March 13, 2018 at 9:30 am #35956
My bilirubin count has been creeping up and is now at 1.6. Dr would like to see it below 1.2. Has anyone else experience this? Diagnosed june of 2017 with MDS-RS, he has mentioned high bilirubin the last two appointments so must have been high going back to at least October of last year. Just wondering if anyone has had this issue and what was done about it.
April 4, 2018 at 4:21 pm #36056
- This topic was modified 9 months, 1 week ago by Allan Romriell.
Hi Alan. I hope this message finds you happy and well. It has been several weeks since I last posted and I just came on to take a peek. I saw this thread and I’m responding because that was account that has been creeping up for my husband. As a matter of fact when we went to receive our BM be results at the oncologist, Leon brought this up and pushed for a liver sonogram. The oncologist did not think it was really necessary as there were no other red flags regarding liver function, but he wanted to appease Leon and ordered the sonogram. We now have an appointment with a hepatologist since the results of that sonogram showed Leon’s liver is a bit enlarged and that he has echotexture a moderate amount along with fatty infiltration. My husband does not have a history of alcohol use so they do feel they need to Take a more in-depth look at this. The oncologist is not sure if it is connected, he said it may not be, but our appointment is scheduled in late April in Baltimore Maryland. How are you feeling?
LyssaApril 5, 2018 at 9:40 am #36057
Thanks for the info, I will be interested in what you find out. I have been feeling pretty good, had a few days I felt pretty tired, but not sure if it was MDS effect or had a minor bug of some kind. It only lasted for 2 or 3 days and then I was back to normal. Been getting out doing yard work as spring has warmed things up a bit. It feels good to get out doing stuff but I am paying for it with sore body…. I go in for my next apt on the 10th so see what they say then. If the bilirubin is still up I will go and have some test done to see what is going on. My oncologist is mildly concerned about it but says he wants me to go to my regular doc to have it checked out. Only trouble is my regular doc has quit and now I need to get another one. This new medical system is kind of the pits if you ask me. At least it is out here in Idaho. Between doctors moving their hospital affiliations and insurance companies changing who is in network its hard to keep up. Well good luck to you all, I will write more when I know something. Thanks again for the input.
AllanApril 11, 2018 at 9:36 am #36154
Appointment yesterday, bilirubin holding steady at 1.6. Other counts pretty good as well, all about the same or slightly lower. I am pretty much where I was with counts last summer, so dr is happy and we will go back in july to see where we are then. Hope everyone else is doing ok, god bless you all in your struggle.
AllanApril 12, 2018 at 6:23 am #36175
So good to hear Allan! Leon gets his first round of blood work since having the BMB in late February. We are keeping our fingers crossed for good counts. I cannot help notice how easily he tires. I am not sure if I am noticing more now since becoming aware of this “wait & watch” or maybe his counts have dropped some in last 6-7 weeks. He saw his cardio on Tuesday and his Afib has finally settled (although he is on Xeralto and Cardisone). The cardio encouraged him to remain positive. Hoping a happy spring for all here.
LyssaApril 12, 2018 at 10:00 am #36184
Being tired most of the time seems to be my norm now, even though I am not in need of any treatment. I used to be able to work pretty long hours doing yardwork etc. Now I need frequent rest breaks and at times I just don’t feel like doing much but sitting down watching tv or whatever. Although my counts are pretty much the same as a year ago, my energy level and stamina have taken a pretty good hit. I assume it is just the accumulation of time with the anemia that is doing it? Hope all is well for you both, take care.
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