Home Dialysis Machine/System Transition: Part 4

Initial Impression of NxStage at home . . .

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On the machine . . . and running.

I have been home, with my NxStage machine, since March 25th.

So far I really like it. It has definitely improved my quality of life . . . with the possibility of even further improvement in the future when Canada passes more NxStage features. (I’ll write more about that later).

Here are the disadvantages:

1. I’ve had a little nausea and stomach pain as my body adjusts to the machine – as it’s a different dialysis system. These symptoms are diminishing over time. It is manageable.

Here are the advantages:

1. It is a lot easier for me to set up. I no longer feel dread about getting on the machine because of set up.

2. Less things can go wrong with set-up and while I’m on the machine – as it’s a more simple system. That gives me peace of mind.

3. I have way less supplies in my 2 bedroom apartment. I am able to store everything in my closet.

4. There is a 24 hour NxStage “help line” for technical support that I can call when I’m having issues. I have used it a few times and it’s been wonderful to have this help. This is a huge stress reliever for me . . . knowing that I always have someone to speak to.

Bonus . . . if I would like to move to a new apartment I can do so without incurring the costs of installing hospital grade electric and special plumbing. The NxStage machine does not need it.

Future Bonuses . . . eventually I will be able to travel with this machine!! And in the future, with access to the latest software, my sessions may be shorter too. (Right now I do five dialysis sessions a week between 3 hours and 20 minutes to 4 hours each).

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Settled in for a four hour stretch. Blanket and technology are a must!

Overall, I am thrilled to have this choice. I appreciate the ways my life has improved and I look forward to further improvement – like travel.

Again, my decision to use NxStage is not because I believe one system is better than another. I do not believe in pitting NxStage and Fresenius and Baxter against each other helps the people living with Chronic Kidney Disease. I believe that having choice, each patient deciding what is best for them, will lead to the best outcomes for patients,

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Home Dialysis Machine/System Transition: Part 3

NxStage ARRIVES!!

A few days before I did my first dialysis treatment at home, my machine arrived. March 23rd.

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NxStage machine in . . .

This was something I had been dreaming about for a long time. (I have known about and wanted to try NxStage for years – since 2011, at least.)

It’s been over a month since I’ve had NxStage and it’s still wonderful and novel, to me, to see my machine in my dialysis room.

Again, sharing this journey, as I transition from one dialysis company to another, is about choice. I believe this machine is the right choice for me – at the present time. I don’t believe one system is better or worse. I believe this system is what is better for ME at this time.

I am so thankful to have choice.

As a patient, dealing with a full-time chronic illness, choice means I can have some control in my health. Control helps in a situation that ultimately feels out of control.

With respect to doctors, nurses and medical executives, I am an expert on my life with this disease. Choice means I can live my life the best way possible under the circumstances. Choice means better quality-of-life – looking at the factors that mean the most to me.

I believe I know best what will make the challenges of this disease worth living with.

I can’t do this alone. I am thankful for the doctors, nurses and medical executives who I collaborate with to decide on my care and what’s best for me. Together we make an amazing team.

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NxStage in dialysis room.

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Home Dialysis Machine/System Transition : Part 2

NxStage TRAINING AND ADJUSTMENT PERIOD . . .

My team and I had anticipated that my NxStage training would take just over a week.

Unfortunately the change in system put me off balance physically – specifically my potassium level being too low. (My team takes my potassium level very seriously as it was part of the reason I had a cardiac arrest in 2011).

As we worked to get things in range, I struggled with the side effects of low potassium. As you may imagine, experiencing fatigue and having concentration issues does not set you up for success as you’re learning something new. Thankfully, we got everything settled and I was able to go home in three weeks.

Those three weeks, doing dialysis and training at the hospital, I was reminded me that home dialysis is really the best option for me. (So thankful for options! Choice.)

During that time, I had to coordinate around my team’s schedule, which was difficult. Luckily I was able to have some time off from work. I missed the gym a bit too.

I made the sacrifice of going to the hospital 5 days a week. That was rough because the hospital environment gives me anxiety. At home I can keep a sense of normalcy to my life. At the hospital I can’t avoid being “sick”.

My home life was affected during that time too.

A good outcome was . . . I completely cleaned and organized the dialysis room. For a while it was simply a guest bedroom.

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Chair and long pillow are a little match-matchy but you get the idea. :)

I received my first NxStage supply order during those three weeks. Unfortunately there was a delivery order mistake. (It happens with all dialysis companies. No big deal). I got double my supplies but worked with my NxStage coordinator to get that situation settled. It took no time.

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This double order was resolved very quickly with no hassle.

In the end, I got my new supplies all into my closet. I love having everything tucked away.

The clean-up set me up, spatially and perhaps even psychologically, to receive my new machine. And to start this new chapter.

* big smile *

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Home Dialysis Machine/System Transition : Part 1

NO WINNERS AND LOSERS WITH DIALYSIS – Just CHOICE . . .

I came home with my new dialysis machine on Mar 25th. Before that I was at the hospital for three weeks learning the new system and adjusting physically to NxStage.

This has been one of the most challenging transitions I’ve dealt with as far as my health is concerned. And it was extra difficult because I didn’t expect it to be challenging. (I was just being overly optimistic, really).

Those three weeks (at the hospital) deserve a blog post to themselves – and I will eventually tell that story – but for now I want to write about the transition within my home. From one system to another.

I will break the transition up into a few parts – a few blogs. :)

Anyway, I’m thinking about this experience – in switching companies – from a new perspective.

With NxStage and Baxter and Fresenius (three dialysis companies I’ve dealt with in my life with Chronic Kidney Disease), there are no winners and losers – just choice for the patients who need dialysis.

I want to be as unbiased about this as possible. My aim in sharing this experience is NOT to say one system is better than another.

My excitement about bringing another dialysis system home was fundamentally about medical progress for kidney disease patients. An appreciation of the research and care that is going into improving the lives of people on dialysis like me. And the improvement of my own life in practical terms specific to me and my choices.

For me it was about improving my day-to-day experience . . . as I am choosing to live my day-to-day.

I think the biggest lesson in this transition, for me, is the lesson about CHOICE.

I am using the NxStage system now. I believe it is the right CHOICE for me at this point in my life.

I am very thankful for the Fresenius Home K that I had before.

Here are some photos of my Home K being wheeled out.

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When I’ve imagined my Home K being wheeled out of my apartment (in the past) I envisioned a party and physically kicking it out the door.

I don’t feel like that anymore. I think there should be a lot of RESPECT given to a machine that sustained me for a long time.

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Feeling thankful to be alive and well.

Feeling thankful that I am living with a disease that has effective treatments and good choices for its patients.

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Project Red Fashion Show Talk (Heart & Stroke) . . .

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Short video recorded for Queen’s University‘s Project Red Charity Fashion Show few weeks ago.

Here is the link to watch the video: (just over 3 minutes)

https://youtu.be/SdCfGi_XtGs

I was thrilled to have the opportunity to share my experience to help raise awareness for the Heart & Stroke Foundation – specifically targeting the university audience at Queen’s University. (My alma mater).

I am living proof. My life has been improved through cardiac research. From my surgically implanted defibrillator to completing Cardiac Rehabilitation to the cardiac medications I take daily. (The defibrillator used by the paramedics and fire fighters who got my heart going again on March 15th 2011 is definitely further proof.)

My day-to-day quality of life is better because of cardiac research dollars.

I can’t state it more plainly than that.

Queen’s University Project Red:

https://www.facebook.com/projectred

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Heart and Stroke Foundation:

http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.2796497/k.F922/Heart_Disease_Stroke_and_Healthy_Living.htm

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4 Year Cardiac Arrest Anniversary . . .

Yesterday was the four year anniversary of my near fatal cardiac arrest.

I took a day to reflect on all the good that’s happened since then.

I reached out to friends and family who were there for me during that difficult time. Especially those who participated in saving my life. I thanked them for being there and for loving me.

I reached out to people who mean a lot to me in general. (Including wonderful people that I’ve met since my cardiac arrest).  And thanked them for their presence.

I did my usual Sunday routine. Positive reading. Yoga. Meditation. Reflection on things I am thankful for.

Later in the day, I ate pizza and wings with one of my aunts. Coincidentally, in the house with the cardiac arrest happened. She chastised me for giving her the scare of her life. We watch movies and laughed together. (Of course, I fell asleep during one of the movies and missed the middle!)

Overall, I am feeling  very thankful. A real sense that I have A LOT to be thankful for.

Although I am still on dialysis and waiting for a call for a kidney, I still have a really wonderful life. And the energy and enthusiasm to work at making my life even better. With amazing things to look forward to. (With or without a new kidney).

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That’s all . . .

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