starting to be to much

[dyann]

I know I am going to sound like a big baby, but this is all starting to get to me , I started dialysis officially in late september, I had my first treatment and perma-cath put in on august 27th,2009 when I was at the mayo clinic,  I went to find out some causes of medical issues with the kidney and ended up with a completely unrelated illness that put me in the hospital and I lost what was left on my one kidney and had already lost my left one now i have none.  I accepted all of this even thou i was mad only 45 and still raising my daughters.  i recently had the fistula put in, last Monday I developed a severe headache and high fever 103.9 only to fine out the perma-cath had become infected and to be removed ASAP so off to the hospital had it removed had IV of 1.5 grams vanc told I would get a new cath put in on Tuesday went back Tuesday, but instead of the perma-cath they replaced it with a temporary cath in the upper part of my neck,  I was still running a high fever and they did not want to risk me getting the new cath infected too. the one in the neck even thou temporary really hurts and I have to be so carefull as it can pull out easy  I have to be on vanc for 2 weeks before they put the other one in.   I go out and people stare I know i look like I have been in some sort of accident I have dressings on my chest , neck and wrist.  the bills are adding up, I work full time and Other than being ill this past week I have not had a day off in almost 6 weeks they make me make up 10 hours a week working weekends because i AM TRAINING FOR IN HOME DIAYLSIS  I realized today that this is my life and i do not know it I like it much I am so tired of fighting a battle I keep being told I will lose.  we recently had a dialysis pt(Wk in health care)die and the nurse who knows I am on dialysis states to all the managers at morning meeting  well she was on dialysis and you know those pt do not live forever - I wanted to hit her saying you jerk I am on dialysis and i would like to live a little longer.  oh well i just needed to rant

[Lillupie]

Dyann,
 Yeah I totally understand and see this. It is so frustrating to have to go through this. I hate it. How old are your daughters? Mine is 3 years old.  But you can look at this as now is the time to live life to the fullest.
 I have traveled now more then ever. If you go to PD you will have a lot more freedom and can go back to work more.
Good luck and I wish you the best, keep in touch and post often.

Are you getting trained to do home hemo?

Lisa

[okarol]

Hi dyann,
I am sorry it's been so tough on you!
Have you applied for Medicare? It would help with the bills. Call your social security office, or apply online.

The effective date of ESRD Medicare is dependent upon the type of treatment the
individual is receiving:

1. Hemodialysis
Medicare is effective the fourth month of treatment, i.e. if hemodialysis is begun
in May, Medicare becomes effective August 1.
2. Home/Self Dialysis
Medicare is effective the first month of treatment if:
•The individual takes part in a training program through a Medicare
certified training facility,
•Home/Self training is begun within the first three months of treatment and
•The individual is expected to finish home training and self-dialyze at
home
3. Transplant
Medicare is effective:
•The month the individual is admitted to a Medicare certified hospital for a
kidney transplant or for health care needed prior to a transplant if the
transplant takes place that same month or within the following two
months
•Two months prior to transplant if the transplant is delayed more than 2
months after you are admitted to the hospital in anticipation of transplant
or related health services

[Sunny]

Once you get the NxStage training done, I'll bet things will get better for you.
As Okarol mentioned, you are probably entitled to Medicare assistance, Social Security benefits, or maybe even employer related insurance. Ask your Social Worker for more information about some kind of assistance. It's hard enough working full time while on dialysis and it sounds like you could use a little more help for now. Hang in there.

[dyann]

Thank you everyone, yes I am training on the NxStage system  I guess I am just tired of all the traveling from 6:30 to wk and off at 12:30 then dialysis at 1 usually get home about 6 or later make dinner, homework with the girls, clean house  Teenagers do not think a clean house is important   by the time I get settled down I am so exhausted and then I worry about how am I going to pay my bills mortgage get my medications, I have filled out the medicare paperwork and believe it or not I cannot remember where i put it,  I feel like my memory is gone and that is frustrating to me.  My job requires a good memory and as a Director it scares me that my memory is not so good these days.  but I know I am not a lone,  saw my family today and my father was very concerned at how tired I looked, but I told him it was OK.  I do not want them to worry they do not need to worry about me they have to worry about themselves.  anyway I feel better thank all of you for your kind words  I needed that
Diane

[looneytunes]

Hi Diane.  Sure sounds like you're having a rough go of things right now.  I can't say much to help but am sending you a hug  . 

[Rerun]

Hang in there.  I wish you could take a leave of absence from work until you get settled with dialysis.

Here is to the nurse             

[billybags]

Diane, Trust us things will get better, we all seem to go through different stages that really get us down ,that really test our faith. Stay positive, try and take a little more time for your self. Get your kids to help out a bit more, explain to them what you are really going through. If you feel rough, tell them. Lots of hugs.

[Savemeimdtba]

I know it's hard ::hugs:: Just hang in there a little longer, it gets so much better... the beginning is the hardest part.  I felt like giving up too, but you just have to look forward to that day when you feel better, and it WILL happen, I promise.  Just stay strong.. I am amazed you are able to work during all of this, you are truly a fighter! 

[Goofy]

I know this is not a laughing matter but you did make me giggle when you said you wanted to ....."hit her saying you jerk I am on dialysis and i would like to live a little longer".  I would love to do that to some people!  I could just see myself doing that.  That's what made me laugh.

I understand how hard it is to function at work.  I have the same problem.  You said you were a director where you work.  Well I'm an admin for a director!  I'm constantly worrying about my job.  I make so many mistakes.  I forget so much. I've gotten really good at covering my mistakes, but soon they will catch with me.

I think I worry because of the position I'm in.  I"m supposed to be "assisting" the director and I'm not sure I'm doing a very good job.  He's very nice and he knows my situation but you can only be patient for so long.

I don't know where you work but if you ever need a "goofy" admin, let me know.  We could back each other up!!

Hang in there.  Sometimes it gets to the point that you can't be wonder woman and do everything.  It took me a long time to understand that.  But then again, I didn't starting thinking like that until my kids left home.  I'm only responsible for myself and my husband and he's very helpful.  So when I get home and can't do anything, I don't feel as guilty.  I'm not on dialysis yet but I'm not sure if I totally believe  that when I start, I will feel that much better (at leasr mentally) then I do now.

[dyann]

Again thank you all for writing it has been several days since I read or wrote,  update all of you, my temporary cath that was put in my neck because my perma-cath became infected, stopped working after 3 days, so I had to go back last week and have that removed and a new perma-cath put in.  Yesterday the new cath area started bleeding so they are keeping a watch on that and today I am running a slight fever again along with pain in my lower back.  I am taking vanc 3 x a week IV 1.5 grams to ensure that the infection is gone. My girls laugh and say that I look like I have been shot in the neck and the chest, it is nice we joke about things.  I guess I just feel overwhelmed and really do not want to burden my family with how I feel so I keep it to my self. oh well enough for today I am at work and yes it is a Saturday, but have to do what I have to do, then I go to dialysis training, because I missed Monday and Tuesday d/t the cath not working.  everyone have a great day and keep the faith

Here is something I have hanging in my office thought you may like it
Quote  "Never say you can't; instead say do what you can.   have a happy day

[del]

  to that nurse who was insensitive enough to tell you that dialysis patients don't live very long!!!  My husband is working on his 13th year on dialysis and doing very, very well!!!  A lot of people do live long , relatively healthy lives on dialysis!!  :sir ken;to that nurse again!!!

[KICKSTART]

You could always tell that nurse that ..nurses who go round saying dialysis patients dont live very long, dont live long either !