When 33% is NOT a failing grade!!

Last month I walked into a doctors office for a standard check-up. I walked out being told to prepare a kidney donors list because my kidneys were functioning just above 20% and if they fell to below 20% I would need a transplant immediately.

Yesterday I walked into a doctors office and met with a team who is now following my kidneys on a month to month basis. When I met with the doctor he was smiling. I wasn’t smiling back. This was serious. 

Then he told me something strange had happened. My kidneys were now functioning at 33%. I began to smile.

When I was in school 33% was a failing grade. I would not take that test home to mom and dad because I valued my life if you know what I mean!!! Well, today I am blessed to be able to tell you my kidneys are now testing at 33% and I tell you this because literally I value my life!!!

Although 33% isn’t great (compared to the average population), in reality given my kidney function a month ago this is GREAT news. Practically this means no transplant for a few years. In all probability around 5 years. This will give us time. Our potential donors will not be able to go through specific testing at this time, BUT when the time comes we have been assured that the process will happen immediately and quickly.

By the way, when my doctor heard I had over 30 potential donors that wanted to be tested for lack of a better phrase he “FREAKED OUT!!!!” "That just doesn’t happen he said!!" I told him that I was blessed. He agreed.

I’ll keep writing this blog. I have loved talking with you!! It will continue to be raw truth and observations about health, life and whatever God brings to my mind to write about. I will do my best to post every Monday so please come back every week and share right back at me.

I’m keepin today’s blog short. My excuse is that "it’s not Monday." I just thought you might want to know what God did this past month because I know just diet and exercise doesn’t raise kidney function that much.

Please write back with any questions, encouragement etc.

2 Samuel 22:50

“Therefore I will give thanks to You, O Lord, among the nations,

And I will sing praises to Your name.

Love,

Ed

I Don't Want To Talk To You

I Don’t Want To Talk To You

WARNING: Remember this blog is unfiltered raw emotion.

When I was 30 something I met a cousin at another cousins wedding. His first question: “How’s your diabetes?” His second question: “What medications are you taking?” The conversation about my health went on for what seemed like 30 minutes before I made up a VERY lame excuse to leave. Later I found out from Laurie that I had hurt his feelings by leaving. At the time I didn’t care that his feelings had been hurt. It was my feelings that I was worried about.

You see I knew he meant well and I know that people mean well today. Simply put, I have been moved to tears by the number of people who have shown how much they care about me in the past month based on emails, Facebook messages and conversations. At the same time I have to tell you that at times I let myself get frustrated (like I did at that wedding) when I perceive that my bad health seems to follow and define me.

Diabetes @ 13
Epilepsy @ 15
Skin Graft surgery
Eye surgery
Hand surgery
Kidney Transplant to come
Just to name a few!!!

It is so easy to allow health conditions define you. For example once I was introduced to a man named Bill and this is how the introduction went: "Pastor Ed meet Bill. He’s a cancer survivor." What do I say to Bill next? "Nice to meet you cancer survivor?"

The main reason I did not write you last week is that I didn't want my kidney disease defining me.

Please don’t take this personally but I didn’t want to talk to you last week. I needed to talk to you!!! But I didn’t want to. That may seem hard to understand. But for those of you who get it... well you get it. For those of you who don’t get it, please accept my apologies. I would just rather be known as Ed and not Ed with the kidney problems.

The balance is a curse and a blessing because the more people that know about the kidney problems the more prayer support and potential donors I have.

Last week I didn’t sleep much at all. I let worry and depression take root for a few days. I allowed myself to define myself by my kidneys. How ironic is that??!!! I was so tired of waiting for the next Doctors appointment because I wanted to get moving forward with the potential transplant. Well tomorrow is the day of that appointment so I will write another instalment this week. I treasure your prayers!!

Potential Donors Stay Tuned: You should hear from me soon about steps to get tested for kidney compatibility!!! All of you are such a gift from God!!!

Honestly: I really do want to talk to ALL OFYOU!!! Thank you for understanding when I need to be silent too. For as the psalmist says...

Psalm 62:5

For God alone, O my soul, wait in silence, for my hope is from him.

Well that's about it for this lot of spaghetti. Hope a little bit of it stuck to your wall.
I take blessings from you all.

Please write back with any questions, encouragement etc. You are the best!!!

(YES, that is Mickey and Minnie Mouse at a church event here in Winnipeg)

Ed

Hope and Castle?

Alyson lay in my arms the other night crying ever so softly. She was worried about her father and what could happen to him during a future transplant surgery. She was also scared about my kidneys failing, dialysis and not finding a matching kidney to name a few other things.

If I’ve learned anything over two decades of ministry to those who are in pain it’s this:  “Before you try and fix it, just shut up and listen!” Listening affords the hurting person the opportunity to deal with their “stuff” for lack of a better word. Fixing it too soon can easily result in something breaking again all too quickly.

If you are offended by the term “shut up” I apologize but please remember that this blog promises to put it out there.

So I listened, cuddled and stroked my daughters hair. Then after a few minutes of silence she took a deep breath and let it all out. That seemed to be my cue.

E: Aly, remember when daddy lost his sight 10 years ago?

A: Yes.

E: What happened to daddy’s sight?

A: God gave it back to you.

E: Did you pray that God would give it back to me?

A: Yes.

E: So what should we do about my kidneys?

A: Pray about them?

E: I think so. Want to pray with me?

A: Yes dad.

We prayed, said Amen and decided to go and watch an episode of our favourite TV show “Castle.” Enough said.

Listening followed by a simple exchange reminded my daughter of two things...

1. God is powerful
2. God provides those who look to Him with HOPE

This doesn’t mean we aren’t still concerned. It also doesn’t mean that tears won’t be shed and hair won’t be stroked. It does mean that Hope in God is more powerful than hope in anything that is human. Myself and my family choose to hope in the Lord our God during this challenging time in my life. If you are going through a challenge I pray that you will do the same. 

I have found that Hope in God is many things. To name just a few Hope in God is...

1. Calming
2. Joy provoking
3. Protecting
4. Peace producing
5. Patience offering

I have also discovered that Hope in God allows me to be infinitely more self controlled.

Seventeen Days till the next Doctors appointment. Please spread the word. I am always looking to add to the list of potential donors. The more people willing to be tested the better the odds. Details as to the process etc. will be provided after June 13th.

The last word goes to God and it's found in Romans chapter 5 verses 2-5.

Romans 5:2-5

Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

Thank you for your support and your prayers. We value them and we value you!

Blessings,

Ed (as always for Laurie, Ben and Alyson too)

Under the Sun

Solomon suggests that life under the sun is meaningless and I took issue with that suggestion until I realized that my life has an eternal impact that reaches beyond my lifetime.

Myself, my family, my friends, my colleagues and yes even those I'm not very fond of can be impacted by how I live my life. Everything I do needs to be grounded in that context. But, it isn't always.

I do believe in eternity. I do believe in life beyond this life. At the same time I recognize that I am human and because of my humanity I will still struggle with life "under the sun" despite my belief in life "beyond the sun." If this sounds contradictory to you... IT IS!!!

I don't have a problem with that contradiction however. I choose to seek God in my humanity. He can handle my struggle far better than I can as you will see in the weeks and months of posts to follow. You will experience raw, unedited truth in what you read. If I'm tired I will tell you I'm tired. The same goes for sadness, anger, joy, peace and more.

This is also a Blog of health updates. You are welcome to share this Blog with anyone. Mahalo for reading it and being part of my journey.

On Monday May 13th I walked into my renal specialists office for a standard 6 month appointment. He was very happy with me as he looked over the report. Then he turned to the blood work and said "Oh $#$# do you know anyone who can donate a kidney. My 15 minute appointment became a 2 hour appointment as I was shuttled off for a variety of additional tests and specialists. I am now part of the renal clinic at 7 Oaks Hospital in Winnipeg. Here is the letter I sent out to friends and family on Wednesday after immediate family was notified.

LETTER

        Most of you are aware that I have diabetes which takes it’s toll on a body. As a direct result of diabetes I have had kidney disease for many years. This week during a routine renal check-up my doctors discovered that my kidney functions had slipped from 36% to 26%. They are currently taking steps to attempt to increase that function that range from medication to diet, etc.
        Beginning immediately my renal health will be monitored much more closely. I now see a team of 10 professionals at 7 Oaks Hospital. They are top notch and I look forward to working with them to keep my kidneys as healthy as possible for as long as possible.
        While I am not dying by any means, I have been told I need to face the fact that my kidneys are on their last legs. This means that preemptive action to... 
help them last as long as possible and 
plan for when they fail to function is important.
        The doctors are unsure how long it may be until the kidneys fail. It may be months or it may be years. Due to my relatively young age they have asked me to put together a list of individuals who would  be willing to POTENTIALLY donate a kidney to me. The doctors would rather insert a new kidney into a 40 year old man than have him / her on dialysis.
        The decision to donate an organ is very personal. I don’t expect this from any of you. At the same time I would ask you to prayerfully consider if this is something you would be willing to do. If you would be interested in prayerfully considering this please email me directly at 
        ed.edbuller@gmail.com. 
        You can also message me directly using the personal message function on my Facebook page.
        There will be a waiting period while the list is compiled and then the individuals on the list would receive a simple blood test. The blood types that are compatible would then undergo several additional tests to discover whether or not you are even compatible for the transplant. I would be humbled if you would consider this. 
        Please forgive the general nature of this email. I am trying to reach as many people as possible with this message to maximize my odds of receiving a matching donor. As an effort to spread this news I would also ask you to spread this news to any friends / family you think would consider donating a kidney. Anyone is a potential match. All tests are entirely confidential and would be used only in reference to my specific case.
        If you know me then you know that I am not looking for a kidney for one person. I am looking for a kidney for Laurie, Benjamin and Alyson as well. So please cover our entire family in prayer.
        I will keep you updated via Facebook and my blog on a weekly basis. 
        My work as a Pastor continues to be life giving. I love working for Heart of Worship International Church. Laurie is enjoying her job @ Gamma Dynacare Labs. Alyson is doing well and has just applied for the leadership team @ John Henderson Middle School. Ben is struggling at school with OCD and Aspergers so he could use prayers for his health as well. 
        While we try to maintain good spirits we are stressed by yet another medical hurdle and are doing our best to trust in the Lord with all our hearts leaning on Him instead of our own understanding. 
        Blessings to you all, Pastor Ed Buller Jr.
        Psalm 40:1-3 I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the Lord and put their trust in him. Any questions please email me @ ed.edbuller@gmail.com or call 204-298-3949

END OF LETTER

I'm thrilled to say that in less than a week we have over 30 people who are willing to be tested to see if they can be donors!! God is good. Please feel free to share though as we are always on the lookout for more. More tested = better odds. On June 13th I'll be able to inform those on the list as to how to go about this!

In the middle of all of this God blessed me on May 18th with 22 years of marriage to my amazing partner in love, life and parenting Laurie. Hence the blog edsrollercoaster@blogspot

Anyways, more to follow at least once a week. If you hit subscribe you won't miss a post and you'll know almost as soon as we do what's going on with my kidneys. That felt weird to write. Did it feel weird to read? For now, off to school to pick up a beautiful daughter of mine.

Blessings All,

Ed Buller