April 29, 2020
Monday, April 27, 2020
Four weeks ago today, we got a call that Karl was on alert – again – for a deceased donor kidney. This time we asked where he was on the list and were surprised that he was number 7. We didn’t think they called that many people. He had been 1st, 2nd, and 3rd on the list for a specific kidney, but never 7th!
How does that happen? First on the list and then seventh? It all depends on how Karl’s profile matches with the current kidney, and there are over 30 things that are considered in each match. Not only how long the recipient has been waiting, but blood type, blood antigens, and other considerations. They want to be as sure as possible that the recipient’s body will not reject the foreign kidney.
On that Monday, 4 weeks ago (seems like months!) we didn’t expect that Karl would actually get to the top of that list of 7 and be called to get the kidney, but he was! With one hour to prepare, we were on our way! I don’t think I stopped smiling the whole 3 ½ hour drive to the hospital! It helped me stay awake!
Since then, there have been lots of challenges, especially at first. Some days I had to tell myself to smile so my face wouldn’t turn into etched lines of worry.
This has also been one of the most beautiful experiences of our lives! We have been blessed in so many ways! So many people have helped us with food, faith, flowers, cheerful calls and texts, prayers, and offers to help in every way possible. We are so grateful and feel so humbled to be surrounded with so many giving, serving people!
In return, we have tried to give to others in any small way possible. I think that has been one key to the progress Karl has made. He keeps trying to figure out how to help others. Not that service is a cure-all, but that keeping an attitude of gratitude and service always makes things better.
I was told one time, many years ago that “good friends will be a blessing to you.” I have seen that throughout my life, and it is certainly true right now!
Now, we are preparing to go back home! We are so happy that Karl is well enough to do that! I think I will smile the whole way again! :-)
Thank you to all our friends, family, and everyone! We love you!
April 14, 2020
4/10/2020
Hi, this is Karl. I’m the proud new owner of a shiny new partly used kidney! I’m so grateful to the donor family and sorrow for their loss. I hope that they will be blessed a thousand times for their sacrifice. I never used to pay much attention to organ donations, but I’m tremendously glad for the program since it turned out that I was one of the ones in need.
I thought I’d share some probably too candid information about my experience in the hospital in hopes that it might help other transplant recipients know a little more about what to expect. First though I’d like to acknowledge the kind, professional, and thorough work of all the doctors, nurses, and other hospital staff that did the surgery and made my stay as comfortable as possible.
When I came out of surgery, I was beyond groggy, but was soon semi-coherent again. That’s when the pain registered. Pain killers, ice, and applying pressure to the incision point helped. Coughing, laughing and even crying all cause sharp spikes in pain.
Also, my whole body was swollen due to the massive amount of fluid they were giving me to jump-start the new kidney. The doctors tell me that the swelling will eventually go away, and it has started to reduce a little. The first couple nights I didn’t get much sleep as the nurses were constantly monitoring my vitals and changing IV solutions etc.
Each day, the nurse (nurse in charge of a patient’s care for that shift) would ask me for my goals for the day. I learned quickly to request fewer interruptions at night so that I could sleep. They also encouraged me to move around as much as I could despite the pain.
They have amazing high-tech hospital beds which can move various parts of the body up and down and can even lift you to a sitting position with your feet on the floor to help you stand up. To help keep my lower legs circulating blood properly they put “pressure leggings” on each leg which would alternately apply light pressure off and on while in bed.
They inserted a “Foley” catheter into my bladder because it is so critical to measure urine output to ensure the new kidney is functioning properly. They’re also drawing blood frequently (from a main port in my neck which they inserted during surgery) to monitor the body chemicals controlled by kidneys to check that all the other kidney functions are working as well.
I’m now on many medications, some of which I’ll have to take for life, to ensure that the kidney isn’t rejected by my body. The problem is that they make me effectively have no immune system so that I must be super careful not to be around sick people or do anything that might introduce disease or conditions that my body would otherwise easily fight off. This is especially hard for me because I love being with my grandchildren. Children are constantly getting something as they build their own immune system. But I will have to maintain “social distancing” from them for quite a while even after the Corona virus is overcome.
I was glad to be discharged from the hospital and have the catheter removed! They gave us a lot of written instructions and many visits from specialists (some remotely due to Covid concerns). I was seen and instructed by physical therapy, occupational therapy, social workers, doctors, post-transplant coordinators, case workers, and others. I’m glad most of the instructions were written, otherwise it would be hard to remember so many.
We went to temporary “home” with Mary’s sister since we have some required in-person clinics and frequent blood work for the first month after surgery and we need to stay close to the hospital. Due to virus exposure concerns, they allowed us to have home health nurses take the blood samples which reduces the amount of travel required.
Unfortunately, the same day we were discharged, I experienced extreme pain (far greater than that from the surgery) due to constipation. The hospital said that it is “normal” to not have a bowel movement for up to 5 days after surgery and that a side effect of the narcotic pain killers they were giving me can really slow down the bowel function. In my case, it made the stools so hard and large that they would not come out naturally. The pain also prevented me from passing urine which was probably the largest concern of the transplant team. Off to the emergency room. They examined me for what seemed like forever while I continued to pant with pain. Finally, they initiated several - rather unpleasant - procedures (enemas and digital compaction) which cleared the “blockage.” What a relief! To my consternation they had to insert another catheter to insure urine was not overextending the bladder during these procedures. That catheter finally came out 3 days later at the first post-surgery clinic.
Sorry if some of the a above descriptions are too graphic.
Regardless of the unpleasant aspects of my transplant so far, I’m very glad to have a new kidney and the promise of renewed energy and lifestyle. No more dialysis!
Many prayers and helpful support were offered by so many during dialysis and especially now during and after surgery. I thank you all from my heart.
-Karl Black
April 10, 2020
Quarantine:
We are in quarantine here at my sister’s house. She had been in self-quarantine for over 3 weeks, lives alone, and has an empty basement. Karl passed the stairs test in the hospital, so we feel really blessed to have this place to come to. He stays downstairs, my sister stays up and I go up and down. We will be here for several weeks.
Karl was released from the hospital on Friday, April 3rd. He was doing well, standing, walking, even made it up and down a few steps with the PT. That same night, he started experiencing pain in the abdomen and didn’t sleep at all (second time in a week). We called his coordinator, who said he should go in to the emergency department. He was there for about 8 hours alone. They don’t allow visitors, even in the ER. I was on the outside praying.
But some great miracles and blessings came, despite the concerns. He was released feeling much better. Family rallied to send prayers and other things!
One of his sisters called to see what they could do. I told her that I was so tired, I didn’t really know what we needed other than faith and prayers. I did know one thing: we were staying with my single sister and she had not been doing a lot of cooking or cleaning for herself (she had a cleaning service and mostly food delivery). I was pretty sure she didn’t have enough food or cleaning supplies for 3 people for a month, especially amid the sterility requirements for a new transplant (they suppress the immune system to almost nothing) with COVID-19 concerns added.
Karl’s sister went to work and rallied several family members who lived close. Within about 5 hours, she had collected food, cleaning supplies, masks, even a loaf of fresh homemade bread, driving many miles to collect it all, and then dropped it off at my sister’s house – before we even returned from the ER! What an incredible world we live in! What a blessing to be a part of a family who can get into action with such speed and thoroughness!
Since that day, we have received several deliveries of food and supplies. We even had a new shower wand donated and had a masked man (not Zorro – you could see his eyes and not his nose and mouth, since he was wearing a COVID mask) who came to install the new shower apparatus.
It has been hard. I will admit that. It has felt like a lot of chaos. There have been concerns with how to best keep things clean and how to keep the food nourishing, and how to get enough rest. There has been a lot of sterilizing, cooking, cleaning, laundry and individual caring to do. But we feel the faith and prayers of so many!
Today is Good Friday, the day the Christian world celebrates the offering that Jesus Christ gave to provide Salvation to the world. We are so grateful for Jesus Christ and what he has done for us! Today is also a day that has been declared a worldwide day of fast for relief from COVID-19. We are praying for that relief, too.
Many people are struggling right now. Many people have also seen abundance of miracles and blessings in their lives.
We are some who have deeply felt both tests and miracles in the past few weeks. We are grateful for both: the challenges and the blessings both make us stronger and more appreciative of the good people in this world and the goodness of God.
-Mary Black
April 1, 2020
Wednesday, April 1, 2020
3:24 am
I woke up after sleeping pretty well for a few hours. At least as well as is possible in a hospital room when the nurse comes in every hour and other people at intervals.
Speaking of the nurses...
These nurses and CNAs and all the staff are so impressive! We are so grateful for them! When half the world is freaking out about viruses and earthquakes, these guys are just going forward, taking care of one patient at a time. Quietly doing what they have always done.
Here, the whole transplant unit was just moved to a new location because their former area has been reserved for COVID-19 patients. Everyone is in new territory in so many ways: new location, new - and constantly adjusting - rules and regulations because of the virus. They are doing a phenomenal job!
When we checked in at the hospital (about 3 am on Tuesday), they told us that no one is allowed any visitors in the hospital right now -except for transplant patients. Transplant patients are allowed one visitor. Not one at a time or one a day. One visitor -the same one-for the whole 3-5 day hospital visit. Wow...
The cafeteria is a skeleton of what it used to be, with all the tables put away. Go get your food and go back to your room. Don’t congregate. This cafeteria is designed to feed and seat hundreds of people! The hall where lines usually form has red tape on the floor at 6’ intervals, with the words, “6’ social distancing “ printed on the tape.
When I went to get dinner at 6 pm last night, there was only one serving area open, and 3 people standing apart from each other waiting in line. When I got to the pay station, the clerk asked me “Do you work here?” “No. My husband just had emergency transplant surgery.” I don’t think he sees many like me right now.
When we arrived they wrote down my name and number so that they could put it in the database or whatever they are using. They said if anyone questioned me, I could tell them I’m on the list of approved visitors.
Even with that, it still feels hopeful and happy here. Everyone has been kind and helpful. When I got lost trying to find the surgical waiting room, a kind soul in scrubs, mask, and gloves showed me the way. She said she didn’t know if there would be volunteers there to help me. There were none. Only one hospital staff woman, who said she finished her whole day’s work already. No visitors; not much to do.
When Karl’s surgeon came to talk to me after the surgery, we were the only ones in the waiting room. He couldn’t shake my hand. He said things are adjusting every day. He suggested that I go back to the room to wait for Karl to get out of recovery. No congregating.
The surgery went really well. The deceased donor kidney is healthy and seems to be working for Karl very well. The doctor said it woke up and started working and had already produced a lot of urine since he put it in.
I am so grateful for that donor and his/her family who were willing to give Karl that kidney! It’s a chance for a new life. I’m so grateful to God for creating our bodies to heal themselves and that those tissues that make up a kidney know how to act, even when they were shut down for awhile. When they were given a chance to start doing what they were created to do again, they accepted the opportunity and now continue to fill the purpose of their creation. That may sound funny, but that’s how I see it right now. What a miracle! We are praying that this kidney continues to function for a long time more.
It makes me think about people in general. We are all designed to do something unique and special. Something that no one else can do quite like we can. Something that our Creator gives us to do to bring joy to our own lives and to lift and bless those around us. He will show us what those unique gifts are and will help us use them for good - if we will let Him.
If this is a bit disjointed, it’s because my typing and editing skills on my phone are slow at best, and there are often interruptions.
We, Karl and I and our family, are so grateful for the faith and prayers of so many people! I know a lot of people are praying for a lot of things right now, not just for us. We are, too. Our hearts go out to all those who are losing jobs, losing loved ones, losing faith. And especially to those who are keeping the faith despite so many challenges.
We say, Keep the faith! Faith in God. Faith in people! There is so much good in the world! So much to look forward to.
Thank you to all who are praying for Karl. We can feel your faith.
March 31, 2020
Monday (3/30) afternoon it was confirmed that the living donor transplants, scheduled for April 7th was cancelled due to COVID19 and would be postponed indefinitely.
However, the very same day my Dad was put on alert again for a deceased donor transplant. He was not very high on the list so out expectations that it would go through were very low.
Around 10:30PM last night, my Dad received another call and was told that the kidney was his if he wanted it. Despite some of the concerns that have arisen because of the corona virus, he said they would accept it and was then told to “come right now”. Rushing to get things prepared, my parents left around 11:30pm for the hospital last night and arrived at the Medical Center around 2:45am.
They proceeded with all the pre-surgery tests and went into surgery around 8:00 this morning. Then about 11:00am my Mom was told that the surgery was completed and the doctor would come talk to her. When the doctor came, he told her that the surgery well really well, the kidney was very healthy and as soon as they put it in it started right up. It is doing exactly what kidneys need to do in the body.
We are so grateful that things turned out so well. Thank you so much for your prayers. We are also very grateful for the deceased person and their family that gave my Dad a kidney. Please pray for that family as well!
At this point, all we know is that he will be in the hospital for 3-5 days and then have to stay close to the hospital for a month while they continue to monitor the new kidney and make sure it is functioning properly.
March 20, 2020
Good news! After 2 1/2 months of testing, Karl's brother was approved to donate a kidney to him! It is scheduled for April 7th!
The challenge is that with the COVID-19 concerns, the hospital has cancelled/postponed all "non-essential" appointments through the end of March. And that may continue through April. They will let us know.
Thank you for your thoughts and prayers! We are so very grateful for so many kind, concerned friends!
February 25, 2020
Valentine’s Day, 2020
I have been thinking a lot about the things that people put on social media a couple of weeks ago about how they celebrated Valentine’s Day. Pretty creative and fun! I loved it!
Karl and I had a unique day. We spent the day with him in dialysis (he has been on hemodialysis since April 2016 and I got trained as his “certified dialysis technician” in July of that year), then him sleeping, then going together to take his car in to be fixed (both front tires were flat and it wouldn’t start), then we went out to eat.
The thing that made it special to me was that even though he was very tired (always is after the treatment), he wanted to do something nice for me for Valentine’s Day. He let me choose a restaurant and kept himself going long enough to sit upright during the meal and open the door for me when we left.
It may not seem like much to others, but it meant the world to me.
I saw his love for me and his kind nature that prevailed even when he wasn’t feeling well. He wanted me to feel loved and special even though he had no energy. He took time to do something for me, even though he would rather have been in bed.
Thank you, Karl, for being such a wonderful, loving husband who has always taken such good care of me and our family. Even though you can’t do what you used to do, even amid vertigo and physical weakness and foggy brain, you still think of others. Thank you for taking the time to listen and ask inspiring questions. Thank you for caring and never giving up. Thank you Karl, for being you!
~Mary Black, Karl's wife of (almost) 38 years!
