Mother refusing transfusion

[PamP]

I wrote in back in November when my 83yr old mother was diagnosed with MDS. She is currently in the hospital (since 12/28) – went in with an unrelated issue – but since everything is connected, it seems that it has been one thing after the other – first a virus caused her to not eat/drink, so her blood sugar dropped, she was sent to the hospital, once there she went into diabetic coma – came out of that as soon as she got some glucose — then came a possible bowel obstruction — they let that resolve itself – then she had a fever – so they tried to figure out what was causing that — gave her antibiotics – then her heart rate increased dramatically — so new medication for that — heart rate now controlled- and now of course her blood count is low — she kept blowing her IVs -and they were infiltrating; they finally (after 6 days put in a PICC line); they gave her a transfusion 3 days ago and she had a severe reaction to it — not sure why — now her counts are even lower and she is refusing a transfusion – She is afraid that she’ll have another bad reaction to the transfusion. She feels lousy – tired, out of breath, weak, Since it is a holiday weekend I can’t get hold of the oncologist/hemotologist – I’m still waiting for them to call me. Does anyone know what happens if she continues to refuse a transfusion? Can the hospital force her to have one? Also, the nurse said one of the doctors was considering installing a port – they figure she’ll need one in the future; the nurse said for chemo – but I said that IV chemo isn’t her treatment plan (she’s on Revlimid, Procit, Neupogen 480)– but did ask if ports could be used for transfusions (which is her treatment plan — or was until she changed her mind!) The nurse said I should check with the doctor.
I live in California – my mother is in Florida.
Any words of advice would again be appreciated!
(She has had two (and now two and a half) transfusions since Nov.- the first 2 were fine – no problems, though it took 7 hours for her to receive 2 units – it was this last half of transfusion that didn’t go well)

[marlene]

Pam,

Are they pre-medicating your mom? And what kind of reaction did she have?

The hospital cannot force her to have a transfusion but someone there should be able to talk to her about the reaction and what they can to do mitigate any future reaction. I know that when John had a really bad reaction to platelets once it is was because they ran them in too fast. And the first time he had a reaction to red cells, they tested the bag to see if they could find out why. I know you can develop antibodies and they need to check for that with each cross and match.

It’s very difficult to try and help when you’re not there with her.

Marlene

[PamP]

Thanks for your note — My mother did agree late yesterday to have 1 unit of packed red blood cells transfused — The nurse said that now they know how she can react, they would treat her prior to the transfusion to try to head off any reactions – (bendryl, tylenol, lasix) – She did just fine with the transfusion and is feeling a little better this morning. I still haven’t heard back from the oncologist/hemotologist on call at the hospital. His service calls me to see if he’s called – which is nice that they follow up… but it’d be nicer if he called. I still don’t know when she’ll be discharged – or what the plan is for her. I did hear from my mother that the doc decided to take her off the Revlimid — of course we just got the 28 day refill in on Friday – and it is such a big deal getting this medication — jump through all kinds of hoops to get it – it is highly regulated. I certainly don’t want her to have it if it isn’t working or is causing her problems –but it would be good to talk to the doctor to see why he made the decision.

[marlene]

Glad to hear that issues is resolved. Some places automatically pre-med for red cells while others wait until there’s a reaction. John did not get pre-meds until his first reaction either.

Marlene

[covergirl]

Hi Pam,
Hope your mother continues to improve.

I am on supportive care only and I ALWAYS get pre-meds prior to getting my juice(reds only). Also, my blood is treated – irradiated, luco-depleted, CMV negative – to avoid picking up those anti-bodies. Ask the doctor about blood treatment as well as pre-meds.

Best wishes,
–cheryl

[PamP]

Thanks for the info – I will ask the doc about treating the blood – I try to see the positive in life – and I guess the positive with this situation (her reaction to the transfusion), is that it occurred while she was hospitalized and they were able to respond rapidly – and knew about all of her other medical issues that were happening at the same time —

I spoke with her this morning and she said the hemotologist said something about installing a port — but she wasn’t sure – I do hope that they do it while she is there — rather than waiting until she is discharged to have to scheduled the outpatient surgery — Sometimes the doctors don’t realize how difficult it can be for especially elderly patients to get in for appts and procedures.
Cheryl, may I ask how often you get transfusions? I imagine it varies with each individual – but I’m not sure as her MDS progresses if we’ll be looking at weekly transfusions or less often or more often — She’s now had 3 since mid November. I understand that if the Revlimid works with her, it is supposed to lengthen the time between transfusions — but it generally taked 3-4 cycles before it can be determined if it is working — and we’ve just finished the first cycle.

[PamP]

whoops! Cheryl, I guess if I read your tag line I would’ve seen that you are transfused every 4 weeks….

[covergirl]

Hey Pam,

I actually had to update my age on my tag line and change my btx frequency.

For the last 6-7 months, my time between has ranged anywhere from 4-7 weeks. As I am blessed to still work full-time with some minor travel, I schedule txs so they are not disruptive to my job; but do not take any chances with my health. I tried to monitor my activities prior to and the expiration date of the juice to see if it explains. So far no rhyme or reason.

FYI, I resisted, but did get a port with my ATG treatment in 2005. It is the best thing since sliced bread. I actually have a double port. Nurses outside oncology have trouble accessing, but once they are in,they’re in. Easier on the veins, believe me. I highly recommend for anyone who gets regular btx.

Take care and God bless!
–cheyrl

[PamP]

Cheryl –
Thanks! I agree with the port — and my mother does too — we need to wait a while before they install it — (installing — that sounds like putting in a dishwasher!) She’s now been in the hospital for 11 days; while there they found that she tested postitive for a bacteria in her blood — She’s on a heavy duty antibiotic IV for 5-8 more days (only given once a day over a 15 minutes- through a PICC line). The doctor said he didn’t want to risk any other infection so says we need to wait until she’s done with the antibiotic and has some time to heal before the port gets put in. Hopefully she won’t need a transfusion before that happens. I was hoping they’d install it while she was already in the hospital — but I do understand why they didn’t.
I appreciate hearing that you’ve not regretted getting your port. It sounds too, to me, that you are continuing to live your life with the MDS…. I know that having MDS is tremendously more than a little inconvenience, but I just feel that you aren’t letting “it” get you. That’s pretty inspirational! Good health to you and thanks again for your note.

[covergirl]

Pam,
One thing I have learned from this MDS and maybe getting a litte older and wiser, is to “take one day at a time” while living life to the fullest with no regrets.

Take care,
–cheryl

[lindajo]

Pam, With the strong antibiotics that your Mom has been on she needs to take acidophillus,probiotics to restore the balance in her colon and prevent the digestion problems that come along as side effects of treating the bacterial infection.

Yogurt with active cultures contain the acidophillus she needs but you can also get a chewable tablet at the health food store.

She needs to avoid sugar right now. Sugar causes the bad bacteria to grow However she can reduce excess sugar is great. Linda

[PamP]

Cheryl and Linda –
Thanks to you both for your thoughts and suggestions. My mom finally was transferred Friday night to a skilled nursing facility from the hospital. She’s inching closer to home! Her stay is going to be longer than we anticipated – she needs to be on the antibiotics through the end of January — seems the first antibiotic she was on for the staph infection in her blood caused insufficient kidney function — so they switched out her antibiotic — she needs to take the new drug longer — still frosts me a bit that she can’t return home to her assisted living place due to the PICC line – which has to be used only 10 minutes a day for the IV medication – but, it is what it is! I’ll share the info about diet with her as well as the dietician;
Thanks again —
Pam

[covergirl]

Hi Pam,
Haven’t been out on the Forum for awhile and saw your reply. Hope all is well with your Mom. Let us know.

–cheryl

[jaxem]

cheryl
you hit the nail right on the head with that prophecy. at your young age, any thoughts about a transplant?

pam
why revlimid? what type mds does your mom have? does she have a caregiver near her? if she has a picc & it’s functional, why go to a port (understanding that a port is better to have but the picc is already in)?

[covergirl]

Hi Jack,

Right now my medical team feels my transplant is more risky than my current supportive care of tx’s every 4-5 weeks. I have not convinced myself either that this is an option for me. I strongly believe I will make that decision when I need to do so. Until then, it’s all good.

Thanks for inquiring and keeping in touch with us on the forum.
–cheryl

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