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[Rok Gerl]

Hello,

My dad was recently diagnosed with low risk anemic mds (I believe that’s what I was called…I can’t find my original post!). In preparation for our family vacation he was going to check with his doctor to get cleared to go. He completed a blood test the other day and was told his hemoglobin dropped 30 points in the last 2 months (from 106g/l to 70g/l) and his ferritin is extremely high (2125 ug/l, reference range is 30-300).

Of course he just received a call from the clinic where the receptionist mentioned that he will be looking at transfusions along with medication and then was told to meet with his doctor on Tuesday. He wasn’t told what meds or how often the transfusions will be.

I know we will find out more soon but am curious if anyone can tell me if this is a “normal” progression of the disease and what he might expect in the next while. I’m guessing he may need to be close to home and cancel the trip that we have planned in 2 weeks.

[Meg P]

Hi there,

My mom was diagnosed with high risk MDS about 5 months ago. She receives transfusions twice a week, while also receiving treatment. While her situation is different from your father’s, I wanted to share what it looks like for her so you can understand a little bit more.

My understanding is that as the disease progresses, the body is able to produce less blood and therefore this would be normal. In my mom’s case, which is high risk, she has blood tests twice a week and based on those test results they transfuse what is needed the same day. The doctor has a minimal level of each type of blood that dictates whether a transfusion is needed or not. For example: red blood 80 or under would require a transfusion. The levels may or may not hold – so the frequency of transfusions may be more or less depending on what is being produced by the body. In order to know what your father needs they will need to do blood tests – I guess the doctor will have an idea of what frequency those should start at. The doctor or his pivot nurse should be able to give more clarity about the process and how your vacation would be affected. Personally, if he is feeling good with such low levels and would be able to enjoy the vacation with minimal risks, I would push to get the vacation signed off on by the doctor. Perhaps he could come in the day before for a transfusion and immediately upon return. Of course understanding the risks is important, I don’t pretend I a doctor, however I truly believe that quality family time and morale are extremely important when dealing with this as well.

No issues with ferritin, however I do know that there is a treatment they can give to help reduce it, so that may be what the nurse mentioned. I also read somewhere about wheat grass juice to help reduce iron levels – may be worth asking the doctor about.

There is some good, free, reading material you can order from this website. It really helped me better understand MDS.

Best of luck

[Rok Gerl]

Hi Meg,

Thank you very much for letting me know what this looks like for your mom. I was told that my dad was low risk so I figured blood transfusions were a long way off. Now it seems as though they’re imminent. He received his first one on the 10th and will return after our trip (doctor said it was ok to go with no restrictions) for follow up bloodwork and to see if its holding/when the next one will be.

His doctor said that the iron issue comes from the fact that he has a fatty liver (first we have heard about it) and so they are recommending a medication that will help reduce that. They didn’t seem overly concerned about this issue, though I’m worried they’re missing something because he is so far out of the reference range. Regardless, he will start that when he gets home in 2 weeks.

Thanks again for the reply!

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