Transfusion Concerns & Anxiety

It's week #26, riba's been reduced, procrit has been added, but my husband's hemoglobin continues to drop.  His hgb was 7.4 yesteday, and the nurse left a message that since it's "even lower than that" today, he has to go in tomorrow at 9am for a unit or two of blood.  

I'm concerned for him (partly because he really fought this all the way and feels so angry that he couldn't avoid this, partly because he's very, very anxious about the whole transfusion thing), but I understand his hgb is at a dangerously low level for someone with pre-existing cardiac artery disease, so it's a must do.  Plus, he can't afford to lower riba again.

Are there side effects to transfusions?  Has anyone had problems due to having one?  My mental side is telling me it's safe, it's very routine in this day and age, but the emotional side of me is a little freaked.  I'm presuming that this will *immediately* raise his rbcs,hgb,&crit... is that correct?  How soon will it happen?  If he continues to be anemic, how often is transfusion necessary?  ....Are there ever times when transfusion doesn't work fast enough? (Like they're telling us the procrit isn't working fast enough?... The nurse mentioned something about "non-response" to procrit, and that a small minority of people do not respond to procrit... is there such a thing as not responding to a transfusion?)
A little out of my mind today,
~eureka

[portann]

Eureka,

I think NY and Alagirl were transfused.

I don't know anything about transfusions but here are possibly relevant links in the archives:

http://www.medhelp.org/posts/Hepatitis-C/HERE-I-GO-AGAIN----THIS-MORNING-HGB-DOWN-TO-75NOW-WHAT/show/92089

http://www.medhelp.org/posts/Hepatitis-C/Whats-the-lowest-Hemoglobin-level-before-transfusion/show/373812

Sorry I can't be of any help but I sure found that when my hemoglobin dropped into the nines, my heart was galloping. That couldn't have been good for me and  7.4 is so much lower.

[Bill1954]

Hi Eureka,

I really don’t know much about transfusion; I looked around and this page covers quite a bit regarding risk:

http://www.cancer.org/docroot/ETO/content/ETO_1_4x_Possible_Risks_of_Blood_Product_Transfusions.asp

Understand that most of this is *very* rare; it’s so easy for us to overreact when either we or a loved one is going through a new procedure. I sure hope everything works out, and he doesn’t require multiple transfusions; although the risk is much greater to go without, obviously.

I’ve heard patient-reported instances in here where Hgb had dropped into the mid 4’s; one guy was in the middle of treatment when hurricane Katrina came through, and he said he felt OK with Hgb at 4.3? Who knows :o).

Take care, and best to both of you—

Bill

[eureka254]

I appreciate the links, and thanks for looking out.  I know nygirl still stops by, but I don't recall seeing alagirl in quite a while...
I have to admit it makes me a little angry to see so many people who have had low hgbs go unnoticed.  My husband's hgb is normally in the 13-15 range, so it's unbelievable how he's still functioning at <7.4.  (The nurse missed both his 10 and his 9 back in Feb & Mar.)  He thought for sure the procrit was working, so the transfusion call caught him totally off guard.  He resisted initially, but they 'offered a deal he couldn't refuse' -- either he goes to nice comfy transfusion center tomorrow, or they could arrange for him to do it at the ER over the weekend.  

[Bill1954]

Let’s try that URL again this way:

http://tinyurl.com/qy99b8

Bill

[portann]

It's bad that she missed it at ten and very disturbing that she missed it a second time at nine.

I'd take the comfy room over the ER and bet he will, too.

Port

[eureka254]

You're always such a great support and wealth of info, Bill, many thanks. (Saved the page -- reading that kind of stuff helps to calm the OCD side of my brain lol -- at least I'll feel that I'm well-prepared for all possibilities as a caregiver.)  My logical side knows that there's most likely very little to worry about, but you hit the nail on the head -- definitely an 'overreactive' post.  Need to practice my 'Modified Elliptical Panic'...not quite stationary yet :). ~eureka

[Bill1954]

Thanks, Eureka :o)

[Trish77]

I had a blood transfusion a LONG time ago .. when my daughter was born and she's now 24.  I had two in a row because the first one wasn't enough.  It was painless.  Just blood going in the same way as an IV to give me fluids only it gave me blood.  I had lost too much so I guess I needed more.  It's not the same as getting blood to help with low hgb.  I guess what I'm saying is that I don't think it will hurt him at all.  

I think jd had a blood transfusion and if I recall from others here who had them, they felt better rather fast.  I don't recall anyone who had one saying anything about issues with them.

Here's some info - seems comforting, I hope it is to you:

From:  
http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Undrstnd_Treat_Opt/Lrn_Other_Treatment/Blood_Transfusions/index.html

The purpose of transfusions
Transfusions are used to keep your number of blood cells at a safe level. They may be used before, during or after other treatments.

Red blood cells
You may get a red blood cell transfusion if you have too few red blood cells (anemia). Anemia causes weakness and tiredness. In severe cases, it can cause shortness of breath or a rapid heartbeat. To measure your level of red blood cells, a doctor checks your hemoglobin level. Transfusions are usually used when the hemoglobin level is less than 8 grams per deciliter. Sometimes instead of a transfusion, you may get a red blood cell growth factor — a drug that helps your body make more red blood cells. This growth factor is called erythropoietin (Procrit®, Epogen®, Aransep®).

What to expect during transfusions
If you need a transfusion, you will get the blood cells through tubing connected to a needle in your vein. You will most likely get the transfusion in a hospital or an outpatient clinic. A transfusion takes about two to three hours for each unit of blood cells.

For a red blood cell transfusion, the blood you get must match or be compatible with your blood type. For platelet transfusions, matching blood types is less important. Even so, you will usually get a matching blood type, especially if you may need many transfusions.

If you have had a bad reaction to previous transfusions, you will get medicine to help prevent another reaction. Otherwise, you will probably not get any medications with your transfusion.

Risks and side effects
Most patients do not have any side effects from blood transfusions. About 1 to 2% of transfusions may cause fever and chills or an allergic reaction, such as hives. If you have had these side effects during past transfusions, you may get medicine before your transfusion to help reduce any reaction. In addition, white blood cells are usually filtered out of red blood cell and platelet transfusions, because the white blood cells can cause fever and chills.

If you get a lot of transfusions, your body may develop antibodies (immune cells) that can react against donated blood cells so that transfusions do not work well. For example, the platelet count will not go up much after a platelet transfusion. If this happens, you may need to get blood cells that match you at a more detailed level than a simple blood type.

For patients who have a weak immune system because of their chemotherapy or disease, the donated blood cells may be treated with radiation. This is to prevent a complication called graft-versus-host disease (GVHD). In GVHD, some of the donated blood cells (the lymphocytes) attack the patient's body. GVHD after a blood transfusion is rare but can be very serious. (GVHD is also a possible complication of a bone marrow or cord blood transplant using donated cells.)

-gotta admit, that last part is sobering.  However seems very rare but still, considering his treatment, at least something to be aware of.

I hope he feels better soon and I hope the transfusion does him wonders.  Hang in there, Eureka.  Please...let us know how it goes and how you're doing, as you can.

Trish

[eureka254]

Wow, I guess I should be thankful that at least it's rbcs and not platelets he's getting tomorrow lol.  (At least that's holding in the 70-90 range.) Thanks for the comfort, both from an informational standpoint and personal standpoint  :).  It helps to displace my worry with information and positive thinking.  One would think that with everything my husband's gone through to get here, that things would get easier, not more challenging. But, onward and upward we go (and hopefully the hgb too.)

Being that my husband is the unusual 'universal recipient' AB pos, I'm hoping it'll lessen his risk of complications. The tx doc and he were just talking yesterday about the possibility of extending to 72 weeks, so I'm hoping this call to transfuse doesn't negatively impact the proposed long-term plan to increase his odds at SVR -- he's not feeling very confident in his tx team right at the moment.  

I've been a wreck since his hgb got to 8, so in some ways I'm glad he's getting the quick method.  Besides, it has to go well tomorrow morning -- he has to be home for pegasys shot night (sigh). :)  
~eureka

[jdwithhcv]

I was admitted to hospital thru ER with hgb at 7.6, and received 3 units.  I got fairly rapid results, enough that they released me the next day.  The whole experience is a bit blurry (except for the hot firefighters!) - I remember insisting that I had started procrit a few days earlier and wanted to wait for it to work.  ER docs said "no way!"

Its a quick fix to at least get you back on your feet again (as opposed to unconscious on living room floor) and for me that was the only time.  A couple of weeks later the procrit kicked in and we were able to hold my hgb around 10 - 10.2 with 40,000 iu procrit per week for the next 40 weeks.

I trust all will go well tomorrow - I'll be thinkning about you both.

jd

[newleaf09]

Trish:  thnks for posting the transfusion info.  I was thinking of asking for a platelet transfusion but it doesn't really look that effective.

Eureka:  I have a bunch of old relatives with low hgb from just being old.  They get transfusions with no problem and I think they feel better right away. I would think your husband's immune system is in overdrive and he'll not have anything to worry about.  You'll enjoy a better weekend than you have in a while.

[nygirl7]

I was transfused - it really is nothing and it will help him alot. He should feel better straight away.  Just remember it's not a permanent solution - either they should up the epo to 2x a week (what we did in my case) to try and avoid it in the future and to get it going...in my case the once a week didn't raise me at all and then 2x a week made it too high so we finally did once every five days which worked out to keep me mid 10s (10.5) for the rest of treatment (started at week 3 and stayed on till 72).

Don't worry about the transfusions - blood it thoroughly screened and he will feel SO much better.

[sunspot]

----The nurse mentioned something about "non-response" to procrit, and that a small minority of people do not respond to procrit...---

That must of been me. I was up to 80k of Procrit a week and my HGB did not rise. Maybe a good thing that it did not go "lower". I held in the high 9's, down from 16 at the start of tx. My  hemo doc was ready to tranfuse me but held off because at that point I was only 4 weeks from EOT but I was ready to have new blood if it would of helped me, as I'm sure it would of.

Best of luck to you and your's, Dana

[neptune235]

I've had three transfusions of two units each. over this last year.  My personal preference was to avoid a dose reduction at all costs, so it was an easy decision.

Procrit has helped, but I think my bone marrow is so suppressed from Infergen, I still need the occasional transfusion.

And initially I had a giant "ick-factor" reaction to the idea, but given the goal to avoid a dose reduction, I got over it pretty quickly.

As has been mentioned, one really does feel better virtually right away.

[portann]

Hi Eureka,

Just wondering how things went today at the transfusion. Hope the room did turn out to be comfy.

Best wishes,

Port

[evangelin]

Eureka,
I spoke to what I think is a pretty knowledgable nurse today and she said it would take 2 weeks before the procrit would work.  Joe's just came back 8. again even after the extra procrit.  The nurse said they just checked it after a few days to make sure he wasn't dangerously low by now, not because they wanted to see if the procrit had raised it yet.
Hope things will stabilize soon,
Ev

[IAmTheWalrus]

I was told that HGB below 8 was transfusion territory. I had a lot of blood during and after my transplant. They gave be a few units just before I left the hospital and I remember feeling so much better after!  Good luck!

[eureka254]

You folks are amazing for sharing all your knowledge, experience, and encouragement.  Keeping all your responses in my mind and heart helped me get through the night and stay pretty calm all morning.  Plus, I kept throwing forum names around to my husband on the way to the transfusion, and telling him about all your feedback made him feel better.  Until he got there, that is, and they told him it’d be at least 4 or 5 hours!  The tx nurse had said “a couple of hours” for a unit – but didn’t tell him that she had ordered two. It worked out, though; he was very impressed by their efficiency, and by the time he was leaving at 2pm, he and the transfusion nurses were chums lol.  

jdwithouthcv:  My husband too, tried to insist on waiting for the procrit but got voted down.  Maybe he didn’t mind the transfusion so much after-the-fact because of the hot nurses!  He still has to continue the procrit, but hopefully like you it’ll kick in next week.  The irony is that I found out today our insurance will only approve procrit if his hgb is below 10… so it’ll be quite a balancing act.  

newleaf09:  My husband had such high expectations of ‘right away’ he actually called me every hour after the transfusion to ask, “…why am I not feeling any better yet?”  (Maybe the riba’s making him just a little impatient?) By 7pm, he was expecting to feel “different” and paged the nurse to ask HER why he still didn’t feel “better”.  It wasn’t until 9pm and he realized he wasn’t falling-down exhausted, that he still had energy to burn, that he said, “Hey, I guess it must be working, I’m usually near dead by this time.”  I think he’s finally getting adequate oxygen :).

nygirl7:  It really was not nearly as bad as either of us thought, and it’s definitely helped him out a lot already – enough that he even said to the tx nurse that he wants to stay on the course of meds even if that means having to transfuse again – I almost couldn’t believe what I was hearing, so he definitely came out of it feeling it’s doable as necessary – keeping the SVR goal in mind was tough when he was feeling so lousy, much better now.

sunspot:  While talking to the nurse I was mostly focused on the transfusion request, but I do recall her talking about blood tests that could check for lack of procrit response, but she emphasized that it would be highly unusual.  I know that my husband had a pretty significant and steady slide into anemia, so like you said, it could be that procrit is keeping your 9s from slipping into the 7s like my husband's did.  They’ll be checking his hgb/hct every week for a while, so we’ll see if the procrit does eventually kick in – if not, I’ll definitely be asking the nurse about the ‘procrit immune’ test.

neptune235:  You said, “to avoid a dose reduction at all costs…” has to be the philosophy now.  This week’s 800mg riba dose is very unsettling, so it’s our hope that they’ll let him test cbcs sooner than next Thurs.  We're waiting to hear from the doc on Monday if he can do it sooner, more often if necessary, so he can get the ok to go back up to the 1200mg and stay there.  It was definitely the “ick-factor” (lol great phrase, I’ve adopted it…) that held him back initially, but it’s over and done.

portann:  Ended up that because he was a “rush case” he didn’t go to the fancy ‘apheresis center’ they promised, but it was not all bad.  He wound out in the tp clinic transfusion area, so he got to make phone calls, read the paper, offered free lunch… they made him comfortable, anyway, even if the hard chair wasn’t the lounger and recliner the tx nurse promised.

evangelin:  The general consensus seems to be 2 wk turnaround for procrit, so it was just too little, too late in my husband’s case, even if he didn’t want to believe it at first.  Hopefully Joe’s levels will improve – better to check more often than not often enough! – and if he does need transfusion, my squeamish husband can vouch for its painlessness.  I keep reminding myself that the anemia likely means good riba absorption, and I hoping it’s so for both of us!  

IAmTheWalrus:  In retrospect, it would have been wiser to immediately transfuse at 8 rather than riba reduce/use procrit, but it’s always hindsight that’s 20/20 – though I wonder if I would have had the gumption to call it that way for him against the nurse’s recommendations – needing her as my ally, as things are, not my enemy.

Thanks so much to everyone for all the good words and wishes.  Just absolutely adore you all.

Feeling all warm and fuzzy (one’d think I had the transfusion),
~eureka
ps:  Somebody's gotta come up with a better way to test for anemia than drawing blood...!

[portann]

I've been waiting and wondering how your day turned out. Very glad that all went well and that you're happy now about the decision and outcome.

In my wildest imagination, I can't imagine testing hemoglobin with saliva as is being field-tested for HIV but wouldn't that be wonderful?

Tuesday, May 06, 2008

Researchers at McGill University have field-tested in India a rapid saliva test for HIV that was shown to be highly effective in preventing transmission of the virus from HIV-positive mothers to their children.


http://www2.canada.com/components/print.aspx?id=f71a71b2-21ba-4da0-8bae-b050b46b65b2&sponsor=

[CoWriter]

As somebody who has to give blood to patients quite often

The first thing the blood band does is "type and cross match".  that means that they look for blood from a donor that matches the blood from your husband.  Some people have different antibodies and are harder to match, but the process is simple for most people.

During a blood transfusion, a fever, hives, shortness of breath (or any other unusual symptoms) are considered a "reaction" to the blood and the transfusion is stopped immediately and the blood bank notified.  Vital signs are monitored closely.
"Reactions" don't happen often and I don't recall ever seeing anything serious happen from a transfusion.

As you said, a hemoglobin of 7.4 on somebody with a cardiac history can be serious because the heart has to overwork to pump the blood throughout the body.  So if you consider the risk vs the benefit, I believe the benefit from a transfusion by far outweighs the risk of a possible reaction.

Transfusions work fast.  By the time he gets the two units, his hemoglobin will be higher.

Regarding the Procrit's lack of response.  There are several possible causes:

1.  Lack of IRON stores.  If you don't have enough iron, Procrit won't work.  Make sure your husband's iron has been checked.  If it's too low, he'll need iron supplements (to be prescribed by the doctor).

2.  Lack of Vitamin B12 and/or Folic acid which are needed in red cell production.  A blood test can determine if the levels are too low.  

3.  Inadequate Procrit dose.

4.  Blood loss....from any type of bleeding, surgical procedures, frequent blood tests, etc.

5.  Protein energy malnutrition....because protein is needed for protein synthesis in stem cells.  

6.  Having an infection/inflammation....because inflammatory cytokines (messenger cells) inhibit red cell production and iron metabolism.

7.  Having medical conditions like sickle cell disease.

8.  Medication interactions......some medications can interfere with red cell production.


The most common reason for Procrit not working is lack of iron.  I would start by checking that.

Best of luck to you and your husband.

Co

[CoWriter]

"The first thing the blood band does"

I meant the blood bank.

Co