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Chirley
Thu May 30, 2013, 10:21 PM
Hi

When I was transfusion dependent my haematologist would transfuse if the Hb was under 100 and dropping. One unit if 90-100, two if 80-90, three if 70-80 etc. Due to the frequent monitoring I usually had two to three units every second week.

I'm slowly becoming anaemic again and am not seeing a haematologist. My new doctor only wants to keep the Hb above 80. I know that I don't tolerate anything below 85 very well.

Can I ask what level other people try to keep their Hb above? I have scarred lungs from pneumonia and always run oxygen sats of 92-93%. Would this make me more likely to require a higher Hb?

Thanks

Chirley

sstewart09
Thu May 30, 2013, 10:49 PM
They transfused my husband at 80. He always got 2 units. When they transfuse depends on a patient's threshold and treatment plan, so it will vary for each person.

Lbrown
Fri May 31, 2013, 12:04 PM
I think my level is 90 because I work full time. I have recently had it at 75, but after weeks of being so low I finally asked for 3 units. I like to at least keep it somewhere in the 80s right before a transfusion. I go every 2 weeks though, so it is tough always having it drop so fast.

Deb

Chirley
Fri May 31, 2013, 07:13 PM
Hi, I feel as if I'm being a bit precious wanting my Hb kept in the high 8s as a minimum but anything below this and I can feel my heart pounding, get breathless easily and have a constant low grade headache.

Years ago I used to be able to work with my Hb in the 7s.....looking back, I don't know how I did it.

I do wonder though whether its worse if you have lowish oxygen sats to start with.

Regards

Chirley

sbk007
Sat Jun 1, 2013, 12:41 PM
Chirly, My GP told me that as you age the time to infuse is different. For example a 40 year old male will by default be sent for infusion if HGB goes below 7, while a male in there 70s will be infused at 8. this is because the oxygen is needed by the organs in your body and as you age it becomes more of a factor. Also, the levels change they can go up, so if your hgb is 7 one day it could go to 8 just because. its not always a one way trip down.

Chirley
Sat Jun 1, 2013, 10:00 PM
My Hb on Thursday was 85 (finger prick at the surgery, ? accuracy) and I'm having difficulty doing things like vacuuming the house. I have to keep stopping to catch my breath.

I'm quite disabled and just walking with my walker is hard work, so vacuuming is hard at the best of times. I do vacuum the whole house every day because I have a dog and two cats with white floors. I'm also a little OCD about cleanliness, but aren't we all when our immunity isn't the best?

Maybe I've been transfusion free for so long I just forgot what it was like and I need to get used to the new (old) normal.

Thanks for your answers.

Regards

Chirley

Cheryl C
Mon Jun 3, 2013, 03:18 AM
Hi Chirley - I'm a fellow Aussie so always read your posts. Have you tried having a drink of good quality pure grape juice each day? Not a cure, of course, but it's good for red cells and just might help a little bit.

Chirley
Mon Jun 3, 2013, 05:56 PM
Hi, no I haven't tried grape juice but just lately I've been tempted to try a bit of fermented grape juice :D:

I received a phone call at 8pm last night from the Physician who wants me to have a blood test today (was due anyway) and then a "little" transfusion. Apparently, copper deficiency can cause lung dysfunction so the shortness of breath may be non Hb related.

I'm comfortable when I'm sitting around reading or on the computer so I think I'll just have to chill out about the housework for a while.

It will be interesting to compare the surgery's finger prick Hb test to the laboratory one. This finger prick one is still new to me.

Regards

Chirley

Cheryl C
Tue Jun 4, 2013, 10:43 PM
Ha, Chirley! Good that you still have your sense of humour...

billyb
Wed Jun 5, 2013, 12:57 AM
We get blood when our Hematocrit is 24% or below which is probly somewhere around 8 to 9 gm/dl, anything under 22% Hematocrit and Tinas head starts pounding, we average 2 bags every 7 to 10 days

Chirley
Wed Jun 5, 2013, 01:27 AM
I'm in hospital as I write. I'm having 3 units of blood. My BP had dropped to 80/40.

Hb was 71. Haematocrit 22%.

I kept getting faint every time I stood up and I think that was contributing to the shortness of breath. Unfortunately my BP tends to drop very quickly due to my neuro problem. I'm just going to have to live with it.

I'm luxuriating in being waited on at the moment, it's so nice to have someone bring me a cup of tea etc and not have to battle feeling faint fending for myself. Now that I'm MRSA positive I get a room to myself too......bliss. I'm being discharged tomorrow morning, so I won't be here long enough to get bored.

Regards
Chirley

Glenda H
Wed Jun 5, 2013, 07:39 AM
It will be interesting to compare the surgery's finger prick Hb test to the laboratory one. This finger prick one is still new to me.

Regards

Chirley

What is this finger prick? Is it something similar to someone checking their sugar levels?
The Medical Centre I go to (GP) have a policy that you have to make an appointment to get blood test results. However these same results go to the Haematologist as well as the Physician (who oversees the blood transfusions) and his receptionist will give results over the phone. When I know my HB is around 80 I will ring them for results and request to have a blood transfusion.

Chirley
Wed Jun 5, 2013, 04:00 PM
It's just like a blood glucose monitor. The doctors surgery told me that they are pretty cheap to buy but they are not always reliable. I was thinking of getting one anyway just so I have an idea of what's happening but I'm also wary of becoming obsessed by counts so I might ask my GP if he thinks its a reasonable thing to do.

It's almost 6am and they have just started my third unit of blood so ill be able to go home soon.

Regards

Chirley

Neil Cuadra
Wed Jun 5, 2013, 07:23 PM
They use a finger prick to check my HGB before I donate blood. Perhaps it's not as accurate as CBCs but it's fast and the results are good enough to make sure I'm eligible to donate. The purpose is to screen out blood donors who are anemic for any reason.

Chirley
Wed Jun 5, 2013, 09:48 PM
I've never been eligible to donate blood due to a heart murmur but before I knew that, I tried to donate once and I think I remember they pricked my finger then.

I looked online and you can buy a Hb monitor for $149US plus extra for the test strips. That's very cheap for the convenience of not going to a laboratory until you know it's very necessary. I'm lucky that I don't have to pay for my blood tests (most of the time) but this would be a cost effective alternative if you did receive pathology bills.

I worked out the difference between a Haematologist and a Physician. The Haematologist tells you a number when giving neutrophil results, the Physician just says "they're rubbish". I find this kind of funny.

Feeling wonderful today

Regards

Chirley

Glenda H
Thu Jun 6, 2013, 07:38 AM
I looked online and you can buy a Hb monitor for $149US plus extra for the test strips. That's very cheap for the convenience of not going to a laboratory until you know it's very necessary. I'm lucky that I don't have to pay for my blood tests (most of the time) but this would be a cost effective alternative if you did receive pathology bills.

Regards

Chirley

I might look into it. When I see the haematologist when he comes up here he writes me out a script for 6 blood tests and the last one was for fortnightly. Of course when its time for cross matching for transfusion I have to have a blood test. He comes here on either a Tuesday or a Wednesday so I always have a test on the Monday so to have the latest results when I see him. I'm thinking if everything goes to plan I could use the HB monitor the alternate weeks.

4bcsboys
Fri Jun 7, 2013, 04:30 PM
Chirley,
I noticed too a difference in my response to low hemaglobin levels. I seem to get symptomatic when it gets to 8.5, once even at 9.1. When I described my slow thinking, something "just not right", and scaring one of the nurses in the ICU (I'm a pharmacist) when I was 9.1 they transfused me. It seems that I notice a quickened heart rate lately prior to feeling dizzy or short of breath. But, I'm 5 years older than I was when first diagnosed, and I was transfusion free for over 4 years. I got the hematologist to agree to not let me go below 8.5 because I really scared some folks at work and almost hit the floor a couple of times. I've wondered about the age-related thing.
Mary

Chirley
Fri Jun 7, 2013, 07:23 PM
When I had my transfusion a couple of days ago the doctor told me that he had a 78 year old lady in the next room who had a Hb of 75 post surgery and that she was completely asymptomatic. (I think he was having a dig at me). After thinking about it, I decided that when I was lying around in bed I was asymptomatic too. But, I don't have that luxury. I live by myself, do my own cooking, washing vacuuming etc all while I'm disabled with highly spastic legs.

I just smiled at the doctor and told him I must be a bit more precious than that lady because I definitely didn't feel good. That's how my issue starts as well....I get an irregular heart beat then get dizzy and breathless. I was recently diagnosed with ectopic heartbeats and am taking Propanolol but although my heart feels less "fluttery" I still have missed beats.

Oh well, if that's as bad as I get I have nothing to complain about. I feel very blessed compared to a lot of people on this forum.

Regards

Chirley

Lbrown
Mon Jun 10, 2013, 12:37 PM
By that logic, maybe that lady's surgery would fix you too.

Stupid comment. Good for you for sticking up for yourself.

Deb

Marlene
Mon Jun 10, 2013, 01:20 PM
I second that!!!!!!