1st week on venetoclax - WOW, not what we expected...Part 4

Our stay at home was not meant to be...

Friday morning my husband noticed a red, raised sore area on his arm from where the IV had been - he complained about it and figured we would watch it for a bit, anything not to have to go back to the hospital.

Well, every hour it seemed to get a little bigger and by 8pm that evening he was running a low grade fever and here we go back to the hospital through Emergency. The emerg Dr. was very kind and diagnosed it as a staph infection - sweet mother does it ever end. He respected our knowledge and input on the CLL side especially when the blood work came back and WBC was 85 so we were up from Thursday's 75 which made sense because of the infection.

He sent us home around midnight (which was not bad total of 4hrs) with an ultrasound appointment for the next morning at 9am, for my his arm (needed to rule out a blood clot) and we had to go back to emerg and receive another IV antibiotics.

By the morning the infection had spread extensively - by 10:30am Saturday morning we received 2x the antibiotics. Long story short the emerg Dr. requested a medical consult and it took 6hrs for the consult to happen - we were beside ourselves. Naturally the infection just kept spreading and his arm became extremely bloated.

He was admitted around 9pm and has been receiving antibiotics every 8 hrs.

Because of the CLL and adding the compromised immune system - this time around our fear was that he would not die from CLL but because of an infection. Which in this world of ours is more common than we care for.

Death is something we certainly talk about however prior to the last 2 - 3 weeks we still believed it was quite a ways away. But at the moment we are both so emotionally fragile with this disease the thought of death has really surfaced and remained there.

However, we are managing it and we are very fortunate to be able to discuss our fears with each other which really helps.

This morning I woke up and the sunny was shinning very bright and it was a great reminder of how fortunate we are to be alive - I headed to the gym for my stress release and now off to see my love.

I will leave you now for awhile - but writing and posting our experience has really helped us and I hope we have not taken up to much of your time and life.

26 Replies

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  • NMMP,

    Wow what an emotional roller coaster. Glad you go to Gym to work out some stress. Hang in there, medics and the medicine must do the job and hopefully you both will celebrate improvement soon. Virtual hugs and prayers to you both

    Marc

  • 🙏🏻For you both.

  • What an emotional roller coaster. I'm sorry you had watch the infection get worse while you waited for the care you needed. Your husband is fortunate to have you as a knowledgeable advocate. I wish you lots of bright sunshine and a good work out!

  • Thanks DMary - your responses are so warm and heartfelt.

    When Mark was diagnosed and after the initial shock wore off which I think stayed with me for a good 3-4 months I made a decision that this was happening to "us" not just Mark and have tried very hard to understand our medical options and also be available to him when he needed the emotional support because it is so scary.

    It really helps that he is also my favourite person to spend time with - but don't get me wrong he still makes me crazy from a husband/partner perspective and I'm happy to make him crazy from a wife perspective.

    Take care

  • You are very fortunate to have each other!

  • Many prayers headed your way. Please don't think you are taking up our time with your reports. We are all hoping and praying for the best for you both and want to stay up to date on what is happening. We truly are all in this together.

  • Thank you

  • You must both be exhausted, both emotionally and physically.

    Please write your thoughts and feelings on here anytime. Sometimes the very act of getting our feelings down in writing is a stress release in itself.

    Best wishes

    Peggy

  • Peggy4 - could not agree with you more.

    I just finished reading my posts to our 17year old son (as this has been very difficult on him as well as our 18year old daughter, but she is currently away at university and his comment was that he is happy that I have an outlet to express my fear and sadness.

    Nice to hear that at 17 he "gets it".

    Take care

  • The care your husband received is questionable in my opinion. Staph infections from an IV is inexcusable in an immune compromised patient then sending him home?

    Is there any better place to go?

    Jeff

  • Hi Jeff,

    This was our 1st experience as an inpatient - we have been very fortunate during these 7 years that are experience has always been as an out-patient and the treatment has been outstanding.

    I'm sure that is why these past 2-3 weeks have been so emotional for us as we have been so fortunate all things considereding.

    If we move forward with BMT It will be in another hospital in Toronto - PMH.

    Nmmp

  • Glad to hear that. I hope you can get a CLL expert in Toronto to see him. Sounds like you need one right about now. 🙏🏻🙏🏻🙏🏻

    Jeff

  • I'm pretty amazed that your husband was sent home in the circumstances - I got an infection just after chemo treatment, and spent 9 days very ill and on IV antibiotics and saline as a result. I'd have serious questions to ask about the 'competence' of this part of his treatment.

    In the meantime - I hope he is now getting stronger and recovering. Keep us posted, and the very best of luck.

  • I agree - the staph infection - sending him before the infection was under control - and then having both of you wait 6 hours for a consult - all were inexcusable. Same question - is there a better place you can go? I would definitely file a complaint.

  • Thank you for the updates. I am speechless as to what to say to encourage you with the strength you and your husband are exhibiting in such a vulnerable, fragile time.

    Know you are in my prayers and minds of us all.

  • Sorry to hear this. IV antibiotics should really help hopefully.

    Our thoughts and prayers are with you.

  • So sorry to hear about this infection after all that has happened so far. I do hope that the medications will clear it quickly. I agree that your medical care has not been up to the standard that one would expect due to your husbands medical condition, and recommend that you have a meeting with the chief of emergency and the medical director of the hospital.

    It is my hope for you and your husband that you will be writing some good news in your Part 5 installment of this very dramatic week of starting Venetoclax treatment.

    Sandy Beaches

  • Your post brought tears to my eyes and I don't know what to say, other than to let you know I am sending you both my prayers and best wishes xx

  • Thank you Jm954 - there were many, many tears on Saturday as I sat there and watched him suffer - then I lost it at the nursing staff the way we were treated, literally ignored for over 3hrs, didn't even offer him a blanket- absolutely no compassion.

    I'm a firm believer in advocating for myself and Mark of course.

    Take care

  • Please keep us updated as you can, best wishes as always to you both xx

  • You are in my prayers. God bless you both.

  • Both you and your husband are in my prayers. I'm glad that you are relieving some stress at the gym. Please keep us posted. We are all pulling for both of you.

  • Sending prayers that all will be well very soon. :-)

  • I have been away from this site for a long time so coming back, I see that many now are on Venclexta and not in trials. I also see that hospitalization seems to be the order of the day for those posting here. That's a mixed blessing, depending on the hospital during the ramp up. I am on my sixth week of Venclexta off label, presecribed at Stanford. Their protocol is no hospitialization they say .. but I can imagine extreme cases of very high WBC or huge nodes where they follow the protocol on the med package. For me, it was labs day before a bump up or first pill and then labs the day after the ramp up. I am side effect free. I'm so sorry NMMP and her husband are having this nightmare. But I just wanted to share another view of Venclexta which for me has been amazing, starting with an ALC>140k and at normal levels and below by two weeks. No TLS .. but you must drink at least 56oz water per day.

    Hope NMMP's husband is doing better now.

  • You haven't written in a while, so I am hoping that your husband is recovering from the infection and is now feeling better, and still on his Venetoclax program. Thinking of you and hoping things are better soon.

  • Morning Mcpill,

    Thank you for checking in - Mark was finally discharged on the 17th and slowly recovering at home. We are still working on his dosage and not at the desired dosage of 400mg as yet.

    The staph infection has cleared however he is still taking antibiotics just in case. We really are trying to take it one day at a time - the past few weeks really kicked the "life" out of him. Our goal at the moment is trying to get him well rested and energy levels up again.

    We start another "adventure" next week meeting with the Allogeneic Stem Cell Transplant Team in Toronto.

    Take Care,

    NMMP

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