Mayo Clinic Connect
Does anyone have B-PLL or have been a caregiver for someone who has or has had B-PLL? I need to communicate with someone who understands.
Liked by peggy1944
Barbara, we have a ferral cat that I named Sneaky Kitty (because it is so afraid of people it hides) Sneaky shows up for meals and I hope one day will not run off when I'm near. I still have neutropenia on venetoclax. Reduced dose didn't correct it up to now. WBC is low, all other numbers are good. .Cold and flu season will be very dangerous on a low WBC
Liked by Justin McClanahan, peggy1944
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We've been talking cats enough;time to get back to business. On 8/18 my HGB was6.3 so I was given only 1 bag of infusion really due to heavy fluid retention.One bag does not do it.By 9/1 my hgb was 5.5,WBC 2.9.RBC 1.93.R platelets 73. A call from the hospital insisted that I come in.I said before I would never do that,but I gave in. Now I say again I will never do that!!!!!!
Barbara, please take care of yourself. Your platelets are too low and WBC is below normal. HGB is way too low as you know. The danger is that you're getting less oxygen to your organs and more likely to get an infection. I understand not liking the hospital and I think your levels are going down so fast that is why you were asked to go to the hospital. Are you there right now?
Liked by Colleen Young, Connect Director, peggy1944
I believe it was just 7 hrs. this time; I have never yet stayed over night.More later when I can think straight. The most important function of oxygen is the brain;the last thing I want to lose.
Didn't have to go to the hospital at hgb 6.2,but was given 1 bag again,I don't know how I'll make 2 wks on 1 bag.
Barbara – if you have to go 2 weeks at that level, then I wish you the best 2 weeks with enough energy to go about your day and I hope you find something you can do to enjoy the time to your next infusion.
In my situation I'm doing ok on the venetoclax but they gave up on my neutrophils and I'm below normal. Since I didn't get sick or have a fever they think I'm ok the way it is with below normal white blood count (nothing needs to be done about it yet).
Hi, I was reading about b-pll and found this:
Feeling tired, pale color, fever, easy bleeding or bruising, bone pain…
Very similar as vitamin c deficiency,
have you ever checked your levels of ascorbic acid ?
Have you tried liposomal vitamin c to boost your immune system ?
smora1, I had many blood tests and vitamin C didn't come up as deficient, although vitamin B-12 and folate were recommended. I do believe vitamin C is important and use high vitamin C foods frequently.
Liked by peggy1944, srmora1
I eat lots of tomatoes & orange juice because I love them,not because I believe any vitamin will cure B-PLL.Have you heard that green chilies have 3 times the vitamin C as orange juice…..maybe hearsay ;need checking. More after my test on Sunday.
HGB was 6.2 again.The only 1 bag of infusion seemed to work better in 2 wks than the usual 2…could it have anything to do with the fact that it was O+ ? I doubt it,but let's see what tomorrow will bring.
Hello Barbara! I have been gone so long I am really too embarrassed to post! Am so glad you are boning up on Vitamin C, I believe it is essential to your overall well-being. Hope today you are doing OK and getting healing sleep, I actually slept past noon after going to bed early. Best wishes, Peggy
Barbara – I wonder why only one bag was better? But good results are welcome! Fluid retention can be painful and decrease activities levels, I'm hoping you don't have that with the one bag. I have my next dr visit next week and will see what my WBC is doing, hoping for it to increase to normal
I think I am joking because was given 10+which is my boyfriend's type. His leukemia is almost as bad as ours.It's the other way around. If you have fluid retention, your veins can't handle 2 bags.I'm learning.This one bag looked awfully skimpy…..later.
Skimpy was putting it mildly! My red cells were 1.72 @Hgb 5.0 this Sunday.There was a shortage of nurses and they tried to put me off until Tues ,but I convinced them it wasn't a good idea.They (whoever they are) decided I was right so they ordered 3 bags….2 on Monday and 1 on Tues.I think I am going to do a lot of sleeping tomorrow
Barbara I'm glad you stuck up for yourself and what you needed. Good!
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