HHD Happy Anniversary for US

[Hootie]

Well....on January 6th my wife and I celebrated our first year on HHD with the Nxstage system!     

Knowing that the day would come that we would have to do dialysis, I researched and provided information for my wife on the various methods and we both agreed that HHD was for us for all the reasons we all know. We did not initially know anything about dialysis or the machines or anything else. Like others we went to the clinic that our nephrologist recommended that was close to our home. We told her that we wanted to do HHD but she recommended that we do in center for 60 days to get the feel for the treatments and what was required. My wife was fully compliant, but we kept researching how to do HHD and the NxStage machine since that is what out center used. We were convinced due to outcomes, flexibility etc HHD the best choice. The NxStage machine had the portability, ease of use etc. that appealed to her and me. After 60 days we started training for HHD.

I have to say it was overwhelming at first....getting the sequencing down, alarms and just overall understanding something  that was foreign to us was a little much to start off the process. The biggest fear I had was the needle sticking....I was afraid of needles and all the blood stuff. That was compounded by a fistula that was hard to find on the veinous side. The training nurse had clinic people come into training to do the initial sticking by feel since she was having trouble getting it set. Then of course I got  the news..."Its your turn to learn now".... I puckered up but knew we had to learn how and right then. We had high veinous pressures at times but worked through all of it. Over time we had a fistula gram to check it out but it was a just immature. However, over the 8 months it became problematic so another fistula gram was done with a stent put in the veinous side. Since then it has worked fine.

Did I say...I was afraid of needles...yes, I did and I will say it again...I was afraid of needles....I share that for all the people who have similar anxieties. You can overcome them like I did. My wife was a nurse and long term diabetic so she handled it better than I did initially. She was patient with me and we both maintained good attitudes toward the training and had a great HHD nurse trainer. She was also very patient  just reinforcing the right points along the way.

We have had bumps along the way with the fistula and her breaking her leg in August and spending a couple weeks in hospital with surgery and time in rehab hospital. Got to say she has been a real trooper along the way. I have learned a lot about the NxStage machine in managing arterial and veinous pressures/speeds/blood pressures/UF/dialysate.

The NxStage techincial support team is the best support team I have ever seen. I sold and supported call centers in telecommunications for my entire professional career and theirs is the best. The rest of corporate America could learn from them.

 I share all of these details....because I know there are those out there and are in the same place we were in August when we were told the news.

We all know that in center or PD is right for some and HHD is not an option.  However, if you decide to go down the HHD route, you can learn and make it work! It just takes time and most of all a good attitude.

Many thanks for all the support IHD has given my wife and me.  You are great! 

Hopefully we are only a few months away from a transplant...

[Simon Dog]

The NxStage techincial support team is the best support team I have ever seen. I sold and supported call centers in telecommunications for my entire professional career and theirs is the best. The rest of corporate America could learn from them.

Much of the tech support is done from the technician's home using a voice over IP application.

[Charlie B53]

Thanks Hootie for the inspiration. 

I too have a very big problem with needles.  Long ago I used to take short 'naps' from the smallest injections.  Often getting woozy from just the smell of the alcohol wipe alone, accelerating if/when I saw the needle coming. Then very shortly after the needle stick it was 'lights out' for what I hoped was only seconds.  I never really knew.  I do know that I really HATE the smell of those aromatic ammonia capsules they waved under my nose!

Somehow I've gotten better and haven't gone out for at least twenty years now.  And since becoming diabetic two years ago I've actually manged to test regularly multiple times daily as well as give myself insulin with every meal and bedtime.  All without the smallest 'nap'.

Having been on PD for  2 1/2 years so far I am quite hopeful that I stay on PD.  However,  there may come that time when PD is no longer a option.

You give me Hope that I too may overcome my needle phobia and manage to gain the strength to take an active part in my treatment as I do now on PD.

Thanks,

Charlie B53

[Vt Big Rig]

Well....on January 6th my wife and I celebrated our first year on HHD with the Nxstage system!     

Congratulations ...... in three months I could post exactly the same except from the patient standpoint. I am glad you and your wife are doing so well. It inspires some of us that do not have as much time in.

[micron]

Congratulations! we aren't at a year yet but I've been recently thinking how much this "new normal" has sunk in.  It was pretty rough the first several months but much smoother (if no more fun) now.

[Simon Dog]

I have been on home HD for about 2.5 years, and very used to it.

When I started, I picked the BabyK because there were fewer needle sticks a week.    I switched to the NxStage after a cramping/syncope incident that caused much weeping, wailing and gnashing of teeth with my family, and have had no adverse incidents since.   I've also gotten use to needles to the point where the sticks, while they still suck, are routine.   I am finding the extra time I spend of the machine is offset by the reduced time I spend preparing, taking down, and arranging maintenance of the machine.

It's "normal" to the point where I accept it as part of daily life.  I have been very fortunate to not need any fistula intervention after a per-use tune-up (tying off some collateral veins so it could mature), and a fistulagram that proved I didn't need a fistulagram.   

It is possible to live a good life while supporting the dialysis industry, but you have to take charge and figure out what approach is best for you.

[cassandra]

It is possible to live a good life while supporting the dialysis industry, but you have to take charge and figure out what approach is best for you.

Yes it IS poss to live reasonably okay, but not every person on D has or gets that choice, or opportunity. That's why this site's info is so important. To give choices, to save lifes. Definitely saved mine. Although I still hate to be on D though

     

Love y'all, Cas

[kitkatz]

Happy HHD anniversary.  Nice to see you doing so well.

kitkatz-admin

[del]

Happy HHD anniversary!! 

The IHD.com Admin Team

[del]

Happy HHD anniversary.  In my opinion if you can do HHD it is the way to go!!  Hubby has been doing it for over 9 years!!

[PrimeTimer]

Congrats, Hootie! Reading your post made my day and then some. I have often felt such anxiety over my husband's HHD but I get a grip and realize just how capable we really are and all is ok. Your post helps to affirm that. Thanks so much for sharing!