Friday, 23 September 2011

A Waiting Game...

I hate waiting.  Hate it with a vengeance.  Maybe that's why God is making me wait another month.  That's how long until the renal doctors get back to me about the whole kidney donation process.  This week I met with the renal doctor in charge of my kidney donation process.  We went through (in great detail) the results of the echocardiogram of my heart and he confirmed what the cardiologist said - I have bicuspid aortic valve defect.  Or as he says - it's not a defect, it's an anomaly.  ;-)

In any case, we went over all the options that are available at the moment, but he didn't give me a clear answer as to which option is going to be the final one picked!  He is waiting for his surgical team to get back to him as to what they see as the next step. There are several members of the team - the 2 surgeons (1 for me the donor and 1 for the recipient) anesthesiologist, the renal coordinators and even a medical ethics officer - so that is why we have to wait a month for them to get back to me.

So here are the 3 options that we discussed...

  1. NO - if ether myself or the surgical team say no, we don't want to go forward anymore, then it ends right now.  It could be that the surgeons say that they don't want to take the risk because I have the defect/anomaly.  For them, they have to think about BOTH the recipient AND the donor (me), so they might decide that the risk is too great.  If this is the case, then everything ends now and they will discharge me

  2. LATER - there is the option that I can wait for a time, maybe a year or so, and IF the recipient hasn't received a kidney yet and IF my heart condition hasn't gotten worse (they'll do another echocardiogram, ECG and stress test), then they MIGHT start the whole donation process up again.   If this is the case, then everything is now put on ice for an indefinite time.

  3. YES - or if both I AND the surgical team think the benefits outweigh the risks and we are BOTH willing to take the calculated risk and go ahead with the donation, then we can move forward with the surgery.  From what the doctor said, this is probably the least likely of the 3 options.  He personally doesn't think I should donate, but he is waiting for the surgeons who will actually do the surgery to give their input.

So that's's back to waiting.  Again.  God is teaching me patience.  Again.  In any case, in my devotions this week, the Lord brought me to the passage in 2Sam 24 where we see King David taking a census of the people.  God is not cool with this and must then discipline David and Israel, but in the end He shows mercy.  King David then wants to give a peace offering to God, so some dude named Araunah gives King David some stuff for the offering - for free!  What a generous gift!  But David says something that struck me and made me really think about the situation I am in at the moment.  David says - 'No way man, I can't offer something to God that doesn't cost me anything!  No, I will buy it from you, Araunah.  Name your price' (my loose translation).  So David buys the stuff from him and offers up a peace offering to God.

But what David said really hit home for me.  How can I offer a sacrifice to God when it costs me nothing?  Up to now, this sacrifice of a kidney hasn't cost me anything.  So perhaps this is the cost - not necessarily the fact of the heart murmur and heart valve defect.  But making a decision to go ahead KNOWING what COULD be in my future.  That is the true cost, I think.  Just my thoughts.

In any case, after talking with Becks and discussing the 3 options, we are leaning towards going ahead with the donation.  As Becky says, we can't base our present lives on future 'what ifs' that might never happen.  Yes we need to make wise decisions, yes we must take into account many factors.  But we can't live on 'what ifs' and 'if onlys'.  So bottom line - we keep going forward until God truly and completely and finally shuts all doors.  I know some of you will not agree with this, so I ask you to pray with and for us.  Nothing is set in stone yet.  We will continue to pray and seek God....and of course, wait.  Let's see what the surgeons say in a month.  A very long month.  ;-)

Tuesday, 6 September 2011

Life Can Change So Quickly...

First I want to thank all of you who have been praying for me and the whole kidney donation process.  And especially this past week as I had the appointment with the cardiologist.  Well, the outcome of that meeting was along the lines of what I had feared but praying wasn't the case.

Basically I have been diagnosed with a congenital bicuspid heart defect / disease - this affects about 1% of the population, a significant number.  So what is this defect?  The normal heart valve has 3 cusps or leaflets or flaps that look like triangular pie wedges (see FOTO below).  This opens and closes with each heartbeat and keeps the blood flowing in one direction as the heart pumps it through the open tricuspid valve.  When the valve closes, the leaflets / flaps seals and keeps blood from flowing back in the direction it came from, thus ensuring that blood only flows in the desired direction.

Well, with a bicuspid valve defect, instead of 3 cusps or leaflets, there is only 2 (see FOTO).  It is caused when the leaflets or flaps are not formed properly in the womb during pregnancy.  The bicuspid valve can function without complications for years, well into adulthood.  But because the defective bicuspid valve wears out quicker than the normal tricuspid valve, many people with this disease start showing symptoms in their 30's or 40's - shortness of breath, dizziness, heart murmurs, stenosis (stiffening of the leaflets), regurgitation (backflow of blood), etc.

For me, it was the heart murmur that first alerted the doctors to this disease / defect.  And because I have inherited high cholesterol, I am at greater risk.  About 30% of people with this heart disease develop complications.  And about 80% of the people with this defect will require heart surgery.  So for me, with this defect and the high cholesterol, there is a very good chance that I will need heart surgery in the next 10-15 years - according to the cardiologist.  Thus, with this likelihood of heart surgery in the near future, he highly recommends AGAINST kidney donation.

So that is where we are in the whole kidney donation process - it is looking very unlikely that I will be able to donate my kidney.  The doctors don't want to put me at risk.  I meet with the renal doctor on 20.Sept, likely for the final time. Pray for that meeting.

So that is the physical side - but there is also an emotional side.  I won't lie and say that I am not hugely disappointed that I won't be able to donate.  It's been a year of lots of tests and medical exams and appointments - all in preparation for donation.  And the fact that we were just 10 days away from the surgery date when everything was halted.... :-(  And needless to say, the potential recipient was also very disappointed - he was sooo looking forward to this.  I met with him last week and explained everything and he took it very well even though it was obvious that he was extremely disappointed.  I explained to him that this whole process has been in God's hands and it will remain in His hands.   So pray for the recipient, that he will come to know the Lord.

In any case, thanks so much for being on this journey with me.  And isn't it 'funny' how life can change so quickly - one day you're doing fine, having run a half-marathon, getting ready to donate your kidney.  And the next day you get a call from the doctor saying you have a serious heart issue that will very likely preclude you from donating.  Funny.  God funny.

If you want more info on biscuspid valve defect, visit the Cleveland Clinic's website - they are the world leaders in this field.