Hello from Canada

[shirleymac]

It’s so nice to be accepted as a member. My name is Shirley and I am a 67 year old female from British Columbia, Canada. I have Polycystic Kidney Disease. My father also had it. I was diagnosed at age 23 when cysts showed up on an ultrasound to find out why I had a sharp pain in my right side. I haven’t felt really well for many years but this year I started to feel worse and worse. I kept asking about starting dialysis but my nephrologist wanted me to drop to 7% before I started since my labs were still acceptable. I was at 9 %. The beginning of June was horrible. I called his nurse but all she did was send me Nephro cause I told her I had no appetite and was eating very little. After two weeks of just wanted to end it all... slept all the time or sat on the couch watching TV, dizzy, heart pounding, short of breath, I finally went to the ER. I was rushed to a larger hospital and told I needed to start dialysis NOW. I also was told I have Ventricular Arrhythma which basically means I could drop dead suddenly. Wonderful. I spent my 67th birthday in a High Accuity Unit (one level below ICU) and being taken to have a chest catheter inserted so I could start on dialysis immediately. I was there for 2 weeks and had 4 or 5 runs. I was weak from lying in bed for 2 weeks but I’ve never felt better in my life! I’ve been home now for 3 weeks going to a clinic for dialysis 3 times a week. The hospital is an hour drive each way. I don’t mind it too much but I don’t like the idea of the neck catheter. Right now I’ trying to decide between PD and Home Hemo. My husband passed away 5 years ago so I have no care partner but they say now we don’t need one. I’m really frightened about the thought of doing it on my own since I live so far from the hospital. Does anyone else here to Home Hemo on their own?

[kickingandscreaming]

Welcome.  I don't do Hemo at all and I personally hate it.  I've been doing PD for over 2 years and it works well for me.  I'm 76 and also a widow.  It is not a problem to do PD at home alone.  It's much gentler on the body and the heart.  Make sure that you explore all the available methods.  PD is often overlooked in favor of HD.  Not sure I understand why.  In the states the "party line" is  PD first, but most nephs stlll push HD.  But you do have choice.  Good luck.

[shirleymac]

Thank you kickingandscreaming. PD was my first choice and I apparently had a date for catheter insertion but no one informed me. When I was in hospital the head of nephrology said he’d spoken to my doctor and they decided my home situation wasn’t acceptable and my appointment had been cancelled. I thought they meant because my autistic, grown, son lives with me. When I talked to my neph he said no, it was because I am having renovations done to the house. They will be finished in September. But my neph is still pushing in center Hemo. That’s partly why I’m here, I like to hear personal experience stories.

[cassandra]

Hi Shirleymac welcome to the site


 

After the renovations I would think the PD route would be possible again.


Before HD I did PD, and I agree with KaS that can be way more easy on you and your body. But I also know of some people with PKD that the liquid in their body was very uncomfortable.

Concerning HHD, when I don't have a 'disabled' arm/hand because they have operated on it, or a problem with my eyes it is fine to put my needles in, set the machine, break it of when finished. But the boxes are always heavy, so someone (in my case Hubby) will have to put them near my D set up. I always D alone. I make sure I have a phone and ipad within reach, and food, and drink, and books.


Is there a home dialysis  department in your hospital?


Good luck, Cas

[Charlie B53]

Being Needle-phobic I doubt I would do well on Home HD.

PD at worked very well.  Until I screwed up and must have caused my own infection.  3 1/2 years of success.  Great Labs, the freedom to eat and drink anything I wanted, and as much as I pleased.  The daily/nightly treatments dealt with the fluids wonderfullyl.

I highly recommend home PD for those that can manage the due diligence that it takes to ensure they can make ALL connections perfectly clean and sterile.

It does take patience and due diligence.  Attention to detail IS everything.

The really great thing about PD is I could pack up my Cycler and necessary supplies and take it with me traveling.  Not so sure that may be so easy with Home HD.  Possible, Yes.  Probable, not so much.  But it CAN be done.

Stay Careful.

Charlie B53

[shirleymac]

Thank you Cass. I insisted on a cat scan to make sure I had room for PD. I’ve been to the PD surgeon to make sure my historectomy scar won’t be a problem. Everything was fine to go ahead. I researched all I could. I don’t know why they’re bent on Hemo. I’m in Canada so it isn’t a money issue. Yes, we do have a Home Hemo Center in this hospital, I’d have to travel an hour further further for PD. I do worry about space but I can manage. My son who lives with me couldn’t help me really aside from calling for an ambulance and he’s good at lifting things for me.

[shirleymac]

Thanks Charlie. I’m needle phobic myself but I think if I had a grapht and could use the dull needles I’d be okay. PD sounds and looks great. Everyone who has talked to me thinks I would do well. I have good manual dexterity and I almost obsessively follow any rules I’m given. I don’t travel anymore. I’ve been told to only expect to be successful for 10 years but 10 years is 10 years of a freer lifestyle.

[kickingandscreaming]

10 years duration for PD sounds very generous.  I've always been told that 5-6 years is average (which means some people go longer) duration for the peritoneum.  But 5-6 years of a freer lifestyle is still better than none with HD.  Home HD gives more freedom, but then there are THE NEEDLES!!!  And your clinic might not go for Buttonoles (my clinic doesn't--they consider them prone to infection).  You can get more mileage out of the peritoneum by being careful to use the lower strength (1.5%, 2.5%) solutions rather than the 4.25%.  And avoiding peritonitis.