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Re: Larry's Stem Cell Transplant
Sorry for the complication Larry. Sounds like the staff handled it well. I hope you continue to recover well.
Re: Larry's Stem Cell Transplant
Hi Larry,
So sorry to hear about this complication. I hope you get through this quickly and with as little discomfort as possible.
So sorry to hear about this complication. I hope you get through this quickly and with as little discomfort as possible.
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: Larry's Stem Cell Transplant
Hi Everybody,
Thanks everyone for your well wishes!
Today is Day 12.
Thankfully, My recovery from C. diff is just about complete. The bad part lasted for about 2 days. I was released from the hospital today feeling very much better!
My WBC was 0.04, and is 0.34 today, going in the right direction perhaps? Still waiting for it to begin to rise. I assume that wont happen before day 14.
I will continue my outpatient visits tomorrow as planned.
Have a great day everyone!
Thanks everyone for your well wishes!
Today is Day 12.
Thankfully, My recovery from C. diff is just about complete. The bad part lasted for about 2 days. I was released from the hospital today feeling very much better!
My WBC was 0.04, and is 0.34 today, going in the right direction perhaps? Still waiting for it to begin to rise. I assume that wont happen before day 14.
I will continue my outpatient visits tomorrow as planned.
Have a great day everyone!
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Larmo222 - Name: Larry M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: February, 2014
- Age at diagnosis: 58
Re: Larry's Stem Cell Transplant
Hi Larry.
I didn't get C. diff when I had my stem cell transplant, but I got it about 3 months after the transplant and had it on and off for 6 months. Uggh. I was treated 4 times. There is a new superbug version of C. diff that is a lot like MRSA - it is called VRE and I remember it as meaning "Vancomycin Resistant".
I will tell you what I have learned about C. diff and how I have changed my lifestyle.
C. diff is a really bad bacteria - it is usually kept under control in a healthy gut by the good bacteria, but when you take antibiotics, they wipe out the good bacteria and leave you vulnerable.
I Iost 15 pounds over the 6 months I fought it - and that is a hard way to lose weight.
You need to wash your hands 10x a day - soap and water not antibacterial wipes.
Only thing that kills the spores is a strong solution of Clorox [bleach] - 9 parts water, 1 part Clorox. Wash floors, toilet, light switches, door handles etc. Anything you touch..
I threw away everything I could possibly throw away - robes, rugs, even underwear. The C. diff spores can live for up to 2 months and are invisible but can even get carried in the air.
Once you get healed up:
Cathy.
I didn't get C. diff when I had my stem cell transplant, but I got it about 3 months after the transplant and had it on and off for 6 months. Uggh. I was treated 4 times. There is a new superbug version of C. diff that is a lot like MRSA - it is called VRE and I remember it as meaning "Vancomycin Resistant".
I will tell you what I have learned about C. diff and how I have changed my lifestyle.
C. diff is a really bad bacteria - it is usually kept under control in a healthy gut by the good bacteria, but when you take antibiotics, they wipe out the good bacteria and leave you vulnerable.
I Iost 15 pounds over the 6 months I fought it - and that is a hard way to lose weight.
You need to wash your hands 10x a day - soap and water not antibacterial wipes.
Only thing that kills the spores is a strong solution of Clorox [bleach] - 9 parts water, 1 part Clorox. Wash floors, toilet, light switches, door handles etc. Anything you touch..
I threw away everything I could possibly throw away - robes, rugs, even underwear. The C. diff spores can live for up to 2 months and are invisible but can even get carried in the air.
Once you get healed up:
- You need to avoid hospitals (I know that is impossible right now) and nursing homes. When my daughter was in the hospital, I went in for a short visit but wore a mask and gloves
- I go see my mother, who is in nursing home, every week, but I do not go inside and do not touch her wheelchair or anything a patient would have touched recently. So, in the summer, we sit outside and, in the winter, I talk to her through her window while we are each on cell phones. If anyone goes to see her, they must shower and wash clothes before they come in my house or I hug them.
- I cannot take broad spectrum antibiotics anymore. When I had a kidney infection, they did a culture of my bacteria and had to test to see what antibiotic would kill it before they would give me any antibiotic. You will be very careful to maintain your good gut bacteria.
- I take 2 probiotics every day and a 3rd one when I have a flare up of diarrhea. I take Culturelle (Lactobacillus GG), Align or 4x probiotic from Sams Club ( Bifidobacterium, B Lactis, B longum, B Bifidum) and the last is expensive and is in fridge and I only take it if the other 2 don't stop the diarrhea. It is called Healthy Trinity and is made of 1. Lactobacillus acidophilus, 2. Bifidobacterium bifidum 3. Lactobacillus bulgaricus) . You can see that I am trying to take a variety of healthy bacteria to rebuild my gut flora.
Cathy.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Larry's Stem Cell Transplant
Hi Everyone,
Cathy,
Thank you for the heads up on you fight with C. diff. Being so sick, I hadn't had the chance to learn much more about it.
I am feeling better, but like you say, I need to realize the seriousness of this, and how it works. Obviously, this is just the beginning of my battle with C. diff ...
I am being treated with vancomycin, first via IV, and now orally, as it seems to be improving. I'm sure hoping it is not the resistant strain you speak of.
I want to start to take the probiotic ASAP.
Thanks again!
Cathy,
Thank you for the heads up on you fight with C. diff. Being so sick, I hadn't had the chance to learn much more about it.
I am feeling better, but like you say, I need to realize the seriousness of this, and how it works. Obviously, this is just the beginning of my battle with C. diff ...
I am being treated with vancomycin, first via IV, and now orally, as it seems to be improving. I'm sure hoping it is not the resistant strain you speak of.
I want to start to take the probiotic ASAP.
Thanks again!
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Larmo222 - Name: Larry M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: February, 2014
- Age at diagnosis: 58
Re: Larry's Stem Cell Transplant
Hi Larry.
Hope I didn't scare you to death about my experience (and chances are you do not have the resistant strain) - but I sure wish I had known how vulnerable we are to C. diff! If I would have known, I would not have gone into any hospitals (except where I was getting my stem cell transplant) or nursing homes until I was off all antibiotics and was taking probiotics. Honestly, I would have waited until a year after transplant.
I hope yours is cleared up and never comes back
Good luck! You should be going home soon?
Cathy
Hope I didn't scare you to death about my experience (and chances are you do not have the resistant strain) - but I sure wish I had known how vulnerable we are to C. diff! If I would have known, I would not have gone into any hospitals (except where I was getting my stem cell transplant) or nursing homes until I was off all antibiotics and was taking probiotics. Honestly, I would have waited until a year after transplant.
I hope yours is cleared up and never comes back
Good luck! You should be going home soon?
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Larry's Stem Cell Transplant
Hi Everyone,
Thanks Cathy!
It's Day 15, all symptoms of the C. diff are almost gone, but still completing the antibiotics for that.
My WBC count is 1.61 today, so on the rise!
I feel pretty good, still a bit weak overall, but improving each day.
If my counts are still good tomorrow, I will get a day off from commuting in to the hospital on Sunday! Woo hoo!
Take care everyone!
Larry
Thanks Cathy!
It's Day 15, all symptoms of the C. diff are almost gone, but still completing the antibiotics for that.
My WBC count is 1.61 today, so on the rise!
I feel pretty good, still a bit weak overall, but improving each day.
If my counts are still good tomorrow, I will get a day off from commuting in to the hospital on Sunday! Woo hoo!
Take care everyone!
Larry
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Larmo222 - Name: Larry M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: February, 2014
- Age at diagnosis: 58
Re: Larry's Stem Cell Transplant
Well done Larry, glad to hear the C. diff is 'behind you' and the white cell numbers are climbing.
My white cells did fine as long as I was still giving myself the Nivestim [Neupogen] jabs, but leveled off when I stopped, and platelets were slow getting going too. But after a few days it all started going to plan.
It sounds like you are doing well and the stem cells are kicking in. Keep up the good work mate and keep posting. Andy
My white cells did fine as long as I was still giving myself the Nivestim [Neupogen] jabs, but leveled off when I stopped, and platelets were slow getting going too. But after a few days it all started going to plan.
It sounds like you are doing well and the stem cells are kicking in. Keep up the good work mate and keep posting. Andy
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MattSchtick - Name: Andy
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Feb27 2014
- Age at diagnosis: 61
Re: Larry's Stem Cell Transplant
WBC 1.61, it's working! This is the moment when you get to start seeing the trends reverse in the positive direction for a change. Good to see you are on the right track. Keeps us informed on how you are doing.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Larry's Stem Cell Transplant
I think you are seeing the light at the end of the tunnel now! Better days are ahead for sure!
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