Sunday, March 31, 2013

One of those weeks...

It was one of those weeks where disappointment, stress, and life collides.

I think I have the final tests that Spectrum requires finally figured out and scheduled for this upcoming Friday. I will meet the transplant surgeon the following Friday with repeat lung function testing the day before.
Once all testing is complete, the transplant team will review everything and decide if they want to list me at Spectrum. I anticipate the decision in the next 2-3wks.
Going through this again is difficult and it will be nice when all is done and plans "finalized".
Today is Easter and normally we spend it at my mom's-instead we were here. (I missed last yr as I had pneumonia) I really cannot leave the city of GR as one never knows when 'the call' will come. I need to be able to get to my plane within a hour of receiving the call and make it to Wisconisin in the allotted time. It is an approximate 1.15-1.30 hr flight in my reserved Cessna. Flying west across the lake there is always opposing winds and anyone around this area knows weather in general can change in an instant.
So I'm really tied down to this area which I don't think people realize.
It is times like this where I feel trapped, there is no escape, Greg and I can't take a weekend away, and there are certainly no future vacation plans.  We would love to be able to plan a Disney trip with our 5yr old but that is on hold. This sucks!
The uncertainty of my life is so heavy at times. Instead of a Disney trip for Eric, I'm thinking of writing cards to him for future b-day/special occasions in case mommy isn't there. How wrong does that seem?!?!?
I tell myself, one day at a time and keep your head up but sometimes I just want to bury my head in my comfy blankies and hide. But life does not stop and neither will I.

Thank you Heidi and Becky for offering their families for Easter celebration. Both tried a few times to have us over today but I declined, I needed some time to recharge my batteries. I can't say I feel totally recharged but will keep trying.

Monday, March 25, 2013

Prayers everywhere!

This is a children's home (Faith in Deeds) in India. My friend Liz gave me this framed pic and it really touched. How sweet is it knowing that children across the world are praying for me?!!? That is awesome and was a very touching gift.
Heres their facebook link if interested in checking it out further:

Sunday, March 24, 2013

2nd listing?

Greg and I met with some of the team at Spectrum this past Thursday. Some of you may know that they have been doing heart transplants for the past few yrs but just recently in the past few mos became credentialed through UNOS for lung transplants.

Michigan is in a different region than Wisconsin so if I can list in another region I would increase my chances to get lungs.
Spectrum has recruited an A+ team for their lung program and I've done a lot of research. The facility itself just has not been doing transplants that long.  Their are pros and cons to every facility and ultimately it comes down to the surgeon and transplant team.  I will have an incision from one side of my chest to the other and I really want skilled hands making that incision.
My meetings this past Thursday were with financial, transplant coordinator, MSW, dietitian, a pharmacist, Infectious Disease, and more labs. I was a little disappointed that some I met with seemed unaware that I was already listed or that I had already endured a battery of tests this past Dec.
Spectrum's team wants an abd/pelvis CT and a test to check your diaphragm's function--Wisc does not require these so this is more testing needed.
I've had so much radiation the past few yrs I worry about that and how that increases your cancer risk.
I still have not met the surgeon at Spectrum and he is going back to England for the upcoming wk so the team will meet the following wk.
I did learn more about the post-transplant meds from the pharmacist meeting and how most of them increase your risk for diabetes, hypertension, and high cholesterol--oh boy! And these meds are lifelong and expensive! Each center does post-transplant meds a bit differently as well.
Also these meds increase your risk for kidney failure, skin cancer, and B-Lymphomas--another Oh boy!!!
This is the info that makes me want to throw up. Do I continue? I feel I have little choice as my lungs are failing and there is no crystal ball to show my future.
So, I will trudge along this surreal experience and remember the Tim Tebow quote in my earlier blog.
Pray for perfectly matched, healthy lungs and that I can tackle this demon and come out successful on the other side.

Sunday, March 17, 2013


In the last week I have made my blog known, created a facebook page for networking,  and am currently working on another type of facebook platform.
I am overwhelmed with the support!
The t-shirts are selling very well at my work and am looking forward to seeing most everyone wear their shirt to work every Tues starting in April which is National Donor Month.
I want to personally express my gratitude here to all that are reading my blog and sending their love. If I could personally give you a hug then I would.
Fundraisers locally are currently being worked on, it is a lot of work and they wouldn't be possible without the help of my support system.
So, a big THANK YOU to Mehgan, Stuursy, Suzor, Tara, Julie, and Becky for doing what you are doing and researching so many avenues.
This journey will take a village of support and know your efforts do not go unnoticed.
I know many of you have expressed an interest to help and we will definitely need you.
It is tremendously hard for me to accept help, I'm use to doing the helping but I'm learning how to accept help.  Be patient with me.

I was recently talking with my son and the subjects of doctors came up (probably because I'm going to one every other wk). Eric said he wanted to be a doctor, I asked why.
His matter of fact response was, "To help mommy".  Of course I shed some tears as he looks at me strangely and continues to draw.  He doesn't understand the magnitude of what is occurring with me but he knows he needs 'to help his mommy.'
So to all of you that are helping Eric's mommy, Thank you from the bottom of my heart.

Wednesday, March 13, 2013

How to be an organ donor

Here's the link to sign up to be an organ donor in Michigan,

Thanks for considering this important yet difficult decision.

- "Blessed are those who can give without remembering and take without forgetting." Elizabeth Bibesco

- "Life's most urgent question is: What are you doing for others?"
Martin Luther King, Jr.

Monday, March 11, 2013

Its really public!?!?!? YIKES!

Tonight I created a facebook page with the help of Scoot and he helped me link everything.
I'm kinda nervous that this little blog is known with my friends and family, not because of the content but because it makes me exposed and vulnerable.  I like to keep a tough exterior!
I have created t-shirts with the help of Greg's friend Andy Spry. He owns a t-shirt shop in Greenville called Sports Galore.
I am very appreciative of his help in making the t-shirts and I'm very proud of my design. Who knew my kindergarten sketch could look so good!
Here are some pics:

I feel that it is now my mission to promote organ donation. If I'm not able to get lungs while on this earth then maybe I can help someone else.
Be an organ donor!

Friday, March 8, 2013

Just ask

I know my diagnosis/disease is complicated and confusing and questions are sure to arise.  Just ask if you have a question about my disease.  I've noticed people in my world that still don't understand what's going on but they have never asked.  I'm not sure if they don't want to bother me but know its never a bother.  Knowledge is power!

Tuesday, March 5, 2013

The Future...

I met with the transplant doctor with Spectrum Health on Monday. I believe it went well overall, he took my history and examined me.  They need to get my records from U of W and there should not be any further testing needed at this point--I think I've had every body system examined already!
 He agrees that it would be in my best interest to be listed at 2 places for a better chance at receiving lungs. My recs will be reviewed within their team and I follow up in 1mos.

Even though Spectrum is relatively new at doing transplants (heart transplant ctr is a few yrs old), they have recruited what appears to be an A team for the lung transplants. Every transplant center does things a bit differently when it comes to post-transplant care/meds but all have the same goal for the end-a healthy patient.
We have prayed about it, I have talked to numerous individuals who have inside info and so far no red flags have come up.

I did not sleep well Sun night and started to feel anxious again before meeting the doctor on Monday.  I knew what to expect but it is hard to relive it all again.  The statistics after a lung transplant are sobering, a 80-85% survival rate at 1yr, 50% survival rate at 5yr, and 35% survival rate at 10yrs.  I know those stats are for older patients on avg but I can't help but think about it.  And once I start really thinking about those stats, I wonder if doing such a huge life altering surgery is worth it.
 I could die from my current condition, I could die from the transplant, I could die tomorrow in some freak accident. The unknown is so hard and you can examine/worry about things until you are blue in the face but I was reminded of something today. One of the docs I work with recited a quote he read from Tim Tebow: "I don't know what my future holds, but I know who holds my future."
That is the truth, thanks for the reminder Langy!

Sunday, March 3, 2013

In Sickness and in Health...

We created our wedding vows but there were still the 'traditional' ones that were at the end as well.
In sickness and in health...does one really think about how deep that vow can be?  Sure, we get our spouse a kleenex or OJ when they have a cold but I personally never thought that we would be facing the sickness called B.O. in our marriage.
Its easy for the spouse to become forgotten, everyone always asks how is Joyce doing, what does Joyce need, whens the next appt? Its easy to forget to ask, "How is Greg?" Do not misinterpret my words, I so appreciate when people check in on my routinely, I just feel bad for my husband.

He never imagined that on 9-10-05 when he married me that 6yrs later he would be at my hospital bedside wondering what was wrong with me (yes our 6yr anniversary was at Butterworth Hosp).
He feels helpless that he can't help me, I feel horrible that I can't be an active and carefree wife.
Greg watches me struggle physically, mentally, emotionally, and spiritually.  He often is the one that sees me at my worse. He gets to deal with my crabiness way more than anyone else. I should be giving him my best me and he often gets the tired and worn-out me.

I know Greg is in this for the long haul and this has taken its toll on him.  Discussing funeral plans and writing cards to our son for him to open later in his life if I were to die are not happy topics.  We should be planning a vacation to Disney for Eric. We should be talking about furniture changes. We should be talking about whats for dinner, we shouldn't be talking about lung transplants and the possibilty of death.

God blessed me with Greg, I've heard all too often marriages that result in divorce due to life altering circumstances.  I know that we are in this together, we will continue to fight.  Make no mistake, it isn't easy and the past several months have affected our life but no matter what Greg will be there.

This post is for my husband:  the one who continues to pray for my healing, the one who is constantly by my side, the one who loves me unconditionally, the one who valiantly is honoring his wedding vows.
XOXOXO to Greg Jensen, my silent hero.