need to make more time for some mindfulness activities so I can better care for myself.
I had my 3-month out-of-the-hospital follow-up with Dr. Olyaee, my transplant MD, and my transplant coordinator, Craig, last week. The good news is my MELD score (model for end-stage liver disease) has decreased to a 10 which is excellent, especially compared to the score of 26 that I was hospitalized with last spring. The major use of the MELD score is to prioritize allocation of organs for liver transplantation among those with chronic liver disease. My lower score means we are cleared to travel for Thanksgiving so we are now looking forward to spending the holiday with my parents in AZ. The bad news is, while my liver enzymes are decreasing, they are not as low as m MD expected them to be at this point. They were also slightly elevated in my labs prior to my MD appointment. So I've been prescribed Xifaxin and they have doubled up my immuno-suppresants. Yay, more pills!! I also must continue to come in for weekly labs instead of graduating to every two weeks which had been my hope going in to the appointment. So we will see if the med changes are effective over the next couple weeks. If my enzymes continue to not respond as expected, they will schedule another biopsy. Other than that, I will have a sonogram in December and will follow up with Dr. Olyaee again in March. The med changes have made me a little more fatigued and nauseated but I think I'm starting to adjust to them.
I attended my first liver support discussion group with Mike at the beginning of September. The group is very supportive and full of people and caregivers in all stages of the transplant process. It was fascinating and very educational. We discussed the new allocation rules that are being pushed and most likely to be implemented in the near future which could make getting a organ transplant more difficult. Currently 80% of people in the Midwest are organ donors while only 40% of those living on the east and west coasts are listed donors. Because of this, many people will move to the Midwest either temporarily or permanently in hopes of bettering their chances of receiving an organ transplant. The new rules would no longer focus on allocating organs regionally but instead more nationally by need urgency. Another item of interest we discussed was the use of a living donor vs. deceased donor. (KU MED is a deceased donor only facility) Apparently, if one is a living organ donor, they can then be considered as having a pre-existing condition and denied health insurance coverage in the future. What a reward for saving someone's life, huh? Makes one wonder why they can't drum up more organ donors. (insert sarcasm) We also learned about the Transplant Games which is an Olympic-type event where organ donors and transplant receivers come to compete. There are both national games and international games. One of the group members had just returned from the national games and will be heading to Texas for the international games later this year. Last year, the international games were held in Barcelona which is fun. The group meets again this Wednesday night and I'm really looking forward to it. As I said, it seems to be good group of people.
Other than that, it's just same ol', same ol'. Taking meds can get quite weary every morning and I admit there are days when I just don't feel like taking them...but I still do. But I now have a deeper understanding when my patients complain about taking their meds and sometimes skipping them. I've had to start shaving my knuckles as the hair on my hands, arms, face, neck, and back grows and thickens. I feel as though I'm morphing in to a blonde ape though I suppose this extra "blanket" will come in useful for an extra layer of warmth as we head in to winter. Mike and Janie are doing well and have admitted that they sometimes forget I even have an ailment. This, of course, can be good and bad. I'm still pretty tired by the end of the day and have tenderness through my right upper quadrant most of the time so I'm trying to be careful not to get run down and sick as I move from house to house with flu season arriving. And yes, Mother, I am getting a flu shot this week. The fall and football season have made me miss being able to have a beer or two - especially when watching the painful Huskers this year - but I suppose being alive is a good trade off. I'm working on finding some fall-like mocktails now.
So we'll see how the next couple weeks go and if my enzymes start coming back down to the expected levels. I will try to be more consistent about posting now that we know what the short-term and long-term plan of care is going forward. Hope you are all doing well and thank you for listening/reading!
AG
I had my 3-month out-of-the-hospital follow-up with Dr. Olyaee, my transplant MD, and my transplant coordinator, Craig, last week. The good news is my MELD score (model for end-stage liver disease) has decreased to a 10 which is excellent, especially compared to the score of 26 that I was hospitalized with last spring. The major use of the MELD score is to prioritize allocation of organs for liver transplantation among those with chronic liver disease. My lower score means we are cleared to travel for Thanksgiving so we are now looking forward to spending the holiday with my parents in AZ. The bad news is, while my liver enzymes are decreasing, they are not as low as m MD expected them to be at this point. They were also slightly elevated in my labs prior to my MD appointment. So I've been prescribed Xifaxin and they have doubled up my immuno-suppresants. Yay, more pills!! I also must continue to come in for weekly labs instead of graduating to every two weeks which had been my hope going in to the appointment. So we will see if the med changes are effective over the next couple weeks. If my enzymes continue to not respond as expected, they will schedule another biopsy. Other than that, I will have a sonogram in December and will follow up with Dr. Olyaee again in March. The med changes have made me a little more fatigued and nauseated but I think I'm starting to adjust to them.
I attended my first liver support discussion group with Mike at the beginning of September. The group is very supportive and full of people and caregivers in all stages of the transplant process. It was fascinating and very educational. We discussed the new allocation rules that are being pushed and most likely to be implemented in the near future which could make getting a organ transplant more difficult. Currently 80% of people in the Midwest are organ donors while only 40% of those living on the east and west coasts are listed donors. Because of this, many people will move to the Midwest either temporarily or permanently in hopes of bettering their chances of receiving an organ transplant. The new rules would no longer focus on allocating organs regionally but instead more nationally by need urgency. Another item of interest we discussed was the use of a living donor vs. deceased donor. (KU MED is a deceased donor only facility) Apparently, if one is a living organ donor, they can then be considered as having a pre-existing condition and denied health insurance coverage in the future. What a reward for saving someone's life, huh? Makes one wonder why they can't drum up more organ donors. (insert sarcasm) We also learned about the Transplant Games which is an Olympic-type event where organ donors and transplant receivers come to compete. There are both national games and international games. One of the group members had just returned from the national games and will be heading to Texas for the international games later this year. Last year, the international games were held in Barcelona which is fun. The group meets again this Wednesday night and I'm really looking forward to it. As I said, it seems to be good group of people.
Other than that, it's just same ol', same ol'. Taking meds can get quite weary every morning and I admit there are days when I just don't feel like taking them...but I still do. But I now have a deeper understanding when my patients complain about taking their meds and sometimes skipping them. I've had to start shaving my knuckles as the hair on my hands, arms, face, neck, and back grows and thickens. I feel as though I'm morphing in to a blonde ape though I suppose this extra "blanket" will come in useful for an extra layer of warmth as we head in to winter. Mike and Janie are doing well and have admitted that they sometimes forget I even have an ailment. This, of course, can be good and bad. I'm still pretty tired by the end of the day and have tenderness through my right upper quadrant most of the time so I'm trying to be careful not to get run down and sick as I move from house to house with flu season arriving. And yes, Mother, I am getting a flu shot this week. The fall and football season have made me miss being able to have a beer or two - especially when watching the painful Huskers this year - but I suppose being alive is a good trade off. I'm working on finding some fall-like mocktails now.
So we'll see how the next couple weeks go and if my enzymes start coming back down to the expected levels. I will try to be more consistent about posting now that we know what the short-term and long-term plan of care is going forward. Hope you are all doing well and thank you for listening/reading!
AG
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