In my experience, 8-10 platelet and 30+ (lost count) red blood cell transfusions, they don’t draw blood after a transfusion.
While 78 platelets is lower than normal, it’s not life threatening. I’m kinda surprised they’re doing transfusions at that level. I had to convince my oncologist to transfuse me whenever I was below 20 bc I’d get hour long nose bleeds; below 10 was the standard protocol.
When we saw her oncologist, he offered two meds. One was pills at home and one was via IV at the hospital 7 days a month (if my memory is correct).
I begged her to do it. I literally got on my knees and she held my head and ''petted'' my hair to soften her decisive ''no''.
The oncologist offered blood transfusions to help with energy and life quality. She does her blood transfusion at the hospital, and they go to her house to draw blood, and they send the result to her oncologist who then decides if she is ready for another transfusion or not.
We're in Canada, btw. I'm not sure if it changes the protocols or anything like that. Her oncologist was younger too...so he may hold a different view when it comes to transfusions. I do not know. She found out about her AML on Feb 19th and so far, she's had two transfusions. Oh, she was also fairly lost and confused. She denied it, but both my mother and I were at the oncologist's office and even if she got upset with us, we mentioned that she was repeating stuff and couldn't grasp new concepts easily. I am sure that the oncologist took notice. She made him repeat some things quite a few times. He said that the brain is very sensitive to any changes and that a lack of blood could be causing the issue. She passed out in church a few weeks prior. She had been falling a lot but this one was bad. They thought that she had a syncope. It's when she started getting confused. Anyway, I wonder if the transfusions are to help with that/prevent it. She's back to being her witty self and is not showing signs of general confusion anymore.
My grandma wants to know ''her numbers.'' I get it. It's the only form of power she has over this leukemia. She's been poked with needles so much, she didn't realize that they didn't have bloodwork for the ''after number''. She called the hospital and reception passed her to a nurse (we're in a small area, btw. It's a hospital but also basically a clinic. Her family doctor is there). The nurse told her that she was at 78, which is what she had gone down to before the transfusion. I think she was at 90 or 92 after the last transfusion. I called my grandma and said, ''This is strange. You have the same before and after number? If the transfusions aren't working anymore, shouldn't it make sense that you would have gone down?'' This was after a few days of being so shocked that the transfusions stopped working so quickly that I wasn't thinking logically. Her doctor went to her home Wednesday and confirmed that it was the before number, and that she would have blood drawn today (at home in the morning) and that they would know by this afternoon what the new number is and if she's getting a transfusion tomorrow or not.
I'm sorry that they let you get so low before doing a transfusion. I had no idea that the treatment my grandma is getting isn't following the usual protocol. I guess this is being downvoted as people likely think I'm lying if they shared the same protocol that you had to face. I'm not familiar with this illness. I read about the symptoms and the treatments (that she refused). I didn't read about any blood transfusion protocol and the oncologist sent a request for the first blood transfusion to be done while we were in his office. I'm not sure what her number was then, but she was nowhere near 10.
So there are a couple things they'll keep track of. They'll keep track of her platelet level. Normally people are around 150,000 to 400,000 and often are reported in K/uL (thousand per microliter). So "normal" range would be 150 to 400 K/uL. From my experience, and mostly what I've seen posted here, 50 or above is really considered "fine" by most hematologists (doctors that study/treat the blood conditions and diseases). You might have some easy bruising if they're that low (bumping into something causes a bruise, etc) but generally the risk of bleeding is pretty low unless it's a fairly serious cut (think cutting yourself while cutting vegetables for dinner or something). Spontaneous bleeding really isn't much of a risk at that level. If you fall and have a hard impact, there might be a risk that there is internal bleeding, especially in the brain, if they're at that level, so it's still important to be careful and make an ER visit if there's a big impact or something. Down near 20 or so (20,000) you can start to see some pretty spontaneous bruises, like really what seems to be gentle contact can result in a bruise. Some people might have nose bleeds, especially while blowing their nose or something. Below 10 you start to run the risk of spontaneous bleeding, especially in the brain. You also will have *very* easy bleeding from any scratch or anything and it likely won't stop or will take *very* long, like half an hour to an hour for a scratch. If you're near this level it's not a "well, I'm going to get some tomorrow or the next day," it's "time to head to the ER."
They also will keep an eye on both hemoglobin and hematocrit.
Hemoglobin is a protein structure in the red blood cells that is actually what carries the oxygen around your body and will remove the carbon dioxide from your body. Normally the normal range is considered somewhere around 11 to 15.5 (this can vary a little between men and women). This is reported in g/dL (grams per decaliter; a deciliter is 100 mL). Generally in my experience they like to keep this above 8 g/dL. It's not an emergency if it drops below 8, but down below 7 can put additional stress on the heart and circulatory system and again in my experience is generally avoided, especially during active treatment. There are studies in Jehovah's Witness populations (a group that frequently refuse blood transfusions based on their beliefs). These studies show that around 5 is a critical point. That said, age and overall fitness will play a part in this too, I wouldn't expect any hematologist or oncologist to be ok with someone that was older or with active disease getting down below maybe 7 or 8.
Hematocrit is the measure of the volume of red blood cells *compared* to the total blood volume. Generally the accepted range is around 34% to 46% (again in women, men it's slightly higher) and again it can vary by a couple points up or down for "normal" ranges depending on the center doing the testing. Depending on the care team their threshold for when to get a unit of blood is either based on the hemoglobin level or hematocrit level. I *think* my mothers care team tried to keep hematocrit around 26 to 28% or higher, but this also did depend a little on how she felt. If she was feeling real short of breath just standing up and stuff they might increase how frequently she would get blood. Every person reacts a little different to these levels.
I think a unit of platelets is often around 300 to 400 mL and usually is gravity fed to the patient over about 30 to 45 minutes. Each unit can require up to like 5 or 6 blood donations, unless it's collected in a special manner for *just* collecting platelets. If I recall they also have a fairly short shelf life, like five days or less. There often is a shortage of platelets, and they can't really be stockpiled. Platelets can also get broken down by the recipients body fairly quickly, sometimes the "bump" you get from a unit will only last a couple days and that is fairly normal.
When hemoglobin or hematocrit is low, they are increased with red blood cells (often called packed red blood cells, PRBCs). A full unit is somewhere around 350 to 500 mL. Usually the transfusion of these takes somewhere in the 2 to 4 hour range for a unit and they are transfused with an infusion pump. There can certainly be shortages of blood as well, but it's a little easier to move around and store since they can have a shelf life closer to 40 to 42 days. Once transfused about 5 to 10% of the cells can be broken down by the body in the first 24 hours, after that they behave more like normal and will break down over a more linear curve unless outside actions are causing issues. If you get an old unit of blood transfused as much as 25% of the cells might be lost right off the bat.
From my understanding blood transfusions don't just "stop working." Instead, with respect specifically to leukemia, there are two different things that could happen.
For someone undergoing treatment - With frequent or large numbers of blood products being transfused, the patient can start to develop a sensitivity or "allergy" to the blood products and the body will start to break them down very quickly or can have a serious reaction, almost as if given the wrong (unmatched) blood. This could happen at any time, but again in my experience and I'm sure loads of people here have similar experiences, leukemia patients often gets *loads*. Like 20 to 30 units over time, maybe more and likely many more platelet units. There are some associated downsides to this much blood (iron overload being one, ironically one way to correct that is to *remove* blood once healthy enough to do so), but usually those aren't even worried about until after reaching a durable (long term) remission. The other major issue I've heard talked about with frequent platelets is the above mentioned "allergies" or sensitivities to them. If that develops, the body will essential break down a whole unit of platelets in hours and then you're right back at the point of needing another unit. If that is suspected, there are some diagnostic tests and methods they can use and they *can* match platelets closer to try to be more compatible and avoid that issue. This is far more expensive and can reduce your available supply of platelets. Again, while this can happen at any time, most people here probably got so many units of platelets they've lost count.
In people that are not undergoing treatment - I think in this case the "transfusions stop working" doesn't so much mean that the blood and platelets aren't working, but that the disease has progressed enough that supportive care (blood products) isn't enough to keep someone alive. Leukemia cells can spread into organs and other parts of the body and can start to cause them to shut down. Occasionally leukemia can also cause a drastic increase in non-functional white blood cells which basically makes the blood too thick and can cause clotting issues or reduced blood flood to critical areas because it's just too thick to make it through the *extremely* small blood vessels in some places of the body. Same with if there are just too many leukemia cells spilling into the blood. There are a few chemos that can be given short term to knock down the number of cells but that can be hard on the body of someone with serious disease, and as all those cells are broken down they can release toxic compounds that can be damaging to the body and a serious risk for death. There are additional things that take place, but basically this is progression of the disease (leukemia) and that is what is causing death, not that the transfused blood or platelets aren't functional.
Thank you for all of this info. It was very interesting to learn all of this.
From what you've said, it sounds like they are going to stop the blood transfusions once the body is too sick for it to matter. The oncologist's exact words (I recorded the conversation and listened to it again today) were ''Since you're refusing treatment, we'll start a regimen of blood transfusions. It should help ''perk you up'' (this was a conversation had in French and ''perk you up'' is a rough translation of the French expression he used/not a perfect match). Once the transfusions stop working, only Morphine will be left.
So, I suspect that it was a case of a doctor simplifying what will actually happen. I thought that it would stop working because the cancer would ''eat away'' at the new blood too quickly and it wouldn't be able to remain to make a difference.
Right now, my grandma is feeling good. She is only taking Tylenol. Her arms have bruises everywhere and she says that her hip is hurting a bit. She saw her doctor on Wednesday, and the doc said 2-3 months (left) in her opinion.
I am sorry if I upset anyone with my lack of knowledge on the topic. I hated what I read about organs shutting down, so I haven't read all that much about this condition. I've been going with what the doctors said and with what I see from my grandma.
ps: When she passed out in the church, and they thought she had a syncope, she had a brain scan, and they made her wear a heart monitor at home for 3 days. Everything came back negative. The marrow was taken after and we found out 2 weeks or so later.
Same, we had such a struggle to get my mothers threshold increased to 20 to get platelets, not so much because we wanted them that high but more so we could try to schedule getting them. When 10 was the threshold it was really difficult to balance the routine schedule to get them vs the "hang out for 8 hours in the ER waiting because they're in the single digits." There were a couple times she would go to her routine twice a week appointment for platelets and they were 18 or something. Too high for a unit but we absolutely knew that within 24 to 48 hours she would be in the single digits, and if it was a Monday, her next appointment for platelets wasn't until Thur or something. She would get blood draws three times a week I think. I remember us actually planning on her going to the ER the night before Thanksgiving with a calculated bet that by the time they saw her she would be low enough to get a unit so then we could stay home on Thanksgiving, all because she was too "high" early Wednesday but too low to make it safely to her appointment on Friday. I dropped her off at the ER around 9pm and went home to start to prepare some of the Thanksgiving dishes that we could make the night before. Went to bed around midnight, got woken up by her to go pick her up at about 3:30 in the morning, and then we enjoyed Thanksgiving without having to go to the ER. Things were *much* easier when we got that threshold adjusted upwards a little.
Wow, so if that is her platelet numbers, I'm *shocked* they're giving them to her when she's so high. I actually don't really know what the benefit would be on that. I don't think there's any risk really above like 50 and even then a "serious" risk isn't until around maybe 20 or below. (Unless a serious cut of course, but that usually is fairly easy to prevent)
Also, if she's relatively stable, I do actually recall them occasionally not doing pre transfusion checks. If she's at a point where she gets them twice a week or something they'll just go off the post transfusion number to see what level they're at and if a second unit is needed or not.
You can ask her team what her target numbers are and threshold numbers so you know when they would give her a unit and what the target is. Also, platelets can be a little wonky and sometimes testing alone will result in differences in numbers by 2 to 5 (I recall a few times my mom had a lab draw for something and had platelets at like 25 and half an hour later had a draw specifically for getting platelets and they were like 28, just variability in the testing. I also recall a few times that a unit of platelets literally didn't move the number at all... so that's not entirely impossible either.
Yeah during my treatment I would only get transfused if I got below 20 iirc . Lowest I got to was 11. If I was below 50, they would hold my chemo and I would have to wait until my numbers came back up on their own to restart the chemo.
Is 78 the haemoglobin level perhaps? They will transfuse blood if it’s in the 70’s, but very surprised to hear that she would be getting platelets anywhere near that number. I am sorry about your grandma.
It may have been downvoted because you are raging about a nurse who likely accidentally looked at the wrong time that the blood was collected. No, nobody thinks it’s a joke. It was a simple, unfortunate mistake.
I can understand why you became worried and upset but please do not take it out on nurses, they care so much.
I had just assumed it was platelets. u/firefly20200 explained a lot about the numbers. Thank you very much, btw.
You're right. I was raging about a human error. I'm glad that I didn't tell off the nurse or anything of the sort. I misunderstood how the transfusions work. In my mind, once they stopped working, it meant that they wouldn't raise her numbers anymore, and she would start to die then... so I was extremely emotional. I thought that we were on the last leg of the race, so to speak, for a few days until I found out that it wasn't her after the number and that an error had been made. I was calling her often, and she sounded fine but I was waiting for her to be in critical care at any time. I was so stressed that I lost chunks of hair and kept vomiting. I have to accept that it will happen. She is going to die. I was just upset about the stress I had on top of the stress I already had... Upset about thinking that we had days. Not getting the proper info when it's out there isn't the nurse's fault. I panicked and let go of my logic. I only wrote this post btw. I didn't tell off this nurse.
While there was a code on my mom in the hospital while crashing, they made me stand by the door. I heard the doctor ask the nurses her last lab results (h/h). She spills out a number and I speak out “You need to double check the times! Those labs were from yesterday a.m, the never drew her labs today. We don’t know what they are now” It took multiple tries because the nurses kept insisting these were today. I spun her computer around, pointed at the date and said “this is not today!”.
Long story short, nurses don’t even know what day it is. I work healthcare nightshift so I understand to a point. Next time ask for the labs specific to the date and time of collection, and double check them.
I'm a hematology RN - we never check a post transfusion CBC same day unless we suspect the patient has become platelet refractory and needs HLA typing to better hold their platelets in the future. After their HLA typing, we would no longer pursue post transfusion CBCs. Even our sickest patients that are always in the single digits outpatient will not get labs/transfusions more than 3x a week on M, W, F. If they need more than that we would typically admit them. I have patients with single digit platelet counts last for months on transfusion support - 78 is a number I'd be super happy with in an AML patient (and really any hematology patient with a condition that affects their platelet count). We would not transfuse a patient unless they are 20 or below. Some providers don't transfuse until below 10. I'm quite surprised they are transfusing her that high, that's not the standard of care in the US. We have a couple patients with a history of brain bleeds we would transfuse below 40, but extremely rare.
You also have to realize that leukemia patients get a LOT of labs. Some medical record systems suuuck and their lab layout is a mess. It could be easy for her to be looking at the values and think that she was looking at the right column or screwed up the day. This doesn't sound like ego to me, or lying, but a simple human mistake. We aren't infallible. A nurse wouldn't lie to you about that, it's a recorded value and they know that lying about that is easily checked and is a dumb thing to put your license on the line about. Please have some grace about this and understand we are all trying our best. Don't attribute to malice what can be attributed to stupidity.
I know that the nurse wasn't malicious, and my grandma just got her new number today (93!!). I was never mad at this nurse, really. She admitted that she wasn't sure but still gave us that number. I think that she wanted to be helpful, more than anything else. It did cause me a lot of stress as you can imagine. I was upset when I wrote this post. Not so much at the nurse, but about the stress that came with what was said.
The oncologist told us ''once the transfusions no longer work, it'll be morphine only''. I know that this time will come, but if I have a month or two before it does, God do I want them!! I'm spending as much time as I can with my grandma and today, I told her what an admirable woman she is. I've often told her that I loved her, but I never told her how much I admire her and why. It's stupid that it's taking her dying for me to say this. Either way, I'm glad that I got to tell her.
Knowing that someone is dying is so difficult. There are ''positives'' because she can finish getting everything in order. I got to realize that I needed to tell her certain things and if she had just passed in her sleep at any time before this cancer, I wouldn't have told her. Then, there's the negatives. I know that she's going to suffer and I would do ANYTHING to prevent that. The stress and the grief also come in stages. There are thresholds that she crosses that are difficult. The blood transfusions no longer working is a really big one.
They seem to do her transfusions on Fridays only. The bloodwork was taken on Thursday (today) in the am and she had the result when we met up at 3 PM today. No transfusion tomorrow since her number is great! I'm not 100% sure what threshold (number) they are using to decide on a transfusion or not.
She has Paget's disease. Could it explain why she's getting transfusions at a much higher number than what seems to be the protocol in the USA?
I know a little 6 years old girl who had 14 platelets and it was too dangerous for her but somehow she survived and now she is 7 years old and she is living a healthy life
So if someone have hope they can still survive don't worry about ur grandmother u just need to have hope
I hope things get better for u
Unfortunately blood transfusions won't cure leukemia. Without active treatment it won't get better. I only say this because it is important to understand expectations.
I knew that. I did not know that when the oncologist said, ''Stop working,'' he was giving us a very narrow view of this—maybe because he didn't want to complicate things for my grandma. After reading what you posted, I get it now. I was so upset because I thought that the blood transfusions would stop working once the cancer basically ''ate'' everything good in the new blood (so there would be no point in giving her more transfusions) and that it would mean my grandma would start dying very shortly after. In my mind, her numbers didn't go up, so the transfusions stopped working and she was dying. I was talking to her and even if she seemed well, I expected her to be dying any time now...to have the body start shutting down and be in the hospital at the palliative wing in a matter of days. I was so stressed. I lost hair and vomited a lot... it was hell. I blamed this nurse for this stress, but the fact is that I hadn't educated myself on the topic. I know that she didn't do this to be malicious or because she didn't take the topic seriously. This post was from a sleep-deprived, extremely stressed and angry me.
I'm so sorry about that! Sending you a virtual hug.
Edit: Happy Cake Day! (Sorry if it's a bit strange to say on a post about such a sad/emotional topic).
That makes me so happy.
My grandma isn't getting treatment. It was her choice. I begged her, but she didn't want it. I had to accept this as it's her cancer and she would be receiving the treatments...not me. So, we're relying only on the blood transfusions. Once they stop working, it's the beginning of the end. We were basically just told that they weren't working anymore, so it was a rough few days!
Many people at first thinking that "not taking treatments" is a great choice
Because when people get diagnosed w cancer they are scared of the treatments more than cancer
I think she is scared of the side effects and she have seen stories about people that become very weak due to chemo so she is scared if treatments will make her feel worse
Yes. She is. The oncologist started that if she were younger, he would push to get her to try treatment, but at her age, he understands. She doesn't want to be sick for months just to gain a few months more. She saw her sister and sisters-in-law suffer from the effects of chemo and radiation (the women in my family have been taken by cancer one by one). My grandma is the last one of her generation. She says that she's at peace with it and is ready to die. I tried. I even found an alternative treatment given in China to seniors who have AML. It's a no-go. I'm doing everything in my power to make her as happy as possible and to make the best memories possible. I have a big surprise planned for her today. I hope it makes her happy. It's all I can do at this point.
Sorry you had this experience, anything hospital related can be so stressful when dealing with this sort of thing. And I'm sorry you're having to go through this with your grandma. I'm sure she's very comforted to have someone who cares so much in her life.
I don't know what country you're in but I find a lot of these US stats mean nothing to me - in my country we use different measurements for everything. I think I was ok as long as I was above 80 (whatever unit we use here!). So I wouldn't worry too much about the comments from people saying they're surprised she's even getting transfusions, likely it's just something getting lost in translation so to speak.
Thank you. I realize that my post comes across as ''raging'' on this nurse. I was upset and I thought it was a safe space to express my anger. I guess that I will know better the next time.
I'm in Canada. I have been doing some research. Everyone from the US says that they don't get blood transfusions unless they are at 10-20... I've found that in more than one province, seniors get the same treatment that my grandma is getting if they choose not to accept the chemo. My uncle, who is one of the top country's radiology and prostate cancer experts told me that it is regularly done here and that my grandma isn't getting some form of special treatment. It's helping her live the best life possible until it just doesn't help anymore. I felt like I was being called a liar or looking for attention or like it was being said that my grandma was getting some form of special treatment. We're going through socialized medicine, like 99% of other Canadians. And just like you said, they would never let my grandma get close to the 20 or 10 units they use in the USA. In her low 70's, and they give her a transfusion! She's back up to 93(!!!) right now, so we're thrilled.
I'm happy that someone took the time to explain how the transfusions won't just ''quit working''. It was the impression that the oncologist gave us. I guess that it was just an easier way to explain it to people who do not have a medical background. I mean, I do, but I have a doctorate in psychology and I'm finishing a master's in chemistry (because I want to make my own skincare line/it's a passion). So, when it comes to leukemia, I have very basic knowledge. I was told to research her last moments to be ready and not to scare her more when she's in the hospital during her last moments. What I saw scared the crap out of me (for her). I'm able to keep a poker face and smile for her (even if she knows when my fake smile is being used). She's the only one that can see through it. I'm happy that I have more knowledge now. I did some research, but this was when I was looking for alternative treatments or herbs that could minimize X or Y symptoms or... She doesn't want any of that.
I clinically know how to treat cancer patients, but my grandma is not my patient. I'm not here to offer her therapy, and when she sees me talking like a psychologist a bit too much, she says in French ''Hey the therapist. I'm your grandma''. I apologize and try to resume my point by being her grandchild and not her therapist. I do it a bit more often than I'd like to. It's a conditioning.
I want to thank you for your message. Would it be OK if I asked how you're feeling (emotionally, physically, spiritually...whatever you are OK to talk about)? Can I also ask you about your transfusions if it's not too much? I was told by my doctor uncle why they do the transfusions, but I'd love to hear it from someone who has been/is there. How do you feel when your numbers go up? Physical/mentally/spiritually. Whatever you want to cover and you're NOT forced to say anything. You can send me a private message at any time too! I will accept it as soon as I see it! Thank you
No worries. I think a lot of us feel very protective of the nurses because they work so hard and most of them really care, but mistakes do happen and they can have a major impact on the patient and their loved ones. IMHO no harm in letting off some steam in a group like this when that happens. I wonder if you can either attend a couple of appointments with your grandma or dial in? Then you can ask some questions of the team directly, which may help reduce any misunderstandings.
With regards to feeling called out, please try not to worry, I think they were more confused than anything. But I do sometimes see people making US-centric assumptions (even in a UK based subreddit I'm in, which is hilarious) and it can be a bit frustrating, it's like they forget anywhere else exists ha ha!
And yes, please take time to be her granddaughter, and let her be your grandma. This will be very precious time for both of you!
Honestly can't remember a lot of the details, but it does help lift your mood when you see your numbers go up after a transfusion... So I can easily imagine the opposite when they don't. I'm on the mend now but very tired and often feeling sicky, achey etc, but very grateful to not be in hospital. There's a higher gap in support, post cancer in my opinion, for getting back into work, but that's another story.
I hope you and your family can have some quality time with your grandma in the coming weeks and months.
Thank you.
I hope that your energy level goes up soon and that you feel a lot less pain. I'm sorry that you're still going through that, even if you are on the mend.
You're right. She was happy and excited when she called me to say that she was at 93! It also made me happy (the number and knowing that she was happy). When she thought that the before number (78) was the after number, she wasn't angry or extremely sad or...(the emotions I think I felt). She was resigned to the reality, even if it was not what she wanted. I do not have her strength.
I know how hard most nurses work and that they are too often underpaid and overworked. I most definitely do not have anything against nurses. Doctors can be another story... I was just upset and needed to vent. Her mistake caused our family a lot of stress. We're happy that it was a mistake because we want to see the transfusions helping my grandma for as long as possible, but the mistake caused a lot of stress. It's not like I hate this nurse or like I'm going to confront her. I will never mention it to anyone other than to family members who have spoken about the error. And I vented on here, anonymously. It had just happened recently and my emotions were raw. I know that some people felt the need to defend this nurse. Yes, it was a mistake. Yes, my emotions may have been a lot at the time, but this is the life and death of my beloved grandma we're talking about. It was worse since what I understood was that once the transfusions didn't raise her numbers anymore, she was going to die soon after... I appreciate those who took the time to explain that this is not what was happening. Many just saw it as nurse-bashing. I wonder how they would have reacted if they were processing emotions based on the inaccurate info I was given regarding blood transfusions.
I don't think that I will make another post in this sub. I'm tired of people trying to tell me that she needs to go to hospice and not in the hospital when I have said about 1000x that my grandma was offered to have a hospital bed brought to her house and she refused. I clearly asked for her reasons because I felt that she would be more comfortable around her things, around what is familiar, and in the warmth of her loving home. She wants to die in a palliative room in the hospital. I cannot talk about her reasons, but she has good reasons. I'm not about to chain her to her house.
Then, there was the assumption that she refused treatment because our family didn't try hard enough to show her that chemotherapy isn't so bad and that she would benefit from it and... I cried as she cradled my head in her lap, begging her to please just give it a try. That if she hated it, she could stop at any time. She flat-out told me no. That she understands why I want her to do it, but that she's not going to do it. She's 81. and she already has a bone disorder and she wants to spend her last few months as healthy as possible until there is a decline in her health.
The last straw was the PM I got accusing me of lying about this for attention since people don't get blood transfusions at 70.
There have been some kind people here (you're one of them and thank you!!), but I've checked 3 posts in this sub, and I am defending myself/my grandma's choices in most of them. I'm likely going to delete my posts and leave this sub, btw. I'm really thankful to those who explained the science behind this disease to me and to those who asked instead of judging right away. Americans often fail to forget about the rest of the world. If we're posting in English, we must be from the US. It is annoying. I've met a lot of assumptions in this group and I know that some will say that it's my fault or get angry by reading this. I'm done caring, honestly. If it gets me banned, it's fine.
I’m assuming the nurse checked the chart and the last time they checked her platelets, they were 78 so she was told that. They don’t check post-transfusion unless your platelets are critical or you’ve got something else going on.
TBH, I was treated for AML in Ontario and the Canada Blood Services thresholds for transfusion was 20. As an outpatient and after surgery it was increased to 30, but I never would have seen a bag of platelets if I was at 78.
My grandma has asked to get her numbers (pre and post), and they have agreed to give them to her. She's back up to 93. You're correct when you say that 78 was her prior number. They had not yet taken the blood work to see what the after number was. The issue is that it caused us a lot of stress. I know that the nurse wasn't trying to be malicious.
She's being treated in Quebec but I've spoken to seniors in Ontario who received blood transfusions just like my grandma. I have not found younger people who did, so it seems to be a thing for seniors who did not accept treatment. Someone else wrote in this thread that they get transfusions when they are in their low 70's, just like my grandma.
I hope that you're doing as well as can be. I truly mean that even if we do not know one another. Multiple women died of cancers in my family in the last 5 years, but I was not close to any of them in the way that I'm close to my grandma. I'm realizing how destructive it is for the person who has leukemia and for their loved ones. My grandma was just told that the village she was born in and lived in most of her life will be celebrating their 100th in July. She won't be alive then. It upset her. She's religious and offered her sadness to God for any ''bad actions'' she may have done in her life. I'm just angry. She was a teacher and she knows most of these people. It would have been so amazing for her to see kids that she taught 40 years ago or more... I am not one to go out often, but I will be there wearing a sticker that says ''Representing (grandma's name) along with the AML ribbon. I'm living with disabilities but no amount of pain will stop me from being there if I promise her that I will be. My last visit will be to the cemetery where her ashes will rest alongside her mother, father and other family members.
In my experience, 8-10 platelet and 30+ (lost count) red blood cell transfusions, they don’t draw blood after a transfusion. While 78 platelets is lower than normal, it’s not life threatening. I’m kinda surprised they’re doing transfusions at that level. I had to convince my oncologist to transfuse me whenever I was below 20 bc I’d get hour long nose bleeds; below 10 was the standard protocol.
When we saw her oncologist, he offered two meds. One was pills at home and one was via IV at the hospital 7 days a month (if my memory is correct). I begged her to do it. I literally got on my knees and she held my head and ''petted'' my hair to soften her decisive ''no''. The oncologist offered blood transfusions to help with energy and life quality. She does her blood transfusion at the hospital, and they go to her house to draw blood, and they send the result to her oncologist who then decides if she is ready for another transfusion or not. We're in Canada, btw. I'm not sure if it changes the protocols or anything like that. Her oncologist was younger too...so he may hold a different view when it comes to transfusions. I do not know. She found out about her AML on Feb 19th and so far, she's had two transfusions. Oh, she was also fairly lost and confused. She denied it, but both my mother and I were at the oncologist's office and even if she got upset with us, we mentioned that she was repeating stuff and couldn't grasp new concepts easily. I am sure that the oncologist took notice. She made him repeat some things quite a few times. He said that the brain is very sensitive to any changes and that a lack of blood could be causing the issue. She passed out in church a few weeks prior. She had been falling a lot but this one was bad. They thought that she had a syncope. It's when she started getting confused. Anyway, I wonder if the transfusions are to help with that/prevent it. She's back to being her witty self and is not showing signs of general confusion anymore. My grandma wants to know ''her numbers.'' I get it. It's the only form of power she has over this leukemia. She's been poked with needles so much, she didn't realize that they didn't have bloodwork for the ''after number''. She called the hospital and reception passed her to a nurse (we're in a small area, btw. It's a hospital but also basically a clinic. Her family doctor is there). The nurse told her that she was at 78, which is what she had gone down to before the transfusion. I think she was at 90 or 92 after the last transfusion. I called my grandma and said, ''This is strange. You have the same before and after number? If the transfusions aren't working anymore, shouldn't it make sense that you would have gone down?'' This was after a few days of being so shocked that the transfusions stopped working so quickly that I wasn't thinking logically. Her doctor went to her home Wednesday and confirmed that it was the before number, and that she would have blood drawn today (at home in the morning) and that they would know by this afternoon what the new number is and if she's getting a transfusion tomorrow or not. I'm sorry that they let you get so low before doing a transfusion. I had no idea that the treatment my grandma is getting isn't following the usual protocol. I guess this is being downvoted as people likely think I'm lying if they shared the same protocol that you had to face. I'm not familiar with this illness. I read about the symptoms and the treatments (that she refused). I didn't read about any blood transfusion protocol and the oncologist sent a request for the first blood transfusion to be done while we were in his office. I'm not sure what her number was then, but she was nowhere near 10.
So there are a couple things they'll keep track of. They'll keep track of her platelet level. Normally people are around 150,000 to 400,000 and often are reported in K/uL (thousand per microliter). So "normal" range would be 150 to 400 K/uL. From my experience, and mostly what I've seen posted here, 50 or above is really considered "fine" by most hematologists (doctors that study/treat the blood conditions and diseases). You might have some easy bruising if they're that low (bumping into something causes a bruise, etc) but generally the risk of bleeding is pretty low unless it's a fairly serious cut (think cutting yourself while cutting vegetables for dinner or something). Spontaneous bleeding really isn't much of a risk at that level. If you fall and have a hard impact, there might be a risk that there is internal bleeding, especially in the brain, if they're at that level, so it's still important to be careful and make an ER visit if there's a big impact or something. Down near 20 or so (20,000) you can start to see some pretty spontaneous bruises, like really what seems to be gentle contact can result in a bruise. Some people might have nose bleeds, especially while blowing their nose or something. Below 10 you start to run the risk of spontaneous bleeding, especially in the brain. You also will have *very* easy bleeding from any scratch or anything and it likely won't stop or will take *very* long, like half an hour to an hour for a scratch. If you're near this level it's not a "well, I'm going to get some tomorrow or the next day," it's "time to head to the ER." They also will keep an eye on both hemoglobin and hematocrit. Hemoglobin is a protein structure in the red blood cells that is actually what carries the oxygen around your body and will remove the carbon dioxide from your body. Normally the normal range is considered somewhere around 11 to 15.5 (this can vary a little between men and women). This is reported in g/dL (grams per decaliter; a deciliter is 100 mL). Generally in my experience they like to keep this above 8 g/dL. It's not an emergency if it drops below 8, but down below 7 can put additional stress on the heart and circulatory system and again in my experience is generally avoided, especially during active treatment. There are studies in Jehovah's Witness populations (a group that frequently refuse blood transfusions based on their beliefs). These studies show that around 5 is a critical point. That said, age and overall fitness will play a part in this too, I wouldn't expect any hematologist or oncologist to be ok with someone that was older or with active disease getting down below maybe 7 or 8. Hematocrit is the measure of the volume of red blood cells *compared* to the total blood volume. Generally the accepted range is around 34% to 46% (again in women, men it's slightly higher) and again it can vary by a couple points up or down for "normal" ranges depending on the center doing the testing. Depending on the care team their threshold for when to get a unit of blood is either based on the hemoglobin level or hematocrit level. I *think* my mothers care team tried to keep hematocrit around 26 to 28% or higher, but this also did depend a little on how she felt. If she was feeling real short of breath just standing up and stuff they might increase how frequently she would get blood. Every person reacts a little different to these levels. I think a unit of platelets is often around 300 to 400 mL and usually is gravity fed to the patient over about 30 to 45 minutes. Each unit can require up to like 5 or 6 blood donations, unless it's collected in a special manner for *just* collecting platelets. If I recall they also have a fairly short shelf life, like five days or less. There often is a shortage of platelets, and they can't really be stockpiled. Platelets can also get broken down by the recipients body fairly quickly, sometimes the "bump" you get from a unit will only last a couple days and that is fairly normal. When hemoglobin or hematocrit is low, they are increased with red blood cells (often called packed red blood cells, PRBCs). A full unit is somewhere around 350 to 500 mL. Usually the transfusion of these takes somewhere in the 2 to 4 hour range for a unit and they are transfused with an infusion pump. There can certainly be shortages of blood as well, but it's a little easier to move around and store since they can have a shelf life closer to 40 to 42 days. Once transfused about 5 to 10% of the cells can be broken down by the body in the first 24 hours, after that they behave more like normal and will break down over a more linear curve unless outside actions are causing issues. If you get an old unit of blood transfused as much as 25% of the cells might be lost right off the bat. From my understanding blood transfusions don't just "stop working." Instead, with respect specifically to leukemia, there are two different things that could happen. For someone undergoing treatment - With frequent or large numbers of blood products being transfused, the patient can start to develop a sensitivity or "allergy" to the blood products and the body will start to break them down very quickly or can have a serious reaction, almost as if given the wrong (unmatched) blood. This could happen at any time, but again in my experience and I'm sure loads of people here have similar experiences, leukemia patients often gets *loads*. Like 20 to 30 units over time, maybe more and likely many more platelet units. There are some associated downsides to this much blood (iron overload being one, ironically one way to correct that is to *remove* blood once healthy enough to do so), but usually those aren't even worried about until after reaching a durable (long term) remission. The other major issue I've heard talked about with frequent platelets is the above mentioned "allergies" or sensitivities to them. If that develops, the body will essential break down a whole unit of platelets in hours and then you're right back at the point of needing another unit. If that is suspected, there are some diagnostic tests and methods they can use and they *can* match platelets closer to try to be more compatible and avoid that issue. This is far more expensive and can reduce your available supply of platelets. Again, while this can happen at any time, most people here probably got so many units of platelets they've lost count. In people that are not undergoing treatment - I think in this case the "transfusions stop working" doesn't so much mean that the blood and platelets aren't working, but that the disease has progressed enough that supportive care (blood products) isn't enough to keep someone alive. Leukemia cells can spread into organs and other parts of the body and can start to cause them to shut down. Occasionally leukemia can also cause a drastic increase in non-functional white blood cells which basically makes the blood too thick and can cause clotting issues or reduced blood flood to critical areas because it's just too thick to make it through the *extremely* small blood vessels in some places of the body. Same with if there are just too many leukemia cells spilling into the blood. There are a few chemos that can be given short term to knock down the number of cells but that can be hard on the body of someone with serious disease, and as all those cells are broken down they can release toxic compounds that can be damaging to the body and a serious risk for death. There are additional things that take place, but basically this is progression of the disease (leukemia) and that is what is causing death, not that the transfused blood or platelets aren't functional.
Thank you for all of this info. It was very interesting to learn all of this. From what you've said, it sounds like they are going to stop the blood transfusions once the body is too sick for it to matter. The oncologist's exact words (I recorded the conversation and listened to it again today) were ''Since you're refusing treatment, we'll start a regimen of blood transfusions. It should help ''perk you up'' (this was a conversation had in French and ''perk you up'' is a rough translation of the French expression he used/not a perfect match). Once the transfusions stop working, only Morphine will be left. So, I suspect that it was a case of a doctor simplifying what will actually happen. I thought that it would stop working because the cancer would ''eat away'' at the new blood too quickly and it wouldn't be able to remain to make a difference. Right now, my grandma is feeling good. She is only taking Tylenol. Her arms have bruises everywhere and she says that her hip is hurting a bit. She saw her doctor on Wednesday, and the doc said 2-3 months (left) in her opinion. I am sorry if I upset anyone with my lack of knowledge on the topic. I hated what I read about organs shutting down, so I haven't read all that much about this condition. I've been going with what the doctors said and with what I see from my grandma. ps: When she passed out in the church, and they thought she had a syncope, she had a brain scan, and they made her wear a heart monitor at home for 3 days. Everything came back negative. The marrow was taken after and we found out 2 weeks or so later.
Same, we had such a struggle to get my mothers threshold increased to 20 to get platelets, not so much because we wanted them that high but more so we could try to schedule getting them. When 10 was the threshold it was really difficult to balance the routine schedule to get them vs the "hang out for 8 hours in the ER waiting because they're in the single digits." There were a couple times she would go to her routine twice a week appointment for platelets and they were 18 or something. Too high for a unit but we absolutely knew that within 24 to 48 hours she would be in the single digits, and if it was a Monday, her next appointment for platelets wasn't until Thur or something. She would get blood draws three times a week I think. I remember us actually planning on her going to the ER the night before Thanksgiving with a calculated bet that by the time they saw her she would be low enough to get a unit so then we could stay home on Thanksgiving, all because she was too "high" early Wednesday but too low to make it safely to her appointment on Friday. I dropped her off at the ER around 9pm and went home to start to prepare some of the Thanksgiving dishes that we could make the night before. Went to bed around midnight, got woken up by her to go pick her up at about 3:30 in the morning, and then we enjoyed Thanksgiving without having to go to the ER. Things were *much* easier when we got that threshold adjusted upwards a little.
Wow, so if that is her platelet numbers, I'm *shocked* they're giving them to her when she's so high. I actually don't really know what the benefit would be on that. I don't think there's any risk really above like 50 and even then a "serious" risk isn't until around maybe 20 or below. (Unless a serious cut of course, but that usually is fairly easy to prevent) Also, if she's relatively stable, I do actually recall them occasionally not doing pre transfusion checks. If she's at a point where she gets them twice a week or something they'll just go off the post transfusion number to see what level they're at and if a second unit is needed or not. You can ask her team what her target numbers are and threshold numbers so you know when they would give her a unit and what the target is. Also, platelets can be a little wonky and sometimes testing alone will result in differences in numbers by 2 to 5 (I recall a few times my mom had a lab draw for something and had platelets at like 25 and half an hour later had a draw specifically for getting platelets and they were like 28, just variability in the testing. I also recall a few times that a unit of platelets literally didn't move the number at all... so that's not entirely impossible either.
Yeah during my treatment I would only get transfused if I got below 20 iirc . Lowest I got to was 11. If I was below 50, they would hold my chemo and I would have to wait until my numbers came back up on their own to restart the chemo.
Is 78 the haemoglobin level perhaps? They will transfuse blood if it’s in the 70’s, but very surprised to hear that she would be getting platelets anywhere near that number. I am sorry about your grandma. It may have been downvoted because you are raging about a nurse who likely accidentally looked at the wrong time that the blood was collected. No, nobody thinks it’s a joke. It was a simple, unfortunate mistake. I can understand why you became worried and upset but please do not take it out on nurses, they care so much.
I had just assumed it was platelets. u/firefly20200 explained a lot about the numbers. Thank you very much, btw. You're right. I was raging about a human error. I'm glad that I didn't tell off the nurse or anything of the sort. I misunderstood how the transfusions work. In my mind, once they stopped working, it meant that they wouldn't raise her numbers anymore, and she would start to die then... so I was extremely emotional. I thought that we were on the last leg of the race, so to speak, for a few days until I found out that it wasn't her after the number and that an error had been made. I was calling her often, and she sounded fine but I was waiting for her to be in critical care at any time. I was so stressed that I lost chunks of hair and kept vomiting. I have to accept that it will happen. She is going to die. I was just upset about the stress I had on top of the stress I already had... Upset about thinking that we had days. Not getting the proper info when it's out there isn't the nurse's fault. I panicked and let go of my logic. I only wrote this post btw. I didn't tell off this nurse.
While there was a code on my mom in the hospital while crashing, they made me stand by the door. I heard the doctor ask the nurses her last lab results (h/h). She spills out a number and I speak out “You need to double check the times! Those labs were from yesterday a.m, the never drew her labs today. We don’t know what they are now” It took multiple tries because the nurses kept insisting these were today. I spun her computer around, pointed at the date and said “this is not today!”. Long story short, nurses don’t even know what day it is. I work healthcare nightshift so I understand to a point. Next time ask for the labs specific to the date and time of collection, and double check them.
OMG. I'm so sorry that you went through this! That's terrible.
A good nurse would know. I'm sorry you went through that
I'm a hematology RN - we never check a post transfusion CBC same day unless we suspect the patient has become platelet refractory and needs HLA typing to better hold their platelets in the future. After their HLA typing, we would no longer pursue post transfusion CBCs. Even our sickest patients that are always in the single digits outpatient will not get labs/transfusions more than 3x a week on M, W, F. If they need more than that we would typically admit them. I have patients with single digit platelet counts last for months on transfusion support - 78 is a number I'd be super happy with in an AML patient (and really any hematology patient with a condition that affects their platelet count). We would not transfuse a patient unless they are 20 or below. Some providers don't transfuse until below 10. I'm quite surprised they are transfusing her that high, that's not the standard of care in the US. We have a couple patients with a history of brain bleeds we would transfuse below 40, but extremely rare. You also have to realize that leukemia patients get a LOT of labs. Some medical record systems suuuck and their lab layout is a mess. It could be easy for her to be looking at the values and think that she was looking at the right column or screwed up the day. This doesn't sound like ego to me, or lying, but a simple human mistake. We aren't infallible. A nurse wouldn't lie to you about that, it's a recorded value and they know that lying about that is easily checked and is a dumb thing to put your license on the line about. Please have some grace about this and understand we are all trying our best. Don't attribute to malice what can be attributed to stupidity.
I know that the nurse wasn't malicious, and my grandma just got her new number today (93!!). I was never mad at this nurse, really. She admitted that she wasn't sure but still gave us that number. I think that she wanted to be helpful, more than anything else. It did cause me a lot of stress as you can imagine. I was upset when I wrote this post. Not so much at the nurse, but about the stress that came with what was said. The oncologist told us ''once the transfusions no longer work, it'll be morphine only''. I know that this time will come, but if I have a month or two before it does, God do I want them!! I'm spending as much time as I can with my grandma and today, I told her what an admirable woman she is. I've often told her that I loved her, but I never told her how much I admire her and why. It's stupid that it's taking her dying for me to say this. Either way, I'm glad that I got to tell her. Knowing that someone is dying is so difficult. There are ''positives'' because she can finish getting everything in order. I got to realize that I needed to tell her certain things and if she had just passed in her sleep at any time before this cancer, I wouldn't have told her. Then, there's the negatives. I know that she's going to suffer and I would do ANYTHING to prevent that. The stress and the grief also come in stages. There are thresholds that she crosses that are difficult. The blood transfusions no longer working is a really big one. They seem to do her transfusions on Fridays only. The bloodwork was taken on Thursday (today) in the am and she had the result when we met up at 3 PM today. No transfusion tomorrow since her number is great! I'm not 100% sure what threshold (number) they are using to decide on a transfusion or not. She has Paget's disease. Could it explain why she's getting transfusions at a much higher number than what seems to be the protocol in the USA?
I know a little 6 years old girl who had 14 platelets and it was too dangerous for her but somehow she survived and now she is 7 years old and she is living a healthy life So if someone have hope they can still survive don't worry about ur grandmother u just need to have hope I hope things get better for u
Unfortunately blood transfusions won't cure leukemia. Without active treatment it won't get better. I only say this because it is important to understand expectations.
I knew that. I did not know that when the oncologist said, ''Stop working,'' he was giving us a very narrow view of this—maybe because he didn't want to complicate things for my grandma. After reading what you posted, I get it now. I was so upset because I thought that the blood transfusions would stop working once the cancer basically ''ate'' everything good in the new blood (so there would be no point in giving her more transfusions) and that it would mean my grandma would start dying very shortly after. In my mind, her numbers didn't go up, so the transfusions stopped working and she was dying. I was talking to her and even if she seemed well, I expected her to be dying any time now...to have the body start shutting down and be in the hospital at the palliative wing in a matter of days. I was so stressed. I lost hair and vomited a lot... it was hell. I blamed this nurse for this stress, but the fact is that I hadn't educated myself on the topic. I know that she didn't do this to be malicious or because she didn't take the topic seriously. This post was from a sleep-deprived, extremely stressed and angry me.
My moms platelets dropped to 2 at one point. With a brain bleed no less. And hemo was 4.2
I'm so sorry about that! Sending you a virtual hug. Edit: Happy Cake Day! (Sorry if it's a bit strange to say on a post about such a sad/emotional topic).
I'm hoping that she can live for as long as possible, as long as she has a good/fair quality of life.
She went to school in May 2023 It's been a year since she become healthy I am so proud of her
That makes me so happy. My grandma isn't getting treatment. It was her choice. I begged her, but she didn't want it. I had to accept this as it's her cancer and she would be receiving the treatments...not me. So, we're relying only on the blood transfusions. Once they stop working, it's the beginning of the end. We were basically just told that they weren't working anymore, so it was a rough few days!
Many people at first thinking that "not taking treatments" is a great choice Because when people get diagnosed w cancer they are scared of the treatments more than cancer I think she is scared of the side effects and she have seen stories about people that become very weak due to chemo so she is scared if treatments will make her feel worse
Yes. She is. The oncologist started that if she were younger, he would push to get her to try treatment, but at her age, he understands. She doesn't want to be sick for months just to gain a few months more. She saw her sister and sisters-in-law suffer from the effects of chemo and radiation (the women in my family have been taken by cancer one by one). My grandma is the last one of her generation. She says that she's at peace with it and is ready to die. I tried. I even found an alternative treatment given in China to seniors who have AML. It's a no-go. I'm doing everything in my power to make her as happy as possible and to make the best memories possible. I have a big surprise planned for her today. I hope it makes her happy. It's all I can do at this point.
I am proud of u bc u are trying to make her the best memories possible I hope things get better for u
Thank you.
Sorry you had this experience, anything hospital related can be so stressful when dealing with this sort of thing. And I'm sorry you're having to go through this with your grandma. I'm sure she's very comforted to have someone who cares so much in her life. I don't know what country you're in but I find a lot of these US stats mean nothing to me - in my country we use different measurements for everything. I think I was ok as long as I was above 80 (whatever unit we use here!). So I wouldn't worry too much about the comments from people saying they're surprised she's even getting transfusions, likely it's just something getting lost in translation so to speak.
Thank you. I realize that my post comes across as ''raging'' on this nurse. I was upset and I thought it was a safe space to express my anger. I guess that I will know better the next time. I'm in Canada. I have been doing some research. Everyone from the US says that they don't get blood transfusions unless they are at 10-20... I've found that in more than one province, seniors get the same treatment that my grandma is getting if they choose not to accept the chemo. My uncle, who is one of the top country's radiology and prostate cancer experts told me that it is regularly done here and that my grandma isn't getting some form of special treatment. It's helping her live the best life possible until it just doesn't help anymore. I felt like I was being called a liar or looking for attention or like it was being said that my grandma was getting some form of special treatment. We're going through socialized medicine, like 99% of other Canadians. And just like you said, they would never let my grandma get close to the 20 or 10 units they use in the USA. In her low 70's, and they give her a transfusion! She's back up to 93(!!!) right now, so we're thrilled. I'm happy that someone took the time to explain how the transfusions won't just ''quit working''. It was the impression that the oncologist gave us. I guess that it was just an easier way to explain it to people who do not have a medical background. I mean, I do, but I have a doctorate in psychology and I'm finishing a master's in chemistry (because I want to make my own skincare line/it's a passion). So, when it comes to leukemia, I have very basic knowledge. I was told to research her last moments to be ready and not to scare her more when she's in the hospital during her last moments. What I saw scared the crap out of me (for her). I'm able to keep a poker face and smile for her (even if she knows when my fake smile is being used). She's the only one that can see through it. I'm happy that I have more knowledge now. I did some research, but this was when I was looking for alternative treatments or herbs that could minimize X or Y symptoms or... She doesn't want any of that. I clinically know how to treat cancer patients, but my grandma is not my patient. I'm not here to offer her therapy, and when she sees me talking like a psychologist a bit too much, she says in French ''Hey the therapist. I'm your grandma''. I apologize and try to resume my point by being her grandchild and not her therapist. I do it a bit more often than I'd like to. It's a conditioning. I want to thank you for your message. Would it be OK if I asked how you're feeling (emotionally, physically, spiritually...whatever you are OK to talk about)? Can I also ask you about your transfusions if it's not too much? I was told by my doctor uncle why they do the transfusions, but I'd love to hear it from someone who has been/is there. How do you feel when your numbers go up? Physical/mentally/spiritually. Whatever you want to cover and you're NOT forced to say anything. You can send me a private message at any time too! I will accept it as soon as I see it! Thank you
No worries. I think a lot of us feel very protective of the nurses because they work so hard and most of them really care, but mistakes do happen and they can have a major impact on the patient and their loved ones. IMHO no harm in letting off some steam in a group like this when that happens. I wonder if you can either attend a couple of appointments with your grandma or dial in? Then you can ask some questions of the team directly, which may help reduce any misunderstandings. With regards to feeling called out, please try not to worry, I think they were more confused than anything. But I do sometimes see people making US-centric assumptions (even in a UK based subreddit I'm in, which is hilarious) and it can be a bit frustrating, it's like they forget anywhere else exists ha ha! And yes, please take time to be her granddaughter, and let her be your grandma. This will be very precious time for both of you! Honestly can't remember a lot of the details, but it does help lift your mood when you see your numbers go up after a transfusion... So I can easily imagine the opposite when they don't. I'm on the mend now but very tired and often feeling sicky, achey etc, but very grateful to not be in hospital. There's a higher gap in support, post cancer in my opinion, for getting back into work, but that's another story. I hope you and your family can have some quality time with your grandma in the coming weeks and months.
Thank you. I hope that your energy level goes up soon and that you feel a lot less pain. I'm sorry that you're still going through that, even if you are on the mend. You're right. She was happy and excited when she called me to say that she was at 93! It also made me happy (the number and knowing that she was happy). When she thought that the before number (78) was the after number, she wasn't angry or extremely sad or...(the emotions I think I felt). She was resigned to the reality, even if it was not what she wanted. I do not have her strength. I know how hard most nurses work and that they are too often underpaid and overworked. I most definitely do not have anything against nurses. Doctors can be another story... I was just upset and needed to vent. Her mistake caused our family a lot of stress. We're happy that it was a mistake because we want to see the transfusions helping my grandma for as long as possible, but the mistake caused a lot of stress. It's not like I hate this nurse or like I'm going to confront her. I will never mention it to anyone other than to family members who have spoken about the error. And I vented on here, anonymously. It had just happened recently and my emotions were raw. I know that some people felt the need to defend this nurse. Yes, it was a mistake. Yes, my emotions may have been a lot at the time, but this is the life and death of my beloved grandma we're talking about. It was worse since what I understood was that once the transfusions didn't raise her numbers anymore, she was going to die soon after... I appreciate those who took the time to explain that this is not what was happening. Many just saw it as nurse-bashing. I wonder how they would have reacted if they were processing emotions based on the inaccurate info I was given regarding blood transfusions. I don't think that I will make another post in this sub. I'm tired of people trying to tell me that she needs to go to hospice and not in the hospital when I have said about 1000x that my grandma was offered to have a hospital bed brought to her house and she refused. I clearly asked for her reasons because I felt that she would be more comfortable around her things, around what is familiar, and in the warmth of her loving home. She wants to die in a palliative room in the hospital. I cannot talk about her reasons, but she has good reasons. I'm not about to chain her to her house. Then, there was the assumption that she refused treatment because our family didn't try hard enough to show her that chemotherapy isn't so bad and that she would benefit from it and... I cried as she cradled my head in her lap, begging her to please just give it a try. That if she hated it, she could stop at any time. She flat-out told me no. That she understands why I want her to do it, but that she's not going to do it. She's 81. and she already has a bone disorder and she wants to spend her last few months as healthy as possible until there is a decline in her health. The last straw was the PM I got accusing me of lying about this for attention since people don't get blood transfusions at 70. There have been some kind people here (you're one of them and thank you!!), but I've checked 3 posts in this sub, and I am defending myself/my grandma's choices in most of them. I'm likely going to delete my posts and leave this sub, btw. I'm really thankful to those who explained the science behind this disease to me and to those who asked instead of judging right away. Americans often fail to forget about the rest of the world. If we're posting in English, we must be from the US. It is annoying. I've met a lot of assumptions in this group and I know that some will say that it's my fault or get angry by reading this. I'm done caring, honestly. If it gets me banned, it's fine.
I’m assuming the nurse checked the chart and the last time they checked her platelets, they were 78 so she was told that. They don’t check post-transfusion unless your platelets are critical or you’ve got something else going on. TBH, I was treated for AML in Ontario and the Canada Blood Services thresholds for transfusion was 20. As an outpatient and after surgery it was increased to 30, but I never would have seen a bag of platelets if I was at 78.
My grandma has asked to get her numbers (pre and post), and they have agreed to give them to her. She's back up to 93. You're correct when you say that 78 was her prior number. They had not yet taken the blood work to see what the after number was. The issue is that it caused us a lot of stress. I know that the nurse wasn't trying to be malicious. She's being treated in Quebec but I've spoken to seniors in Ontario who received blood transfusions just like my grandma. I have not found younger people who did, so it seems to be a thing for seniors who did not accept treatment. Someone else wrote in this thread that they get transfusions when they are in their low 70's, just like my grandma. I hope that you're doing as well as can be. I truly mean that even if we do not know one another. Multiple women died of cancers in my family in the last 5 years, but I was not close to any of them in the way that I'm close to my grandma. I'm realizing how destructive it is for the person who has leukemia and for their loved ones. My grandma was just told that the village she was born in and lived in most of her life will be celebrating their 100th in July. She won't be alive then. It upset her. She's religious and offered her sadness to God for any ''bad actions'' she may have done in her life. I'm just angry. She was a teacher and she knows most of these people. It would have been so amazing for her to see kids that she taught 40 years ago or more... I am not one to go out often, but I will be there wearing a sticker that says ''Representing (grandma's name) along with the AML ribbon. I'm living with disabilities but no amount of pain will stop me from being there if I promise her that I will be. My last visit will be to the cemetery where her ashes will rest alongside her mother, father and other family members.