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Happy New Year Friends and Family!
The goal of sending out a Christmas card this year came and went…now we are into the New Year, the second month of the New Year. We looked forward to sharing a few of the pictures from what was without a doubt an amazing family vacation we took last summer out to Yellowstone, Griswald-style. We rented a friends trailer, hooked it up to the pickup and off we went. Our first real family vacation…3000 miles when all said and done!
Our trip was amazing; perfect weather, breathtaking sights and activities that none of us will forget. We white water rafted down the Yellowstone River, horseback rode in the mountains covering three states, sat in hot springs and we (Andy) drove us up and down the Needles Highway as well as Beartooth Pass, stopping atop the highest peak, 10,000 feet above sea level.
As the New Year is barely underway, we have had some startling news regarding Andy. We are in crisis and frankly I can’t think of a better way to share this.
Systemic Lupus has been a sleeping giant (in remission) in Andy’s body for well over 15 years. This would explain why many of you don’t even know that he became severely ill only 5 months after our wedding 17 years ago. He became fatigued, sore, weak and extremely swollen; we joked referencing the Michelin Man, picturing his white rolls surrounding him. After soup, Tylenol and rest did nothing he sought out help from his Doctor whom he had not seen in years. He was referred to a Nephrologist who turned out to be a Godsend. Dr. John Gray has helped Andy and me through the highs and lows of living with Systemic Lupus, an autoimmune disease in which the body attacks itself and causes damage, major damage, especially to his kidneys.
A kidney biopsy was done to confirm the illness, followed by an amazing quantity of medicine and two rounds of chemotherapy within the first few years to halt the damage being caused to his kidneys. Andy has spent many days and nights in the hospital with swelling around his heart, blood clots following biopsies and extreme high blood pressure. He has had some painful things happen in and to him, which I know he would like to forget. We were told that we may not be able to have children after his chemo. God felt differently; we were blessed with Grace (11) and Eli (7). Both healthy, amazing kids! Andy has never felt sorry for himself; he has continued to care for us, work for us and love us despite the pain and discomfort he has endured over the years. He has for the most part been in remission for the last decade.
A couple of years ago, his Nephrologist, Dr. Gray, advised Andy to go to the U of M to get the day of testing and information gathering done to officially place Andy on the Donor Recipient list for a harvested kidney. The realization that the time for this was finally nearing was rattling, considering he was in decent health at this time. We met with Doctors, Social Workers, Nutritionists, PA’s, Patient Care Techs and financing throughout the morning. Then Andy went on his own for an afternoon of testing and assessment to confirm that he was indeed in need of a lifesaving kidney. Andy is currently about 3 years away from the top of the list for a kidney. There are more than 70,000 people on this waiting list. Only slightly over 50% of people on the waiting list will receive a kidney within a five year time frame.
A few months after the day at the U, we received an urgent call from them looking for Andy; there was a kidney available for him, immediately. They needed an answer if he wanted it within 15 minutes. After calling his Nephrologist, prayer and some quick discussion we loaded into the car and headed downtown. We had not shared Andy’s health status with our kiddos, so we had to stop at their school in order to tell them Daddy was heading to the hospital for a lifesaving operation. Of course we did our best to soften the news with prayer and smiles, but our 10 year old saw through our façade. Grace was old enough to understand that this was serious and was upset. Eli, 6 years at the time, wanted to get going so he wouldn’t miss recess.
We spent the day at the U getting prepped for the kidney transplant. You might wonder how he jumped the list. He was eligible for several reasons; the kidney was intended for another patient who became ineligible mid-operation. The kidney needed a recipient who had not had dialysis, who was nearby, who well enough at that moment among other medical reasons. At the very last moment however, the team at the U had realized that the kidney had become contaminated earlier and needed a consent form to be signed by Andy recognizing this, if he still wanted it. We agreed, then, the legal department wouldn’t allow Andy to sign any forms, he had been already given pre-op meds. So as his Care Director, I was going to sign it. They strongly advised not to, as the kidney was now nearing expiration. What a blow, we went home.
This was over a year ago; it was just a few weeks before Christmas. We won’t know for certain why that all happened this way, we can only focus on today, not dwell on why the Lord directed that day’s events that way.
Just before Christmas this year, Andy began to not feel well. His blood pressure sky rocketed to 210 over 120 for weeks. Andy went in for his routine labs (which he has done monthly for the last 17 years). He had remarked his concern that his kidneys were failing. We learned that yes, his kidneys were critical, 5% functioning, Stage 5. The Doctor ordered he start dialysis immediately, asap. Andy has had a port/catheter placed in his abdomen to accommodate Peritoneal Dialysis (PD). This type of dialysis takes place during the night, every night at home. PD allows Andy to have his days free. As we enter the first full week of home PD, Andy is adjusting to the treatment physically and mentally. Each night seems to present new challenges and hurdles we hope are only due to the newness of this. We are looking forward to seeing improvement with the dialysis in his current health and extreme fatigue being caused by his low functioning kidneys.
This letter is our plea for mercy and miracles; it is for us to ask you if you or someone out there would be Andy’s lifeline, his living donor. We realize the enormity of the request; we match the boldness of this with the knowledge that you would be giving Andy a chance at quality of life… an extended life. It has been documented that a person that receives a kidney from a living donor generally lives longer and healthier than one that receives a harvested kidney. It is expected that a kidney from a living donor will provide an average of 18 years or more of good health for the recipient while the alternative is less. To this point, a close friend donated her kidney to her brother over 22 years ago and he is still doing great, as is she! Another friend of ours donated one of his kidneys to another mutual friend last year, also both doing incredible.
We were educated by the staff at the U on what is involved for a person to check out if they are eligible to be a living donor. It would be an answer to our prayers that several people would sign up to be checked as a match for Andy, as not everyone will be eligible or a match. We humbly ask that you share this letter with all you know. If you feel like you would be willing to give the greatest gift of your lifetime, please visit this website and begin the journey with us. This is the website where there are many questions answered and where you begin the process. The online form is confidential, and we will not know who has been screened unless you tell us. It takes about 15 minutes to fill out.
Thank you for reading and letting us share our lives with you all,
Blessings in this New Year,
Andy, Mary, Grace and Eli
1 Corinthians 13:13 And now these three remain: faith, hope and love. But the greatest of these is love.
YOU WILL NEED ANDY'S BIRTHDATE Removed for security - PM
Potential Organ Donors for either Direct Donation (given to Andy) or Paired Exchange (Given to another patient who also has a living donor, that matches Andy and you match them, a cross-match).
You should go to this website to register:
Call: 612.625.7010 Living Donor
612.625.5115 Transplant Office
NKF PEERS for Living Donation is a FREE telephone-based support program if you are considering being a living donor, but would like to talk with someone else who has donated, a peer mentor can talk with you.
Andy is registered with the United Network for Organ Sharing (UNOS) http://www.transplantliving.org
A not-for-profit organization that provides administrative services for the national Organ Procurement and Transplantation Network (OPTN) http://optn.transplant.hrsa.gov/
1.888.894.6361 UNOS - Anyone with questions can call this number.