The seas probably have been rough for you today and yesterday, Denise, so I just wanted to let you know that I've been thinking of you, as I am sure many others here have been also. Despite the rougher seas, I hope that you were feeling well enough to be able to enjoy some Mothers Day time with your family.
Wishing you all the best!
Forums
Re: My autologous stem cell transplant at Jefferson
Happy Birthday, My Friend,
Hope you are feeling better today. Enjoy each ray of sunshine and let it guide your path for the day. Things will be brighter for you very soon.
Pat
Hope you are feeling better today. Enjoy each ray of sunshine and let it guide your path for the day. Things will be brighter for you very soon.
Pat
Re: My autologous stem cell transplant at Jefferson
I love the way you said it: "My stem cells were back home". Another moment of joy is days later when you have a little rash that tells you they have engrafted!
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: My autologous stem cell transplant at Jefferson
Hi Denise,
Thank you for sharing the journey of your stem cell transplant with us. I have already learned so much about multiple myeloma from this forum and your posts. I hope that everything is going well and that you are feeling stronger with each passing day. I am looking forward to your next update.
Lots of love,
Cindy
Thank you for sharing the journey of your stem cell transplant with us. I have already learned so much about multiple myeloma from this forum and your posts. I hope that everything is going well and that you are feeling stronger with each passing day. I am looking forward to your next update.
Lots of love,
Cindy
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Cindy Smith
Re: My autologous stem cell transplant at Jefferson
Hi Everyone,
I feel like I fell onto the dark side of the moon, from the old space movies where radio silence is deafening. Now learning that the combination of effects that were debilitating me are lumped into the "engraftment syndrome." My name for them is really the seven plagues ...
<smiles>
Well, the good news is that engraftment is working. My numbers bottomed out as expected, and my energy level went to zero. Now they are climbing!
So, along the way, let me tell you a story. It is called, "Ode to the Commode". The innocent gray commode appeared in my room after I made a dash for the bathroom, ALMOST not realizing about all the wires that are now a part of me. Haughtily, I thought, I would not be using that. So, every day it sat there, waiting. And every day I was able to walk by ... UNTIL I learned the true meaning of uncontrollable diarrhea. Uncontrolled means that the faucet is always open until not. No warnings. Now, the commode and I are best buds. All is forgiven.
OK. So, here is where things got dicey. So, I ended Day 3 with the growth factor shot, these would continue until Day 10. I also developed the fevers. The highest I remember was 104.9 F (40.5 C), of course in the middle of the night. So,I slept on ice bags and received more meds. The tree of bags was becoming quite festive.
So, between the fevers, the GI issues, lack of appetite (or appetizing food), the enormous amounts of fluids going into me, my face was resembling a Michelin tire cartoon, LOL!I Developed a body rash – thankfully, not itchy!, And still the diarrhea. But throughout all of this, my care team was working proactively every step of the way to try and keep me ahead of the curve ball. I got a hair cut today. Most of it was falling out already. The very kind technician took care of my muttly mopp in no time. So, between that, the shower (glorious showers), I was ready for a nap. I sent my sweet husband home. Snuggled up, and ready for more wires ... tests ... and, yes, recovery.
I will fill in the blanks as I have more posting time – the automatic blood pressure cuff is now on my right side, and the pulse ox is stuck on my pinky. Totally throwing off any touch typing skills.
Thank you for all of your support. I felt as prepared for this as possible, and yet, as each new thing would develop, it became overwhelming. Without the constant reassurance from my care team and the support of this community, it would be a lonely battle.
Thank you. From the HOPEFULLY half-way point.
I feel like I fell onto the dark side of the moon, from the old space movies where radio silence is deafening. Now learning that the combination of effects that were debilitating me are lumped into the "engraftment syndrome." My name for them is really the seven plagues ...
<smiles>
Well, the good news is that engraftment is working. My numbers bottomed out as expected, and my energy level went to zero. Now they are climbing!
So, along the way, let me tell you a story. It is called, "Ode to the Commode". The innocent gray commode appeared in my room after I made a dash for the bathroom, ALMOST not realizing about all the wires that are now a part of me. Haughtily, I thought, I would not be using that. So, every day it sat there, waiting. And every day I was able to walk by ... UNTIL I learned the true meaning of uncontrollable diarrhea. Uncontrolled means that the faucet is always open until not. No warnings. Now, the commode and I are best buds. All is forgiven.
OK. So, here is where things got dicey. So, I ended Day 3 with the growth factor shot, these would continue until Day 10. I also developed the fevers. The highest I remember was 104.9 F (40.5 C), of course in the middle of the night. So,I slept on ice bags and received more meds. The tree of bags was becoming quite festive.
So, between the fevers, the GI issues, lack of appetite (or appetizing food), the enormous amounts of fluids going into me, my face was resembling a Michelin tire cartoon, LOL!I Developed a body rash – thankfully, not itchy!, And still the diarrhea. But throughout all of this, my care team was working proactively every step of the way to try and keep me ahead of the curve ball. I got a hair cut today. Most of it was falling out already. The very kind technician took care of my muttly mopp in no time. So, between that, the shower (glorious showers), I was ready for a nap. I sent my sweet husband home. Snuggled up, and ready for more wires ... tests ... and, yes, recovery.
I will fill in the blanks as I have more posting time – the automatic blood pressure cuff is now on my right side, and the pulse ox is stuck on my pinky. Totally throwing off any touch typing skills.
Thank you for all of your support. I felt as prepared for this as possible, and yet, as each new thing would develop, it became overwhelming. Without the constant reassurance from my care team and the support of this community, it would be a lonely battle.
Thank you. From the HOPEFULLY half-way point.
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computerteacher - Name: Computer Teacher
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November/December 2014
- Age at diagnosis: 58
Re: My autologous stem cell transplant at Jefferson
You are on your way to improving! The care team at Jefferson was wonderful. The nurses were positive and happy, providing and explaining for every need, even for me. I live in Cape May, so I stayed in my daughter's apartment and was able to be at the hospital every day for long periods of time.
Do not pressure yourself to push thru the fatigue. It will last for awhile even after you go home. Pace yourself. Naps are your friend.
Do not pressure yourself to push thru the fatigue. It will last for awhile even after you go home. Pace yourself. Naps are your friend.
Re: My autologous stem cell transplant at Jefferson
Hello, Denise
Supporting my wife in February, she had engraftment syndrome also. Unexplained fevers, rashes, scrambling half the hospital to figure out what to do. Once they ruled out everything else, and did 48 hours of prednisolone, then it was quickly down hill from there. Hopefully, by now, you are on the down hill as well. Best of luck and keep us updated. Regards,
Supporting my wife in February, she had engraftment syndrome also. Unexplained fevers, rashes, scrambling half the hospital to figure out what to do. Once they ruled out everything else, and did 48 hours of prednisolone, then it was quickly down hill from there. Hopefully, by now, you are on the down hill as well. Best of luck and keep us updated. Regards,
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JPC - Name: JPC
Re: My autologous stem cell transplant at Jefferson
Thank you JPC! Today I had another echo heart exam, ultrasound exam of the left arm (where the PICC line is), and skin biopsy of the tummy area (well, what's a sample between the Velcade spots and growth spots, and of course, for me, stretch marks? LOL!). I believe that I am on the downhill, but my skiing skills are NIL, so, at this point, I would just like to glide down with no more huge bumps. I am looking for the rash to go away and the mega-pounds of water I am still holding to go away. (See how important it was for me to befriend the commode?)
I received more platelets today, but other than that, I am "untethered" (well, I have the portable heart monitor on).
I can't thank this community enough for support, and my care team who simply drop everything for me to get me through this. More later ...
I received more platelets today, but other than that, I am "untethered" (well, I have the portable heart monitor on).
I can't thank this community enough for support, and my care team who simply drop everything for me to get me through this. More later ...
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computerteacher - Name: Computer Teacher
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November/December 2014
- Age at diagnosis: 58
Re: My autologous stem cell transplant at Jefferson
Hi Computerteacher,
I have been watching your posts daily waiting to hear from you. I am happy to hear about your successful engraftment. I love reading your posts. You have such a great attitude which can only help with your recovery and a successful transplant. I look forward to your next entry.
I think about you each time I log into this site and wish you the very best in your recovery.
Rhonda
I have been watching your posts daily waiting to hear from you. I am happy to hear about your successful engraftment. I love reading your posts. You have such a great attitude which can only help with your recovery and a successful transplant. I look forward to your next entry.
I think about you each time I log into this site and wish you the very best in your recovery.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: My autologous stem cell transplant at Jefferson
Great to hear from you Denise! Your time on the "dark side of the moon" had me worried for a bit. Glad to hear that you're starting to feel better, and I really hope the worst is behind you so that you and your commode can agree to an amicable divorce!
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JimNY
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