She took part in a routine blood screening at the fitness center and the results showed that her kidney function was quite abnormal. She was also having a metallic taste in her mouth, loss of appetite, and upset stomaches. Our family doctor repeated the blood test and the results came back even worse. He referred us immediately to a nephrologist. This was in August of 1996.
We met with Dr. Flood on Sept. 10th and on Sept. 17th he performed a kidney biospy. Plus a whole battery of questions. Examples; Drink any moonshine? Eat any lead paint? (Well gee Doc, I have a still in the backyard and I burn boards with lead paint on them to fire it up, doesn't everybody?). Anyhow, the biopsy showed taht her kidneys were badly scarred and inflamed and the her kidney function was down to about 10 percent at that time. Dialysis was in our immediate future, probably within a month. This was on Friday the 13th of Sept. that we recived this information. He also started Lil on very high doses of prednisone and planted the idea of a transplant. He diagnosed her with acute and chronic interstitial nephritis. An end stage renal disease.
Well, we made it through 1996 without starting dialysis. It also marked the end of her job at Iowa Lutheran. After 17 years of good and faithful service they didn't need her anymore. The new year 1997, was her starting a new job at Iowa Methodist Medical Center as a treadmill tec. Looking back, they really did her a favor as this put her on straight days with weekends off.
In May of 1997, Dr. Flood suggested to us that we might want a second opinion and suggested either the University of Minnesota or Mayo Clinic. We went to Mayo Clinic the end of May and went through pretty much the same tests and questions. We dealt with a Dr. Carl Anderson who was originally from Winterset, Ia., a town about 25 miles from us. We really liked him but he and the staff at Mayo could only confirm Dr. Flood's diagnosis and treatment.
It was at this time that we really got to seriously thinking of a transplant (we had also met the transplant coordinator and the transplant surgeon when we were at Mayo). Both Dr. Flood and Dr. Anderson had talked about doing a preemptive transplant meaning doing a transplant before Lil's kidneys failed completely and before dialysis was neceessary.
We decided to go for the transplant. As a nurse Lil had taken care of renal patients and she did not want to be one herself. However, getting listed as a transplant candidate proved to be (to us) a long drawn out process. Meeting with the transplant coordintors, social workers, dietitians, Doctor's, etc. And of course, more tests.
It was during this time that we first met Dr. Franklin, who at that time was the only one in Des Moines doing kidney transplants. What a good impression he made on us. Such a kind and patient man who explained every detail and answered every question without making us feel like dummies or like he was talking down to us as so many Doctors do. We decided then to have the surgery in Des Moines if at all possible.
On September 18th, we finally made the transplant list for Iowa Methodist. We also decided to try to get on the list at Mayo Clinic which we did in November. The reason that we wanted on two lists was because they were in different regions. We decided to go to whoever got us a kidney first. We were also considering going to Omaha too.
When I say we were on the list, that means for a cadaver kidney. The average wait in the Midwesst is approximately 2 years, 3 years on both coasts. At this time we also began to explore the possibility of a living related donor, with a sibling having the best chance of being a match. I was immediately ruled out because of heart disease and hypertension. Lil's mom, sister Joyce, cousin Barb, cousin Jeanne, niece Connie, and our daugther Sarah were all tested with Joyce being the closest match. However Joyce also tested positive for hepatitis C ruling her out. It just wouldn't do to pump Lil full of immuno suppressants and then have her die from liver failure. So the wait for a kidny continued.
Also in September they needed to create a dialysis site known as a fistual in her arm. A fistual is so access can be made to the bloodstream. It is done by a vascular surgeon grafting a vein and an artery to create like a super size vein that hopefully won't collapse from repeated neddle sticks. When that doesn't work they can do a gortex (like rubber surgical tube) implant. Remember, I'm no medical professional, just a postal worker but that's how I remember things.
In January 1998, the fistual still hadn't developed as hoped so another operation was done on Lil's arm to revise the fistula. Both fistula surgeries were done by Dr. Stubbs in Des Moines. If this didn't work out then a gortex graft would have to be done.
Lil and I have always fought over the thermostat both at home and in the car. She was always cold while I'm hot. At this time Lil was getting very, very, anemic. This means she was even colder than usual. She would huddle up and bundle up under blankets and covers and put on every warm stitch of clothing she owned while I'd be warm enough in the house to just wear my underwear. And sweating. When we'd go somewhere in the car she would have to turn the heat up to blast furnace levels while I'd have to open my window and stick my head out. Thank God we can laugh about it now.
On February 6th we went to see Dr. Flood. On this date he informed us that dialysis could be put off no longer. He didn't want Lil to get too sick or weak that if a kidney came along she wouldn't be able to have the surgery. Also her fistula still wasn't ready so that very afternoon a subclavian catheter was put in. This means a tube was inserted in the jugular vein of her neck, threaded down through her chest, and finished with two tubes about 6-8 inches long that were left hanging out just below her collar bone. One tube is for blood going to the dialysis machine and one for the blood coming back. Dialysis was to start the next day, Sat. Feb., 7th. This was a very hard time for all of us. It was tough for Lil and it was tough for me to try and be cheerful and positive and supportive when I didn't feel too cheerful and positive. And as Lil can tell you, even after almost 27 years of marriage, I still don't handle tears very well. I don't know if it was harder on Lil to go through this or on me to watch her.
But we made it through that first session and were preparing ourselves to keep it up for as long as it took. Still, she had gone from Aug. of 1996 to Feb. of 1998 on 10 percent or less kidney function without dialysis.
We had eaten our supper and then went to the HalfPrice Bookstore in West Des Moines and were just getting into my truck when my cell phone ran. It was Sherry, our transplant coordinator from Iowa Methodist wanting to know where we were and what our plans were and if we would like a kidney then maybe we better come to the hospital as soon as possible. Well, it took us about 10 minutes to get there. If I remember correctly this was about 8 P.M. So were then admitted and started all the necessary paperwork that wasn't already done. Also made a few phone calls, mainly to our kids and two of Lil's closest friends, Terri and Sandy. Sandy had a dream sometime before this that Lil had recived a kidney and that it came in a Russell Stover chocolate candy box and she had told Lil about this dream so when Lil got a hold of Sandy's answering machine she said that her Russell Stover box had arrived. As it turned out, this was the one time when Sandy didn't check her answering machine. She wasn't to learn of this until the next day.
Anyways, they took her to surgery shortly after midnight and then the waiting began. Before the surgery both Dr. Flood and Dr. Franklin said that this kidney was really a good match. A better match than her sister's would have been.
At This point all that we knew about the donor was that it was a teenage girl who had been in an automobile accident. First someone said from Sioux City and then someone else said from Cedar Rapids. And to be honest, at that point in time it didn't seem important where she from from. I just wanted Lil to get through this surgery and to get better. Whether they knew more than they told us I don't know. I also don't know why the person who was first in line for this kidney wasn't able to have the surgery, whether they were to sick or had and infection or what.
Periodically, Sherry and /or Diane, the two transpant coordinators would come out from the OR and give us a progess report. I guess I didn't mention that our three daughters, myself, and Lil's friend Terri and her husband Frank were the only ones in the waiting room. Our son John lives in Fairfield, Ia. and worked nights at the time and I wasn't going to call him at work when there was nothing he could do. I figured I could worry enough for both of us. It was at this time with nothing to do but wait that I really started to think about our donor. I knew somehow I was going to have to find out more about her.
Finally, I think it was about 5 A.M., Dr Franklin came out to see us. The surgery had gone very well and smoothly. He said that the kidney had been on ice for 15 hours or a little longer but had pinken right up and immediately started producing bloody urine, a good sign. He said everything looked very good, that they would hold her in the recovery room for awhile and then take her to her room. And about 6:30-6:45 A.M. they did take her to her room.
It was at this time that I had some phones calls that I knew I had to make. The first one was to Lil's Mom and Dad. At this time too, I was also pretty tired. I'd worked all day, been up all night and been riding on an emotional roller coaster. As I sat there talking on the phone, looking at Lil and our three daughters, I was doing all right until Lil's Mom asked where the kidney had came from. At that point things just overwhelmed me all at one. I knew that somewhere there was a family going through a living hell and while I sat there with my family intact, another family had just had its heart ripped out. I knew how much I would be hurting in their place. I started crying and I couldn't stop and I couldn't talk anymore. And I knew that I had to somehow thank this family for giving us this gift at such a time for them. Lil and I over the years have known so many people who have had to bury a child. I was always so thankful that I never had to. I just don't think I'd be strong enough to take it. People shouldn't have to bury their children. The next time Sherry and Diane came in I asked them about thanking the donor family and I was told that if I wanted to write a letter they would see that it was forwarded on to the family. This I promised myself that I would do. And I prayed for this girl and her family wherever they were.
Lil continued to do well until about Wed. She spiked a very high blood pressure that they couldn't bring down and she was becoming disoriented and confused. That was when they took her to ICU. They finally got her BP stabilized but her mind was scrambled and they didn't seem to know why or what was causing it. She wouldn't know where she was, who we were, or much of anything else. Plus she was hallucinating. We were scared about whether we would get her back and how much we would get back. Evidently, they way I understood it, it was a buildup and a combination of all or some of the medicines she was being given. As she was given some different meds and others were stopped and she was able to pass these from her system she began to come back to us.
On Sunday she was able to return to her regular room. However, she was still having to do dialysis. Even though the new kidney was producing urine it still wasn't filtering Lil's blood like it should. She was going through ATN. I forget now what the letters mean but it amounts to ging through a period of shock. Dr. Franklin said it would come around and so did our nephrologist Dr. Flood, and his partners Drs. Leisy, Chandron and Shadur. They were to be proven right, it was just going to take a few weeks. But Lil was getting visibly better. By mid March her kidney function was slowly starting to improve and 24 days after entering the hospital we got to take Lil home. She still needed to have blood drawn 3 days a week and to see the doctor but at least she was home and by now completely OFF of dialysis.
In early May of 98 I went in for an angioplasty and a couple of stents so Lil and I were both at home for awhile. Then in mid May Lil was well enough to go back to work part-time. And then in early to mid June back to full time. And then on June 12th a letter from our donor family!!! Now we learned that our donor was a beautiful 15 year old girl from Pierce, Ne., named Holly Lea Nelson. We learned the tragic details fo her accident and her passing from this life. Holly's mother, LeAnn Nelson, wrote the letter. The love that poured from its pages was truly touching and humbling. It left me in awe. It just blew me away when I found out that after giving us such a gift that she prayed for us every day too. She also sent a picture of Holly and told us all about their family. Also told us about the website in Holly's memory. The work and the love that LeAnn has put into that is really something. When I visited this site was when I discovered that Holly and I share the same birthday, Oct., 30th. And the pictures and poetry brought tears to our eyes. And they still do.
We now exchange letters, e-mail, birthday and holiday greetings, and have talked on the phone a couple of times. We really look forward to and treasure each letter and message. For instance, in one letter LeAnn tells that she has a bay window where she burns a light or or a candle every night for Holly and her recipents. I often think about that small town in Nebraska where a light burns in a bay window and think about it whenever I see a window with a light in it. Its a comforting feeling. In another letter she tells us of Holly's desire to be an organ and tissue donor and how she, LeAnn, feels a drive to let people know of Holly's legacy by promoting organ and tissue donation. She really felt this dive but didn't understand it. Well LeAnn, I think I know excatly what you mean. We haven't yet met in person but hope to do so soon.
I know that it will be very emotional for all of us. I know that we will share some tears but we will share some joy too. It reminds me of one of Holly's favorite Bible verses Ecc. Chapter 3, verse 4. "A time to weep and a time to laugh". God will let us know when its time and when everyone is ready.
The bond that we share with the Nelsons is unique and very heartfelt. It's hard to describe the love that I feel for this family. They will always have a special place in our hearts. Whether they know it or not and whether they like it or not they are a part our family now. And they always will be. We think about them each and every day.
To Holly's parents Jeff and LeAnn and to Holly's sisters Heather and Haley, thank you all so very, very much. We were so very fortunate that organ donation had been a subject of conversation in your home and that Holly had made her wishes known to you on the subject. Many people do not realize that just having a box checked on your drivers license or carrying a donor card is not enough. The next of kin must consent for donation to take place. People need to share this decision with their loved ones and get assurances that their wishes will be carried out.
Through organ and tissue donation a person can touch so many other lives. It's a way to live on in the hearts and minds of others and both save and improve the quality of their lives. And as LeAnn is fond of saying, it gives them not only a second chance at life but a second chance at salvation. One of my favorite bible verses is from the first chapter of Gensis "And God created Man in His own image". Isn't it almost God like to be able to give life to others? To be able to heal the sick, the blind to see, or to bring someone back from the edge of death? He gives us that chance.
Here in central Iowa a lot of the kids are wearing bracelets and pins that say WWJD. This stands for What Would Jesus Do? I think today that maybe He would be an organ and tissue donor. So many things we know now that we didn't know when we got into all this. I wish that we known about the "Life From Life" transplant support group here in central Iowa while we were waiting for a transplant. That was when we really could have used a little positive thinking and reassurance. Maybe we can get some of our local transplant coordinators to get out this information.
We didn't know about ISOPO (Iowa Statewide Organ Procurement Organization) now known as the Iowa Donor Network. We had no idea of the job these people were doing or that they even existed until after the transplant. The job they do with the donor families and for organ and tissue donation is truly magnificent. More people should kow about the job they do. They are world class.
While knowing that a kidney from a cadaver donor meant that it would come from someone who had died, it seemed rather abstract and distant to me until reality smacked me in the face with it. I probably should have been better prepared to deal with it than I was but how do you prepare for it? Maybe more information and education would have helped before hand.
I am going to try to thank all the people who played a part in all this. I will try my best not to leave anyone out but if I do let me know and I will correct this. I don't pretend to know the mind of God or His purposes but for some reason in the great Tapestry of Life, He has woven and entwined the threads of our lives and brought them together.
Second thanks goes to Holly. You will always be our special angel. When I look at the sky you are always the brightest star. We are grateful that you shared our decision on organ donation with your family. Such a gift of love defies words. I hope that when my time on this earth is through and when I stand in judgement before God that He will frogive me for some of the things that I have done in my life and we can meet in Heaven.
A very special thanks to the Nelsons. To Jeff, LeAnn, Heather and Haley you will forever have a special place in our hearts. You will always have our gratitude for honoring Holly's wishes. May God bless and keep you always.
To Lil. For richer, for poorer, in sickness and in health, til death do us part. We've certainly hit a few rough spots and weathered a few storms haven't we? But I think we're stronger for it. There's nobody I'd rather spend forever with, I love you.
To our children Sarah, John, Mary and Rachel for your love and support. Especially the two youngest, Mary and Rachel who were still at home when all this experience took place. They were exposed to an awful lot in a very short time and had to do some growing up in a hurry. I'm sure that the experience will stay with them for the rest of their lives and affect their values and thinking. They've seen what the power of God and the power of love can do.
To my parents for taking me to church and Sunday school and establishing a foundation of faith that even when I strayed far from it and it lay dormant, it would be waiting for me to come back to it.
To Lil's parent for raising such a wonderful daughter.
To Irvin (Newt) and Wilberta Clendenen for taking a wild and troubled 17 year old from California into their Iowa home back in Jan., of 1969. You gave him love and guidance and it was where I met Lil. Everything I have in this life I owe to you.
To Dr. Franklin for his wonderful combination of skill, patience, compassion and caring. You are the best argument for cloning I know. I'd like a clone a million of you and put one in every community.
Dr. Flood for all that you have done. You were a real straight shooter who always told it like it was, even if it wasn't what we wanted to hear. Thank you for caring so much.
Dr. Flood's partners Drs. Leisy, Chandron, and Shadur for your care and assistance.
Jessica Looper, Hollys good friend who has been such a good friend to us too. We really appreciate your letters, e-mails, and cards.
To the staff of Dr. Floods office. Teress, Teresa, Martha, Linda, Cathy, Terri, Jan (who is fighting her own barrle with breast cancer), Karen and all the rest. Thank you all for your love and support.
To the nursing staff of 2 South at Iowa Methodist. Sue, Dot, Melanie, Julie, Trish and all the rest were truly wonderful, loving and caring.
Heather who worked nights in ICU. You were a breath of fresh air. Your kindness and caring will never be forgotten.
To Lil's four best firends Terri Martin, Sandy Miller, Cindy Dryer and Terri Fazio. Four people so very different and yet so much the same. You guys really went above and beyond the call of duty. We can't begin to thank you enough.
To the Life from LIfe support group for letting us draw from your strength. Just being around you gives me a lift.
To those of you who tried to donate a kidney to Lil a very heartfelt and special thank you for caring that much.
To Sherry and Diane our tansplant coordinators at Iowas Methodist for all you've done and your continued friendship and support.
To Michelle Kreps our tansplant coordinator at Mayo Clinc.
To the people at ISOPO, now the Iowa Donor Network, Dave, Raelynn, Julie and the rest, you guys are awesome. More people should know about the job you do. You really make it happen.
To the dialysis techs who were so good.
To Gus and Bobbette, my supervisors at the post office. When I had to take time off for something they really worked with me even with short notice. It was much appreciated.
To Marge Saul, Lil's boss at Methodist for being so flexible, compassionate and understanding.
To Lil's coworkers at Methodist, Carolyn, Joan, Judy, Ed and Doug for taking up the slack during her illness and surgery and for all the cards and visits and good wishes.
To Lils former coworkers from Iowa Lutheran for all their visits, cards and support.
To Pastor John Long who stopped by to pray and visit with us in ICU at a very hard time for us even though we weren't members of his flock. You must have been guided to stop by when you did.
To out circle of friends who sent cards, wishes, prayers, called, brought meals after Lil came home and expressed concern. It was much appreciated.
I certainly wouldn't wish this transplant experience on anybody. But we have met and continue to meet the most wonderul loving and caring people as a result of it.
Lord, help me to remember that nothing is going to happen today that You and I can't handle together.
This is the day that the Lord has made; let us rejoice and be glad in it.
Don't take your organs to Heaven-Heaven knows we need them here.
P.S.~ While we still don't know exactly what cause Lil's kidney disease, it is now thought that it might have been due to a untreated strep infection.