Dear Annie,

Thanks for your reply. My hemoglobin is 8.7, which is not the worst it has been in the past (6.7) but I am feeling it. We did start some treatment for it a couple of weeks ago, injections which are supposed to help the bone marrow make more red blood cells (Aranesp). So far it's taking awhile to take effect, which apparently is normal. Maybe in a couple more weeks there will be some improvement (?).

Yes, I have had a sleep study in the past, but there aren't any plans to do one right at the moment. I know sometimes my oxygen levels can dip down, but it's not consistent, so apparently it's not a problem. I do not qualify for oxygen support. I do sleep with a non-invasive ventilator (BiPAP/AVAPS machine) to assist my breathing.

The hospital does blood tests weekly as part of my plasmapheresis treatments. My CO2 levels are generally around 20 or 21. They have been running low. I have had ABG tests in the past, but not lately. Generally those results are high, so that it appears that I am hyperventilating, but I am not - I guess it is just that I have a hard time breathing because of my respiratory weakness.

Yes, it would be nice to get a second opinion if I could. I am thinking about it also but it's hard to work out the details. I know where I would like to go if I can arrange a ride there.

Thanks again, and sending best wishes your way.

Take care,
Erin

Hi Erin,

I can't offer any insights to having both these diseases but we have lots of experience with anemia. My husband had SAA was transfusion dependent for two years. Anytime his HGB dropped to 8.3, he would get red cells transfused. That is usually the standard threshold for transfusions. However, some cannot tolerate a HGB below nine and will get transfused at 9 or even 10. You may want to talk to your doctor about getting some red cells until the Aranesp kicks in.

Also, if you haven't already found this forum, you may want to check it out. It deals with blood disorders and there are quite a few people with MDS there.

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Marlene

Dear Marlene,

Thank you so much for your reply! I'm sorry to hear that your husband had SAA, and had to live with regular transfusions. Here, the threshold for transfusions seems to be different. I think the hemoglobin has to be below 7. At any rate, I'm not eligible. It's also different for men and for women.

Thanks for the recommendation about the other forum. I will look into it!

Take care,
Erin

Erin, That "threshold" varies according to other complicating factors. MG is definitely one of those factors.

When I had hemorrhaged for months after a bad uterine biopsy, my hemoglobin was in the 8s after surgery. I had a transfusion (2 liters)! MG makes breathing worse, and anemia only adds to that. A savvy doctor will make sure that you have enough red blood cells in your body.

I just hope they have determined the correct cause of the low hemoglobin. An alternative to a sleep study is an overnight oximetry. You get hooked up during an appt. and then your O2 is monitored overnight. Very useful. I've had it done. A pulmonologist is normally who does that.

I really hope you can have that 2nd opinion! You need to stand up for yourself. Protocols can be changed. They often have more to do with a bottom line or a doctor's rating system than a patient's health. Sad yet true!


Annie

Dear AnnieB3,

I'm sorry you hemorrhaged so badly after surgery, and needed a transfusion. I hope it helped though. When I had a transfusion in the fall of this year, it really made a big difference right away. Like you, I got two units.

I have been talking with my doctors, and I'll keep talking with them. I have been trying very hard to advocate for myself. Even yesterday, I asked my doctor if the combination of anemia and myasthenia gravis could be making things worse, even though technically I'm not at a severe level of anemia. I asked if I could be eligible for other treatment. This was my neurologist, and she said anemia wasn't really her area, but the answer was no, I am not a candidate for a transfusion or other treatment. All of the doctors are saying so, including the hematologist. I am on Aranesp injections, which are supposed to help my bone marrow make more red blood cells, so I hope things will start getting better soon.

Thanks,
Erin