Teaching Session...

I went to the Teaching Session on March 21^st. As I had mentioned before, I did things out of order a little, as they wanted to see right away if I was a match for Craig.  The Teaching session goes through all of the steps of the process, some I had been through already. Mary and Brenda were very upfront and informative about the process as it went, so the Teaching Session was added information, stats, and likelihoods of things happening.

Some of the information was very encouraging; Recipients finding kidneys at 100% antibodies and are now living well. Better ability to find a match with living donors, kidneys lasting longer, healthier kidneys, and less chance of rejection with living donors. All very good news! Of course there are the down sides; first and foremost, not being able to find a match for the recipient. But, there are potential downsides for the donor as well. There is the possibility of finding out you have a health issue you were not aware of, and apparently some of the compatibility tests can predict paternity/maternity. Donors have found out, they were adopted or both of their parents were not their “biological” parents. Wow, what a way to find out!  Apparently this testing is part of the matching process and takes hours each time. It’s tested and re-tested to be sure. Some siblings will have no antigens in common, while others have 6 (best case). Strangers can also be genetically matched, as some antigens are very common. It’s a very interesting process! 

Then there are the antibodies. The recipients blood cannot have any antibodies against the donor’s blood. In some cases a mother cannot receive a kidney from a child, as she may have developed antibodies against him/her while pregnant. It’s odd that the mother would treat the baby as a foreign body, but I guess it is.

There are reasons a potential donor may be found ineligible; the anatomy of the kidney, or the anatomy of the other organs making it impossible to remove the kidney, health issues, etc. It basically has to be good for the donor and the recipient.  They will not sacrifice the one person’s health for another’s.

At this point, I am beginning Phase 2 of the process. I have completed Phase 1 and the test results are all in. So far, all is good. I have no diseases; infectious or otherwise, my heart is good, my kidneys are both there, my chest x-ray was fine, no lumps in the boobs (that shouldn’t be there), and basically everything is normal. I have my first Phase 2 appointment on April 5^th, the Renal scan. It will take approximately an hour. The only part of it that sounds… icky… is the “injection of radioactive tracers”. Eeeks.  It sounds like the Renal Scan is very interesting. I’ll write about that when the time comes. It’s going to test my overall kidney function. I was trying to find a picture of a renal scan, but I really wasn't sure what google was giving me, some were with Lasik, some were of someone with cancer, I didn't want to post something that was inaccurate... then I found this one. Uhhhh...??

I’ll get into the recovery and complications of the surgery later…. For now, I am going to concentrate on improving my fitness and eating as well as possible. I want to be a good candidate, and I want to heal well and quickly afterwards.  At the bottom of one of the pages, I had written, “6 weeks for the tissues to heal fully, and a few more weeks to build strength back up, “ which was a quote from Mary Rada. Underneath it I wrote, "Get Stronger Now!" These are pictures of me from about 5 years ago. Working towards this goal again will keep me busy while waiting for matches to be found. 

Remainder of Phase 1 Testing

This week I had begun to feel a little nervousness, I think because the weeks are winding down until the next National Cross match for the paired program. I'm not nervous for me, I'm sure thousands of people have life saving surgery every day, and me, well, I'm just going in and coming out a tiny bit lighter, life not needing to be saved. Maybe I will be nervous about the surgery when the time comes, but I do hope it is sooner than later.

At the teaching session yesterday, Brenda mentioned to me again that we may not make it in time for May, so I told her to go ahead and book the Phase 2 appointments and just tell me where to be and when! It's not a big deal to do a little extra driving or go into the hospital more than a couple of times. They try to block them all together, but if it's faster to make multiple trips, than that's fine with me.

My day started with picking up the requisitions on the 5th floor, then off I go to the Main level to the lab. Yesterday's blood work was a form of DNA test, checking the antigens, Non-infectious diseases and infectious diseases (Hep B and C, HIV, HTLV, Syphilis) and of course chicken pox. If this is transferred through the kidney, it could be fatal to the recipient. Not much point in that happening!

Then off to the xray department for a quick two panel chest xray, and then on to the Cardiology department for an ECG. None of these tests were the least bit invasive, and the only one that took any amount of time was the blood work, but all tolled, I was finished in less than two hours. I was worried I would have to do some of them after the Teaching Session, but Phew, no worries.

As you can probably tell, I stopped asking permission to take pictures! lol I only posted a part of this photo, because Lord knows what kind of information is on the screen and I had a hard time seeing it after the photo was taken. The technicians were all nice enough, but I figure if I plead ignorance, it's easier... "Easier to beg forgiveness than to ask permission".

The Teaching Session was very interesting. It was odd that it was only women, but apparently they have had men come out to them as well. As a side note, there was a woman there who had lived the first part of her life in Tanzania, and I was really wishing I had my camera. She was very nice, so I assumed that she may let me take a picture. Her hands were beautiful! (I love to photograph hands).

Instead of making a very long post, I'll explain the Teaching Session later.  So far, Phase 1 has consisted of;

• Questionaire
• Consents
• Height, weight and blood pressure on both arms
• Teaching session
• Screening of blood and urine (blood three different times... maybe 4)
• 2 x 24 hour urine collection
• Letter to family MD - which resulted in pap, breast exam, mammogram and TB test
• Tissue typing and Crossmatch (which we did first because it was for a known patient - Craig)
• ECG and Chest X-ray
• Abdominal Ultrasound

It sounds like a lot, but it didn't take very much time at all. I was surprised at how quickly my tests were booked. The only results I'm waiting for now are the last blood work, x-ray and ecg, everything else was good.



Is that my Ultrasound or the Moon Landing?

Yesterday was my return to the doctor's office to see the nurse about my TB injection. She said the same thing I did, "It's tough to see where it is." Although I think my words were more along these lines, "It's hard to distinguish it from the other marks on my arm." I was in and out of there in mere minutes with a card stating I am Tuberculosis free! Excellent!

On to the Ultrasound this morning at the Civic hospital. I was told there was no need to come in any earlier than 7:00, as the technician is not there before that. I got up, made my coffee, poured my warm water for lemon and then realized, "No food or drink".  Ugh!! So, with a very dry mouth and the headache coming, off I went. I found a parking spot relatively easily, and made my way into the hospital. It's a little confusing once inside, even though most things are marked, the Emergency radiology department (where they do the ultrasounds that time of day) is tough to find. I arrived just as the lady at the desk was booting up the computer, great timing. I don't think my bum was in the chair for more than a minute when the tech came out to get me. I asked her right away if there was a chance she was from the Maritimes!  lol  I explained that the other two technicians I saw this week were from Newfoundland and New Brunswick and as I was from Nova Scotia, it would have been great if she was from PEI to round out the Atlantic Provinces. She was hilarioius, "I"m from Prince Edward County, does that count?" My reply... "I'll take it!"

The ultrasound was painless of course, but did take a while. A student did most of the work, she was lovely! It was pretty comfortable and they were very friendly, can't ask for much better than that (the picture above is not me of course, I was not to take pictures again). I will be interested to find out what the doctor puts in the notes, as there was a little "something" on the right side, that they both decided simply looked like a pyramid. I'm assuming that is supposed to be there. So back to crossing fingers and hoping everything is normal. I was looking at the images now and then, and thought how bizarre they look... as the title infers, looks a little like the moon's surface!

One image in particular, mind you, looked like a baby ultrasound (taken from my upper right quadrant.. lol). She said, "I assure you, that's a kidney."  Excellent! (Clearly these two look nothing alike... not my baby and not my kidney)!

  

Please spare a thought for my pal Craig and that this May we find a match in the paired program or someone else getting tested is a match. The more the better, just in case someone gets knocked out of the running for some reason. One step closer. Next week is the information session, CT Scan and Chest X-ray, then on to the consults!

Below are two pictures of Craig. The first is him doing dialysis. I remind myself that anything I "feel" or "go through" is really a piece of cake! The other is Craig and his wonderful wife Heather!

Boob Squishing and the Easterners!

Today was Boob Squishing day. I was expecting a lot of pain and pressure, but it really wasn't so bad. There was some pressure, but I'll be honest, if they weren't hidden by a bra, you'd know they are the perfect shape for this machine!  My appointment was at 15:00 and I was asked to arrive 15 minutes early to fill out some paperwork. I was in with the technician by just a few minutes after 15:00. I was asked to disrobe from the waist up, and bring my belongings with me. In I went with the technician, she showed me the machine (and wouldn't let me take a picture, but she was so apologetic about it, and of course I completely understood, those crazy privacy laws!). It looked a little daunting, but she was wonderful about the whole thing and made me very comfortable. 

Because I wasn't able to get a picture, the technician (I really wish I could remember her name) told me to remember Hologic and find a pic on line. I did and here it is. This is the exact machine that is used there. The boob is squished between the black plate and the plastic "tray" above it. It uses a lot of pressure, over 20 lbs of pressure. I most I noticed for sure was 24.6 lbs, and it squashes the boob pretty thin. I won't be saying how thin!

                                   

              

Six images, three on each side, and that was it. Straight on, sideways and on a bit of an angle. I'm sure if I was more "ample", it would be an issue, but nothing to worry about here. Now fingers crossed there will be no surprises.  I really enjoyed the plaque that was in the changing room;

Thursday I'm heading back to have the TB injection looked at to see if there was a reaction. Again, so far, so good. On Friday will be the ultrasound, I'll be there at 6:30, ultrasound by 7:00! Now, if the ultrasound technician is from PEI, the Easterners connection will be complete! My x-ray technician was from Newfoundland. He heard me speak and asked me right away where I was from, when he commented on my answer, I knew right away he was from Newfoundland! Today, my mammogram technician had a great accent, so it was my turn to ask. Sure enough, she's from New Brunswick. When I asked where, she said, "Oh, it's a little town between Fredricton and Moncton that most people haven't heard of; Chipman."  hah, yup, I know Chipman. So, with me from Nova Scotia, if the ultrasound tech is from PEI, the week will be complete! 

TB Test (and an unrelated x-ray)

I can barely see where the TB injection went in! Woot!  I ended up with an extra “test” this week! A bit of a clumsy me story. I dropped a glass on the oddly hard tile floor in my kitchen, and of course it smashed into many pieces. When reaching for the broom behind the garbage can and lifting it over, my hand went directly into the ceiling fan. You can imagine, that did not feel good. (Another odd thing about my kitchen is the enormous and very low ceiling fan). It was bruised, hurt for a few days and then basically felt better. It’s been two weeks and Saturday night I used my hand to push myself up, heard a strange little pop and then felt some strange pain! I went to work the next day where it proceeded to swell and swell and swell until it hurt to use the hand at all.  (this is not my fan, just what it felt like)

Of course, I went to my other job right after getting off work from job #1, and it was even more sore. WTH? (and the grammar check wants me to use more sorer… uhh). I asked the nurse to look at it when I had my TB test injection and she sent me straight for an xray!  Lol I seem to be able to close the hand a little more today, so I’m guessing nothing is broken. She believes it’s a tendon issue anyway, but we shall see. As long as it heals, all is well.

Back to the testing… TB injection yesterday and I will return on Thursday to have it read. So far, it looks like there is no reaction at all. Let’s hope it stays that way. It's actually hard to distinguish the injection site from the other marks on my arm.

Today after work I go for my Mammogram. So, it’s Boob Squash day. Awesome!

See how she's smiling.....apparently she is also lying!  lol  Ah well, there are worse things.

So, some tests...

After finding out I was not a match for Craig, and moving on to the paired program, I was in touch with the paired program coordinator. She gave me the list of tests I would now be doing. We skipped by them earlier, as they were trying to fast track me with the cross match test.  I was to do a urine collection for 24 hours x 2. Starting at 7:00 am on Saturday, finishing at 7:00 Sunday and then moving on to the next collection until Monday morning at 7:00.  It worked out great that I was off the very next weekend and could get started right away. I work 24 hour shifts at the fire hall and any week day I am off from the Fire Service, I work part time as facilities and admin/IT support.  It would be very tough to do it any other days but the weekend.

I picked up my “pee jugs” on Friday and after being up very late Friday night (daughter and friends needed a little help after a lost wallet), I started at 8:00 Saturday morning. I could have started any time, the time is not important, as much as following the rules exactly. I was given a “nun’s cap” to help with the collection. Every woman will need one! I could not imagine peeing into a 3.5 litre container without it! It wasn’t too big of a deal. I was able to come and go, but I had to be sure to be home whenever I had to use the washroom. I went to yoga and to get some groceries and I have never been more aware of my need to pee!

After the jugs were filled, I had to get blood work the following day. Monday morning I was up far too early with the dogs. I was not to have coffee, food, or any food, but was allowed to have water.  I made it to the lab at the Riverside at 8:00, made my last “deposit” and waited for my turn at the blood work. Wow, as much as complaining seems like the wrong thing to do, I felt like crap! I wasn’t able to take my medication (which if I wait too long, I can end up with dizziness or vertigo), and with no coffee…. OUCH!! The fella beside me was a heavy breather, the lady in the next row of chairs was crinkling her water bottle; little things were starting to become very irritating, even though they these people were likely lovely.

I was just going to get up to see if I could take my medication and they called my name at 9:45. She was super, allowed me to take a few shots of the blood work being done and after the collection (but the new little pee containers were empty of course). I was out of there and straight to the cafeteria for a coffee and muffin! Haha! The morning was pretty rough when I made it to work. I was nauseous and tired and had a massive headache. I took a Tylenol with lots of water, then had a bowl of my home made carrot ginger soup! That was all I needed to feel much better!!

I had the results back the next day and all was fine. The only issue was my cholesterol; it’s still a tad high at 5.3. It was 5.3 the last time it was taken as well, but the HDL (good stuff) was low and the LDL (bad stuff) was high. This time it was the other way around. It’s a start! Now that this is complete, I am on to the next phase. I had an appointment with my own family doctor for a pap test, breast exam, a requisition for mammogram (because I am over 40) and I am to return Monday for the first part of the TB test. I follow up on Thursday (48-72 hours) to have the test read (injection under the skin on the forearm).  I have also schedule my abdominal ultrasound for next Friday, early in the morning. The coordinator was a little worried that the ultrasound would be hard to get an appointment for before May, but it was lickity split!  More tests after that, but lets get past the ultrasound and mammogram first.

So far, so good. I have been told there is a chance I will find out I have a disease, affliction, something wrong with me, that I was not aware of. I’m not too worried about that. I think it would be better to know than not. I was also told that if I wanted to get extra life insurance, now is the time, just in case. I have a pile of it now, so fingers crossed I won’t wish I had gotten more.

Then What??

For me, the decision to become a donor was not a difficult one (once I realized I could be one). I suppose it was for a couple of reasons; I have known Craig for many years and always known him to be a wonderful person who would give the shirt off his back if you needed it and, I knew at this point that his options were becoming limited.  I would never pretend to understand how it feels to know your actions could be responsible for someone's demise, but I do know that I don't want my inaction to be a result either. That may sound like I am protecting myself from guilt, and I assure you, guilt has no power in this decision. I simply cannot find the proper words to express it, but something inside of me said, "Do it." He and his wife deserve a shot at a long and happy life, and to have kids, and more dogs, and all of the pleasures associated with that. For a couple of months of inconvenience and a bit of pain after the surgery, I think someone else's life, love and love of life, for that matter, deserve the chance! And heck, I have a spare one anyway!

The next step for me was simply to make contact with the donor coordinator, answer a few questions and have her agree that I was a good potential candidate. I received a large envelope in the mail with a requisition for blood work and a lot of information on the process, what to expect, the steps along the way, etc. The requisition was basically to see if I was a match for Craig directly. He has a high level of antibodies (98%), which makes it difficult to find a match. As he has said, it means out of every 100 potential donors, 2 could be matches.

I had the blood drawn as quickly as possible, I believe it was the day after receiving the information. Off I went to the Riverside, mainly because the information will be with the donor coordinators office by the next day. Easy peasy! Sadly, it turned out I was not a match, Craig had one antibody against my blood and would therefore reject my kidney. I sat and had a little cry because, for some reason, I had convinced myself that I would be a match and we could get on with things. I think it's like those days I convince myself the lottery ticket in my hand is a winner. I don't feel as sad when I lose, but I bet the odds are about the same.

So, the next phase will be to enter the Paired Donor Program and proceed with the screening tests. A bit of a long road, but the goal is to have everything completed by May. The paird program does a search match three times a year. The first was March, which I easily missed, the second is May, which would be ideal, and the third is in October, which runs the risk of being a little late for Craig. Fingers crossed that we can get everything completed!

It all started when....

I first met Craig in 1991 when we were working together in a small roadhouse style bar. We spent a lot of time together, and eventually we were dating. We were 19 and had a lot of fun, parties seemed to be the main theme. I can't remember how long we dated, I'm sure it wasn't for long, but we stayed friends and continued to spend time together.

A few years passed, I had moved and had a child and we ran into each other. It was just like old times, hugs, laughing, talking. He's just that kind of person you can catch up with in minutes  and the friendship continues where it left off.

Fast forward many more years, Craig has gotten married, my daugther is in high school and a chance meeting at IKEA has us in touch again. Once again, we caught up into a conversation just like old times. He told me of his wife, Heather, and their dogs and we talked aboutmy daughter just starting high school and when I mentioned I was a firefighter for the City, he said that he was a volunteer with the rural part of the City. He mentioned at the time that his health kept him from applying fulltime. I didn't want to ask, incase it was something he didn't really want to discuss. What I would later find out was shocking to me.

Craig was not involved in an accident, he was not afflicted with a lifelong illness, he did not come into contact with Hepatitis, he took pain killers after a slow pitch injury. He took them on the advice of his doctor, although perhaps on an empty stomach and a little dehydrated and it sent his life into a tailspin. It wasn't long before his kidneys were failing. You can read the whole story here: Craig's bio

Fast forward to a few years later and something that had never occurred to me became very clear. He had posted something on facebook about the news he had just received, although cryptically. Ironically, it had been my mother who commented, not knowing (nor did anyone), what his message meant. He sent me a message, thinking the comment was from me and explained. I was floored. Not only were Craig's kidneys failing, his entry points for dialysis were also failing. He was down to a couple of options, neither was favourable. It hadn't occurred to me before that I could be a kidney donor! I set to google and soon learned that living with one kidney was really no big deal. People were back to desk work within weeks, people with physical jobs took a little longer, but the recovery seemed to go quite smoothly. Excellent. I wish I had realized sooner that a live donor was an option, but never the less, the process is under way.

I am writing this blog to show others what the process is like and what is involved with becoming a potential live donor. I am in the paired donor exchange program, and currently going through the screening tests. I am not a match directly to Craig because he has antibodies against me. The paired exchange simply means Donor A and Recipient A are entererd into a database, three times a year to find another pair; Donor B and Recipient B whom we match. Donor A gives a kidney to Recipient B and Donor B gives a kidney to Recipient A! Sharesy!

Please follow this blog and continue reading if you want to follow along in the process and think you too, may be able to become a donor!