Diagnosed With Dialysis


Being in and out of hospitals on a monthly basis over the past few years I assumed that my most recent trip the ER was going to go like it usually did, a few days of recuperating and I’d be back home. Unfortunately for me this wasn’t the case! Within a few hours of being admitted the Doctor came in with some pretty grim news. I was being transferred to another hospital where I would be meeting with the Nepherologist ( kidney specialist)  to decide whether or not I would be diagnosed with dialysis treatment for my kidneys? I’ve been preparing myself for this moment as my kidneys have only been functioning at 39% for a few years now but despite my preparation, it’s never easy to accept something like this! I was depressed, frustrated and feeling very anxious about my situation and what was to come.
Once I met the Nephrologist (kidney specialist) I was told that I would be staying for a bit. Passing from hospital to hospital since the first of August was taking a toll on me as it was and having to be 1 1/2 hours away from home was going to be even harder as I’ve never been more than a 20 minute drive from home. A little bit easier for my wife and son to come visit every once in a while. An hour and half would be a lot of driving back and forth not to mention quite costly when it came to gas so the news of staying wasn’t exactly a cherry on top! After a few days of tests I was transferred downstairs to intensive care where they would be inserting a catheter into my chest for dialysis treatment, my kidneys weren’t doing enough anymore.
Obviously this made me extremely nervous but thankfully they administered narcotics to calm me down because I would have totally panicked without them! Procedure being done, dialysis started. To be completely honest, it’s not what I expected and I’m grateful so far that my treatments haven’t been too bad. I occasionally get numb fingers which I blame on the constant blood pressure monitoring and occasionally I feel kind of spacey but that’s it. Some patients get sick, pass out and just feel bad in general.
My diet is now a major factor in my life. Everything I eat has to be low-sodium, low-potassium, NO phosphorus which means even more label reading! On top of that I’m on a celiac and diabetic diet which makes my job even more difficult now as certain gluten-free products such as baking ingredients are a no-no for me. As for the rest of what I can’t eat, it consists of some of my favourite foods. Nuts, milk, cheese, turnips, tomatoes, bananas, ice cream, mushrooms and sooo much more! I’ve gotten used the unsalted part as salt was something that I avoided before this and the vegetable and fruit part of it have been pretty easy as I love them both. All-in-all it’s not as bad as I figured it would be. We’ll have to make time for the 6 hours of travel every second day for dialysis treatments which to me is the worst part of it besides the weight I’m losing with the nutrients being taken off during treatment.
Do you know of anyone who suffers from CKD (Chronic Kidney Disease)?

Comments are welcomed!

Holly & Jay

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10 responses to “Diagnosed With Dialysis

  1. I suffered for many years with CKD and spent almost 4 years on dialysis. I did pretty well on dialysis compared to many. It is so unfortunate you have to travel so far. Hopefully you can find a good place closer or start home dialysis. I received a transplant on January 26,2012 and this day changed my life forever. I have had lots of ups and many downs but am happy to be ware I am now. I know write now you are in shock with so many things coming at you all at all once. You will get more comfortable with everything and it will be your new normal. Ask lots of questions and read everything you can. Be careful what you read online. Keep your family close and take all the help that is offered to you. Listen to your body and your Doctors. I know what you are going through and it is difficult do not do it alone. My thoughts and prayers will be with you. Good luck! ❤

    • Thanks Lorie 🙂 I’m always asking questions and love advice from others that have been through or are going through the same thing. I trust their advice compared to people reading from books or internet sites. I personally don’t trust sites unless the person is going through the same thing as me or something similar. ~J~

      • Just saw you said you go to Bathurst for dialysis, is that Bathurst New Brunswick. If it is I live in Saint John. Hope we have a mild winter as you know up north can be pretty nasty for travel. Best wishes!

      • It is NB. It’s awesome to be meeting people in the same vicinity as me that have experienced what I’m going through. I had no idea how many people suffer from CKD so close in my area. I hope our winter’s a mild one too. I hate the cold, lol! ~J~

  2. I can only image how the drives are fatiguing and challenging with young kids and when you are feeling unwell to begin with. The extra time for food prep doesn’t help either. I am thinking of you Jason and your family and keep hoping that a solution to the travel at least comes soon. Thanks for sharing your story with us. xo Cathy

  3. I understand your feelings. I found out in 2000 that my kidneys were failing. I was told no more kids. I decided to go back to school. Well, two months into school I found out I was pregnant. My daughter was born at 35 weeks (4lbs 15oz) because it was not safe to go any further with the pregnancy. I went back to school for the next 2 years and a month after finishing I was having a normal dr visit. I felt perfectly fine. She had me do blood work and 2 days later my nephrologist called me and told mr I was starting dialysis that night. I was recently separated with 3 kids (9, 8 & 1). I was terrified and alone. I had 4 permcaths, a failed fistula and graft. When my daughter was 5 she became severely I’ll. they thought she had Willms disease (cancer of her kidney) I was juggling my dialysis and then trVelling an hour to where she was on my off days to be with her. In the end, after many tests and antibiotics, it was found to be an extreme case of pyelonephritis. She’s been fine since. I received a transplant in 2008 on Valentines Day, after 5 years of dialysis. I am at 6 years and have just recently found out that my transplanted kidney is failing. I am thankful for the time I have gotten away from the machine. I found, for me, dwelling on my illness made me feel worse. I looked at dialysis as a job I had to do and then had my fun afterwards with my kids. (I did home hemo for the last 6 months of treatment). I’m wishing all the best for you and your family.

    • Thanks Roxane 🙂 I’m sorry to hear about your condition as well as your daughters, I hope things are better for you’s now. It’s hard sometimes when the limitations are there and the travel definitely makes it harder on everyone involved. Long trips every few days, finding something to do for the 4 hours of treatment and the gas money is sometimes a struggle at $150/week! Keeping positive and kind hearted friends are what keep me going. The encouragement definitely boosts that positivity. ~J~

  4. I worked in dialysis as a social worker and am also a registered nurse. Adjustment and acceptance of a lifestyle change is difficult…it is crucial to stay on your diet. It is also important to get a fistula as it delivers a better dialysis and is less prone to infection. I hope that you are able to get on a transplant list…I am not sure how that works in Canada. You can also get a transplant from a donor that you might actually know perhaps a friend or relative. Do not hesitate to talk to the social worker at the dialysis center where you receive dialysis they can be very supportive to you and your family. Good luck and good thoughts to you!

    • Thanks Lorette 🙂 I’ve recently been told that because of such a rapid decline in my function the doctors think there’s something else causing the renal failure and that it may be reversible. Just waiting on blood work to come back. I will be put on the transplant list after we get the results back but I will also be on the list to receive a pancreas transplant as well so my odds will be a little higher. I’ve heard a lot of people say that a fistula is safer and better but I’m still uncomfortable thinking of the first procedure that was done! Maybe in time? ~J~

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