Setback or par for the course

Sal0101
Sal0101 Member Posts: 136 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Well it was nice being home for a few days, but Tuesday evening I started running a fever.  Needless to say I'm inpatient again.  They allowed me to stay local instead of driving 90 minutes to the hospital where I had the transplant.  My transplant team is staying in close contact with my local oncologist which is nice.  So far all tests, cultures, etc. have come back negative.  This has really bummed me out.  I wanted to breeze through this with no setbacks.

Sharon

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #2
    Similiar

    Sharon,

    I've never had a SCT, but my first weekend after my first r-abvd, I got  a fever and was admitted on a Fridady night for the whole weekend.  I kept telling the docs that my WBC had probably dropped, but they tested me for every bacterium know to science for the whole time, plus continuous bags of antibiotic as a "precaution."   NO infections ever found.

    I got Red Man Syndrom (looked like a beet) from the antibiotics,  and the whole experience was miserable and largely unnecessary.

    I know SCT is way more serious, and all symptoms have to be addressed immediatley.  I hope you're home soon.

    max

  • paella
    paella Member Posts: 81
    edited October 2016 #3
    Thinking of you

     

    Yeah, not what you wanted but aren’t we lucky to have a good place in which to BE an INpatient?!  Sounds like your team is on top of everything and it’s likely you’ll be home before you know it.  The SCT and all that precedes it takes so much out of you…as you don’t need to be told.  Just hang in there and re-read Po’s “Life Shrinks Down” post – it’s a goodun’.

     

    Paella

     

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited October 2016 #4
    Neutropenia

    You are paralleling my transplant exactly. When they kill your marrow, your blood counts take a nosedive. At some point, neutropenia sets in and the body's response is quite often a fever. As long as there is no indication of infection, I would let the doctor worry about it.

  • Sal0101
    Sal0101 Member Posts: 136 Member
    #5
    Home Again

    Finally home again! Hopefully longer than 2 days This time. They took me off of all antibiotics because everything came back negative.  They put me on 2 days of steroids which kicked the fever right out.  They did not send me home with steroids so of course that makes me a bit nervous, but I have to trust my team!  

    Thanks everyone!  Your motivation keeps me going! 

    Sharon

     

  • paella
    paella Member Posts: 81
    edited October 2016 #6
    Sharon...

    How're you doing?  Paella

  • Sal0101
    Sal0101 Member Posts: 136 Member
    edited October 2016 #7
    Hanging in there

    I'm still pretty tired, and often dizzy and out of breath.  I feel like I have a bit of a cold, but no fever so that is good!  Labs on Monday, which of course will tell me if I'm low and might needs a transfusion.  

    I really expected to have a bit more energy by now.  I'm on about day 27, post transplant.  I do a few things around the house, take a short (very short) walk outside and that seems to be enough for me. Even a shower seems to be a chore! 

    How long has it taken others to build up stamina?  Am I expecting to much? 

    Sharon

  • paella
    paella Member Posts: 81
    #8
    Sal0101 said:

    Hanging in there

    I'm still pretty tired, and often dizzy and out of breath.  I feel like I have a bit of a cold, but no fever so that is good!  Labs on Monday, which of course will tell me if I'm low and might needs a transfusion.  

    I really expected to have a bit more energy by now.  I'm on about day 27, post transplant.  I do a few things around the house, take a short (very short) walk outside and that seems to be enough for me. Even a shower seems to be a chore! 

    How long has it taken others to build up stamina?  Am I expecting to much? 

    Sharon

    BE PATIENT

    3 months post-zero day, I wrote the following:  "Still haven’t adjusted to (nor totally accepted) the long duration of this SCT recovery.  Am simply taking it a day at a time and trying to accept reality for reality.  Other than bone-deep fatigue (which happens now maybe only 3 days per week) no problems with anything else.  Moving and exercising help emotionally AND in re-building my exceedingly deconditioned self."  My doc told me not to be so impatient.  Today I'm nearly 4 months post-zero and finally feeling much less exhausted, with stamina improving.  You'll be fine!!!

    Paella

     

     

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited October 2016 #9
    Listen to your body

    Each case is completely different, even though the procedure may have been the same. Is your engraftment complete? If not, then your immune system and blood counts might be low. When they are low, it is time to ease off, as your energy will naturally be low and you do not want a cold or infection at this stage. My first cold in eight years lasted 6 weeks! One which followed that hung around for about one month. There was an epic battle going on in my immunosuppressed body. Nothing to do but wait it out.

     It helps if you are retired or have the retiree mindset, as we are truly out of the game for potentially a considerable amount of time. I know of one fellow on another forum who seemed to bounce right back. I hate him! 15 months out, I am still weaning off of prednisone and sleep 12-14 hours daily. This will occur until my adrenal glands wake up from their year long sleep. I dare not press the issue, as I have quite enough to deal with about now.

    Since we are all members of lymphaholics anonymous, it is one day at a time.

     

     

  • po18guy
    po18guy Member Posts: 1,505 Member
    #10
    So....?

    How is everytihng? I hope that the roller coaster has only reasonable ups and downs. But, ups and downs there must be. As it is with life, so it is with transplants. A good operative phrase is: "Challenges make champions." So, are you a contender? Hope so.

  • Unknown
    Unknown
    #11
    po18guy said:

    Listen to your body

    Each case is completely different, even though the procedure may have been the same. Is your engraftment complete? If not, then your immune system and blood counts might be low. When they are low, it is time to ease off, as your energy will naturally be low and you do not want a cold or infection at this stage. My first cold in eight years lasted 6 weeks! One which followed that hung around for about one month. There was an epic battle going on in my immunosuppressed body. Nothing to do but wait it out.

     It helps if you are retired or have the retiree mindset, as we are truly out of the game for potentially a considerable amount of time. I know of one fellow on another forum who seemed to bounce right back. I hate him! 15 months out, I am still weaning off of prednisone and sleep 12-14 hours daily. This will occur until my adrenal glands wake up from their year long sleep. I dare not press the issue, as I have quite enough to deal with about now.

    Since we are all members of lymphaholics anonymous, it is one day at a time.

     

     

    Prednisone

    hate that prednisone!

  • Sal0101
    Sal0101 Member Posts: 136 Member
    edited November 2016 #12
    finally feeling better

    I'm finally feeling like I'm gaining back my strength and stamina, and I'm not nearly as tired as 2 weeks ago. The stairs aren't so daunting and I can make it through the entire grocery store!  I still get out of breath pretty easy though. I'm sure part of that is just my body saying "hey, you're pretty out of shape as compared to a year ago".  I did get a good cold and am still coughing, but no fever so it just has to finish running its course.  

    My blood counts were all on the rise at my last appointment!  My oncologist was very pleased. WBC was 5, RBC was still low as well as platelets, etc, but on the rise compared to previous blood counts!  Next appt. isn't until the 21st. Seems like a long time away!

    BTW! I hated that prednisone too! or should I say AFTER I finished taking it!

  • paella
    paella Member Posts: 81
    #13
    Sal0101 said:

    finally feeling better

    I'm finally feeling like I'm gaining back my strength and stamina, and I'm not nearly as tired as 2 weeks ago. The stairs aren't so daunting and I can make it through the entire grocery store!  I still get out of breath pretty easy though. I'm sure part of that is just my body saying "hey, you're pretty out of shape as compared to a year ago".  I did get a good cold and am still coughing, but no fever so it just has to finish running its course.  

    My blood counts were all on the rise at my last appointment!  My oncologist was very pleased. WBC was 5, RBC was still low as well as platelets, etc, but on the rise compared to previous blood counts!  Next appt. isn't until the 21st. Seems like a long time away!

    BTW! I hated that prednisone too! or should I say AFTER I finished taking it!

    Good!  Good!  Good!  It can

    Good!  Good!  Good!  It can seem daunting at times, but before long you'll barely remember exactly how that bone-deep exhaustion felt.  So glad to hear that you're doing well. 

    All the best!! - Paella

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited November 2016 #14
    We can all be thankful for your update!

    There will be ups and downs, but the trend is up. Consider: a single generation before us would not have made it this far. We have much to be thankful for. 

  • Rocquie
    Rocquie Member Posts: 869 Member
    #15
    Sharon

    I hope you have continued to improve and get stronger.

    Hugs,

    Rocquie

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