Tag Archives: peritoneal dialysis

Have mercy, been waitin’ for the (transplant) bus…

“Have mercy, been waitin’ for the bus all day.”

I’m in a bit of a mood for some blues today. This month of October was my second time to participate in the Living Donor Paired Exchange (LDPE) program, where a database of incompatible kidney donor-recipient pairs is collected from across Canada in order to find as many matches as possible. Unfortunately, I was again left without a match after the program was run, left still “waitin’ for the (transplant) bus,” as it were.

With two potential incompatible donors on my side, the transplant unit coordinator here in London was confident that a match would be found this time. At this point, all she or I know is that there was no match. She is going to inquire a little further to find out more about why we are striking out. I don’t know that such knowledge will make a huge difference to the next program run in February, but knowledge does provide some solace.

Yes, I’m disappointed, but I began to realize at a more “existential” level last time that it could be years before I get a transplant, even with the wonderful services of the LDPE program. Even with the disappointment, though, I am grateful for my situation. I have reasonably good health otherwise; I have good medical care, which includes the option of peritoneal dialysis; I have my financial needs met; I have a supportive family and community of friends. In many respects, I am blessed.

Not to get overly philosophical here, but one thing that chronic kidney disease reminds me of is that I am not autonomous, I am not independent. I depend on so very many people, from those as near as my family to the medical researcher on the other side of the world who may be discovering a breakthrough in organ transplantation as we speak, and many others in between. Again, I am blessed, and I am grateful.

Grace and peace…

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#Video – CBC Go Public: Organ exchange program slow to deliver on promise to man in need of a kidney, family says

I’m reposting this from CBC’s Go Public segment. Go Public is generally a program that attempts to go to bat for a customer who has been wronged by a company. In this case, we have a situation where the mother-in-law of a kidney disease patient donated a kidney as part of the Living Donor Paired Exchange program, but her son-in-law was unable to receive a kidney at the same time due to illness. Even though he has since recovered, he is still waiting for a kidney.

This is a timely story, just appearing today, Thanksgiving Monday, October 12. This month I am once again a potential beneficiary of the Living Donor Paired Exchange program. Sometime within the next couple of weeks I expect to hear whether a match has been found, and if so, then I too could be the recipient of a donated kidney from a living donor.

GO PUBLIC

Organ exchange program slow to deliver on promise to man in need of a kidney, family says

A national program that matches living kidney donors with recipients hasn’t delivered on a promise after a woman donated a kidney to a stranger so her ailing son-in-law could get a much-needed transplant, the family says.

CBC News investigates  

Estella Jamieson agreed to donate one of her kidneys, only after being assured her son-in-law would soon get a transplant. She says she decided to contact Go Public because he is still waiting.

“I know I helped somebody and I’m glad that family is going good, but I just feel if I would have waited I could have helped my own family more,” a teary Jamieson says.

Jamieson and her son-in-law, Jeff Pike, signed up for the Living Kidney Donor Paired Exchange Program a couple of years ago. It’s run by Canadian Blood Services along with provincial transplant programs.

The program matches people in need of a kidney with a stranger of the same blood type willing to donate. But, in order to get a kidney, the recipient needs a partner willing to donate a kidney to someone else as part of what’s called a donor chain.

Click here to continue reading

The Waiting is Over…For Now

Thanks for all your words of support and prayers on my behalf. I just got the news today that the Living Donor Paired Exchange (LDPE) program did not come up with a match for me this time. Assuming we remain eligible, both I and my incompatible donor will be part of the matching run during the next quarter.

There are two other alternatives:

1. Someone who is compatible with me could step forward and offer to donate a kidney directly to me.

2. A deceased donor could be a match for me. I remain on the deceased donor waiting list even while the LDPE program continues to try to make a match for me and all the others who are in need of a kidney transplant.

In the meantime, I continue with nightly peritoneal dialysis, which is hardly the worst thing in the world….

Might I suggest that, if you haven’t done so already, please sign up as an organ and tissue donor according to the protocols in your particular province. In Ontario, go to beadonor.ca to register or confirm your status. Don’t assume that something you did when you last updated your driver’s licence is still valid. Almost all provinces have moved to an online registration system. It only takes two minutes to register.

Clock is ticking for kidney disease patients

This article comes from my hometown newspaper, The Chilliwack Progress. The author, Jessica Peters, brings to light a number of important points when it comes to kidney disease.

1. Kidney failure is a progressive condition. The body has a remarkable ability to cope with declining kidney function without producing symptoms that are easily noticeable. Cameron Buchanan, the person at the centre of the story was down to 10 percent kidney function before he became aware of the seriousness of his situation.

2. Kidney transplants are the most common of organ transplants and the success rate for such transplants is high.

3. A kidney from a living donor provides the best outcome.

4. A match for donation, either living or deceased, is not always easy. As the article indicates, one man had been waiting on dialysis for eight years.

5. In British Columbia, 364 out of the 465 people in need of an organ transplant are waiting for a kidney transplant. The average wait time for a kidney transplant in BC is 4.8 years.

6. Many people say they are willing to donate their organs upon their death, but in BC, only 20 percent have registered as organ donors.

7. The opt-in vs. opt-out choice regarding deceased organ donation continues to be a live question. As the article notes, on May 1 there will be a summit in Vancouver on the merits of “assumed” consent for deceased organ donation.

8. Kidney disease is often a side effect of other diseases, for example, untreated high blood pressure or, as in Buchanan’s case, diabetes.

9. The costs to support a patient who has received a transplanted kidney are much less than to provide a person with life-sustaining dialysis therapy.

10. Potential living kidney donors go through a rigorous and confidential screening process and can change their mind at any time in the process, for any reason.

Clock is ticking for kidney disease patients

Cameron Buchanan, who's on kidney dialysis, and his mother Mary Jean are hoping more people will sign up to be a living donor to help shorten the wait list for those in need of organs. JENNA HAUCK/ PROGRESS

Cameron Buchanan, who’s on kidney dialysis, and his mother Mary Jean are hoping more people will sign up to be a living donor to help shorten the wait list for those in need of organs. JENNA HAUCK/ PROGRESS

When Cameron Buchanan found out his kidneys were failing, he was already in stage four of kidney disease.

It came as a shock to him, like it does with many kidney disease patients.

“I didn’t feel any effects at that time,” he said. But blood tests showed that his kidneys were nearing the end of their lifespan.

Soon he began to feel some of the first noticeable symptoms, including fatigue. At that point, his kidneys had about 10 per cent lifespan left. Then one day his wife, Patti, realized he wasn’t making any sense. He was rushed to the hospital and tests showed he was down to six per cent kidney function.

It was time for dialysis, and planning for an eventual kidney transplant surgery began.

Now, after two and a half years of dialysis and learning to cope with the treatment’s side effects, 45-year-old Buchanan is looking for organ donors — for himself and for those he’s met along the way.

Kidneys are the most commonly transplanted organs in B.C., and the success rate is high for those who make it to surgery. Kidneys from living donors provide the best outcomes, but finding the right match is difficult. Of all Buchanan’s siblings, there are no suitable donors. His mom, Mary Jean Buchanan, is hoping someone in the community will step up to help her son.

To read more, click here.

A Day Off – Revisited

I need to get one of these shirts.

I need to get one of these shirts.

Hey, more good news. Yesterday I got another one of those magical phone calls from the Peritoneal Dialysis Clinic. Evidently, I’m doing well enough on dialysis and my residual kidney function that I can now take one day off from dialysis every week, as opposed to the once-every-two-weeks regimen that I was on for the last six weeks. The toxins that build up in my body are making their way out, as they should. My wife suggested that perhaps the dialysis is relieving the stress on my kidneys sufficiently that they are functioning better than they did before dialysis. I don’t think it works that way, unfortunately, but another day off is good news.

In some sadder news, my Uncle George (uncle by marriage, so our mutual kidney problems were not inherited) was laid to rest on Tuesday in Winnipeg. He was 88 years old, so he lived a full life. It hit a bit close to home, though, because in his last weeks, he was on hemodialysis. Unfortunately for him, he experienced severe pain every time he underwent treatment. The alternative chosen was conservative care, letting nature take its course. Now he rests in peace in the presence of his Lord. Goodbye, Uncle George. You were a treasure.

#Listen – Cool People Podcast

My good friend and neighbour, Robert Chazz Chute, is a prolific author who also hosts the Cool People Podcast. Last weekend, he had me over to his place for a chat that has now been posted on his podcast website, http://coolpeoplepodcast.com/. We discuss religion, Good and Evil, God, restorative justice, human behaviour and my life with kidney disease. Have a listen. You can go to the website or search for Cool People Podcast on your podcast app. Check out a couple of his other websites as well: http://chazzwrites.com/, and http://allthatchazz.com/.

POD-Chazz-2-300x300

 

If it ain’t one thing, it’s another

Readers of a certain age may recall that line from one of the late great Gilda Radner’s characters, Roseanne Roseannadanna.

As the line applies to me, it means that the impact of kidney disease is not limited simply to kidney function. Because the kidneys don’t fully perform the job they are supposed to, certain other problems arise. High blood pressure and high cholesterol are well known and well controlled by medication. However, last night I was reminded of another problem that is usually under control, but not always.

Gout.

As last night wore on and became almost entirely devoid of sleep, the joint that connects the big toe on my right foot to the rest of my foot, began to throb and grow increasingly sensitive to touch, including the touch of the bed sheet. I resorted to hanging the offending foot over the side of the bed so that it wasn’t touching anything but air. Eventually, I drifted off to sleep at about the time I would normally be thinking about getting up.

I have some drugs prescribed for this sort of occasional flare up, but it’s going to take a few days before this whole thing goes away.

I was a bit hesitant to write about this. I really don’t want to come across as someone whining about his situation all the time. As unhappy a situation as kidney disease and dialysis is, because I have access to excellent medical care, I can make my way through this. It’s not quite accurate to say that this is a “first world problem” because people in all corners of the world deal with kidney disease. But, because I have the supports in place to help me to live despite the very poor function of my kidneys, I have the luxury of complaining about gout. Someone without access to adequate health care would simply be preparing to die, instead of waiting hopefully for a kidney transplant.

I don’t necessarily have a prayer I recite daily to get me through this, but if I did, it would surely be, “Lord, help me to maintain perspective.”

With that prayer in mind, here are a couple of comics about gout:

goutbeast

Goutcartoon10_MythWealthyCLR