The BIG Ask

This post was difficult to write. However, I hope you read it through. If not for me, for someone else.

I wanted to take a few days (ok…weeks) to process what I learned at an information session I attended a while ago. It was at the Renal Clinic; its purpose, to let pre-dialysis patients get together with all the members of the Renal Clinic team, to have an opportunity to meet with others who are on the same journey and to be informed about and ask questions about anything to do with what lies ahead as our kidney function inevitably decreases and we have to make decisions regarding the options available.

For kidney patients, here are the options:

Do you want to do dialysis?
No – You can choose to not do dialysis and live out your life as comfortably as possible until your kidneys fail completely and you die.
Yes

If yes, which kind of dialysis do you want to do?
PD (Peritoneal Dialysis) – A catheter is surgically inserted into your abdominal cavity and a solution is filtered by your peritoneum (lining of the abdomen) which eliminates waste products. This dialysis is performed on a daily basis; for many, it is done at night while they sleep. It can be performed at home.
Hemo(Blood) Dialysis – This is the filtration of waste products from the blood. It can be performed at home or in hospital.
a. At Home –  A fistula (surgical connection between a vein and an artery, usually in the wrist) is the site where a needle is inserted for your blood to leave the body, be filtered and returned to the body. This method involves a machine and a filtration system for your water as well. It can take up a lot of room in your home including storage of supplies and a water filtration system.
b.  In Hospital – You visit a hospital dialysis site 3 times a week. A fistula is still necessary for the needle insertion. Dialysis usually takes 3 – 4 hours each session, not including travel time to and from the hospital. Everything is done by hospital staff.

For me, it looks like this:

Do you want to do dialysis?
Yes

Which kind of dialysis do you want to do?
Here my options are limited. Because I have had several operations over the years (C-section, gallbladder and hysterectomy), my abdominal lining is compromised due to scar tissue. It will not be as efficient a filter as someone who has not had any abdominal operations. Also, because my kidneys are so large, one of them would have to be removed to make room for the catheter. This, of course, would involve another surgery and another scar in my peritoneum. So PD is not an option for me. This leaves hemo dialysis.

Hemo Dialysis, for me, could be done at home. But I have a small house with aged electrical. We are also on a dug well, and after the water shortage of 2016, I don’t feel comfortable using our well as a cog in the dialysis wheel. And this form of dialysis uses a lot of water. Another thing is that you have to have someone with you while setting up for each dialysis session. You can’t be alone when setting yourself up (and finishing) each session with needles and solutions for safety reasons. And everything has to be done in a sterile manner – no dogs around the equipment (including my girl Pippa). I would prefer not to do this option.
The only option left is hemo dialysis done in hospital. The nearest dialysis unit for me is Yarmouth Hospital. It’s a 1-hour drive to and a 1-hour drive from the hospital with a 3 – 4 hour dialysis session in between. I will choose this option if I have to. However, being on the road more in the last few months for appointments, I have seen some pretty hair-raising examples of bad driving, and I would rather stay off the roads as much as possible. But, since my options are limited, I would have to do the drive in order to survive.

But there is another option. Back to the information session…

20180424_125031.jpgFor me, this session was eye-opening. My nephrologist was the first to speak. He is a very sweet man; a caring doctor who is very patient with any questions you have, and explains things in easy terms. For example, he said that many people who have kidney disease are asymptomatic and don’t realize they have the disease until their renal function is very low or their kidneys have stopped working. He likened it to a car in that the vehicle will still run whether it has a full tank or 1/4-tank of gas. It is only when the gas is gone that the car will stop completely. I identified with that since my renal function is low, but I really have no symptoms. Symptoms can include, swollen feet and ankles, nausea, diarrhea, itchy skin, leg cramps, tiredness, etc. I get tired more easily, but don’t we all?

The main topic my nephrologist talked about was donors. I hope I remember the statistics correctly, but I believe he said that there are 200,000 kidney transplants performed every year. He didn’t say if that was just in Canada, in North America or worldwide. But regardless, he said that that is only about 10% of the number of people who are waiting for a kidney transplant. He is of the belief that no one should have to wait for a kidney transplant because everybody has two kidneys. “So there should be enough to go around” he said with a smile. And I admit that his saying that made me think. He is a strong advocate for live donors. What is a live donor? So very glad you asked. A live donor (also called a living donor) is someone living who donates one of their kidneys. Studies indicate that kidney transplants from live donors are more successful (90-95%) than those from deceased donors (80-85%). As well, kidney transplants performed before the patient has to be on dialysis runs a slightly better chance of success.

To put it out there in the universe, I am asking for a kidney.

All-I-really-want...

The process of receiving a kidney from a live donor can take up to a year or more because of the tests involved and preparation prior to the transplant. However, a live donor gives a kidney patient freedom. Freedom to live as close to a normal life as possible without being tethered to a dialysis machine.

So there…I’ve asked The BIG Ask. I had to swallow my pride and just come out and ask for something so very precious. The thing is, as I stated above, it takes about a year before the actual transplant could be done. I have about that much or maybe less time before I have to go on dialysis. So the sooner, the better.

But you may be thinking, “Why should I donate my kidney to you?” Good point! There is a lot involved – time, travel, an operation. But the risks to a donor are low. The thing is, I’m not just asking for me. There are thousands of people just like me, hoping for a kidney. And, mind you, it’s not a simple means to an end. A transplant poses its own risks to the recipient – heavy duty anti-rejection drugs, side-effects such as a compromised immune system, some cancers and even possible rejection. But freedom from dialysis and an improved quality of life for 15-20 years is definitely worth those risks.

20180429_133837

If you would like to learn more about becoming a living donor, please contact the Kidney Foundation of Canada at www.kidney.ca, an organ transplant centre, or talk to your family doctor.

You can even talk to me. 🙂

By the way, my blood type is O positive.

15 thoughts on “The BIG Ask

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    1. Thank you. It is a tough subject, organ donation, whether it is talking about being a living donor or signing your donor card. Too many people are in need. I hope to raise awareness about this subject regardless of how my situation unfolds.

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  1. I have one kidney affected with lymphoma. And the other is OK. I am not even sure I can be an “anything:” donor because my form of cancer is a blood cancer. I am sorry, Lisa. I hope someone steps up. Are you on a recipient list?

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    1. April, you are sweet. But you brought up a good point. Not everyone can be a donor. Factors include your current health, whether you take medication(s) and what kind, etc. It is a huge deal to take that step and give up a kidney. Many feel that they may need theirs in the future, or they just don’t want to go through an operation.

      As to a recipient list? No, I am not on a list yet because I am not on dialysis yet. And it can take 4-5 years or longer to get a donor that way, usually a non-living donor. I am just moving forward, being brave and simply asking for a donor.

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  2. I am not offering a kidney (for my own personal reasons) but if the time comes that you do need dialysis, I will gladly be your chauffer.

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  3. I’m so sorry this is happenong to you. ❤
    I have a question…..you mentioned that your blood type is “O”. Does your donor have to have the same blood type? Sorry if this is a silly question, but I’ve never considered kidney donation before.

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    1. Thanks, Rebecca. ❤
      Your doctor can answer this better than me. However, an O+ recipient can recieve (organs, blood) from O+ or O- donors.

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  4. Lisa you are so brave not only for you , but for so many others . I pray you get a positive response very soon ❤️

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