Update Regarding Dialysis

Hey everyone. It’s been quite some time since I’ve (J) posted an update regarding dialysis, my transplants and my health in general so I thought that I would do so today. Treatments have been going good when I’m able to make it to them. Sometimes finances are an issue and other times it’s due to the weather. Winter in Canada can be a little unpredictable around this time of year. Here anyways. For example, we went from being in the -30’s w/ the windchill to +10 the other day and it’s currently +1 and snowing. Then the temperatures are expected to drop back into the -20’s again. Anywho, my phosphorus and potassium were elevated this month so the Dr cut back on the potassium bath (as they call it) that is circulated with our blood during treatments. My phosphorus went down on its own which is something that happens often so we weren’t too concerned about it. Other than that, I’m up to date with all my yearly tests for the transplant team in Montreal. They have the results of my thyroid test and everything is looking great. Stopping the tapazole two months ago was a good thing I guess. My thyroid is no longer overactive although I have to wait and see if the Dr thinks I should go for the radiation treatment or if the tapazole burnt my thyroid from the prolonged use.

Lately, my shoulders have been bothering me extremely bad. I’m not sure if I’ve already mentioned that I was diagnosed with Rotator Cuff Tendonitis or not? The cartilage in my shoulders is deteriorating and I need cortisone injections in order to “refill” the empty pockets left behind by the deterioration. The best way that I can describe the pain from the bone grinding on the bone is like having a major toothache except it’s in your shoulders! Just my luck though, my doctor is off sick and I need a referral to see the Orthopedic surgeon. Painkillers are slightly helping with the pain but they aren’t anything strong other than a bit of codeine and Tylenol. The pharmacist suggested that I talk to my doctor about pain meds that they use to help with diabetic nerve pain which is also something I suffer from. Diseases suck!!! *After reading the article linked above, I’ve come to the realization that the aching that I’m experiencing is something worse than tendonitis and needs to be looked at so I’ll be going to the clinic after dialysis today to see if I can get a referral to have an MRI and CT scan.

 

So that’s basically what’s been up in regards to my health and dialysis treatments. Nothing really new but an update for you guys regardless. I’ll try to keep you updated more often as more happens. Until then, have an awesome 2018!

  

For more information about my dialysis treatments & transplants please check out & subscribe to my GoFundMe campaign.

 

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Living Donors and Islet Cells (Montreal Update)

As many of you know, I (J) recently attended a meeting with my transplant team in Montreal, Quebec. I received a lot of new information that left me searching for even more answers which I am keeping note of and will be asking the transplant co-ordinator.

I am currently on the list for a Pancreatic-Kidney transplant but have been informed that a pancreas will only last between 3-5 years and requires an extensive surgery. I was also informed about a method that has a 90% success rate and would not require surgery. This method involves a general anesthesia, a needle and islets which are clusters of cells found in the pancreas. This method would also require a live donor that would also be donating a kidney to me.

The reason that I would need both a kidney & the islets from the same donor is because my body will try to fight off these new body parts and it’s less likely that they’ll be rejected if they contain the same DNA.

This is a lot to think about for myself as well as those that are willing to donate their kidney & islets to me. There’s a lot to read into before making such a big decision as a donor and I want to make sure that those that have offered me an organ & cells are completely aware of the “pro’s” & “con’s” of being a live organ donor.

Image courtesy of Anusorn P Nachol @ freedigitalphotos.net

 

 

While I’m still learning myself, the clock continues to tick so I’m directing potential donors to the sites below:

Healthy Canadians

Kidney Foundation of Canada

My decision has been made to go with a living donor and islets as it allows me 1 less surgery as well as a decreased recuperation time in hospital and has a great success rate as does the surgery.

If you would like to be a living donor for both procedures please feel free to send a private message with the subject Living Donor for my transplant co-ordinators contact info. My blood type is B- & I can receive organs from B- & O- only.

If you would like to help by supporting my fundraising campaign you can do so  HERE.

 

Thanks

 

Comments are welcomed!

Holly & Jay

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Kidney Disease And Dying To Live

It’s hard when you’ve lived with a chronic illness all your life, it’s harder being diagnosed later in life with even more health problems and it’s the hardest when people all around you are dying due to complications of the same or similar diseases.

See, yesterday I lost an Uncle to Kidney Disease and Lupus (testing was in process). He went to dialysis treatment as we do every other day, he started feeling bad and was sent to a bigger hospital in another town to be looked after. We aren’t even sure if his sisters made it to the hospital an hour away before he passed?

He seemed to be a healthy man other than the kidney disease and possible Lupus. This is what scares me! I could have a heart attack at any minute without notice. Our bodies go through such stress caused by dialysis and I honestly don’t think anyone knows just how hard it is on your body to have blood removed and put back into your system.

Some of the major issues that we suffer from and that are/can be life-threatening:

• low blood pressure
• muscle cramps
• itching that becomes worse during treatment
• sleep problems due to aching legs and/or sleep apnea
• anemia (low red blood cell count. Thin, water-like blood)
• bone diseases
• high blood pressure (hypertension)
• fluid overload (heart failure, pulmonary adema)
• inflammation of the membrane surrounding the heart (pericarditis)
• high potassium (hyperkalemia) which can cause the heart to stop
• access site complications (infections, ballooning of the vessel walls (aneurysm)
• depression
• mood swings
• anxiety

These are just a few of the many complications that those of us could deal with at any given moment. Not everyone is wheelchair bound and not everyone looks sick. There are many things to learn about Kidney Disease and a lot of things that we have to deal with on a regular basis. Even the healthiest looking people are dealing with some sort of complication so don’t judge others. You never know what they’re going through despite that smile on their face saying that all is good.

If you’d like to know more about this disease please visit the Kidney Foundation of Canada HERE.

To make a donation to my fundraising campaign please visit Go Fund Me.

*This post has not been sponsored. All opinions are those of Frugal Canadian Coupon Mom (J).

Comments are welcomed!

Holly & Jay

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Dialysis And Donations

Hey everyone, I hope you’re enjoying your Summer. It’s been a while since I’ve written about dialysis so I figured that now would be as good a time as any.

Not too much has happened since my last dialysis post. As far as I’ve been told, I’ve completed all the tests that are needed to be put on the transplant list. I’ll know more in August when the dialysis doctor comes to the clinic but things are moving along.

I’ve been suffering from Restless Leg Syndrome for a little over a month now which is something new and I had an episode the other day with extreme chest pain which the nurses thought could be a mild heart attack. I was given a couple of shots of Nitro and the pain eventually subsided. Nothing like this has happened since and I’m hoping it doesn’t happen again!

I’m sure most of you are aware of the struggles that we’re having with the constant traveling we have to do so I decided to contact a few gas companies in our area for some assistance. Of all the ones that we contacted, Irving Oil Company was the only one to respond.
Out of the kindness of their hearts their donations committee sent a gift card to assist with my travel expenses. So to Irving Oil Company we give a huge THANK YOU. The work you do helping people in the communities around you is greatly appreciated.

For more information about Irving Oil please visit their website HERE.

Like Irving Oil on Facebook.

Follow Irving Oil on Twitter.

*This post is an update on the condition of my (J) health and has not been sponsored or endorsed by Irving Oil Company.

Comments are welcomed!

Holly & Jay

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Preparations For A Pancreatic-Kidney Transplant

It’s been awhile since I’ve (J) written about my Chronic Kidney Disease. Life has become extremely busy for me in the last while. The little one started swimming lessons as well as going to school. I still attend dialysis treatment 3 times a week for 4 hrs every time but as we speak or type in this case, I’m currently going through the screening process for a double transplant (pancreatic-kidney transplant).

This involves an appointment on every day that I have free time other than Sunday. Sunday is my resting day for now. While it does take a lot of my time running to appointments, dialysis, lessons and school I couldn’t be happier that I’ll have my life back and that I’ll be able to go swimming and sliding with the little one. Things that I can’t do now.

Unfortunately, all this running costs a lot of money on gas as we live 40 minutes away from my dialysis and 20 minutes away from my appointments. This is making it very difficult to save up money for my meeting with the doctors in Montréal as well as the money needed for my stay in Montréal after the surgeries.

 

I’ve decided to create a page on YouCaring for donations should anyone like to assist. The money raised will be deposited into a savings account to assist with travel expenses to and from Montréal for my transplants.

 

If you would like to make a donation you may do so http://www.youcaring.com/fundraiser-widget.aspx?frid=308513

 

I’d like to say thank-you in advance to anyone who kindly helps make this surgery possible. My family is forever grateful!

Comments are welcomed!

Holly & Jay

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My Journey With Chronic Kidney Disease

 

What is Chronic Kidney Disease (CKD) also known as Chronic Renal Disease? This disease occurs when the kidneys lose function at a progressive rate, usually over a period of months or years. It’s diagnosed when someone is being screened for it especially people who have diabetes as our kidneys are one of the organs that diabetes attacks.

Kidneys are a huge factor in a humans well being because they filter the toxins from our blood. A big problem for those of us suffering from CKD is potassium which can cause you to have a heart attack if there’s too much in your blood. Phosphorus which causes brittle bones as it sucks the calcium out of our bones when we are dialyzed and of course sodium AKA salt which causes us to retain water and it dehydrates the kidneys. All food contains these minerals and can’t always be avoided, however there are many foods that are very high in them and MUST be avoided. There’s a lot of delicious food that we’re unable to eat because of this!

There is hope with kidney transplants and thankfully for those of us with diabetes a pancreatic-kidney transplant. It’s a long grueling process with dialysis treatment and the numerous different tests and meetings for the screening process of a transplant and sometimes we have problems, rightly so, and we feel like throwing in the towel. I hate to say it but these are times when we need encouragement. While it may seem that we have it easy sitting in a chair for 4 hours a day for 3 days a week, we don’t! We feel completely drained somewhat like having the flu. We’re extremely hungry, sore and tired. We get migraines that last for days. We also have palpitations and often suffer from blood pressure drops. We may not show how horrible we feel but on a daily basis we feel like crap. Some days worse than others.

With the screening process taking place for my transplants I’m extremely overwhelmed by the thought of it all and I imagine that I’ll more than likely be a basket case by the time the surgery actually takes place but until then I’m keeping my head up and my thoughts positive that I’ll be able to live a normal life without all the health problems.

☆ This is my journey with Chronic Kidney Disease; Jay

*We are not professionals. This information is solely based on personal experiences and training from Dialysis nurses.

Comments are welcomed!

Holly & Jay

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My Angels My Friends (Dialysis Update)

 

 

It’s going on 4 weeks since my diagnosis of kidney failure and it hasn’t been easy. The travel is a lot for an adult let alone a child but we’re managing and things are slowly falling into place. There’s still quite a bit for me to learn but with the help of many people, I’m getting there! Eating properly isn’t that hard either even though it does sometimes include repetitive meals & food the routine is easier to follow this way.

I recently found out that the Nepherologist thinks that something else may have been the cause of such a drastic change in my kidney function and tests regarding inflammatory diseases such as Lupus have come back negative which I’m thankful for. Now I wait for other results that will determine whether or not I’ll need a kidney biopsy. Fingers crossed that this can be reversed!

 

 

Speaking of those many people who are helping and have helped. I’ve been on Twitter for well over a year and I’ve met many amazing people that I consider friends. Every day I had encouraging messages and notifications that totally helped lift my spirits from these friends but what I didn’t expect was the spirit lifting I would receive in the mail! My friends at PTPA Media Inc. signed a get well card with sweet messages of encouragement and my Kick-Ass blogger friends got together and sent out a signed card as well. I didn’t really want to bring this up but the reason I wanted to mention them is not only because of their warm thoughts but also because of their generous hearts. See, they all got together to help with some of the financial costs of being a dialysis patient on top of the worries while I was in the hospital for the month of August which I am eternally grateful for. I could never thank them enough so I’m putting it out there for the world to see.

 

 

I believe that people come into our lives for a reason and that angels walk amoung us and I have truly found my angels, my friends. If you happen to read this, know that I will always have a place in my heart for you guys. YOU are the meaning of true friends!

Comments are welcomed!

Holly & Jay

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Renal Diet Friendly Recipes

Being on a renal diet is pretty bland unless you know what’s allowed and what isn’t. Having a Celiac diet as well as a Diabetic one on top of the renal diet makes it even more difficult to know what you can eat and unfortunately it’s a rare case to have all three health problems so finding any information on the foods allowed for these diets is slim to none!

Thankfully I’ve found a site that is specifically for Diabetes and Dialysis that has recipes for sauces, deserts, meals and more. While they aren’t gluten-free they definitely can be altered to fit our needs! Seeing as I’m having such a hard time finding proper information for simple meals that are safe for my multiple restrictions that I would share this lovely site to take a little stress out of the lives of others with such rare cases.

You can find this awesome site here.

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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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