looking for some opinions

[lucym]

Mom has been having back pain, at the doc’s today she told him her arms and head hurt too. He is ordering MRI hopefully Monday if approved by ins. Today her counts WBC 2.9, RBC 2.19, HGB 7.0, PLT 19(All down from last week). They were going to give her Red Blood and since she was having a nose bleed they decided to give her plt. After Red Blood decided to give another Red Blood. After Plt they re-ran count, Plt dropped to 13, so they gave her another Plt TX. The nose started to bleed again, they thought they were going to have to send her to ER for Corterize. They got it to stop and sent her home after 8 hours at the doctors office. My question is why don’t they use the nosebleed QR to stop bleeding or corterize and hold off tx? It seems my Mom does worse after tx. I asked the doctor about the pain being from lack of oxygen because HGB was so low ( I read on this site about that) he said no if that was the case she would have trouble breathing. Any feedback would be appreciated.

[patti]

Lucy,

I’m sorry your mom is having such a hard time. I can’t really answer you about the pain your mom is experiencing but I wanted to respond to the other stuff. You are right about it making more sense to use the nosebleed QR and then if that doesn’t work doing the other measures. The only thing I can really say is I find that with my MIL I have to just stand up and tell them what we will and will not submit to and they don’t really have a choice. I think doctors get used to patients being passive and just do what they want. I find over and over again that I have to advocate for mom and if I disagree with something I have to tell them, etc. etc. If you run into this again I would stand up and give her the nosebleed stuff first. If that doesn’t work than you can tell them they can try something else. It’s always better to do minor stuff first then to go for the big guns. It kind of reminds me of shooting a bird with an AK-47. Know what I mean? Start with the little gun first and if that don’t work, go for the next biggest. Save the cannon for the gorilla. Of course, you have to make sure you don’t get killed by the gorilla before you reach the cannon. It’s a delicate balancing act. Trust your judgement.

Also, not everyone gets short of breath/trouble breathing with a low HBG. When my MIL was diagnosed she had an HGB of 6 and never has experienced breathing difficulty. I think that depends on the person.

Hopefully the MRI will enlighten everyone to why she’s having pain. With things that you feel comfortable doing, stand up and do them and don’t feel bad trying something other than what they want. The only word I keep thinking is advocate.

Best wishes,

patti

[lucym]

I will be sure to start speaking up (louder) thanks patti

[hmblume]

Lucym
I had nosebleeds with platelets around 80.I was removed from all anti-inflammatories and aspirin and some other medication. I line my nostrils with Vaseline EVERY night. The backs of my hands would also bleed with the least abrasion; use of skin moistener helps. My platelets are down to the 40’s, but bleeding has not been a problem recently. You may need to experiment a little. Good Luck HB

[Lori]

LucyM
My mother’s hgb runs around 7-8 – last time she went down to 6.2 before she rec’d a transfusion. Typically she experiences shortness of breath below 8 but this time when she got below 7 she talked about how much her legs hurt. By the end of the 2nd transfusion her legs felt fine and she hasn’t complained since. Her platelets where at 9 when she rec’d a platelet transfusion but outside of bruising and petechiae, she hasn’t had any other bleeding. I will certainly remember HB’s advise about vasoline (thanks) because she is getting ready to start Revlimid and I am really nervous about her platelets getting any lower. Good luck.
Lori

[JulesH]

LucyM,

When my HGB would drop below 8.0 I would experience shortness of breath and when I take aspirins my nose would bleed even with a platelet count above 100.

Drs. told me to take Tylenol.

With VIDAZA treatments my HGB stays well above 8.0.

JulesH

[Author]

Posts