huge clot at venous needle

[fearless]

I've been doing nxstage daily "short" (it's actually 3hrs 40min) 5x a week for about 5.5 months.  I've had lots of mishaps but have been very happy to be able to dialyze at home.

One thing that's been bugging me though is that every morning i feel very achy, and my joints are stiff, bottom of feet a bit painful when I stand.  It goes away after a while.  Doc doesn't seem to be concerned.  Labs are OK.  Is there something about the nxstage that is causing this?  I didn't experience it before this therapy.

But that may be water under the bridge.  I'm really having a crisis emotionally right now.  A possible transplant donor has not passed inspection.  i was really hanging on to that hope.  I've been on dialysis 9 years and I'm just tired of this.  I know a transplant is coming eventually, but the near-daily dialysis has become overwhelming.  I get up, set up, get on, get off, break down, go to bed.  Get up and start all over!  I can't remember what my life is for because the times I'm actually living it are too brief.

So, I had started making plans to try to go to extended and maybe do 4x a week.  This thought helped to lift my spirits.  Now tonight I had removed my uf of .9 (not much right?  and the same amount I had done 2 days ago - I hadn't dialyzed yesterday - and it was definitely at least what needed to come off)  I used the same amount of heparin.  Everything was fine.  Then the machine had to be shut down because there was a great big clot right at my venous needle (I probably pushed it that far trying to make things go again - thanks Nxstage for not letting me kill myself!    I didn't get my blood back.  My doctor's been restricting my Hg to below 11 (which means it's usually much lower than that - you know how that goes if you're completely dependent on epogen for any blood at all)

So now I'm depressed again and feeling like I really can't keep up this dialysis.  I hate the thought of going back to the clinic so much I feel like I just wanna give up.
This is so unusual for me.  In 9 years I've had lots of serious troubles and trials.  Now it's just the lifestyle that's about to be the end of me.  I feel so guilty too that I ever felt like I couldn't understand why anybody would want to just give up?  Life is so precious.  But I guess sometimes even though it's precious it's just too hard.

Ah me.  I know tomorrow I'll get up and do what I have to do.  Short a half pint or so, I will muddle along.  But I'm just not sure what to do next.  I'm really just so overwhelmed emotionally by a certain sense of hopelessness right now. 

[Bill Peckham]

Some days are definitely harder than others. Sounds like you're like me and like to have something to look forward to - for me travel does it. Is there something not renal related that you could plan? I have started making plans for next July that will carry me through a Seattle winter.

As far as the achiness in the morning - are you exercising/moving for the purpose of exercise/movement?  I know it can feel like a grind, hope you can try extended and it feels as liberating for you as it has for me.

[boswife]

   Sometimes i feel like i shouldnt say anything on times like this because i am not on D myslef, but.............beings I am one whos probably overly involved in my hubbys illness and even to the point of 'nearly'  forgetting im not the one on the machine  .  After all, i do live the life of a home D person, walk his steps with him to protect him, watch every bite and always trying to make things right so he can be as healthy as possible..etc......  So, what i want to share with you is that even i, who most likley have all the hemoglobin i need, still have a hard time keeping up mentally, and physically with life, having this  Dialysis/kidneyfailure lifestyle.  I've watched and cared for my hubby through transfusions, exhaustion, building back up his hemoglobin, and it's awful.  Just plane awful!  and i cant emagine helping him go through this and not having good blood to keep me going. and i fear that one time, when it's not responding to epo, that he too will just want to throw in the towl.  I can hardly bear that thought, but as tired and horrid as "i" can feel, i cant emagine what you guys feel when you have to keep dealing with this............WHILE having such low hemoglobin.  oh boy, I just wish i could help, but i can tell im scrambling my thoughts here as i am way too tired tonight.  So, I hope you understand my best wishes, and understanding of what your going through, and wish for you to remember, that you will feel better once you get back on track.. //////if they'll let you    :grouphug;b 

[M3Riddler]

I've been doing nxstage daily "short" (it's actually 3hrs 40min) 5x a week for about 5.5 months.  I've had lots of mishaps but have been very happy to be able to dialyze at home.

One thing that's been bugging me though is that every morning i feel very achy, and my joints are stiff, bottom of feet a bit painful when I stand.  It goes away after a while.  Doc doesn't seem to be concerned.  Labs are OK.  Is there something about the nxstage that is causing this?  I didn't experience it before this therapy.

But that may be water under the bridge.  I'm really having a crisis emotionally right now.  A possible transplant donor has not passed inspection.  i was really hanging on to that hope.  I've been on dialysis 9 years and I'm just tired of this.  I know a transplant is coming eventually, but the near-daily dialysis has become overwhelming.  I get up, set up, get on, get off, break down, go to bed.  Get up and start all over!  I can't remember what my life is for because the times I'm actually living it are too brief.

So, I had started making plans to try to go to extended and maybe do 4x a week.  This thought helped to lift my spirits.  Now tonight I had removed my uf of .9 (not much right?  and the same amount I had done 2 days ago - I hadn't dialyzed yesterday - and it was definitely at least what needed to come off)  I used the same amount of heparin.  Everything was fine.  Then the machine had to be shut down because there was a great big clot right at my venous needle (I probably pushed it that far trying to make things go again - thanks Nxstage for not letting me kill myself!    I didn't get my blood back.  My doctor's been restricting my Hg to below 11 (which means it's usually much lower than that - you know how that goes if you're completely dependent on epogen for any blood at all)

So now I'm depressed again and feeling like I really can't keep up this dialysis.  I hate the thought of going back to the clinic so much I feel like I just wanna give up.
This is so unusual for me.  In 9 years I've had lots of serious troubles and trials.  Now it's just the lifestyle that's about to be the end of me.  I feel so guilty too that I ever felt like I couldn't understand why anybody would want to just give up?  Life is so precious.  But I guess sometimes even though it's precious it's just too hard.

Ah me.  I know tomorrow I'll get up and do what I have to do.  Short a half pint or so, I will muddle along.  But I'm just not sure what to do next.  I'm really just so overwhelmed emotionally by a certain sense of hopelessness right now.

fearless,

Regardingthe aching.... have you had your PTH tested recently?  A high PTH can cause the symptoms you describe. Just a though...

[fearless]

God I am so grateful for this site.

everything looks better in the light of day.  I felt a bit shaky today and my pulse is faster than usual, I believe due to the blood loss yesterday.  But I made A LOT of phone calls today and am feeling a little bit more optimistic that I might be able to make some changes locally for the better.  I've been denied purchase of the buttonhole needles that I'd been cannulating with since I started BH, and the ones I have to use are difficult to stick with, and I always get big clots in the needle tubing.  I've been trying to be patient in getting the ones I need, but the more of a runaround I get, the more un-nice I become.  But today I may have finally broken through the juggernaut - an incredible woman at Medisystems has worked "top-down" through Fresenius to hopefully "teach" my clinic that they CAN order outside what they're calling their "formulary".  And I found out that the other local clinic does do home hemo with nxstage, and it also sounds like they have a healthier Hg policy. (meaning that instead of cutting me off they might simply adjust my dose so that I might hope to keep a more stable level.)  this is all I really needed to hear - I'm going to check the place out asap. 

So also: my nurse said there's no good way to add heparin during treatment:  how do you guys do extended?  Is the cartridge different? 

Bill:  exercise and travel have been too difficult, for different reasons.  But now I may borrow some money and just go somewhere and do my dialysis in a clinic for a week - just to get away from my life here.  It's been too long.  But my ass is broke so the reimbursement policies are not on my side.  Maybe I can find a getaway in my state.  But my state is so boring    But yes, I'm like you. I need something - anything - to look forward to.

boswife - your kind and sympathetic words made me cry last night and went straight to my heart.  Thank you SO much for taking the time to write them.

M3Riddler:  if that is the case I think you may be spot on.  The PTH has been climbing higher.  Wonder why the doc didn't mention anything like that?  I described the same symptoms to her...?