Dialysis finally started (Long Post)

[Carlyon]

Well we finally started the Big D and it wasn't as bad as I imagined.  Don't get me wrong, it's far from a walk in the park but we had all kinds of horrible ideas as to what would happen and that just wasn't the case.

Thanks to my extended lurking around this forum and my research, I felt comfortable speaking up for my husband's care.

Let me reiterate what's been said on this forum time and time again - you are your best advocate!  Just because one person says one thing doesn't make it absolute.  It's your body and only you know how you feel.  Don't allow overworked doctors, nurses and/or techs make you uncomfortable solely for their convenience. Do what you can to ensure that your wishes ( as long as they're medically feasible and safe) are respected.

My husband's original neph, worked through a hospital that owns a small private dialysis company that partners with Fresenius in Ohio.  It's bordering on a serious conflict of interest but I digress.

We mentioned on several occasions that we wanted to begin the HHD training as soon as possible because 1st we're self-pay and we needed Medicare to kick in immediately and 2nd I knew that my husband is very strong willed and stubborn and would be much more compliant if he could control the times he dialyzed.

To remain with our original neph, I was willing to train on the Fresenius's Baby K but the CNP (not the doctor) said that we couldn't train for home hemo until my husband became "established" in center. I asked if there was a medical reason for this refusal or just her opinion.  She replied that "No one goes straight to Home Hemo, you have to go in center first" I asked again, was there a medical reason for her refusal.  I even explained our financial reasoning for HHD, still she offered no medical reasoning other than it was the "way things are done"  That said we ended up going to DaVita, we were welcomed into HHD.


The first few days were arduous but my husband was so uremic when we finally got everything together that the treatment was welcomed.  He was very sad the first few days but after one week our HHD training nurse had pulled off 14.8 kg of fluid and my husband was back.  He was washing dishes, folding clothes and back to his old silly ways.  I don't think I'd realized how bad situation was until started feeling better.  I can see his Achilles tendon again! Wow!

There were episodes of cramping and nausea the first weeks but our HHD training nurse was great and taught us how to handle the various situations that may come up.  Fortunately, ( or unfortunately) during the training we experienced every bell, alarm and situation so we went home very prepared plus being able to adjust his treatment to his schedule and minimize side effects is a beautiful thing.

The downside to starting HHD without going in center is a very spoiled patient.  He tries to dialyze when his favorite shows are on so he can have uninterrupted TV time.  He sets the machine up and takes his vitals, all I have to do is cannulate and monitor while he's on the machine.   So I bought a baby monitor so I can move about the house but still hear any alarms. In a couple months  the nurse said that he can come back in and learn how to self cannulate...cool.

Even though I'm not a high volume poster, you guys were instrumental in this situation turning out as well as it has and we're ok… for now. 

Thank you so very much!! Happy New Year!!

[boswife]

Wow!! what a great and inspiring post!!  You did yourselves proud for sure!!  Im so glad he is active in his care but/and it cracked me up when you said about him being a spoiled patient..  I 'blew' it with hubby and started off doing too much for him that now, he expects.... ie, massaging his feet EVERY single treatment..lol  Oh, i like to do it most of the time, but sometimes, i wish it were me getting that massage!!!  and snacks .. oh he wants them a few times during treatment too...     Anyway, im so glad you held your ground and that it's all working out for you.. thats GREAT news      All the best for continued success and................. Happy New Year to you too

[willowtreewren]

Good for you!!!!!

I hear you about getting your husband back. We did not realize how bad Carl had gotten before he started D. Afterward he said he felt 10 years younger.

 

Aleta

[marje]

Good for you and good luck with home hemo.  He will quickly learn how to cannulate himself.  At some point he may even consider doing nocturnal! As far as I am concerned nocturnal home hemo is definitely the best dialysis and you don't have the same food or fluid restrictions and you go back to feeling "normal".  You also have little or even no medication.  It is worth thinking about.!

[CebuShan]

Good for you in standing up! Glad Home hemo is working out so great! We also had experienced all kinds of alarms while training and it certainly helped us not panic when we got home! I self cannulate and it is something I never thought I would be able to do!  Best of luck to you both! I  wish I had known about home hemo when I started in-center, I feel so much better dialyzing 5 days rather than 3 days.

Wow!! what a great and inspiring post!!  You did yourselves proud for sure!!  I'm so glad he is active in his care but/and it cracked me up when you said about him being a spoiled patient..  I 'blew' it with hubby and started off doing too much for him that now, he expects.... ie, massaging his feet EVERY single treatment..lol  Oh, i like to do it most of the time, but sometimes, i wish it were me getting that massage!!!  and snacks .. oh he wants them a few times during treatment too...     Anyway, I'm so glad you held your ground and that it's all working out for you.. that's GREAT news      All the best for continued success and................. Happy New Year to you too

Wow! You massage your husband's feet? Hmm... Now how can I get my husband to do that for me?   

[Carlyon]

Thank you all for the moral support 
But I think my husband may be slightly addicted to dialysis.  Not in a bad way, but I think that he was feeling sooooo poorly before dialysis that he doesn't want to go back to feeling that way and I have to remind him to take a day off.  Plus now that his buttonholes are established, the needles slide in like a hot knife through butter so there's very little discomfort. ( at least that's what he says)

Wow!! what a great and inspiring post!!  You did yourselves proud for sure!!  Im so glad he is active in his care but/and it cracked me up when you said about him being a spoiled patient..  I 'blew' it with hubby and started off doing too much for him that now, he expects.... ie, massaging his feet EVERY single treatment..lol  Oh, i like to do it most of the time, but sometimes, i wish it were me getting that massage!!!  and snacks .. oh he wants them a few times during treatment too...     Anyway, im so glad you held your ground and that it's all working out for you.. thats GREAT news      All the best for continued success and................. Happy New Year to you too

Yes my husband is beyond spoiled.  I am to account for his requested 200ml apple juice in his fluid removal goal and be available for pillow readjustment and the occasional toe rub. 

However now that he's demonstrated just how much better he's feeling, I'm going to try and tame this Frankenstein monster I've created.  Lest I spend the next decade picking toe jam and bringing juice boxes.   

All kidding aside, home hemo is a life saver. Literally and figuratively.

Good for you and good luck with home hemo.  He will quickly learn how to cannulate himself.  At some point he may even consider doing nocturnal! As far as I am concerned nocturnal home hemo is definitely the best dialysis and you don't have the same food or fluid restrictions and you go back to feeling "normal".  You also have little or even no medication.  It is worth thinking about.!

He's thinking about nocturnal but I'm still having trouble getting him to stop sleeping on his fistula arm, so I'm scared to death about him sleeping with the needles in.

[cdwbrooklyn]

This is a story I love to hear.  Congrats and best of luck.   I'm feeling your hubby as I am spoiled with this HHD myself.  It gets easier. 

[KatieV]

I've got to start asking for my foot rubs!   

My husband usually makes me dinner and he'll get blankets when I'm cold.