I think Rob's giving up on NxStage

[skyedogrocks]

It's not that he can't handle it.  However, he works full time, out of the house by 6:00 am, on the machine by 7:00 and in bed by 11:00.  He feels it is taking up too much of his life.  At least when he was in-center he had 4 days off.

I think if we didn't work it would be much easier, but he is so tired every day and he's starting to resent the nxstage.

Also, they are upping his Epo and giving him extra iron.  I guess his hemo is really low, which can explain is tiredness.  However, he isn't getting the sleep he needs with Nxstage.

Darn 

[jbeany]

Oh, that's too bad, skye.  I'm still loving mine, but then I don't work full time.  I also live so far from the center that with the driving time added in to the dialyzing time, I actually gained back about 15 hours a week by switching from in-center.  How many days a week is he on?  Can he drop a day?

[Adam_W]

Does the centre offer nocturnal home hemo? That's usually the best option for patients who work full time. Maybe you and him could ask his doctor about it.

Adam

[silverhead]

Just wondering if Rob has had a TSH (Thyroid stimulating hormone) test done to see if he might have low thyroid activity, I have been complaining to my regular doc about very low energy and tiredness for some time, he has been trying various BP meds to help, finally ordered a TSH test and found my thyroid is not working up to snuff, started on .25mg, went to .5Mg, am now on .75Mg and each increase has helped out a lot, I suspect after next blood test in 3 weeks I will go to 1mg to get it to normal.
Sharon's Neph made a house call to her yesterday, along with the home care nurse from the Kidney center, and she complained about low energy and he agreed to have a TSH test done for her also, I really suspect she may have the same problem as I, also wonder if maybe doing dialysis 6 days per week on the NxStage might be removing to much Thyroid hormone resulting in her energy level problems?
Tom

[skyedogrocks]

Just wondering if Rob has had a TSH (Thyroid stimulating hormone) test done to see if he might have low thyroid activity, I have been complaining to my regular doc about very low energy and tiredness for some time, he has been trying various BP meds to help, finally ordered a TSH test and found my thyroid is not working up to snuff, started on .25mg, went to .5Mg, am now on .75Mg and each increase has helped out a lot, I suspect after next blood test in 3 weeks I will go to 1mg to get it to normal.
Sharon's Neph made a house call to her yesterday, along with the home care nurse from the Kidney center, and she complained about low energy and he agreed to have a TSH test done for her also, I really suspect she may have the same problem as I, also wonder if maybe doing dialysis 6 days per week on the NxStage might be removing to much Thyroid hormone resulting in her energy level problems?
Tom

His last test in May showed it was it was perfect.  His Iron count is really low, 10, it should be around 15.  So they are starting him on iron to be put into his dialysis, nurse will show us how to do this tomorrow.  His hemoglobin is very low too, so they are upping his epo to 7500 units each treatment.

Next set of labs I'll ask for the PTH testing.  Since it was in a normal range, they don't test for it each month, just quarterly.  I had a feeling it was his anemia acting up.  When it is low, he gets sooooo tired and drawn out.  Hopefully in a week to 2 weeks he will feel better.  He reacts quickly to the iron and epo, so it should be even quicker.

In regards to the dialyzing, he is down to 5 days.  His nurse is great and is woking to get better results without adding another day.  He went to see his nurse today and is stopping by his old dialysis center to see if there is a  M-W-F 4-8 spot open.  I want him to wait it out for a bit and then see what happens.

Glad to hear that your pth will soo be back to normal

[cev]

Hi Skye
My husband is on Nxstage and we are not getting the sleep we need either.  But he feels so much better then at the in-center.  There are not the highs and lows of being toxic so much of the time.  low hemoglobin, which we we deal with often, will make him feel really bad.  Try to get him to stick with NxStage for a while longer. At least until his hemoglobin stabilizes and see how he .  Maybe he can sleep while he is dialyzing I know it won't be the best sleep but every little bit helps.  wishing you the best

[Black]

Hi Skye
My husband is on Nxstage and we are not getting the sleep we need either.  But he feels so much better then at the in-center.  There are not the highs and lows of being toxic so much of the time.  low hemoglobin, which we we deal with often, will make him feel really bad.  Try to get him to stick with NxStage for a while longer. At least until his hemoglobin stabilizes and see how he .  Maybe he can sleep while he is dialyzing I know it won't be the best sleep but every little bit helps.  wishing you the best

I agree with you.

Rob may feel better and feel more like staying with the NxStage after the anemia is better.  Also, agree about the thyroid, but be sure to check the Free T3 and the Free T4.  And agree about the sleep, Mike often sleeps while on the machine.

One thing which may help convince Rob to stay with the NxStage a while longer is that in-center patients die at a rate of 20% per year and home patients live much longer -- in ten years 70% are still alive.

[poohkari]

It's not that he can't handle it.  However, he works full time, out of the house by 6:00 am, on the machine by 7:00 and in bed by 11:00.  He feels it is taking up too much of his life.  At least when he was in-center he had 4 days off.

I think if we didn't work it would be much easier, but he is so tired every day and he's starting to resent the nxstage.

Also, they are upping his Epo and giving him extra iron.  I guess his hemo is really low, which can explain is tiredness.  However, he isn't getting the sleep he needs with Nxstage.

Darn 

We found out today the nocturnal NxStage trials start in October..... Can he hold out for it?

[kitkatz]

Rob needs to do what is right for him. In center dialysis may be better for him than Nx stage. Each person has to decide what is best.

[skyedogrocks]

Hi Skye
My husband is on Nxstage and we are not getting the sleep we need either.  But he feels so much better then at the in-center.  There are not the highs and lows of being toxic so much of the time.  low hemoglobin, which we we deal with often, will make him feel really bad.  Try to get him to stick with NxStage for a while longer. At least until his hemoglobin stabilizes and see how he .  Maybe he can sleep while he is dialyzing I know it won't be the best sleep but every little bit helps.  wishing you the best

He does this every now and then, but has to wake up every 30 mins to take his stats (I'm not always down there for the whole treatment).  Also, the few times that he does sleep, he messes up the pressures or the needles because Rob jerks when he sleeps or his arm just rolls. 

Oh, that's too bad, skye. I'm still loving mine, but then I don't work full time. I also live so far from the center that with the driving time added in to the dialyzing time, I actually gained back about 15 hours a week by switching from in-center. How many days a week is he on? Can he drop a day?

So glad it's working out great for you, I'm sure you love having those 15 hours back to you!  He is down to 5 days already, but they lowered his speed to 420 and upped his flow fracture to 32 so that his labs can get better.


He took yesterday off and feels so much better.  They also shows us how to administer the Venipher (iron supplment) and increased his epo.  So that should kick in ina  few days. 

But it's hard to do working full time with the hours he works.  I will support everything he does, I just want him to feel better and more rested.

[goofynina]

Hi Sky,  just thinking of you and Rob, hoping everything is working out for the both of you.  Keep us posted ok