My mom is currently going through the auto transplant process.
The process was on an outpatient basis but on day +6 (4/22) she was admitted to the hospital due to constant nausea and low blood pressure. Yesterday evening, day +7 (4/23), she was moved into mICU because her blood pressure will not stabilize - it is bouncing between normal and low.
Is having low blood pressure a "common" side effect of the transplant process? What factors could be contributing to this?
My mom has not eaten or drunk much of anything since day +6 afternoon - maybe a few sips of water. She has an intense pain in the area of her esophagus (like below the sternum. She said it was like having hiccups in that area) and can not keep anything down. A nurse asked her to take some medication orally on day +7 afternoon and she immediately vomited. It was fairly violent and contained some blood.
We asked if she could be given anything to help with the pain. The nurse said that they could give her oral lidocaine (I think) but it causes nausea and since her nausea is not under control they would rather not. She brought mom a tums though (I don't know why. She couldn't swallow it).
I assume that the pain mom is experiencing is mucositis? I was wondering if anyone else experienced this sort of issue during their transplant process and could offer any suggestions on how to make her more comfortable. Or is this something that will self correct when her counts start climbing?
Any advice would greatly appreciated. Thanks!
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curiousG - Name: Crystal
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 61
Re: Auto transplant - low blood pressure, mucositis
My husband had to be admitted on about day 4 due to low blood pressure from dehydration. He was so nauseous that he couldn't get enough fluids in. Two days in a row, the transplant unit gave him iv fluids when he came in for his daily appointments, but when he got up to leave on the second day, he fainted and was admitted. He ended up being in the hospital for 2 weeks due to the severe nausea (and then getting a c-diff infection).
Low blood pressure can also be caused by infection, so I am sure they are also working your mom up for that.
For now, get the meds changed so that she does not have to take them by mouth. They have various different meds they can try for nausea - sometimes it takes a combo of them. Sometimes it just takes time.
Good luck to both of you. Nausea is not fun!
Low blood pressure can also be caused by infection, so I am sure they are also working your mom up for that.
For now, get the meds changed so that she does not have to take them by mouth. They have various different meds they can try for nausea - sometimes it takes a combo of them. Sometimes it just takes time.
Good luck to both of you. Nausea is not fun!
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Auto transplant - low blood pressure, mucositis
Hi CuriousG,
I'm sorry to hear about your mother's problems. I hope they are resolving by the time you read this.
I had low blood pressure starting at Day +8 after my SCT. It was caused by an E coli infection. The infection led to septic shock and I was moved to the ICU for 3 days. My medical team flooded me with fluids to boost my blood pressure and with 4 different antibiotics to fight the infection. They used the 4 different antibiotics initially because it took a couple of days to culture the E coli infection to determine which antibiotic would work against it and they didn't want to waste time waiting for the culture results to come back before hitting on the "right" antibiotic.
I don't know about the pain your mother is experiencing. Fortunately for me, I didn't have that problem. As a guess, it might be mucositis, but it might also be related to an infection if the low blood pressure is being caused by an infection.
Have you asked your mother's medical team what they think is causing the low blood pressure and pain? Clearly they are taking it seriously (as they should) since they admitted your mother to the mICU.
Best wishes to your mother. Please keep us posted on how she is doing.
Mike
I'm sorry to hear about your mother's problems. I hope they are resolving by the time you read this.
I had low blood pressure starting at Day +8 after my SCT. It was caused by an E coli infection. The infection led to septic shock and I was moved to the ICU for 3 days. My medical team flooded me with fluids to boost my blood pressure and with 4 different antibiotics to fight the infection. They used the 4 different antibiotics initially because it took a couple of days to culture the E coli infection to determine which antibiotic would work against it and they didn't want to waste time waiting for the culture results to come back before hitting on the "right" antibiotic.
I don't know about the pain your mother is experiencing. Fortunately for me, I didn't have that problem. As a guess, it might be mucositis, but it might also be related to an infection if the low blood pressure is being caused by an infection.
Have you asked your mother's medical team what they think is causing the low blood pressure and pain? Clearly they are taking it seriously (as they should) since they admitted your mother to the mICU.
Best wishes to your mother. Please keep us posted on how she is doing.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Auto transplant - low blood pressure, mucositis
I had mucositis, constant vomiting and low blood pressure during my hospital stay for the ASCT. The mucositis, which caused mouth, throat and GI pain, made it difficult to swallow anything, but I forced myself to drink water constantly and to order broth and tea for meals. The vomiting happened multiple times a day with taking anything orally and at other times, too. This continued even after I was discharged from the hospital on day +13. None of the medications helped with the vomiting. I refused Ativan after my 3rd dose because I experienced really negative hallucinations from it. They put a can of Ensure on my tray at each meal, but the taste was terrible and it came right back up after swallowing once. So, I never drank it after the first time. The dietician didn't seem to understand that if they gave me the number of servings of broth that I ordered at each meal that I would do better than trying to drink things that made me vomit (they would send me one serving of broth each meal, 1 cup, when I would order 2-3 servings. My blood pressure also dropped and so they stopped my blood pressure medication.
The vomiting lasted for about 6 weeks at its worst and mildly for a couple of months more. I still can't tolerate some foods such as oranges, pesto and anything with more than a tiny amount of basil. Other foods are a precaution because they move through my system extremely quickly. My blood pressure started to rise to the point where I needed to restart my medication for it about 3 months post ASCT. My primary put me back on me pre-transplant dose, but it dropped my BP too low. So, I requested a lower dose of it. I've been on that lower dose for 4 years with excellent control and occasionally low BP again. I have to be on top of it. Usually when it drops too low it's because I haven't been drinking enough fluids.
Ask your mother's healthcare team why they aren't giving her everything by IV if she isn't able to keep anything down. At the very least they should be hydrating her through her IV to help to bring her BP up, although there may be more going on than the fact that she is dehydrated.
There are so many things that are affected by the ASCT process that each person has a totally different experience with both inpatient and outpatient protocols. The fact that your mother's team admitted her and then moved her to mICU says that they are concerned about her current status. But, it is important that you keep tabs on what they are doing and ask questions of them if you don't understand.
Hopefully your mother will improve quickly and recovery will proceed without any other glitches. Be strong for your mother and for you,
Nancy in Phila
The vomiting lasted for about 6 weeks at its worst and mildly for a couple of months more. I still can't tolerate some foods such as oranges, pesto and anything with more than a tiny amount of basil. Other foods are a precaution because they move through my system extremely quickly. My blood pressure started to rise to the point where I needed to restart my medication for it about 3 months post ASCT. My primary put me back on me pre-transplant dose, but it dropped my BP too low. So, I requested a lower dose of it. I've been on that lower dose for 4 years with excellent control and occasionally low BP again. I have to be on top of it. Usually when it drops too low it's because I haven't been drinking enough fluids.
Ask your mother's healthcare team why they aren't giving her everything by IV if she isn't able to keep anything down. At the very least they should be hydrating her through her IV to help to bring her BP up, although there may be more going on than the fact that she is dehydrated.
There are so many things that are affected by the ASCT process that each person has a totally different experience with both inpatient and outpatient protocols. The fact that your mother's team admitted her and then moved her to mICU says that they are concerned about her current status. But, it is important that you keep tabs on what they are doing and ask questions of them if you don't understand.
Hopefully your mother will improve quickly and recovery will proceed without any other glitches. Be strong for your mother and for you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Auto transplant - low blood pressure, mucositis
Mom woke up around 8 pm with bad diarrhea. After that, she immediately started feeling better. She asked for water, soup and crackers! She made the comment that she wanted to eat an entire pizza. She was hungry!
All of her blood work came back negative for infection at this point.
She was given IV calcium, platelets and 2 bags of blood in addition to a steroid and antibiotics. She was on so much yesterday I lost track - at one point she had two poles going with her to the restroom!
I do know they had her on IV blood pressure medication for most of the morning yesterday but had taken her off by the afternoon. Her blood pressure was pretty stable most of the day but leaning towards hypertensive last night.
Today is +9 - I'm hoping today is going to be a better day! I will update her progress as I can.
Thank you all for your responses.
All of her blood work came back negative for infection at this point.
She was given IV calcium, platelets and 2 bags of blood in addition to a steroid and antibiotics. She was on so much yesterday I lost track - at one point she had two poles going with her to the restroom!
I do know they had her on IV blood pressure medication for most of the morning yesterday but had taken her off by the afternoon. Her blood pressure was pretty stable most of the day but leaning towards hypertensive last night.
Today is +9 - I'm hoping today is going to be a better day! I will update her progress as I can.
Thank you all for your responses.
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curiousG - Name: Crystal
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 61
Re: Auto transplant - low blood pressure, mucositis
Gday Curious G.
My SCT was hospital based. I can, however, relate to the very sore throat and finding it hard to eat / swallow. My advice to her would be to get some protein drinks and pour them on ice. Sip at them through a straw. The ice coldness helped my throat a lot. The first few swallows still hurt; however, the more coldness you can get down, the better your throat feels. The protein drinks gave my body much needed sustenance.
My blood pressure too was very low. I was just kept on a drip and monitored.
I was also offered some heavy duty pain killers for my throat.
Hope this helps
Vicki
My SCT was hospital based. I can, however, relate to the very sore throat and finding it hard to eat / swallow. My advice to her would be to get some protein drinks and pour them on ice. Sip at them through a straw. The ice coldness helped my throat a lot. The first few swallows still hurt; however, the more coldness you can get down, the better your throat feels. The protein drinks gave my body much needed sustenance.
My blood pressure too was very low. I was just kept on a drip and monitored.
I was also offered some heavy duty pain killers for my throat.
Hope this helps
Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Auto transplant - low blood pressure, mucositis
Unfortunately, today was not much better. Mom slept most of the day and did not eat or drink anything. She tried to drink some water this evening but couldn't keep it down. Everything immediately comes right back up.
Mom wants to drink / eat - she is so hungry, but it just will not stay down. It is almost like a spasm is triggered when liquid hits her esophagus. She is getting very frustrated and down.
Mom has been taking Zofran (ondansetron) for nausea, but I don't think it is working very well. I asked if we could try something else and so they switched to Phenergan (promethazine).
Despite everything, mom did get up and take a sponge bath, loved getting a warm shampoo cap and changed clothing. It made her feel so much better. Her hair is falling out more and more, but we can't shave it now - platelets are too low.
She is still in mICU but will get moved back to the BMT unit tomorrow. No blood pressure meds today!
Vicki - That is a great suggestion! We were also wondering how she would handle a popsicle. I plan on speaking to her doctor in the morning. Something has to change here.
Mom wants to drink / eat - she is so hungry, but it just will not stay down. It is almost like a spasm is triggered when liquid hits her esophagus. She is getting very frustrated and down.
Mom has been taking Zofran (ondansetron) for nausea, but I don't think it is working very well. I asked if we could try something else and so they switched to Phenergan (promethazine).
Despite everything, mom did get up and take a sponge bath, loved getting a warm shampoo cap and changed clothing. It made her feel so much better. Her hair is falling out more and more, but we can't shave it now - platelets are too low.
She is still in mICU but will get moved back to the BMT unit tomorrow. No blood pressure meds today!
Vicki - That is a great suggestion! We were also wondering how she would handle a popsicle. I plan on speaking to her doctor in the morning. Something has to change here.
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curiousG - Name: Crystal
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 61
Re: Auto transplant - low blood pressure, mucositis
Hi again curious g,
I'm not trying to be all Miss Negative, but your mum will most likely feel pretty crappy for a few more days / weeks yet. She now has the annoyance of an itchy head due to hair loss, and still waiting for her levels to start rising is frustrating. I'm sorry, but there is no way to sugar coat it.
Please assure her, though, that it will get better, though as she is going through it, she will think its a far fetched idea.
I imagine it is also hard for you to sit by relatively helpless to her plight. The best thing you can do is reassure her that things will improve, and encourage her to keep trying to eat and drink even though vomiting is still a problem. Food and drink will have little or no flavour for a month or two anyway.
It is hard to be anything but miserable in the stage she is in at the moment.
Hopefully she feels a little better soon.
Vic..
I'm not trying to be all Miss Negative, but your mum will most likely feel pretty crappy for a few more days / weeks yet. She now has the annoyance of an itchy head due to hair loss, and still waiting for her levels to start rising is frustrating. I'm sorry, but there is no way to sugar coat it.
Please assure her, though, that it will get better, though as she is going through it, she will think its a far fetched idea.
I imagine it is also hard for you to sit by relatively helpless to her plight. The best thing you can do is reassure her that things will improve, and encourage her to keep trying to eat and drink even though vomiting is still a problem. Food and drink will have little or no flavour for a month or two anyway.
It is hard to be anything but miserable in the stage she is in at the moment.
Hopefully she feels a little better soon.
Vic..
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
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