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. 

Recipients taking on Traits of Their Donor....

Whomever ends up with this kidney, I would like to apologize. If you end up with my character traits, be prepared to have numerous little scars, bruises, broken dishes, etc, etc... I am a super clumsy person, it seems! 

Once again, I ended up giving blood this week... unfortunately, not to the Red Cross, but to the window and couch where I was cleaning windows. Eeesh.

As for the phenomenon, it is something that I find very interesting. There have been many cases of recipients taking on traits or even having memories from the donor. This is known as (or thought to be known as) Cellular Memory. Many alternative therapists (massage, chiropractor, etc) believe that memories are stored in different areas of the body. I have been told that my low back and hips are my "power area", meaning it's the hardest area for me to let go and allow to release and relax. Apparently it's where I store a lot of my worries and fears. My low back and hips are always tight and always sore, so there may be something to that. Or, it could simply be that I use my glutes to hold me upright instead of my abs!  lol... either way, when I have a massage when my back is the main focus, I am wiped out.

I hope whomever gets my kidney doesn't have too many of my hard memories, but perhaps they will all of a sudden have a great love for animals, or want to play volleyball or want to spend time near the water! 

Now, back to tending to my new stitches. Yup, I'm that clumsy.

No Tests this week....

... and it feels kind of weird. It will be really weird when the last four appointments are finished and we sit and wait for someone to call and say, "There's a match." I must remind myself that it may not happen this round, but at this point, that is the only reality I am willing to face. I have had a good feeling about this from day 1. Perhaps that's simply because I know this is what I need and want to do, but also, I'm hoping, because it's going to happen!

After speaking with the psychiatrist and not being asked the questions I thought he would ask, I've been thinking more and more about those questions. I think this is the hardest part of the entire procedure. The tests are simple really, the only real discomfort has been going without coffee until 10:00 after being up at 5:00. That's really a mosquito bite in a world of dangerous insects. I'm even assuming that, yes, there will be some pain and a major slow down in activities for a little while when the surgery happens, but again, perhaps we are up to a bee sting?

What I have been finding stressful is the "what if's," or perhaps more "What if not's". I don't think there is a person out there who is ready or willing to face those questions. I am hoping there is never a need to, but I do think, for anyone who is going to be a part of this process, those are thoughts you should have, recognize and be ready for. My problem is moving past the recognize phase. I know there is no need to dwell on those issues, and simply think about the positive outcomes, but I think worry for my friend takes over.

I am going to work on thinking of only the positive outcomes for now, as I am a firm believer in not only mindfulness, but also in, "What you put out to the Universe is what comes back." Not that it would necessarily come back to me, just come back! Put out positive vibes and thoughts and good things happen around you! Let's hope that will happen. I ask everyone who is reading this to do the same!!

Psychiatrist Consult - Check

I'm not really sure why this appointment made me nervous, perhaps because we are all a little crazy, aren't we? I was expecting to be asked questions such as, "Why do you want to do this?"  "What if it is not successful?"  "Do you have a good support network?" etc..

What he asked was, "Was it difficult to make this decision?"
My answer to that was, "No!" I told him that when I realized I could be a live organ donor, my only disappointing or negative thought was, "I wish I had realized this sooner!"  I wish I had been able to start this process a long time ago, but we can't look backwards, only forwards.

He also asked me about my childhood, if I had suffered any trauma or abuse. He asked if I had any drug or alcohol dependency issues, asked about life and stress and if I had ever been depressed. The very fact that I made it through that appointment with a smile on my face means a lot! He was wonderful to sit and chat with, had a little advice about a perscription I am currently on and as we talked he said it sounds like I practice mindfullness. I suppose I do.

I am a firm believer, now, that every emotion has a right to be felt and you have a right to feel them. Every tough day or good day should be recognized and appreciated. Stuffing down the negative feelings or believing that you should feel okay, does not really get you ahead in the long run. If you are feeling low, allow yourself to feel it. Recognize it and move on! Dr. Bourgon suggested that sometimes over-assurance can lead to more anxiety, and really... who needs that? :) Mindfullness is simply about being present with your emotions, living in that particular moment and dealing with it. Acceptance is key. Ahhhh, if I had only been that smart as a child. :)

So, next week, I am appointment free. The following week I have three appointments on the 23rd. I am in for a CT Scan late morning, then early afternoon I have the Social Worker Consultation, then the Surgical Consultation. The last appointment, on April 29 (my brithday) is with the Nephrologist. I am still unsure why I am not to drink any caffienated beverages before I see him, I just know that I must have my coffee into me by 8:00! No problem!