Knowing when your red blood count is low?
 

Do y'all notice when your getting low prior to getting a blood pannel done? I am getting good at knowing when I will need a transfusion or am I just fooling myself.

Still waiting to get a BMT date, this is really frustrating just being told to sit and wait... I am not someone accustomed to that. My son says God did not give me patience...:)

Cam,

In my experience, patients can often tell when their red count is low because they'll feel achy or headachy, lethargic, and even have a feeling of slow thinking and a lack of concentration from the lack of oxygen you can get with a low red count. However, it's easy to guess wrong about just how low you are, and other factors can fool you, so judging how you feel is not as reliable as getting a CBC check.

You know your body better than anyone else, so I think it's reasonable to slow down or use more caution when you think you're particularly anemic, but to let the doctor have the last word about when transfusions are necessary.

Went today to have my CBC. I was right it is 7.4.. Of course i did three miles on the treadmill before I went to get it done. Then they yelled at me for doing that... Last week they told me to get in shape, they should make up there mind...

low rbc
 

When they first found I was anaemic (after having been told it was stress/depression/alcohol/laziness/menopause etc for 6 years... grrr) my Hg was 6.5 and I felt awful - dizzy, tired, depressed, confused/forgetful, bad tinnitus, sweating, itchy/crawling sensations, headaches. The last time it dropped (down to 9.4 from 11) I noticed the tiredness/breathlessness first, then a lack of concentration/bad mood. Had a transfusion at this point, as I was worried about my ability to drive safely and do my job (IT)

However it doesn't always follow that when I feel cr@p my Hg has gone down - on two occasions I thought it had, but when checked, had actually stayed the same or gone up. So I think some of my symptoms are due to other things. I know there is an element of psychology involved in my case, as I did immediately feel more lively when told that my counts had gone up!

It's good that you still feel able to exercise at this level, and I'm sure it is better to push yourself (within reason) rather than do too little.

Cam

For me it seems around Hgb 8 things changed drastically as the way I felt. I also know the Dr wants the levels above 8 typically. The physical therapist I worked with also says the type of excercise they prescribe changes below 8. It must be a watershed mark for how you body behaves.

Scott

I get the pounding of my heart beat in my ears especially on exertion but sometimes even when sitting down. Also any little incline or stairs make me feel like I have just hiked ten storeys! Also, I have definitely noticed my brain isn't working as well as usual, I call it "pregnancy brain" because it was definitely how I was early in my pregnancies & when breastfeeding.

Is funny I get where all of you are coming from. When I am low I get the chest stress as I call it, and wake up with muscles sore... I hope everyone has a great Thanksgiving.

I know when i need a refill
 

I get extremely SOB just walking from small parking lot to the building where I work, in addition to a constant dull headache, but it's the extreme fatigue and the inability to focus-this slowly comes on just about every 15-20 days and sure enough, my lab draw will show a Hgb of 7 or less and RBC's 3 or less.

Cam;
Earl gets what I term 'brain fog' - he doesn't communicate properly, and also gets the muscle cramps. He becomes weaker as well - his target rate is 8.5 - anything below that - he needs blood.
I wish you much luck with your BMT - that is one thing that Earl will not be able to do. They have told us because of his age - 66 - and his weakened condition - he will not be able to have a BMT.
Take Care, and I hope you and your family have a very Merry Christmas.

Beth

MDS
 

Hi Beth,
Good to hear from you and Earl! Has he tried magnesium sulfate for his muscle cramps?
http://www.saltworks.us/salt_info/epsom-uses-benefits.asp
Kind regards
Birgitta-A

Birgitta;
No - he hasn't tried that - but is on so many supplements, I really hate to add another - but I may try.
He had 6 units of PRBC's last week, along with 4 bags of platelets. He still does not have an appetite - and continues to lose weight and get weaker. He now has to use a cane all the time to get around, and there are days when he doesn't even want to get out of bed.
On top of that - I really feel he is getting more and more depressed. Our PCP at home put him on Celexa, but I can't see any improvement in him at all.
It scares me - thinking that this may be our last Christmas, New Years (the night we met) and anniversary together. So far - the Vidaza doesn't seem to be doing a thing, and the Revlimid - in my opinion is only making his platelet tank. i am at the point where I think we should just keep him transfusion dependent, and stop all of the meds.
Sorry for me ranting - it is just so hard to see him slowly leave me.

Beth

Milliken - I take magnesium for the cramping spasms and I don't get them anymore. May you have a Merry Christmas.

Magnesium sulfate
 

Hi Beth,
You know you can get magnesium sulfate for example by taking a foot bath with the salt called Epsom salt (magnesium sulfate). I do that for muscle cramps in the calf muscles.

Celexa belongs to the SSRI drugs that now have been reported to treat MDS. I have posted about these drugs at the thread New drugs. https://ash.confex.com/ash/2012/webp...aper54539.html. It takes at least 3 weeks before you can see any effect on the symptoms of depression.

If Earl is responding to Vidaza you ought to see that after 6 months. I have read about patients who respond after a few weeks when they take Revlimid and other patients respond after more than 4 months when they already have stopped taking the drug.

Hope you will have a peaceful Christmas in spite of this disease!
Kind regards
Birgitta-A

Sit and Wait
 

Sit and wait is easy said than done in my opinion, I have been sitting and waiting for 10 years now, Meditation does help but when u do get anemic from time to time, it's very hard to just sit back and wait , I did get advice to get a BMT 5 years ago and looking back now I'm glad I did hold in there as treatment has advanced and new drugs have come available,
All the best I know exactly what your going through.