You don't know Craig???

Well, here he is...

He's nearly 40 (or are you already??), he's tall, works part time as a firefighter with Ottawa Fire Services....

He's married to a wonderful woman named Heather, and they are perfect together...

...maybe because she accepts that he's crazy?

He works tirelessly for the Kidney Foundation and organ donation....

He has great friends... 

He has a large family that loves him....

And this is his kidney, when he is able to do his dialysis.... 

Please consider being a live organ donor... if you are not a match, please consider the paired program. Lives depend on it. 

It's in you to give...    Living Donation (click here)

What now?

I was hoping to be able to speak to Craig before his team spoke to him so I got in touch and asked if he would mind if I came for a visit on Monday (29th). Of course he said sure "and bring the dogs." I was down East and on the way home the car broke down in New Hampshire. We ended up having to stay until Tuesday evening and I knew, by then, his team would likely have told him what was going on. At first, I was told we weren't likely to be leaving New Hampshire until Thursday so I sent him a message to let him know what had been decided. I needed him to know why I was no longer a candidate, but really wanted it to come from me first, preferably face to face. 

Craig, being Craig, said it didn't matter how I contacted him and was still thankful for the effort, although I can't imagine the blow this must have been. I know it was out of my control, but that does not change the impact of the outcome. 

it's unfortunate that the CT Scan is usually where people are eliminated from the program, since it is the last test to be done, but it is also the most expensive, hardest to book, etc, so it is only done if necessary.  At least one other of the people going through the program on his behalf was also eliminated at this point. 

My only advice at this point, for anyone going through the process, is to know that the outcome is out of your control. If you are able to proceed with the program and become a donor, that's fantastic, if not, you've done what you can. 

I'm looking forward to getting together with Craig, letting our dogs play and continuing to help with the search for a donor. I have committed to sharing the information until 5 more people have come forward to be tested (but I won't stop there of course), and also to remind those who are not a match for Craig directly, they can still continue with the Paired Program and still find him a kidney! If you're willing to donate directly, you should still be willing to donate indirectly! Think about it. :)

So, I will now be a control for the 5 year study on the impact of kidney donation. Those who have donated will be followed and the impact on them will be tracked; physical, mental, financial, and of course their overall health. I will have my blood pressure taken every day for two weeks, give blood and urine samples and then continue with the blood and urine yearly for 5 years. 

Please consider living donation....

Social Worker and Surgical Consults

I had the Social worker and Surgical consults on April 23rd (same day as the CT Scan). I haven't posted about those appointments for a couple of reasons; one I drove to New Brunswick to pick up my daughter and on the way home, the car broke down in Gorham, New Hampshire. If you have to be "stuck" somewhere, the Mount Washington Valley is the place to be. 

The other reason is that I wanted to chat with Craig first.

The Social Work appointment was the second appointment of the day. Her name is Heather, and she is wonderful. Very kind, offered to speak with my daughter if she has any concerns and offered her services if I needed to come back and speak with her again. The appointment was actually very relaxing. She asked me a couple of questions that I hadn't thought about, such as; "Who is your power of attorney?" Oh... no idea. So, please consider that. She asked about insurance, phone numbers, etc. She would be the person making phone calls if something doesn't go as planned or if there are any questions from the doctor while you are in surgery. Sometimes even with all of the tests, there could be something unexpected. She also asked about work, sick days, compensation. If you have a job with limited sick time, you will can apply for compensation through the Trillium program. You can also save all receipts for parking, hotels (if you have to go elsewhere), etc and be reimbursed, to a certain amount. 

The last appointment of the day was with the Surgeon. I'm sorry I do not remember his name, it was not the appointment I was hoping for. Brenda came in and spoke with me first to give me the results from the renal scan and the CT Scan. The Renal scan showed my left kidney was quite a bit larger than the right kidney. The left is functioning at 62% and left is 38%. Normal is 50/50, of course. They generally still accept 48/52, but any more disparity and they determine this to be a little too risky for the donor and the recipient.  The CT Scan was the final determining factor. It showed the right kidney (smaller), has 3 arteries in and one vien out. Normal is one of each. If the kidneys were both in great shape and operating well, they may take one with two arteries, any more than that, and it becomes dangerous, the surgery becomes much longer and more complicated. 

The surgeon came in to see me and went over the same results. He said they would normally take the smaller kidney and leave the donor with the larger, but in my case, that is not possible. They cannot remove the kidney with three arteries and therefore would leave me with just over 1/3 kidney function if they went ahead with the surgery. He left the room for a moment saying, "I don't think we'll get you to sign a consent form".... "Diane??"  Then came back and said, "No, we aren't going to put you through that, there isn't a surgeon in our program and none others that I know of that would leave you with that little function." He explained that because the kidney is already smaller and doing so much less of the work, there is a chance that it will not step up to the plate and do more work if the other is removed. 

He left me with a tiny glimmer of hope when we left the appointment and said they were having a meeting the next day to discuss this case and see if I would be able to continue in the program. Upon leaving, Mary came out to speak to me, her first words were, "I'm so sorry Sue." At that point I knew this was the end of the road for me and the Paired Donor Program. I received the call the next day from Brenda that I would in fact, not be carrying on with the program and my appointment with the nephrologist on the 29th was cancelled. 

I can't really explain how this felt. I was blown away, surprised, nauseous, disappointed, but above all, I was really hoping that this would be the opportunity Craig needed for a kidney. Very unfortunate and unbelievable. 

Next was the CT Scan...

I also had my social worker and surgical consults today, but I will post about those after...
.... all in one day. A nice way to get through the appointments quickly.

To top the day off, I was able to meet Deanna who worked her butt off to make sure I had the appointments I needed. Thanks Deanna!

My first appointment was the CT Scan, thankfully, since I had to be fasted for 4 hours. Not a big deal, since I was able to have coffee and food first thing in the morning, I just had to fast before 11:40! I was told the injection used would make me feel very hot, leave a metallic taste in my mouth and make me feel like I had to pee, or that perhaps I was peeing. Interesting. 

First, they insert an IV so when the time comes they simply hook you up and inject the contrast for the imaging. First, I had some images done without the dye. The machine does all the work. I lay on the table and it moves you into the machine, tells you to hold your breath as it whirs around you. The longest count to hold your breath is 5. It's easy, there is no claustrophobia issues as it's open at either end.  

The dye is then injected and believe me, when they tell you of the side effects, it's true. It comes on quickly .... very quickly. First my hands were on fire, then the roof of my mouth, along with the metallic taste. Then I truly felt like I was going to pee my pants. Oh my. It was so weird it was almost a little scary, then it all of a sudden was gone. Thank goodness. The taste in my mouth stayed, but I am thinking it was more in my head than anything else at that point. Kind of like thinking you can taste skunk because you've driven past one. The feeling of heat in the roof of my mouth lingered as well, but again, I think that was less reality and more just lingering thoughts. It is not painful, it's just strange. 

After a few more pictures I was off to the waiting room to sit it out and make sure I didn't have an allergic reaction to the contrast. This is done with the IV in place, assuming they will manage a reaction via IV. After approximately 15 minutes the IV is removed and I was told "hold the bandage on it for 5 minutes" so that it didn't bleed excessively. For some reason I assumed it was like having blood taken. Nope. The IV is a lot larger than a needle for blood work. As you can see above, I didn't exactly listen. I then helped myself to another bandage and held it for the full 5 minutes before leaving. No problem. 

The whole process took about 45 minutes. The only thing I had to do afterwards was drink a lot of water to flush out the dye. As usual, nothing compare to what others have been through and go through daily with kidney disease.

If these tests don't seem too tough and you can imagine yourself as a live kidney donor, please consult your local hospital renal program. If you want to be considered for Craig Dunbar, please comment and I will put you in touch with Mary and Brenda at the Riverside Hospital. Donors are desperately needed.