Saturday, January 8, 2011

Answering Two of the What Ifs--Rejection & Rejection

There are obviously a lot of "What Ifs" in this process that either friends have asked me, I have asked myself or I've had to answer to medical professionals within the screening process. Two of the more common "What Ifs" deal with rejection. Rejection is such a great word isn't it?

What if I am rejected from the program? This one was asked pretty consistently through the process, although more by the social workers and doctors I've seen along the way.  How would I feel if I was told I am not able to donate?  This one is actually a pretty easy answer. The screening process is there for a reason and it is 100% to protect me.  Other than a couple of extra vials of blood that will help with potential initial matching with recipients, all of the tests I have gone through are to make sure I am okay to go ahead with this. I was told at the beginning that there are perfectly healthy people who don't make it through because they aren't quiet healthy enough in a couple of categories (for example their kidneys work fine for them but the doctors aren't sure that one wold be enough if left on its own). So if I am told that I can't, I can't. Sure, it would be disappointing after all the preparation, testing, and thought that goes into a decision like this but in the long run I am safer if they need to say no.

The other big rejection "What If" relates to what I would feel if the recipient's body rejected my organ? At my very first appointment with the Living Donor program folks, it was put very bluntly. "Picture us taking out your kidney then throwing it out because that is essentially what could happen". Of course they don't want that to happen, but the reality is that it can. With kidneys, the rejection rate is under 10% but if you are one of those 10% the statistics don't matter all that much. Living organ donation does however have a lower rejection rate than transplants received from cadavers.

There are a few kinds of rejection. The first type, Hyperacute, occurs within minutes after the transplant and must be immediately removed to prevent severe harm to the patient. The good news is that with crossmatching tests, they are now able to better predict if rejection will occur. How does this work? Basically my blood and the recipients blood is mixed in a tube - if the white cells in one attack the other, it's not going to work out between us.

The second type is chronic rejection and it is much more common in transplants involving lungs and/or heart where there is significant rejection that causes irreversible damage and reduces function of the organ (say to 50%) but then stabilizes for an unknown period of time (could be months, could be years) after which another damage cycle occurs. The term chronic rejection is most commonly reserved for cases of transplant rejection where the rejection is due to a poorly understood chronic inflammatory and immune response against the transplanted tissue.

The third type is known most commonly as acute rejection. This can happen a week, months or years after the transplant. From what I have read, if you receive an organ from someone, you will face acute rejection in some form at some point (fun fact: this is less likely if you are an identical twin who received your organ from your twin). The trick is for it to be caught in time. In the past they had to rely on patient symptoms such as fatigue, pain, fever, significant weight gain each day to give them a hint there was acute rejection occurring. A biopsy (a chunk of the organ is taken out to be analyzed) is then done to confirm diagnosis and anti rejection drugs are altered to attempt to curb the rejection. Often by the time they got to this point the organ is already damaged. It has been a mix of science, guess work and hoping for the best because each patient can react differently to the drugs.  Not enough of the drugs leads to continued rejection and potential damage to the organ, a dosage too high also leads to potential organ failure. 

The good news is that in late 2010, scientists have developed a simple blood test that tests for proteins in the blood that are present even if there is the slightest bit of rejection beginning to occur.  They believe the test could be used to adjust the levels of immuno-suppressant drugs administered – increasing them only if rejection is imminent – thus minimizing side-effects. It could also potentially prompt doctors to conduct a biopsy only if necessary rather than doing a biopsy straight away, which would be much less invasive and not risk further damage to the organ. More research will show whether these test can predict an acute episode of rejection before any change in organ function. Pretty promising stuff.

I can cross all my fingers and toes and hope that if I donate, my recipient's body welcomes my kidney with open arms.  But the reality is there is nothing outside of the cross matching tests that I or the recipient can do to predict how the union will go. Because of this and being fully aware this is beyond my control, I am okay with whatever the outcome may be. Just like the first rejection "What If" , there would be disappointment. However the odds are in favour of it being a success and I have to hang on to that.

“For us, there is only the trying. The rest is not our business.” T.S. Eliot

Tuesday, January 4, 2011

The Social Worker Step

Ok not really but this picture is great

Today I had a very informative meeting with a social worker from the Living Donor program.  She was able to answer a lot of my questions and give me a much clearer understanding of where I am in the process.  Of course it wasn’t all about my wonderings (it’s not all about me!); she had several pages of her own questions as well.
Her role in the process is to review the risks (things like relationships, financial, health, emotional etc.) and any potential concerns I might have with any of those categories as it pertains to my decision to donate. It’s another checkpoint to make sure I’m still okay with the decision and also to help me now or down the road with the tools I might need to deal with any of those risks. She asked detailed questions about my friends and family (some of you were named!) support, about my work support and the things that most worry me about the process. She asked about hobbies and values and what I wanted to achieve from the process. I also got to pick my “ultimate surgery date” and a back up date too.  I can’t say ultimate is an adjective I would use but I gave her a couple of dates (“I don’t really care” was my initial answer but she seemed to really want something more definitive to write down).
We also discussed the “travel factor”.  She told me that because I am an altruistic donor they do actually try to keep me here are less likely to want to push for me to be sent elsewhere in the country.  That did kind of contradict what I was told earlier.  You may recall I was told how my fabulous blood type and the fact I’m not attached to a recipient made me a good addition to the national pool and I could even perhaps start or end a domino (paired) exchange. She said from her perspective, her biggest fear is sending me somewhere that doesn’t offer me the same level of support as I would have here.  If something was wrong or even if I just was feeling terrible, I would do better if I had “my people” or at least a person around to make sure I was ok. I told her that Calgary would be ideal but that I am virtually as open to anywhere in and around Toronto, Hamilton or even London Ontario because I would have great support there.  That being said, if there was a really compelling reason for me to go elsewhere (like I am a perfect match for someone who is incompatible with virtually the whole country’s population) then I would consider going elsewhere.
She also let me know that the next “National Pairing” is the end of February and she’s be really surprised if they tried to squeeze me into that given that the timelines are so tight.  So if they did opt to put me as part of a chain, it would likely be much later in the spring (all of this is dependant on me being okay with their choices). That does not rule out me being part of a local chain sooner though (as in not late spring).  And of course I may just be part of an everyday “the recipient and I” kind of transplant.
It was confirmed that all the tests I have done are indeed sequential.  I would not have been scheduled for each test had I failed or even yellow flagged on any of the previous ones.  A doctor has been scanning the test results as I’ve moved along although he/she will still do a final review once all the tests are back. She said the only time I kind of went out of order was with the psych test and that was because the doctor had a free day which he didn’t think he was going to have again for awhile.  She said they have recently decided that any anonymous donor MUST have a full psych evaluation-if I was giving my kidney to family I may have skipped that part.
At this point she said I was 80-85% done and she’d be surprised if medically anything would be found at this point.  I have an MRI on January 23rd (yes, a Sunday and I can’t eat all day as the appointment is at 7pm!!). The MRI will count the veins and arteries leading to each kidney to determine which one is “better” and also what type of surgery I will require.  Laparoscopic surgery (vs. a big cut) requires me to have more simplified vein/artery action going on so I’m crossing my fingers that will be what they see.   About a week or so after the MRI I can expect to meet with the Nephrologist  (Kidney doctor).  They will want to review the test and meet me.  After that it’s a (the??) surgeon.  I think that might depend on where I am going. And from that point forward it’s all about logistics and scheduling. Oh la la I’m getting closer!

Monday, January 3, 2011

Taking Care Of Business

It's off of work I go...
One of the things that can greatly impact people considering whether or not to donate a kidney is their job. A living kidney donation can mean anywhere from 2-6 weeks (on average) off of work depending on how quickly you heal, the type of surgery they do (laproscopic vs a "straight cut") and the kind of work you do. There are of course also all the tests and appointments you need to do to determine your eligibility and at least some of those have to be done during "regular business hours".

Its also not just about "time off".  How supportive is your immediate manager in general?  Your co-workers? After all, it is they who will be "picking up the slack" for you while you are gone. And of course they might not want to help you because you are a "do-gooder"... If they also are not the types to agree with organ donation, it can make pursuing the idea harder even if there are policies in place to support your sick leave.
I am very fortunate to work for a small bank which is a subsidiary of  a much larger organization, the Alberta Motor Association (AMA).  During the process of determining if I can/want to donate, I think this has given me the best of both worlds.

When you work for a smaller company, you tend to have a closer working relationship with your department and manager.  You likely also know what the members of the Executive look like and and they are more likely to have an "open door policy" . This means they are generally more accessible to the average employee than someone in a similar position in a much larger company. For me this has meant that I have a closer relationship with many of my coworkers which has allowed me to share this with them.  They've asked a lot of great questions and have been hugely supportive.  My boss, who leads a small but mighty team of 6 (if all positions are filled) has allowed me time for appointments no questions asked (knowing I am a grown up who can manage my time and projects around them). He'll also be ok me coming back for half days or needing to leave a bit early if I'm not up to par yet post surgery.  I've also had the opportunity to share my intentions with some of the executive so that they are aware should it impact any projects I'm involved with. The support of all of these people has taken the worry out of the projects and day to day tasks I may need coverage for and its also nice having such a great support system emotionally at your job as well.
Being part of an over all "larger" group of companies is providing me with a more ideal situation for taking the time off from an HR perspective (benefits, policies etc). I know this is not the case for many employers but it really should be, especially if they employ more than a few hundred people.  However only 43% of employed Canadians have access to Short Term Disability programs as part of their benefits. I've heard there are also some notable employers in Canada that in order to be "fair" will not allow employees special time off for doctors appointments and testing-that would make time off for surgery likely impossible.
In my case we are granted 10 sick/personal days a year (from July to June).  You lose them if you don't use them.  I realized in doing the research on kidney donation that I'd need  more than that (even for the best case, quickest healing scenario). While I also have the option of using holiday time or even going on short term disability, I thought I'd approach HR to see if under special circumstances there was any wiggle room on sick days (also considering I've yet to take one in three years).

The thing with HR in larger companies is that whatever you are requesting has to be fair and sustainable.  In other words they need to be able to extend it to everyone under the same circumstances (ie make it policy) and/or have it not negatively impact other employees. The difference between a good employer and a great employers is one that will also look past existing policies and try to come up with a solution that fits rather than get stuck on the fact that what you are asking for is outside of the realm of their existing manual. I made sure to position it with them that it was sustainable (they could do it because its not like there was a line up of 50 people behind me wanting to donate their organs).  I think that fact helped them look past the fact that nowhere in their policies was there anything resembling this situation. And because they strive to be a "top" employer they chose to review the situation and find a solution rather than just say "its not in the book".  After a few weeks of reviewing their options they informed my immediate HR rep that they could "find a way to support" on an exception basis.  The only condition was that the bank's Chief Operating Officer needed to be okay with it. It didn't take long for him to make the decision (100% yes) and he told me that out of the two of us in this situation, he has the easier job.
So if this donation gets the medical go ahead, I will just need to let HR know how long I need roughly and they will allow "special" time off for me so that I won't need to use vacation time or go on short term disability.

It just goes to show you it never hurts to ask what your options are an provide your employer with the tools they need to make an educated decision. I think the fact that AMA is a not for profit helped as they are very similar in mindset to the government (in a good way).  So far, the vast majority of employers in North America who have written special policies to allow time for bone marrow or organ donations have been in government, healthcare or educators.  It would be nice to see more of the private employers making that choice-it's rarely a policy that would be used by employees but its a nice "goodwill" one to have on the books. 

Kind of a win win (win!) for everyone.