Subscribe to this Thread…
Results 1 to 7 of 7

Thread: Some advice

  1. #1
    Junior Member
    Join Date
    Jul 2014
    Posts
    1

    Some advice

    I am new here, 38 years old and diagnosed with stage 4 three months ago. Now it has progressed to stage 5. I have kept my boss updated and he is very understanding. The problem is that my job is pretty much about being billable and to be billable I have to be in the field, out of the office. My company provides short term and long term disability and I was advised to go on it. My doctor suggested home PD. Would I able to work in the field, alone, in a semi strenuous capacity after I start Pd?

  2. #2
    Senior Member
    Join Date
    Jun 2012
    Posts
    249
    Hello Schoeny78,

    I can speak to capacity on home hemodialysis (HHD) as a patient for that past 2 years. I'm more than 20 years your senior and continued to work during HHD training (1/4 days of vacation - PM for 5 weeks). After going home, I gradually expanded my out of office/field capabilities and within a few months was traveling for business on short notice for several nights, while staying on my 5X weekly HHD treatment plan.

    When I had to be away for more than 2-3 days, I secured late afternoon/evening treatments at DaVita clinics close to my places of business. These were arranged in advance by my HHD clinic social worker. I couldn't and still can support any short notice travel that extends beyond 2-3 days, nor can I travel internationally under nearly all circumstances owed to the absence of foreign DaVita clinics where I could treat.

    I have also traveled via car with my NxStage System1 Cycler for vacation and business trips of greater than 3 days, but must bring my care partner/spouse to assist me for treatments. The equipment is transportable via air, train, ship and bus, but I have not yet traveled with it via those modes of transportation.

    In preparation for all of this, I had an AV Fistula surgically placed some 9 months before beginning HHD training. I did experience infiltration issues during the first two weeks of training and resolved this with a fistulogram. I was Stage V at the time I began HHD training with creatinine in the 6's and GFR of 9, but I had no physical symptoms of kidney failure nor did I have any work or play life restrictions. That circumstance has continued to this day.

    I have had no loss of capability or energy as a result of my 5X weekly treatments, I simply have a 20 per week part time job to perform that are the combination of both short daily and long duration nocturnal home hemodialysis treatments to perform.

  3. #3
    Senior Member
    Join Date
    Apr 2012
    Posts
    285
    My take on your situation is that you probably should NOT inform your boss of your condition until dialysis becomes an issue. Although it is illegal to discriminate against a person due to their medical problems, believe me, if they want to, they will find a way. I'm in the situation right now of having to start over in a position that is really much more demanding physically than I think is prudent for a person on the threshold of stage 5 kidney disease. While being considered for a transplant about 2.5 years ago, I informed my previous employer (as the transplant team REQUIRES of potential transplant recipients), which started my downfall. From that moment onward, I was completely shut-out from any potential to advance, kept being given more and more menial jobs, started having my hours reduced, etc. Now, with a GFR of less than 10, I was fired for no good reason, and had to take another job, one which keeps me on my feet nearly all day long.

    Long story short-don't tell your employer sh!t, unless you WANT to be unemployed. Surviving on disability is a crappy way to live.

  4. #4
    Senior Member
    Join Date
    Jun 2012
    Posts
    249
    Regrettably, there are more employers out there that will discriminate against you for your medical disability than are those that will not. Many realize that the costs for an employee fighting a discrimination battle will generally exceed their means, especially while unemployed and thus are able to get away with it. I've been fortunate to work for a company ($5B) who is large enough and successful enough to be able to afford to practice sound human relations.

    When I was reaching Stage V, I notified the company's Health Services in a manner that fully assured my HIPPA rights, and was informed that I could not be discriminated against. Though I didn't require any FMLA or short term disability to support my HHD training (I took 1/4 days of vacation for 5 of 7 weeks), I was told that the benefits were there if I needed them. Only Health Sevices and my manager were aware of my condition/restrictions, and my manager made sure that I was kept off any urgent business travel assignments for that nearly 2 month period.

    After completing the HHD training, I was quickly able to ramp up to support short notice multi-night business travel, provided I could stay on my 5X weekly treatment schedule. On instances where I had to get on a plane that evening with only a morning's notice, my manager permitted me to go home and work from there while getting my treatment in, pack for the trip, and head to the airport. The logistics needed to support much of that business travel was quite challenging, but nothing I couldn't handle.

    Ulimately, after just over 1 year of a mix of planful and unplanned business travel, I chose a different role in the enterprise, one that does not require short notice business travel, but has required several trips of one week in length with months advance notice to line up treatments in the cities I am doing business or permit me to drive with my care partner/spouse to the destination and conducting mostly nocturnal treatments in our hotel room.
    Last edited by stumpr54; 07-21-2014 at 08:18 PM.

  5. #5
    Junior Member
    Join Date
    Apr 2013
    Posts
    1
    I am also new here. I lost my job 3 months ago and being on stage 5 with GFR 8 practically ready for dialysis. I hope to be able to do PD and continue to work. But meanwhile I am feeling so bad, than can't even think about going to interviews and deal with all stress of looking for a job. Even if I will find one how can I keep it in situation when you constantly have to take time off to go to the doctors, or for some test, or injections for you anemia. Who is going to let you do that when you just starting a new job? I am getting unemployment benefits until October and have no idea what should I do after if I couldn't find a job. Any advice how to get disability at least for a while?

  6. #6
    Member
    Join Date
    May 2014
    Posts
    81
    Hi there! Welcome to the community.

    I'm sorry you are feeling so bad. This can be a tough time, but just know that you're not alone. Your concerns about seeking employment are certainly valid, but there are also many benefits of continuing to work while undergoing treatments, and there are dialysis options that are more accommodating for working patients. I recommend you speak with a patient advocate. They can help you navigate your current situation and figure out the best option for you. Call them at 1-888-405-8803.

    This website may also be helpful to check out: http://www.davita.com/working-on-dialysis

    Hope that helps!

    Caitlyn

    Quote Originally Posted by iridimal View Post
    I am also new here. I lost my job 3 months ago and being on stage 5 with GFR 8 practically ready for dialysis. I hope to be able to do PD and continue to work. But meanwhile I am feeling so bad, than can't even think about going to interviews and deal with all stress of looking for a job. Even if I will find one how can I keep it in situation when you constantly have to take time off to go to the doctors, or for some test, or injections for you anemia. Who is going to let you do that when you just starting a new job? I am getting unemployment benefits until October and have no idea what should I do after if I couldn't find a job. Any advice how to get disability at least for a while?
    Last edited by CaitlynAtDaVita; 07-29-2014 at 03:57 PM.

  7. #7
    Senior Member
    Join Date
    Apr 2012
    Posts
    285
    FWIW, you will qualify for disability (such as it is...) the day you START dialysis. You will also become eligible for Medicare that same day. So, if you have zero prospects at the moment, it might be a good time to start dialysis, let yourself get accustomed to it, then go out to find work once you know what your dialysis schedule is going to be like.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •