Kidney Kindness

We are proud to shout from the mountain top that our dad, husband, brother, Papa! Brother-in-law, uncle, cousin and friend Darrell Leines now has a strong, healthy kidney.  The transplant surgery was successful for Dad and for Dennis. The recovery journey has begun. 

Dad was moved from the transitional care floor to transplant floor 16 hours after surgery. The Double Ds, as we lovingly refer to Dad and Dennis, were very happy to see each other. 

Both of these guys are heroes in our eyes.  The post surgery discomfort and pain are not to be minimized. Their determination and grateful attitudes are admirable.  They are each doing all they can to regain their strength and meet the requirements to be discharged from the hospital and go home.   We anticipate Dennis may be discharged from the hospital Thursday and Dad on Friday or Saturday,   In the meantime, the nurses, care coordinators, dietitian,physician, and social worker are educating and enlightening us for post-transplant care, 

We want to thank you all for your prayers, calls, posts and support!!!! Words can't express what it has meant to Dad, Darrell and our families.   To our family members who couldn't be physically here with us, we send our love as you shared how hard it was to not be present. 

Surgery Day Update

The kidney transplant was completed  at 3:20 pm on Tuesday August 29, 2017 at the University of Minnesota hospital.  Arriving at 5:30 am, Darrell, Dennis and the support troupe began this long anticipated day with slight anxiety, great anticipation and as always, a bit of humor in between the seriousness.  With family and friends onsite and online, the prayers and support from across the country was evident and felt like angel wings holding us all up for this journey.  The next 12 hours we were guided by the wings of angels including Nurses, anestheticians, neuphrologists, and surgeons who calmly and confidently held Darrell and Dennis in their care.

The details of the surgeries are less important at the end of the day as the outcome is the miracle.

Together at 4:15 pm,  we wait for our chance to see Dad in person, give him big bear hugs (gently) and whisper “we love you.”   Our angel with the incredible attitude Dennis is in his hospital room trying to rest and recuperate while his brothers lovingly crack jokes and help him put his wedding ring.  And you know what Dennis wanted to know?  “How’s Darrell doing? Have you seen him?”  Rest assured, the Double Ds will soon be face to face with a bond that the rest of us only get a glimpse of their brotherhood.

Today was the day….

Life Changing Care Providers

What happens when you hear word that you can’t get a new kidney as planned; or that undiagnosed spots have been seen on your lungs; or that the fatigue and weakness is kidney failure and not a reaction to the antibiotics?  It’s an emotional rollercoaster in which two days without answers feels like two months – and can throw one’s health into a downward spiral.  I watched it happen with my Dad.

Take the same scenario but now bring into the picture “life-changing care providers”.   Their care is medical and far more…. Each one of these professionals spent time to really get to know my Dad and took time to share honest answers and resources.  We doubt that any one of the medical professionals know how they changed our life and helped Dad and our family stay hopeful and positive.

Big shout out to Dr. Stuart (Park Nicollet nephrologist) whose guidance, ongoing care, and approval to have Dad go on his fishing trip is, in part, responsible for Dad’s health and wellbeing; the Davita staff (New Hope location) whose care, information and support 3x a week has been life-saving; and Dr. Cavert (University of Minnesota Infectious Disease) who willingly returned phone calls and spent time explaining and responding to our questions which made a big difference!  

Thank you to each one for seeing my Dad for who he is --- IMPORTANT!!!

News Flash:  Dad was approved by the University of Minnesota Kidney Transplant Team to proceed with the transplant on Tuesday, August 29th.  We wait now for donor Dennis’ final approval on Monday, August 28.

Nearing The Finish Line But Not The End

Over the past four months we have learned much about health care, kidney failure, dialysis…and compassion, community, family and friends.  You may notice that after having the transplant surgery abruptly and unexpectedly stopped just prior to Darrell and Dennis being wheeled into the surgery room on March 7th, our updates on this Kidney Kindness blog stopped as well.  We retreated to focus on Dad and responding to treatment for the bacterial infection in his lung and the start of dialysis to maintain his health. 

Your prayers, thoughts and sharing of information have been incredible and have brought us back to preparation for Dad’s kidney transplant surgery scheduled for Tuesday, August 29th.  Dad’s cousin Dennis has changed jobs but he never changed his mind about giving his kidney to Dad.  We call him our angel.

Friday (August 25th) Dad goes through ½ day pre-op tests, exams and ultimately our hope for the final approval to proceed to transplant surgery on Tuesday (29th).  Dennis has pre-op tests and exams on Monday (28th) and we anticipate approval to proceed with the transplant at the University of Minnesota the next day. 

We will be back online to share updates and report the progress of the transplant and recovery.  The prayers that have been shared across the country have been amazing.  The support has been incredible and helped us maintain a healthy perspective through some challenging times. Thank you to our family, friends, community, and strangers who have been there for Dad, Mom and our entire family. 

Join us on August 29th sharing prayers and pictures of Kidney Kindness for Dad and Dennis.  We’ll be back with updates!

The Medical Journey Continues

We continue to have an amazing community who have supported, checked in and followed up with us during this intense medical journey that seems to be never ending. All the kind words and encouragement keep our heads up and moving forward, even with the set backs that have come before us.

Thank you for your patience on this update that came as a shock to us and we have been processing. After being pulled off the surgery table on March 7, 2017, Dad has undergone additional testing for the unknown grey area that showed up on a final lung scan. It was determined after the CT scan and biopsy on March 24, 2017, that though it was not cancer (THANK GOD), it was a serious infection known as Actinomycosis. It is not a standard infection, like strep, but a slow to grow and slow to respond to antibiotics bacterial infection that is rare.

In a healthy person, they would do a 6-12 month intense round of antibiotics but with Dad being a transplant-in-waiting patient, who has deteriorating health, they need to hit this as hard as possible and fast. That past Tuesday, April 4, he went through a quick out-patient surgery to put a picc line in that gives penicillin straight into this lungs for a 4-5 week trial. This in combination with an oral medication called Doxycycline, will hopefully decrease or take out the infection. After this trial period, Dad will go back in and have another round of tests done to evaluate the bacterial infection's status.

Please keep praying that this will work and we can move forward with the transplant as soon as possible!

During all of this, Dennis remains a great support and is committed to being a donor, whenever we can proceed. Thank you and we love you Dennis!

Donation Options

Online

Use the GoFundMe account.

Check/Cash

Make the check out to :
Wayzata Community Foundation w/ memo line "Darrell Leines Kidney Fund"

Mail the check to:
CEL Marketing PR Design
Attn: Darrell Leines Kidney Fund
15600 36th Ave N, Suite 120,
Plymouth, MN 55446.

All Check/Cash donations through the Wayzata Community Foundation are tax-deductible.

Anonymous Donations

If you wish to remain anonymous, you can choose so when making your online donation through GoFundMe or if you are sending check/cash please include a note indicating that you want to remain anonymous.

A huge thank you for all the generosity thus far, we cannot express our appreciation enough!

Denied by the online paperwork? You may still be a candidate!

If you are actually denied as a match that is NOT the end of the road.

First - contact the coordinator, Marci Siers at msiers1@fairview.org or 612-625-5115, as the automated paperwork doesn't take into account all factors. Many have been denied due to weight:height ratios based on gender. This is not taking into account your built, fitness, etc and will deny a lot of people who can still donate and are a match.

There is also something called a "Paired Match" where you are still willing to donate but it would be a 4 way swap. The specialist would find another donor pair willing to do the swap and make it happen for everyone.

Paired Exchange Donation Route

The paired exchange is essentially a 4-way swap where you and Darrell will be paired with another couple. This allows each recipient to receive the kidney donation that they need.

If you are interested in this possible route after finding out that you are NOT a match to Darrell please contact us directly.

Cindy Leines 612-998-0821 or cindy@celpr.com
Darrell Leines 763-258-7041 or idmm@aol.com
Chelsea Janke 612-998-0784 or cmjanke@gmail.com

More Detailed Information Coming Soon.

Considering the Gift of Kidney Donation?

OVER THE PAST FEW MONTHS, WE HAVE BEEN REMINDED THAT LIFE AND HEALTH ARE PRECIOUS AND SHOULD NOT BE TAKEN FOR GRANTED.

As many of you may know, Darrell was diagnosed with kidney failure, a shock that came to us all. We continue to be grateful for our family and friends - and especially his nephrologist, Dr. Stuart, whose straight forward diagnosis and treatment provides direction and inspiration on this new journey. Many are asking questions and what they can do to help or possibly be a live donor. Below is the main information that you need and ongoing updates as we get them. Thank you for considering making this amazing gift of live donation!

P.S. If you or someone you know has blood pressure that runs high, consider contacting a nephrologist like Dr. Stuart right away.

If you are considering the gift of kidney donation, here is what we know:

  • Donors can be family members, friends or complete strangers
  • The best option, at this time, is for a kidney donor who is a perfect match (blood/tissue) or someone known to us who is not a perfect match but chooses to do the Paired Exchange.
  • All health care costs for the donor are covered by our insurance (including any blood tests required to see if one is a match)
  • Our niece Becca donated her kidney to her aunt three years ago and Becca has continued her healthy active lifestyle without any issues. Becca is willing to talk with anyone interested in knowing more about what it was like for her as a kidney donor. (We can put you in touch with her!)

Diagnosis

We are not sure who has all heard as we have just started sharing details of my dad's health but has had some complications over the past year, mostly with his blood pressure.

After following his doctors orders to the T (my dad is a rule-follower) and getting his blood pressure down he was still having some issues. He decided to go see a nephrologist and it was found that he was in the early stages of kidney failure. A shock to us all, he immediately began the journey of working with specialists to see what he could do as his kidneys were only functioning at 10-20%. This past week he had a followup visit and he has done everything that he can to be healthy and ready but it's time that we go in search of a donor for him as they are functioning at less than 10% making him considered actively in renal kidney failure. He is on the donor list but that can be at least 5 years to find a match. His doctors have stressed that we need to go out and actively search for a living donor that we may know or have a connection with. My cousin, Becca, did this for her biological aunt last year and is open to talking to anyone who wishes to about the process. If you or anyone you know is interested in finding out more please feel free to reach out and I can tell you what I know and/or put you in touch with Becca who has taking it upon herself to be our guide for this journey. 

The timeline that we are dealing with is 6 months - 1 year with the specialist wanting us to have a secure donor by Christmas or he will need to go on dialysis to prolong life until we can find one. This is a big gift to ask for but if you or anyone you know has ever considered being a live donor, please consider getting in contact with our coordinator, Marci Siers (msiers1@fairview.org or 612-625-5115) A couple of things to note that helped put others minds at ease:

  1. You can fill out the paperwork and go through the screening process and it is 100% anonymous. No one except you will know that you have done it until you make your decision and are ready to share that.
  2. My dad's insurance covers everything for you.

  3. There are 3 phases: 1) is just paperwork online asking about your health, height, weight, etc. if you are "denied" that doesn't mean that you cannot be a donor, you will receive a call from a consultant and can continue the process if the "denial" is something you can change like weight-height ratio, health habits, etc. just tell them you wish to continue with the process and see what the possibilities are. 2) Blood and health screening - you would go to the doctor and get started in the screening process (you will get a packet in the mail after step 1 that explains everything about step 2. 3) if it is deemed that you are a match or possible donor you would need to disclose this to us to proceed. Then they would start the medical matching process and preparation for donation. This is the area that I'm not fully clear on and Becca is helping to guide us through. We can get more information or you can ask the consultant about it when they call after step 1.

  4. Lastly, if you are actually denied for a match to my dad that is not the end of the road. Please contact the coordinator, Marci Siers at msiers1@fairview.org or 612-625-5115, as the automated paperwork doesn't take into account all factors. There is also something called a "Paired Match" where you are still willing to donate but it would be a 4 way swap. The specialist would find another donor pair willing to do the swap and make it happen for everyone.

Thank you for taking the time to read and even consider this information. It is really hard to ask people to considering making such a big gift but the specialist has told us we need to get moving now! Feel free to pass it along to anyone that I may have missed or if you know someone who is a live donor. We will update as new material and facts become available to use.