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    Tough Decisions Ahead

    Hi Everyone,

    I hope you are well. I just completed a telemedicine visit with my Neurologist. The appointment centered around the timing of my next Rituximab and my ability to work to work. I have been on medical leave for almost 5 months following a bad relapse, strabismus surgery and a 7 week long virus(tested negative for Covid). I am so torn over it is better to stay on time with my next Rituximab dose or delay it a month or two.

    After a very thoughtful discussion with him, I have decided to proceed with on time infusions, in early June. I have very active disease and have had some breakthrough relapses on Rituximab. The Rituximab has definitely slowed down the acquisition of new brain lesions but some new T spine lesions have developed. I am concerned that I am not making the right decision but armed with the information on hand, it seems best option. My relative risk to Covid won't change because I am B-Cell depleted already but it will extend the time of my immune suppression. What have others decided to do? I'd love to hear from you.

    As far as work goes, that is another story. I work as a respiratory therapist in a large hospital. I will be a front line provider to patients with Covid and those under investigation. The very nature of my job duties puts me at high risk for exposure. I was attempting to get a temporary position away from patient care but that doesn't seem likely, especially if the virus will be with us for 2 years. My neurologist prefers I work away from patients or not go into the hospital at all.

    Although there is some anecdotal evidence that most immune suppressed, MS patients are managing to survive Covid, my neurologist said some are not. He said the mortality rates may be no different than the general public, in the end but that there is individual risks that must be taken into consideration. For instance, my age and my history of heart problems, hypertension, asthma, and a blood disorder will all work to increase my personal risk.

    I am on the verge of having to consider leaving my job on long term disability, despite Covid but I am mentally, not quite there yet. The mind is willing but the body, not so much. I get through the days but it is getting harder and harder, physically. My cognitive issues are compounding the problem, too and this job leaves no margin for error. Despite this, I really need my health insurance and will push to get back to work in the next 3-4 weeks. Again, is this the right or wrong decision??

    I'm sorry if I am rambling but I guess I just need to hear from others that really understand these difficult decisions. I don't have anyone to run this by that appreciate the complexities of either the Covid issue or the work issue. Thanks so much!

    #2
    Hi polopuppy,

    You do have some tough choices to make. I am sorry you are in this position and the option to work away from patients isn't viable.

    Glad you are continuing with your DMT schedule. That has to be a priority. I guess other meds that wouldn't affect recovery from the virus are not an option for you?

    Ideally, if you could take LTD for a year or two, obtain cobra or get other health insurance, then go back when the covid-19 scare is over (hopefully), it would eliminate the risks your doctor is concerned about.

    But the above is not usually financially viable for most people. It is also open-ended, hoping to find a vaccine or treatment and dependent on the length of time your employer covers LTD.

    You also have to consider how the added stress of working in that type of environment may affect you. Are you confident that your hospital has enough protective equipment for you? Does your employer know about your diagnosis? If so, have you discussed your concerns about the virus with them? If you haven't disclosed, and you are faced with leaving, is it worth disclosing to have this conversation, a last ditch attempt to see what they can do? Then again, if you disclose, they may be risk averse anyway.

    As for the general question on when to stop, it is a tough question. I wasn't ready mentally, but physically, I didn't have a choice. I just couldn't recover enough to work 5 days consistently. I had no life outside of work - nights and weekends were dedicated to rest. The decision caused lot of anxiety. Once I stopped, it was a rough few years until I adjusted. Now, I am so thankful I did. I miss work and the people, but it has given me the opportunity for a fuller life.

    I hope you continue your recovery from your relapse. Please keep us in the loop.
    Last edited by pennstater; 05-12-2020, 02:25 PM.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Girl.

      Originally posted by polopuppy View Post
      Hi Everyone,

      I hope you are well. I just completed a telemedicine visit with my Neurologist. The appointment centered around the timing of my next Rituximab and my ability to work to work. I have been on medical leave for almost 5 months following a bad relapse, strabismus surgery and a 7 week long virus(tested negative for Covid). I am so torn over it is better to stay on time with my next Rituximab dose or delay it a month or two.

      After a very thoughtful discussion with him, I have decided to proceed with on time infusions, in early June. I have very active disease and have had some breakthrough relapses on Rituximab. The Rituximab has definitely slowed down the acquisition of new brain lesions but some new T spine lesions have developed. I am concerned that I am not making the right decision but armed with the information on hand, it seems best option. My relative risk to Covid won't change because I am B-Cell depleted already but it will extend the time of my immune suppression. What have others decided to do? I'd love to hear from you.

      As far as work goes, that is another story. I work as a respiratory therapist in a large hospital. I will be a front line provider to patients with Covid and those under investigation. The very nature of my job duties puts me at high risk for exposure. I was attempting to get a temporary position away from patient care but that doesn't seem likely, especially if the virus will be with us for 2 years. My neurologist prefers I work away from patients or not go into the hospital at all.

      Although there is some anecdotal evidence that most immune suppressed, MS patients are managing to survive Covid, my neurologist said some are not. He said the mortality rates may be no different than the general public, in the end but that there is individual risks that must be taken into consideration. For instance, my age and my history of heart problems, hypertension, asthma, and a blood disorder will all work to increase my personal risk.

      I am on the verge of having to consider leaving my job on long term disability, despite Covid but I am mentally, not quite there yet. The mind is willing but the body, not so much. I get through the days but it is getting harder and harder, physically. My cognitive issues are compounding the problem, too and this job leaves no margin for error. Despite this, I really need my health insurance and will push to get back to work in the next 3-4 weeks. Again, is this the right or wrong decision??

      I'm sorry if I am rambling but I guess I just need to hear from others that really understand these difficult decisions. I don't have anyone to run this by that appreciate the complexities of either the Covid issue or the work issue. Thanks so much!
      I work as an ultrasound technologist at a busy hospital and was faced with a similar decision as you. We have to check Covid patients for blood clots every day, as well as scanning to make sure other organs are working properly. We get one new n95 mask every 5 patients. I’d feel a lot better about it if I knew that new PPE would be there every time I saw a patient, but we work with what we have. *sigh* MS is my only pre existing condition but it seems like that doesn’t always matter with Covid and who knows with the Tysabri I take.

      I finally ended up coming out to my boss and the director about having MS and they were very understanding/accommodating so far. That said, I work with outpatients and inpatients so it’s been easier to give me time off since our outpatient schedule has been reduced. I would think a respiratory therapist would be much busier with a disease like this but maybe you guys have lessened outpatients as well so you working less may not be as much of a big deal...?

      At any rate, please hang in there and know that people on this site are rooting for you. Such difficult decisions we have to make when we love our patients and our jobs.
      "It matters not how strait the gate,
      How charged with punishments the scroll,
      I am the master of my fate,
      I am the captain of my soul." ˜William Ernest Henley

      Comment


        #4
        Hi Kathy,

        Thank you so much for responding. I was getting worried that no one was going to so I was happy to see yours.

        Most of the other DMT's are not considered a good treatment option for me. Ocrevus is one other choice but not much different than Rituximab. I am JC positive and my titers are high so no Tysabri for me. In my case, they are treating two conditions with the same immune suppressant so not all MS DMT's work for Neuro-Behcet's Disease. Rather complicated, it appears.

        I know my employer does offer some sort of long term disability but I have not been able to find out much about it. I'm also afraid to let them in on the fact that I may be considering it. My director knows I have some health issues but I don't think she knows the details, although many of my co-workers do. I agree that the open endedness of the Covid situation makes some of these decisions much harder. Being on Cobra would be $1000 a month and that would be a bit of a stretch financially but not impossible. I would still be subject to deductibles and out of pocket expenses. It scares me, to be honest. November will be 35th year on the job and as silly as it sounds, I would like to make that milestone. If I was closer to retirement age, the decision would be easier but I am in my early 50's.


        There is no doubt that my job is very stressful, very physical and takes a lot of concentration. On top of it, we rarely get our breaks and that makes it difficult to manage minimal self care. Even simple things like using the restroom, getting a drink or taking a medication on time. A sick kiddo always take precedence. I am training new staff or students all the time, while trying to complete a full assignment. I love to teach but it is exhausting!

        I really appreciate your experience with leaving your job and it gives me more to think about. I guess I need to educate myself on long term disability and SSDI so I can make an more informed decision.

        Thanks again!

        Comment


          #5
          Hi DPL2014,

          Oh, my. You are in a very similar situation and I'm sorry the lack of PPE's continues to be an issue. I haven't been at work since Covid arrived on the scene but I know we have had PPE shortages and that N95 masks are being kept under lock. My neurologist said that if I went back that I will need to have full PPE on all the time, no exceptions.

          I agree that anyone is at risk, completely healthy or not. Repeated exposure to the virus does seem to worsen the disease course which I guess why so many healthcare workers are dying. It is tragic and absolutely frightening.

          My director knows I have medical issues but not what they are exactly. My employer is not the most supportive to sick employees and I have had co-workers terminated while on an approved leave. I can't say I trust them very much. Unfortunately, I work in a busy NICU and we don't have anything to do with outpatients. We are a pediatric hospital so our census did not change much compared to what it was before Covid, unlike adult hospitals. Babies are still being born, kids are still hurting themselves, having asthma attacks, etc. We are quite busy and have been since last fall.

          I hope everything goes well for you and that you will be able to remain at home. Thank you so much for reaching out. I'm rooting for you and your colleagues, too. I agree that we make a lot of sacrifices for the benefit of the patients we love to care for. I miss my NICU babies and my wonderful co-workers. Maybe I will make it back. My fingers are crossed.

          Comment


            #6
            Dear polopuppy and DPL2014,

            I really don't have any advice for both of you, but I wanted to thank you for all your efforts during this time. Covid is scary enough for all of us, but to have MS and work on the front lines takes a special kind of person. You are making sacrifices to be a part of our health community and I have upmost respect for you both. You are our heroes and are indeed special.

            Please take care of yourselves.
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

            Comment


              #7
              Originally posted by Seasha View Post
              Dear polopuppy and DPL2014,

              I really don't have any advice for both of you, but I wanted to thank you for all your efforts during this time. Covid is scary enough for all of us, but to have MS and work on the front lines takes a special kind of person. You are making sacrifices to be a part of our health community and I have upmost respect for you both. You are our heroes and are indeed special.

              Please take care of yourselves.
              Ditto what Seasha said! I have tremendous admiration for you both. Stay well.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                Originally posted by polopuppy View Post

                After a very thoughtful discussion with him, I have decided to proceed with on time infusions, in early June...
                Originally posted by polopuppy View Post
                As far as work goes, that is another story... I will be a front line provider to patients with Covid and those under investigation. The very nature of my job duties puts me at high risk for exposure.

                I was attempting to get a temporary position away from patient care but that doesn't seem likely, especially if the virus will be with us for 2 years. My neurologist prefers I work away from patients or not go into the hospital at all..
                I am on the verge of having to consider leaving my job on long term disability,
                I don't have any advice, or any experience with needing to make similar decisions.

                Just know that I'm thinking of you during your decision making process. I pray that you'll make decisions that feel right for you and that you'll have a peace about them. 🙏
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                .

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment


                  #9
                  Thank you Seasha and Kathy for your very kind words but I do feel a bit of a fraud since I haven't worked since Covid hit. DPL2014, on the other hand has been on the front line working with these patients. This is, certainly, the biggest threat to healthcare workers in the 35 years that I have been doing this job. H1N1 was terrible for children and we were horribly busy the year it came out it was nothing like Covid. Every time I hear of a medical provider that has died because they were not provided with appropriate PPE, it break my heart and fills me with guilt. I have given so many years of my life to that hospital but I am not sure I am willing to give them my life.

                  Comment


                    #10
                    Hi Faith,

                    Thank you for your supportive post. I, too, hope for peace and clarity while I wade through the decision process. My OT and PT did reach out to the social worker, in the MS clinic, on my behalf. I will have an appointment with her next week and I think that will be a big help. All the best.

                    Comment


                      #11
                      Originally posted by polopuppy View Post
                      Thank you Seasha and Kathy for your very kind words but I do feel a bit of a fraud since I haven't worked since Covid hit.
                      You are definitely not a fraud. Day in and day out in your career, you worked with patients, some contagious, some not. It takes courage to do that. And just the fact you are considering going back shows you still have that courage. Lots of luck with your appointment. I hope you get out of it what you need.
                      Kathy
                      DX 01/06, currently on Tysabri

                      Comment


                        #12
                        Originally posted by pennstater View Post
                        You are definitely not a fraud. Day in and day out in your career, you worked with patients, some contagious, some not. It takes courage to do that. And just the fact you are considering going back shows you still have that courage. Lots of luck with your appointment. I hope you get out of it what you need.
                        I agree!! I have a newfound appreciation of nurses (and doctors) both before and during this pandemic. I have always appreciated them, but now even more so. Add your name to the courageous and dedicated healers, polopuppy
                        1st sx '89 Dx '99 w/RRMS - SP since 2010
                        Administrator Message Boards/Moderator

                        Comment


                          #13
                          Your situation is very sad and you are not alone. In terms of what is best for you (and maybe the company) is for you to go on disability and take care of yourself.

                          You are trapped because of health insurance.

                          We live in a democracy. Exercise your right to speak out about your situation. And if you aren’t interested in the political arena there is still a tiny thing you can do in completely privacy. Vote.

                          Need to add one thing. If you qualify for SSDI you can get Medicare.
                          Last edited by KoKo; 05-18-2020, 07:13 PM. Reason: poster request to add last sentence

                          Comment


                            #14
                            Hi Everyone,

                            I realized that I got caught up in the craziness of my life and never got a chance to update my post. I did end up going back to work but in an administrative role, away from the bedside. It is a temporary position and I could be asked to return to patient care at any time. I was only back for 2 days when I became quite sick with a virus! I was placed on leave while my Covid test was pending. It came back negative and I was allowed to return a couple days later.

                            I have been back for 6 weeks and it has been tough. Working at a desk, while easier physically than my regular position, has its own unique set of challenges. Sitting for 8 hours is rough and the eye strain is the pits. Even worse, cognitively, I have had to learn many new things on the computer. I suck at Word and Excel because I've never had to use them much and I'm way too old to have learned them in college.

                            I'm very scared I will contract Covid from a co-worker despite being extra careful. My Rituximab was re-dosed a couple weeks ago so I'm definitely B-cell depleted. I will carry on and hope I stay well in the meantime. May all of you stay happy and more importantly, healthy. Thank you.

                            Comment

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