We are headed down to the short stay unit again today. My understanding is that Beth is going to have to get another transfusion. I’ve been going in to work each day, and so I don’t get a chance to talk directly with the folks in the hospital, and so I have less information than I’d like. Last I saw, her hemoglobin level was rising slightly, but it’s also been a hallmark of her behavior that, if she’d get a transfusion, she’d feel good, she’d try to do a lot of stuff around the house, and then she’d feel tired again. Maybe that’s what’s happening.
We do have an appointment with Dr Rossetti on Monday, January 9, and we should find out a lot.
Beth is still suffering from itchy, painful blisters on her hands and feet, and she’s itchy in other places as well. She does seem to be having less trouble eating (it’s easy to see that she’s lost some weight during this process).
Beth does not yet have a “central line”, and she hasn’t wanted to get one, because when they do the transplant, they’ll have to put a new one in anyway.
So when Beth has blood taken, they have to use a vein in her arm. As a result of the twice-weekly blood draws, plus all the transfusions, not to mention the Vidaza shots and IVs, she is pretty bruised up.
So the nurse is now looking for an IV specialist, to find a good vein.
For Bethany, how true this is. When she gets a transfusion, she feels better, somewhat normal. But her blood is dying, especially her red blood cells, which are being consumed and not being replaced.
The red blood cells, the hemoglobin, carries oxygen from the lungs to the rest of the body. The oxygen burns nutrients for energy, and the resulting waste products are then collected by the hemoglobin to be released from the body. All of us live by that process.
For Bethany, the other blood levels fluctuate – as you can see in the chart nearby – but her red blood cells just simply fall and fall and fall. At only one point did the hemoglobin number rise (see this previous chart – and there it may simply have been an anomaly, within the margin of error).
This is insidious. When her blood suffers, every cell in her body suffers.
Beth got a call from Dr. Rossetti’s office again yesterday; her hemoglobin had dropped to 8.2, and so that means another transfusion. There seems to be some rhyme and reason to the way this is going. Cycles of Vidaza are indicated by the arrows above the chart.
Hemoglobin: At present, nothing seems to help this except for transfusions. However, these take about 100 days to manufacture, and we are hopeful to see some improvement now, after three cycles of Vidaza.
White Blood Cells: Vidaza seems to whack them, but they recover quickly.
Platelets: Vidaza seems to have a bit of a harsh effect here, too, although most recently, her platelet count has been falling anyway.
Neutrophils: These are very good white blood cells – first responders to bacterial infections – and these are well into the normal range, after having been far off at one time.
Monocytes: Again, Beth has “chronic myelomonocitic leukemia” (CMML), and so getting these into the normal range appears to be a good thing.
Please note that none of the above is a genuine medical opinion, just the musings of someone who has an interest in figuring out what these numbers mean.
Click on the chart to view a larger version. The last column is mostly blank because I don’t get all of these numbers right away. But Beth did get a blood sample on Monday and we do know that she needs this transfusion.
A couple of days ago, we thought Beth might go in for another blood transfusion, but that didn’t quite work out. Today I’m planning to take her in for a couple of units. As I mentioned yesterday, her cut-off point is a hemoglobin level of 8.5. She’s getting this transfusion because she’s at 8.4. She got her last transfusions at 6.9; maybe these today will bring her up to a level of “refreshing” that she hasn’t experienced for quite some time. Just in time for Vidaza next week.
Yesterday I met with my pastor, Matt, and some deacons from the church. They are so incredibly gracious. It is a tremendous blessing to be a part of such a community.