What is this? Weird bloodwork numbers, not much help from docs
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Anonymous
| Has she has preventative medicine over the years like a colonoscopy? |
Anonymous
DP. It’s really not your job to go through the lab reports and figure out what’s going on. You don’t have the training for that, and even if you did, that still wouldn’t be your role as a family member. Your job is to emotionally support your husband and MIL. There is one glaring thing that I suggest you find out and that seems to be missing from your post. You need to know how sick your MIL is. Is she eating and drinking and walking around? Is she laying in the ICU? If you can’t fly out there, then I think you need to at least FaceTime and see what’s going on. |
Anonymous
I understand what you’re saying. DH and I are not trying to play doctor; I completely agree that’s not our place in this. What we are trying to do is keep up with the info that MIL and BIL are being given, because of the possibility of some things being lost along the way as we get secondhand debriefings. I posted earlier that MIL has been in general good health. She exercises and comfortably lives alone. Before and after her first hospital visit, she was living normally: eating, drinking, moving around. Right now she’s in the hospital again but is lucid, alert and able to participate (appropriately) in her care. She’s not in the ICU, but in an observation bed. We have pre-existing plans to visit her for spring break. Right now DH does not feel the need to go out early, but that could always change as more info comes in. An example of the game of medical telephone: We learned this morning that it was not her red blood cells that were low, but her platelets. The number we got was 1,500, but that seems ridiculously low per Dr. Google, especially because we haven’t heard anything about her bruising all over the place recently. (And see also: golf, swimming, daily life. She was not bedbound or wrapped in cotton wool.) She now has had something inserted(?) or attached(?) that can somehow monitor her levels without the need for regular blood draws. I appreciate everyone who is saying she needs someone there with her, and she does have that. It’s looking like we will be the second wave, coming in very soon to spell BIL and provide additional help as needed. |
Anonymous
| Patient advocates are very important for good outcomes, there is plenty of literature on this. You can only be a good advocate if you are well informed. |
Anonymous
| High WBC and low platelets would be a classic presentation for leukemia, so that’s the most important thing to rule out. It could also just be a virus though… |
Anonymous
| My BIL had this type of wonky bloodwork and then he was diagnosed with an aggressive form of Leukemia. It all happened so quickly, too. He was fine, then sick, then definitely not ok, went to the hospital and it just spiraled from there. |
Anonymous
| OP, any news? |
Anonymous
| One other thought, make sure she is checked for internal bleeding (ulcers). Doesn't explain the WBC count, but most commonly the reason for low RBC. |
Anonymous
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OP with an update. MIL is still in the hospital and we still don’t know what’s at the root of all this. Bone marrow biopsies and other tests don’t seem to point to leukemia (phew!), but there is no clear explanation or diagnosis.
She has received two transfusions of platelets. The first one didn’t move the needle on her platelet count. About a day later she got a second transfusion of a different type(?); we are waiting on the next round of lab work to tell us whether it had any effect. She’s exhausted due to the hospital schedule, with people coming into her room so frequently. But they don’t want to send her home to her own bed until they can figure out what the frick is going on. Again, to look at her and talk to her, you wouldn’t think she had a first-class ticket on the medical mystery tour. She’s alert, not bleeding or bruising at the drop of a hat, walking the halls, eating and drinking normally, interacting with the nurses, etc. But there’s got to be an underlying reason for her blood work, right? PP with the BIL diagnosed with leukemia, I’m so sorry. That sounds like it was tough for your whole family. |
Anonymous
The reports show normal and abnormal. It can help you ask questions. In my experience doctors don’t hate Dr Google if you ask nicely. |
Anonymous
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OP again. Things are now moving fast and furious: MIL has been diagnosed with an aggressive form of a myelodysplastic syndrome (MDS) and starts a course of chemo today. Then they’re talking about a bone marrow transplant in about six weeks. Clearly not the easy solution we were hoping for, but we are thankful for answers and a defined path forward.
DH will likely go out sooner than our original tickets, and I and the kids will follow as booked. After that, we’ll play it by ear. We are very grateful that DH’s brother lives in the same city as their mom, so she has immediate support. If anyone in the DCUM Universe has experience with MDS, or would be willing to offer some general advice for supporting chemo patients (and/or supporting the people who are supporting the chemo patient), whether in-person or from a distance, I would be very grateful for suggestions, links, etc. Right now I’m just concentrating on holding space for my husband and doing what I can to free him up for where he’s needed. |
Anonymous
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https://www.aamds.org/
^^This is the resource for patients and caregivers; located in Bethesda, actually. They are very accessible. |
Anonymous
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Information about stem cell (aka bone marrow transplant):
https://www.lls.org/treatment/types-treatment/stem-cell-transplantation Basic information about transplant: https://bethematch.org/patients-and-families/about-transplant/what-is-a-bone-marrow-transplant-/ Good luck to your MIL. I have been in the transplant world since the 90s - healthcare has come a loooong way. |
Anonymous
At this point, I think you or your DH should call in to important doctor appointments. I did this with my dad when he had prostate cancer. He was just overwhelmed. Too many new words, too much stress and anxiety. He would walk away from doctor appointments with no clue what was discussed. None of the doctors minded - he would just put me on speaker phone when the doctor was ready to discuss things. I stayed mostly quiet and just took notes, and then I'd go over it with my dad afterwards but slowly and looking up words we didn't know. We caught a few important details that way. Like one doctor called the more aggressive treatment one acronym but another doctor who discouraged the aggressive treatment called it something else. Best of luck, OP. Some MDS is treatable, and there are lots of clinical trial options, too. |
Anonymous
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OP, my mom has multiple myeloma (currently well-controlled) and went through the chemo/stem cell transplant back in 2015. One thing I remember is that for ~two weeks post-discharge from the transplant, she had to have someone with her at all times. Not sure if your MIL lives alone (as my mom did), but you will want to plan for that if she does. Even if your FIL is in the picture, it might be helpful to coordinate care to have others there to assist. Ideally people you can count on, which I learned the hard way.
Yes to your DH or you calling into to medical appointments for your MIL. It's very helpful to have someone else take notes, be aware of what's going on, etc. Good luck with it all! It's a process, but it sounds like she's in good hands, and that her ultimate prognosis is a positive one. |