New Nephrologist.... Some advice please

[tbarrett2533]

In my area there are two Nephrologists you can choose, one is Dr. R and the other is Dr. S..... I was so sick in the beginning that my PCP just referred me to the first doctor that would see me that same day which happened to be Dr. R. 

Right from the first day I met with him in his office I didn't like him!! He seemed to rub me the wrong way and my god he looked younger than me (he was fresh out of medical school), but at the time I was to sick to care about anything other than trying to feel better.....After I started in center hemo I would tell Dr. R how terrible I felt, how tired I was, I would ask him questions like why is my skin so tan? I even at one point had my sister go with me to see him to ask to be taken out of work (which he denied and said that people on dialysis can and should work) With each question, or concern I had, he appeared to disregard me. Everytime I would complain or ask a question he would just push Transplant on me, I never ever (still have not) had anyone discuss treatment options with me and any information that I have obtained re: ESRD-Dialysis was done by me looking it up on the internet.... this was including the renal diet (after the first month of terrible labs) I went renal diet NUTS 

So after almost 6 months of this bologna I felt like I need a doctor who is going to hear me and at the very minimum validate me! So I switched over to Dr. S which BTW Dr. R pretty much had a fit about and caused a huge scene and was complaining to the nurse's and techs about how I switched on him...... UGGHHH I am so glad that I do not have to deal with him anymore!    

So here is where I am at now.... I am scheduled to meet with Dr. S to discuss treatment options (YAAAYYY)  this Friday

but I want to also be taken out of work!!!!  This disease is killing me!! I am beyond worn out from it!! Every bone in my body hurts and my entire life revloves around work and dialysis (I don't even have time to go grocery shopping) What would be the best way to approach Dr. S about stopping work??
PLEASE, PLEASE, PLEASE leave as much feedback as possible


 

[MooseMom]

Do you get insurance to pay for dialysis through your employer?  If so, it might be well worth your while to do what you can to keep employed and insured.

If you are too ill to work, perhaps the first thing you could discuss with your new neph is switching to a modality that will make you feel better.  I am assuming that you do HD incenter, three times a week?  Could you maybe do NxStage  or inclinic nocturnal which could make you well enough to keep working?  Would you consider dialyzing at home?

[tbarrett2533]

Do you get insurance to pay for dialysis through your employer?  If so, it might be well worth your while to do what you can to keep employed and insured.

If you are too ill to work, perhaps the first thing you could discuss with your new neph is switching to a modality that will make you feel better.  I am assuming that you do HD incenter, three times a week?  Could you maybe do NxStage  or inclinic nocturnal which could make you well enough to keep working?  Would you consider dialyzing at home?

I am currently doing in center hemo (you are correct!! ) am considering manual PD (I have already spoke to the PD nurse) but I am only 31 years old, not married and I guess you can say I am just a little bit worried re: my body image... I like to rock my bikini's 

There is no in center nocternal clinic's anywhere near my area...... 

I have insurance through my employer, however I also have medicare and medicaid so loosing my insurance through my employer would not effect me (so much)
I thought about cutting my hours down (I already went from working about 100 hours a week prior to getting "sick" down to 30) however if I go any less than 30, I would earn more money by not working....

I have carefully weighed all of my options....
I know two things... I feel like crap all of the time, I am tired, worn out, lethargic (just to name a few)
and I really do not want to work anymore......... I have worked my entire life 2, 3, sometimes even 4 jobs at one time (never ever have I had just "1" job) since I was 14 years old and now that this has happened to me, I feel like I deserve a break from it all!!!

 

[RightSide]

If you are employed in the United States, you are entitled up to 12 weeks of unpaid leave under the Family and Medical Leave Act.  You should be able to retain your health insurance coverage.  And by law, once you have returned to work, your employer must return you to the same position you held before, or to an equivalent position--so you don't have to worry about being aced out of your job while you're out of work.

You can discuss this with the Human Resources department where you work, or have your social worker intercede for you with your employer.  All that will be required is a simple statement from your nephrologist certifying that you have renal failure and are undergoing dialysis.  No boss worth his salt is going to question whether someone with such a serious illness and treatment needs temporary leave.  (If your boss does question it, then you just found out that he's an a**hole and you might as well quit anyway.)

Since it is only 12 weeks of unpaid leave, I would recommend putting it to the best possible use.  Take a vacation, exercise, do things that will help you get your life back in shape again. 

[tbarrett2533]

If you are employed in the United States, you are entitled up to 12 weeks of unpaid leave under the Family and Medical Leave Act.  You should be able to retain your health insurance coverage.  And by law, once you have returned to work, your employer must return you to the same position you held before, or to an equivalent position--so you don't have to worry about being aced out of your job while you're out of work.

You can discuss this with the Human Resources department where you work, or have your social worker intercede for you with your employer.  All that will be required is a simple statement from your nephrologist certifying that you have renal failure and are undergoing dialysis.  No boss worth his salt is going to question whether someone with such a serious illness and treatment needs temporary leave.  (If your boss does question it, then you just found out that he's an a**hole and you might as well quit anyway.)

Since it is only 12 weeks of unpaid leave, I would recommend putting it to the best possible use.  Take a vacation, exercise, do things that will help you get your life back in shape again. 

I do live in the US.... NYS...... and that is my plan....to get my life back in shape!! thanks so much 

[MooseMom]

The first thing you need to do is feel better.  I'm delighted that you are going to talk to this new doctor about treatment options because there are several that you can be thinking about.  No one treatment is perfect.  A lot of people like PD because it doesn't involve needles each day, but there is the catheter in the belly that's a real turnoff for some people.  A lot of people like home HD because, well, it's AT HOME and you can have much more control over your life.  But there's the needle issue, and it does take a lot of self-discipline, plus you will need someone to train with you.  Several people on IHD do home HD by themselves, but clinics will insist on you having a training partner.

In clinic hemo is the best option for people who cannot manage on their own because of co-morbidities or advanced age or something like that.  But if you can manage it, I think you may feel much better with more dialysis, and THEN you will be in a much better position to make major decisions about your employment. 

Be sure to tell us what this new doc has to say!  I'll be very interested in hearing about your impressions and your thoughts about the best way for YOU to get your treatment.  YOU have to live with dialysis, so YOU get to make the decision on how you get it.  Good luck!  I can't wait to hear back from you!

[jbeany]

You can work and be on disability, too.  You will have limits on how much you can make before they start taking cash from your disability back, but at least you can still feel productive, even if you only work a day or two a week.

As for getting disability - you don't really need a doc's approval to get it, but having a letter from a doc goes a long way towards getting it faster.  They will turn you down the first time.  Period.  No matter what.  The doc who wrote a letter for my appeal essentially demanding that I be put on disability had just had another patient get turned down.  The guy had been in a major car accident and was a quadriplegic as a result - and SS still thought he should try to go back to work!

Have you thought about waiting another couple of weeks to see if the new doc gets you on a better treatment that improves your health significantly?  It is possible to work and be on D - but you have to be on GOOD dialysis, not just adequate.

[tyefly]

Really easy to get disability and then you can get a monthly check... once you sign up there is a 5 month waiting period.  And also they ( SSA ) will take out the payment for medicare out of your check... I know you can work while on SSA Disablity but can only make a certain amount....  You just have to call SSA and make a appointment... Being on Dialysis gets you thru  easy... like getting Medicare....

As for you not feeling good....  Its because you arent getting enough dialysis..... You need more that what in center can provide....  we have all been there... doing the in center thing....  and feeling bad...

I moved from in center to Home...  I love it ...it gives me freedom and I  NEVER feel bad....   
 
Think about doing something differnt... so that you can get more dialysis and feel much better.....

[Bill Peckham]

DR R sounds terrible!

What is your current dialysis regime? Length of treatments, blood pump speed, amount of fluid you usually need to remove, pre and post blood pressures ... Dialysis should not make you feel sick, it can and it does happen but it does not have to happen. It is a disgrace that DR R did not respond to your symptoms.

Do you think you could put in your own needles? Look for Meinuk's posts on IHD about her experience getting enough dialysis in NYNY as a single woman living alone. It can be done, but you need to have a doctor who is worth a damn. I hope Dr. S is a good one.

[tbarrett2533]

Met with my new Neph and i really liked him    He took his time and told me all the pros and cons of each treatment option and actually managed to convince me into finishing my transplant evaluation (I was on the fence re: transplant) but when he told me that after transplant I would be able to have children that is what sold me on my decision!! So now I am just going to pray  to god that my name is not on that list for the 8-10 years that they say is the wait time in my area. or I will be too old to get pregnant!!! (and that in the meantime I find a husband) (geezzz it seems pretty much impossible already) 

He did tell me that he thinks that I would be a good candidate for PD!! so that did make me smile 

I am still going to think about PD and I still hate in center Hemo!!!

There was no talk about going out on leave for my job, but I have decided that when I just cant take it anymore, I am just going to take myself out of work and there is really nothing anybody can do or say about it!!   

So two things came from meeting with this doctor...... 1) I have no clue what I my treatment option is going to be, 2) I am still going to work

In short, nothing has changed with the exception that I am going to go through with my transplant evaluation and get my name on the 8-10 year wait!! (that depresses me just to write that 

and before anyone asks, I have no family members that are willing to be tested..... I have one brother and one sister and they both told me that they do not want to be tested and I have very few cousins and they too said NO! as well.......

I just wanna say that I am very thankful that I found this website, I have absolutely NO ONE to talk to and sometimes I think that is the hardest part about having ESRD!!!! so I come here to "talk" and thanks to all who "listen".... it feels good knowing that I can be heard!! 

[MooseMom]

The important thing is that you now have a neph who you can communicate with and who will listen to you.  If nothing more came out of today, you'd still be a step ahead in the game, so well done for that!

You know you hate incenter hemo, so now you can begin thinking about other modalities.  Whatever you decide, you can always change your mind if it just is not working for you.

I know you want to quit working, but with good dialysis, you may find you'd rather work than not.  Again, try to be patient with yourself because you don't have to make this decision at this very moment.

As for the tranplant waiting list, I know...it's a long wait.  But the wait will be forever if you don't at least get on the list.  Those of us who don't have a live donor keep hoping that someone, someday may have mercy upon us.  You never know who might want to be your hero.