View Full Version : Post transfusion Hb check
Chirley
Thu Jun 27, 2013, 08:10 AM
Hi, I had a 3 unit blood transfusion today. The lab didn't do a Hb with the cross match so I don't know what my pre transfusion level was.
One hour after the end of my last unit of blood the Hb level showed 85. I know I felt bad before the transfusion but I don't think my Hb would have been in the 50s.
How long does it take to get an accurate Hb level post transfusion? Should it show an immediate increase? The result also said I had NRBCs, burr cells, stomatocytes and elongated cells. Could this be a sign of haemolysis?
I'm a bit disappointed (worried) about the speed and severity of my transfusion dependence. The Nurse Manager mentioned having another transfusion next week. I really don't want weekly transfusions. My liver is already unhappy.
Regards
Chirley
Marlene
Thu Jun 27, 2013, 11:17 AM
Three units is lot of fluids especially when you add the saline drip. Stands to reason that until your body removes the excess fluids, your CBC would be diluted and show a lower HGB number.
Celery and/or watermelon can help you move that fluid out.
Lbrown
Thu Jun 27, 2013, 12:18 PM
That's a good question, I have wondered that too.
When I get red cells, the only saline added is right at the end to flush the line. I am pretty sure by the end of the day I've already gotten rid of excess fluids, but I've never had a test right after a transfusion.
Deb
Chirley
Thu Jun 27, 2013, 03:48 PM
Haemodilution crossed my mind too but I didn't get any saline. When the blood ran out they simply flushed my port with a 10 ml syringe, heparin locked it and removed the needle because the blood had run out and the line was full of air. The line was not flushed with saline between blood units. My doctor is very cautious and is very on the ball about having too much fluid. He even comes and listens to my heart and lungs after each unit of blood. (Threatens Lasix :eek:).
The woman from pathology came about an hour later and took the blood test from my arm. The Hb taken half an hour after my previous transfusion of 3 units was 104 (pre Hb was 75) and my line was flushed with saline that time.
I was just wondering if this is what people mean when they say that "transfusions don't work any more". Maybe some donated blood just doesn't "take".
Also it's almost 18 hours since my transfusion finished and I'm having trouble breathing. My chest feels tight and I'm wheezing. I don't get asthma and this hasn't happened before. I will ring the doctor when he starts work (it's 5.40 am here) and let him know. It's not bad, just uncomfortable.
I suppose I can ask him about the post transfusion Hb at the same time. Maybe it can take a day or so to rise sometimes.
Regards
Chirley
Marlene
Thu Jun 27, 2013, 04:47 PM
That's a good idea to contact them. It could be an allergic reaction to one of the units. Do you get pre-meds for red cells? John would have to take an antihistamine for all blood products. He got hives from red cells once and from then on, they wanted him to be pre-medicated for them. I don't think he reacted to all red cell transfusions but since they couldn't predict which ones would cause a reaction, they wanted him pre-medicated all the time.
Chirley
Thu Jun 27, 2013, 04:55 PM
When I was treated by the haematologist I had pre meds because I had lots of antibodies and had a rash and fever one time. Then I didn't need transfusions for a long time and then I was told they couldn't find the antibodies any more and this new physician doesn't order pre meds.
I wondered about the antibodies because its two different labs. The first lab had a list of 6 antibodies, this new lab says no antibodies. I don't know how that works though, something else to learn about when I'm not so tired.
Regards
Chirley
tytd
Thu Jun 27, 2013, 08:24 PM
Hi Chirley,
It sounds like you might need some Lasix if you are having trouble breathing after 3 units of blood which is a lot of fluid all at once. I think it takes more than an hour for the vascular system to equilibrate and give you a more accurate Hb reading. You may have indicated this in your other posts but what does your hematologist think is causing your recent need for transfusions? Is it because of the copper level or some other reason? Good luck tytd
Chirley
Thu Jun 27, 2013, 10:14 PM
Hi, I stopped having copper treatments because I became sensitised (requiring Dexamethasone, Hydrocortisone, Phenergan etc) to them and I was requiring more and more just to maintain the same blood level.
I received a phone call from the doctor 15 minutes ago and he said the Hb level would be an accurate reading because it should be measurable within half an hour of the transfusion. I have to have another blood test on Monday and depending on the result, perhaps another transfusion. My neuts were 0.17, platelets 110 (good).
I guess the question I was trying to ask was.....how/why do blood transfusions stop working? I have read other posts where people have stopped having transfusions because they "stopped working".
My doctor said we have some important things to discuss and I want to be prepared.
My dog and cats are demanding some attention, better go.
Regards
Chirley
Marlene
Fri Jun 28, 2013, 06:28 AM
Red cells never stopped working for John and he's had over 170 units. Platelets are another matter. Some worked better than others and some, not at all.
Lbrown
Fri Jun 28, 2013, 12:22 PM
Chirley, do you know how much volume of red cells you actually got? I find where I go, a "unit" can mean anything from 200 mls to almost 400 mls.
I always estimate how much my HGB should be after a transfusion based on the volume of red cells I get and what my actual count was. Then I keep track of how much it drops.
Deb
Birgitta-A
Fri Jun 28, 2013, 12:40 PM
Hi Chirley,
You know I got 142 units of PRBC from dx 2006 until Sept 2010 when Thalidomide + Prednisone kicked in after 3 months. My HGB slowly increased to 13.7 and then slowly decreased.
Feb 2013 I had to get txs again because my HGB was 8.8. I got delayed hemolysis and my HGB was 7.5 after 2 weeks. Thalidomide is increased from 4 x 50 mg/week to 50 mg/day. Thalidomide decreases my WBC and I have to take an injection Zarzio (like Neupogen) every week.
My platelets are very good - about 180 :). My HGB is better but I still have hemolysis and have to get blood almost every week - today I got unit nr 165 and 166. I am genotyped and always get very well matched blood less than 14 days old. I always receive Solucortef (cortisone) before transfusions - I have had a lot of irregular antibodies since dx.
I try to follow my HGB by controlling my heart rate - if it is less than 70 I am OK and if is more than 85 I need blood. The heart never feels the new blood the same day - it will take at least 24 hours.
I have never read that antibodies can disappear - are you sure that the lab really can test your blood?
Kind regards
Birgitta-A
Chirley
Fri Jun 28, 2013, 07:03 PM
Hi and thanks for your replies.
Marlene I too have had lots of blood transfusions in the past and some lasted longer than others. Sometimes the units were a little old, but generally they boosted my Hb for a while.
I used to get pre meded with Hydrocortisone and Phenergan or Claratyne and the blood was leukocyte depleted and irradiated and CMV negative (in case I needed a BMT).
This new doctor won't order pre meds because the lab says I have no antibodies (I know I had at least 6) and I haven't had a reaction since he has been my doctor.
The last transfusion was 3 units, the volume was 264mls, 268mls and 277mls. They all had long expiry dates. They are leukocyte depleted but no longer irradiated or CMV negative.
If the doctor is right and I need another 3 units next week, that will make 9 units in 4 weeks. I'm not on any iron chelation and my liver has already got moderate iron overload (according to biopsy) and has hepatitis as a result.
Birgitta, I'm sorry to hear that you are needing transfusions again. Thalidomide worked well for you for quite a long time. It's interesting that you use your heart rate to monitor your counts. I can't do that because I'm on Propanolol for arrythmia and it causes a slow heart beat. I monitor my count by how breathless and dizzy I get.
May I ask..........how do you know if the transfused blood is being haemolysed? When this happens is this what people mean when they say "transfusions stopped working"? Is haemolysis more likely to happen if the lab doesn't cross match properly? (In my case not detecting antibodies). Is it better to have fewer units of blood more often or more units less often or doesn't it matter?
I wish I'd kept count of how many units of blood I've had but when I first started I thought each transfusion would be my last and that I'd get well so I didn't keep records. After that I couldn't see the point. It must be easily 200 or more units (or maybe it just seems like it :mad:).
It must be raining. A wet cat with muddy feet just jumped on my lap. Oh well, I love her anyway.
Regards
Chirley
Birgitta-A
Sat Jun 29, 2013, 06:15 AM
Hi Chirley,
Thalidomide has really had very positive effects on my counts - the median time for response is 9 months and I am still responding after 38 months though I need a higher dose.
When my HGB decreased after a tx Feb 2013 they took a lot of blood tests but since I have very severe myelofibrosis (since dx) it is difficult to be sure of why the the HGB decreased.
Then all blood-units has been very well matched and fresh but I don't think that has made much difference. I have had autohemolysis since dx but the autoimmune symptoms has increased much during the tsx free interval. Most drugs for that like Cellcept or Mabthera can give dangerous adverse effects like opportunistic infections on the brain.
There are probably many reasons for blood txs to stop working and hemolysis is one of them - you know my bone marrow is still making red blood cells but more damaged bone marrow can perhaps not make any red blood cells at all.
Of cause it is VERY important to cross match the blood properly.
I don't like 3 units of blood because my dose of the iron chelator Desferal is the same in connection with all txs - 3 units mean less Desferal for every unit of blood.
For you who don't get any iron chelator - I think all iron chelators can take other metals like copper too - I don't think it matters if you get fewer units blood often or more blood less often.
Hope we both will manage as long as possible with our symptoms!
Kind regards
Birgitta-A
Marlene
Sat Jun 29, 2013, 10:29 AM
Hi Chirley,
The leucocyte reduced/filter blood product should also filter out any CMV. CMV negative blood is hard to come by. But still, if you are CMV neg, I think they should try to find it for you. John is CMV neg and his orders were for CMV neg but not all of his red cells were. They were reduced/filtered though.
Here's a link that lists 'rare' side effects from transfusions. Two are lung related and the suspected cause is either from too much fluid for the body to handle or antibody related.
http://www.cdc.gov/bloodsafety/basics.html
Three units is a lot of fluid. How fast did they infuse you? You must have been there all day. You may need them to slow the rate down even further.
John never found claratyne to be very effective. He used Atarax as a premed because benadryl didn't agree with him. Both make you sleepy. He only got steroids once during a platelet transfusion. They ran them in too fast and he turned into one big hive.
Whenever John had a bad reaction to a blood product, they would re-check the blood to see if there was a problem of some sort.
Chirley
Sat Jun 29, 2013, 08:22 PM
Thank you both for your replies.
This new doctor admits me to hospital for my transfusions because he doesn't have daycare visiting rights. I have each unit run very slowly over three hours. I have two units one day and the last unit the next morning (I told you he is very cautious). Then I wait an hour and have a post transfusion Hb test. He doesn't like the saline run between units and my port is disconnected overnight.
I'm hoping there has been some mix up with the blood test because a Hb of 85 after 3 units of blood is a worry.
I'm having another check tomorrow but I can already tell that I am having anaemia symptoms. Headache, breathless etc.
Birgitta, I understand now. You have haemolysis of your own blood, not of the donated blood. Do they think the autoimmune problem causing the haemolysis also caused the myelofibrosis?
I know I have had a positive ANA (lowish titre) and atypical pANCA but I'm not sure what these abnormal tests mean.
On a positive note....the hospital has introduced room service. Now you can order anything from the menu any time of day and have it delivered. There are no set meal times. The kitchen makes anything from pizzas to roast dinners. They serve breakfast of bacon, eggs etc all day if you want. It's really nice to order a cup of tea when you want one rather than when it's tea round time. A cup of tea makes everything better.
Regards
Chirley
Birgitta-A
Sun Jun 30, 2013, 05:14 AM
Hi Chirley,
Very nice with room service - we don't have that but I always bring something to eat and drink during the tx.
I think I have hemolysis of both my own blood and of the donated blood.
Autoimmune diseases are common in MDS patients. Ten to 20 % have autoimmune diseases like lupus, autoantibodies and hemolytic anemia. The autoimmunity is believed to be triggered by increased programmed cell death in the dysplastic bone marrow.
I don't know if autoimmunity can cause bone marrow fibrosis - that symptom is not mentioned in any article I have read though they list a lot of autoimmune diseases.
They don't write that the increased programmed cell death in the bone marrow will lead to fibrosis but I think that it can be one explanation for the fibrosis.
Hope your HGB will hold so you don't need txs so often!
Kind regards
Birgitta-A
evansmom
Sun Jun 30, 2013, 10:24 AM
May I ask..........how do you know if the transfused blood is being haemolysed? When this happens is this what people mean when they say "transfusions stopped working"? Is haemolysis more likely to happen if the lab doesn't cross match properly? (In my case not detecting antibodies). Is it better to have fewer units of blood more often or more units less often or doesn't it matter?
Chirley,
Evan experienced massive hemolysis post BMT as a result of a side effect to his tacrolimus. No matter the cause, you will know you're hemolyzing because your urine will go from a normal pale yellow, to a darker, iced-tea colour. You can ask to have an LDH and haptoglobin level done. If you're hemolyzing, your LDH will be high and haptoglobin low or nil. Also, on a smear, the lab will report the presence of schistocytes, aka bitten cells, helmet cells (damaged red cells).
Hope this helps.
Take care.
Chirley
Mon Jul 1, 2013, 12:08 AM
Hi, I have some answers.
I saw my GP today. He said I have no reticulocytes and that I am not producing my own blood (red cells) and am wholly dependant on transfusions. This is why my post transfusion Hb was so low.
He said that I'm dying and probably don't have much longer to live unless I have copper infusions and try to tolerate the side effects. He said I need to discuss my condition with my family and make a decision soon.
I know logically that I am sick but the dying thing feels like its not real and it's happening to someone else.
I dread raising the subject with my family, it all seems too hard to discuss. I've had theoretical talks in the past but those talks just left me confused about how my family felt. On the one hand they think its everyone's right to choose for themselves but on the other hand they get upset if they think there is a treatment option that I don't try.
As for myself, I don't want to die but I don't want copper infusions........tough luck for me, suck it up and do what I need to do. It's a hard decision but at least I have a choice, that's more than a lot of other people have.
Now I know I have a GP who is totally frank and honest. That's refreshing.
Regards
Chirley
Birgitta-A
Mon Jul 1, 2013, 05:43 AM
Hi Chirley,
To decide if we should accept a treatment with severe adverse effects or live shorter with better quality of life is difficult. I told my doctor initially that I prefer a shorter life and won't accept treatment that will lead to severe nausea, tiredness and so on. I was 67 yo at that time and felt that I have lived a good life.
You are much younger and that will make a difference.
It is really you who should make the decision - your family don't know how the copper infusions are affecting you and want you to live as long as possible.
Good with a GP who is telling you the truth about your disease!
Kind regards
Birgitta-A
Marlene
Mon Jul 1, 2013, 10:32 AM
Do you have to use the copper sulphate or are there other types you can try like copper histadine or copper chloride. I guess the question is....is it the copper or the adjuncts in the solution causing the reaction.
tytd
Mon Jul 1, 2013, 12:19 PM
Hello Chirley,
I am sorry to hear what your GP had to say. I know that you have seen an expert Metabolic MD in Australia but I happened to run across an old report about copper deficiency and bone marrow failure. It was published in 2008 and co-authored by Dr. Jaroslaw Maciejewski at the Cleveland Clinic. Since your condition is so rare, you might consider e-mailing him for any advice about the copper supplementation. I think Marlene has a very good point - could you be allergic to one of the additives in the copper infusion or might you tolerate another chemical form of copper? I know that you said in your previous posts that oral copper did not work but perhaps you could try another form again just to see. Also is your Zinc level OK? I think Dr. Maciejewski's email is on the Cleveland Clinic website. It can't hurt to try but I understand how tired you must be of all this. Best Regards tytd
esract
Fri Jul 5, 2013, 11:07 AM
I am also transfusion dependent, for 2 1/2 years now, due to chronic lymphocytic leukemia. Be aware that it takes at least 3 days for transfusions to raise hemoglobin, due to a protein (?) called 2,3 DPG. The RBCs need to release their oxygen, and it takes a while. An explanation of why this is so is on the late Dr. Terry Hamblin's blog, which is mutated-unmuated.blogspot.com
Just search for 2,3 DPG and you'll get the story behind why this is so. I don't understand the reasoning behind doing a CBC before your body has a chance to assimilate the new RBCs. Dr. Hamblin was a world-famous oncologist who specialized in CLL.
Also, does anyone know whether a greatly enlarged spleen such as I have will hemolyze the RBCs that the body gets in transfusions? They don't seem to be helping me much anymore.
Thanks,
Ellen
Chirley
Fri Jul 5, 2013, 09:13 PM
Hi and thanks for the replies.
Ellen, I will most certainly look up that protein.
I have spoken with my specialist and told him that my GP says that I'm dying. He agreed and said that he was grateful the GP had raised the subject because someone needed to.
There are a number of risk factors which I think are shared by every one on this forum.
Firstly, infection due to neutropenia (already aware). Secondly, requiring more blood, more often with less effect (why does this happen ?). Thirdly, multi organ failure from iron overload and chronic anaemia (already aware). Fourthly, aggressive return of MDS and quick conversion to AML (apparently he has discussed this possibility with colleagues). At this stage my platelets are ok and slowly dropping but are, hopefully, not going to be a factor.
I had a repeat Hb 4 days post transfusion and it was still the same at 85. I'm grateful it didn't drop. I have another blood test scheduled for Monday and I'm very impatient to find out if I have maintained a reasonable Hb.
I have developed very bad eyesight and can hardly see to type on this iPad. I have increased the font as large as I can. I can no longer read books (my favourite hobby) and although I can see the TV it's very blurry. I mentioned it to the GP and he said that chronic illness, tiredness and anaemia can cause this. Has any one else got this problem? I was concerned that the nerves to my eyes were being effected by my neuro condition. I have an eye test scheduled for Monday but my spectacle prescription was only renewed about 7 months ago. Here's hoping its just age related. ;)
Regards
Chirley
slip up 2
Fri Jul 5, 2013, 10:56 PM
Chirley
Your library has a Disability Dept. with audio books.
When my husband was dying, there were a few infections....his lungs filled with fluid and his heart failed.... he was never afraid of death....he always had a smile or a kiss for me...i truly believe when one is ready something takes over and one is at peace....i remember my Grannie telling me one day i am tired i am ready, i was in my 30's at the time, she must have told me for a reason, she taught me so many things, that was one of the best lessons of life for me.... of course we always wait for a magic cure and because of everyone here there will be....
On to the audio books, i would fly down & collect them for you, it is just around the corner eh.....
kate
esract
Sun Jul 7, 2013, 02:14 PM
Hi Chirley,
Do you live outside the U.S.? I ask because the hemoglobin numbers don't correlate with the numbers I'm used to, like currently, my HgB is 6.5. I will get another transfusion in 2 days, but sadly, they don't seem to work very well anymore. About the neuts............I raised mine on several occasions by taking no-flush niacin, a B vitamin. There's a medical paper from a doctor in Germany that explained how this works. 2 weeks ago, my neuts were 0, now they're 222,000. Make sure you get the NO-FLUSH niacin so you don't get any reactions, like flushing. I take double the recommended dose. If you want the paper from Germany, I'll try to find it.
Ellen
triumphe64
Sun Jul 7, 2013, 04:44 PM
Here is the information on Dr. Maciejewski.
I don't see an email, but I do see a Fax number.
http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=4362
Cheryl C
Sun Jul 7, 2013, 09:26 PM
I am interested in the paper about NO-FLUSH niacin too, as while I have pancytopenia, neutrophils are the biggest problem - ANC of 400-500 lately.
Thank you!
Chirley
Mon Jul 8, 2013, 01:10 AM
When I read NO FLUSH niacin....I thought it meant you didn't pee it out :o. I already take B6 tablets, Folic Acid tablets and B12 injections all prescribed by my GP.
I'll definitely ask my doctor about the niacin. I had a fright a few nights ago when my temp went up to 38.1 with neuts of 0.17 but I took some Nurofen and in the morning everything was ok again.
I had an eye test today and I was told I have scotoma ? and that my optic nerves don't look normal. I've been referred to a neuro ophthalmologist. The joke is.....the closest appointment is over four months away.
I had a blood test today and I'm really curious about the results. I feel better today than for the last few weeks. I cheated a little and didn't drink any fluids before the test so the results look a little better, naughty hey?
Keep well every one.
Regards
Chirley
tytd
Mon Jul 8, 2013, 10:21 AM
Hi Chirley,
I am glad that you are feeling better. I am no expert and I know that you have to be cautious about what you read online but I came across an old paper on copper which stated that "Vitamens C, B6, folic acid and zinc are copper antagonists". Also another line said " the need for Vitamens A, C, B6, B3(niacin), and B5 is reduced in the copper deficient state". Therefore I would wonder if you might not be doing more harm than good by taking the vitamens B6, folic acid, etc. and I would caution about the niacin. On the other hand the B12 and Vitamen D would probably be recommended certainly if your levels are low. Were you taking copper sulfate IV or another form? You might be getting demyelination of the optic nerves due to the copper deficiency similar to what people with multiple sclerosis get? I just wish there was some way you could get the copper deficiency corrected but I understand that the neurological deficits might remain although the blood counts might improve some. Does the Metabolic MD not have any other suggestions? Good Luck tytd
Chirley
Mon Jul 8, 2013, 09:24 PM
Thanks for all the info. The B12 tested low and that's why I'm on the injections. It's the third time I've had a course of B12 for deficiency. The Folic Acid and B6 is a bit more confusing. The haematologist said to take it, the Prof of Metabolic Medicine said not to take it, the GP said to take it and the Physician says it doesn't make any difference.
I've just had a phone call from my GP.....Hb 69, WCC 0.7, neuts 0.09, platelets 130 (something good at least). I guess it's another transfusion tomorrow.
Tytd, the optometrist said the appearance of the optic nerves was in keeping with previous optic neuritis and demyelination. I am not surprised, I knew that when I looked at someone and their head was missing that something was very wrong. I told her about the neuro disease I have (pretty obvious something is wrong when you turn up in a wheelchair) and she thinks its all connected but is leaving it to the specialist to investigate. I have been sent to the major eye facility in my State which is well regarded for its work and research....pity the waiting list is so long. On the plus side, it's located on the same campus as the hospital I go to.
Regards
Chirley
esract
Tue Jul 9, 2013, 04:38 PM
Hi everyone,
I finally, after 15 minutes of seaching old files, found the info from a German study about niacin (also know as B3) raising neutrophils. Bear in mind that my disease, chronic lymphocytic leukemia, a very slow-growing disease, could be way different from yours; I don't know how you will react to it. Best to start slowly. I took a double dose in the AM, ditto the PM; you may want to start with a regular dose. GET THE NO-FLUSH NIACIN, otherwise you may have a reaction.........face flushing, etc.. It has always worked for me, when neuts were low, they then skyrocketed. I take the Solgar brand.
Here's the info:
"A team of researchers at Hannover Medical School in Germany recently
reported a major breakthrough in neutrophil development that may have
important clinical implications. Upon binding to its receptor on the
surface of myeloid progenitor cells, G-CSF turns on an enzyme that
converts intracellular vitamin B3 (nicotinamide) into an activate
metabolite (nicotinamide monocleotide). The researchers found that
this is the rate-limiting step in a signal transduction pathway that
triggers granulopoiesis.
Addition of vitamin B3 or its precursor induced granulocyte
differentiation of cultured hematopoietic stem cells. Administration
of high doses (10-20mg/kg/day) of vitamin B3 to six healthy
individuals resulted in significant increases in neutrophil count over
a 7 day period and a return to physiological cell counts when vitamin
B3 was withdrawn.
These findings identify a new role for vitamin B3 in granulopoiesis
and beg for clinical trials to evaluate the use of vitamin B3 either
alone or in combination with G-CSF for the treatment of neutropenia.
Source:
Skokowa J, Lan D, Thakur BK, et al. NAMPT is essential for the
G-CSF-induced myeloid differentiation via a NAD+-sirtuin-1-dependent
pathway. Nat Med. 2009;15(2):151-158."
This worked great for me, and one other person that I know about. Beware that it's anecdotal at this point and may not help you, but it's not harmful, either. If you try it, let me know your results.
Ellen
Heather8773
Wed Jul 10, 2013, 02:44 AM
Ellen yes an enlarged spleen in a sign of hemolysis. You can have them do a LDH level test on your next blood draw.
PNH causes hemolysis , and is "normally" a secondary dx due to damage caused in the bone marrow ( in my husbands case AA caused the damage leading to pnh) you can find this out by a flow cetometry test during your next blood draw.
Hemoylisys normally can be measured by a LDH level. LDH is the amount of damage or break down of tissue being carried through your system. A high LDH won't mean you have PNH, as that's only determined through a flow test now.
Chirly your in my prayers. Your so supportive. Please try to keep the glass half full. I know it's hard. We struggle w that daily.
My husband has transfusions that last longer then others. Blood type, heat, sleep, stress, infection, donor, ect everything under the sun affect them. It's normal to only come up about 2 points after 3 units if ur already low and have other factors. I'll be praying that's the case for you
Chirley
Wed Jul 10, 2013, 03:23 AM
Hi and thanks.
My physician gave me an ultimatum, copper or die. He said the transfusions had already stopped working. He told me to think about it over night and let him know my decision this morning. He said we would work out a regime that would minimise side effects.
I spoke with my family at length (again) and I decided that I would give the copper one more go. I rang my doctor and told him my decision. He didn't take long to organise everything and I'm booked in to have one more blood transfusion and copper tomorrow.
I assumed that I would be having a minimum dose of copper infrequently, just enough to prevent severe anaemia, but I was a bit distressed when he said that instead of having 5mgs/day each day for 5 days in a row every third week he might be able to stretch it out to every fourth week. I reminded him that I had a dose related sensitivity but he didn't comment.
I hope it's better this time around.
Regards
Chirley
Sally C
Wed Jul 10, 2013, 08:04 AM
Dear Chirley,
I have read all your posts and continue to be amazed at your courage and straightforward attitude.
I wish you the best success with this treatment. Be strong as I know you will be.
God Bless,
Sally
Marlene
Wed Jul 10, 2013, 01:48 PM
Chirley....sending positive thoughts your way. I truly hope this infusion goes smoothly for you. I know how tired you must be by now.
We'll be thinking of you....Marlene
Cheryl C
Thu Jul 11, 2013, 08:26 AM
All the very best with the copper, Chirley! Hope it goes really well and makes a positive difference.
Lbrown
Mon Jul 15, 2013, 12:26 PM
Good luck Chirley.
Deb
SLB
Mon Jul 15, 2013, 10:24 PM
good luck Chirley!! hoping and praying it works for you and you can tolerate it.
usaf1125
Wed Aug 21, 2013, 07:03 AM
When I was treated by the haematologist I had pre meds because I had lots of antibodies and had a rash and fever one time. Then I didn't need transfusions for a long time and then I was told they couldn't find the antibodies any more and this new physician doesn't order pre meds.
I wondered about the antibodies because its two different labs. The first lab had a list of 6 antibodies, this new lab says no antibodies. I don't know how that works though, something else to learn about when I'm not so tired.
Regards
Chirley
My Dr, won't give 3 units on the same day. 2 one day, 1 the next day. I get Lasix between the 1st and the 2nd. Don't need it with 1 unit. I get Pre meds before the blood. Benadryl, Tylenol,Hydro Cortisone.
Chirley
Wed Aug 21, 2013, 06:16 PM
Last blood transfusion they found four antibodies including the anti K which I've had for a long time. It was the hospital lab who did the cross match instead of a private pathology company. Oddly enough my Hb rose a lot higher and lasted longer with the last transfusion.
My new doctor won't give 3 units in one day either. It's two units the first day and one the next and he listens to my heart and lungs after each unit.
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