Pop's kidney transplant went well! He's been in recovery since. The medicine they give you in the beginning knocks down your immune system for roughly six months! We won't get to visit them for Christmas. The earliest chance I think we'll get to see them again is Spring Break! Nana and Pop are dealing with a ton of life changes post-transplant, so you'll probably see another update eventually!
Wednesday, Nov 9th
Well, my kidney numbers are better again today. Egfr is 47 vs 23 yesterday and 6 the day before. I think it will improve even more as it gets to a steady state. My best number ever was about 70 at age 21. Egfr range is like 120 to 0. I will escape here either tonight or tomorrow morning. I am transplant #21 and they are saying I have the best kidney response and healing time so far. There are plenty of new food and social distancing rules for the next 6 months. I will type. something up when I get home. Love you guys. Thanks for your prayers and thoughts. I am feeling great and have a new 6" scar. Ha. Tim
Friday, Nov 11th
I had my first post hospital checkup and labs this morning. Everything is going great. My current kidney egfr is about 72% (up from 6% on Sunday). I don't think I have ever been that high. It is probably near the end of it's climb though. Anything greater than 59% gets counted as normal. It really is pretty unbelievable. I have some pain in my gut from the sutures and from the strain of retraction while they are doing the surgery but it isn't too bad (2 or 3 level of pain on a scale of 10). It definitely slows me down. Getting up or down into a chair or the toilet, coughing, sneezing, laughing are all something to do carefully. My bowels are messed up a bit also. They seem to think I should poop between midnight and 4 am. I have a lot of gas but I call it fortified gas. You better get up quick and head to the toilet when your body tells you to or bad things happen. Ha. Lots of new meds and it will just take awhile for all of that to line out. I have limited potassium in my diet for a long time and they now say don't worry about it. I need to limit salt to 2300 gms a day so I will start watching that now. It won't be a problem though since they say no eating out anywhere for 6 months (don't eat at the restaurant and don't buy it and bring it home). Fast food was one of our staples and it is loaded with salt so if we aren't buying fast food, I think I can do the salt limit no problem. They worry that not every teenage boy working in the kitchen of these places is sanitary. Imagine that! All it takes is one incident and I would have a big problem.
They have given me a drug (thiamoglobulin or something like that), that wipes out my white blood cells. For the next 6 months I am much more at risk to catch anything while they work to prevent my body from rejecting the new kidney. They said don't go anywhere or do anything or let anyone in, always wear a mask when out and keep 6 feet away from people. So I won't be grocery shopping or anything like that for months - Debbie will have to do all of that kind of stuff. I can only lift 10#s max for 6 weeks. They said we can go to church in a few weeks but go to the early service (less people - we already do that), wear a mask, don't hug anyone, stay 6 feet away, etc. Stay away from anyone coughing, sneezing, runny nose, fever, etc........ Lots of new rules. They don't want you to use a wooden cutting board - only plastic. Quit using hand towels and switch all to paper towels (kitchen and bathrooms). And on and on. It all makes sense but it is a lot of new information.
Lots of new things to figure out. Meds and meds schedule, diet, taking blood pressures, temperatures, etc.... But we are chipping our way through it. Thanks for all your best wishes and prayers. Please remember to pray for the donor's family too - someone died to give me a kidney. What an amazing gift that is. And keep praying for me to get through these next 6-12 months healthy. If I make it that far, then I am probably totally out of the woods from the kidney perspective. In a week or two, I will send another email with some details on the timeline that I think are amazing. This has definitely been a God thing for Debbie and I. Love you all. Tim
Wednesday, Nov 16th
We had another 8 am office visit today. I have lost about 8-9 lbs of water weight so far. It seems to have leveled off. My first thing in the morning weight is about 161. I was around 155 in college. My wedding ring finally fits again. My blood pressure cuff slides on my arm easily. I can see that I have melted weight off everywhere. My creatine was 1.12 on the 11th and 1.03 today. My best ever creatine before these two was 1.2 on February 9, 1979. I have creatine lab results back to early 1978 when my first kidney biopsy was done. My blood pressure has dropped a bit and is more regular. Getting a new kidney may or may not impact your blood pressure. It could lower it and we will just have to wait and see over time. I go back again on 11/23 and there is a chance they will take my staples out then. I will get a stent removed on December 7th. My pain level dropped a step this Monday, my pooper is working, and I am eating salt below the 2300 mg daily limit right now with no problem. There are all kinds of tests not right in my blood work but it is just part of changing my meds and my body trying to figure out what is going on. Every trip into the office we get labs and the labs lead to drug changes. But nothing is worrying the doctor right now.
This whole transplant thing feels like a miracle to Debbie and I. My prayers were to get a good kidney that would maybe allow me to get one transplant in my life and then be done (one and done) and to get it before dialysis was needed. The hope was the kidney could last long enough till I died from something else. I asked God what to do, what offers to accept or not. I turned down 3 kidneys and accepted 4 kidneys. On the ones I accepted, I asked God to guide the decision makers and redirect the kidney if it wasn't the right one for me. Two of these accepted kidneys were judged not good enough for transplant and one went to a heart and kidney double transplant. The one that worked came from an 18 year old young man. I asked God to help me get a kidney before I needed dialysis. Little did I know it, when I said yes to the kidney and went into the hospital, my kidney performance was crashing. I hadn't felt it yet but the labs sure said it was true. I would have been on dialysis within a day or two if I hadn't got a transplant. I was in church when I got the call. While the pastor was holding up the bread and wine to present it for communion, my phone rang. The ringer was turned off but it rang anyway. I smothered it and didn't recognize the phone number. I called back after church 10 minutes later and the process was kicked off. The kidney started up instantly on transplant. The doctors said it acted like a living donor transplant and not a deceased donor transplant. When a kidney has been held on ice 12+ hours and then warmed up to transplant, it usually takes some hours or even days to get it jump started. My creatine was already dropping before I left the operating room because my kidney started up so fast. Often the transplant patient has to do dialysis until the new kidney kicks into gear. None of this happened to me. I left the hospital in 2.5 days post transplant. The protocol is 4-5 days but my healing was and is proceeding at a fast rate. Debbie and I are strong believers in the power of prayer. I wouldn't be surprised if, based on all the different prayer chains we are on, that a 1000 people were praying for all of this. Throughout the process, Debbie and I have been very calm. We just had a lot of confidence that God would take care of us and He did. My prayer now is that Debbie and I can have many more healthy years together and that I can outlast her. I believe I can handle life better without Debbie than she could without me. Kind of a weird prayer but that is how we look at it. We are very grateful for God's provisions for us.
Please also say a prayer for our donor and his family. We know only a few details but will likely come to know more eventually. We will send a note to the national kidney transplant people that will get forwarded to the family. They may or may not choose to write us a note back. It is an amazing gift to receive a transplant. The donor family will be filled with grief from their loss but we hope lots of people got gifts from this one donor and somehow that helps the family see flowers blooming from ashes. We pray for the family's peace and comfort and that they and our donor know Jesus as their Savior and we will at least get to meet them in Heaven someday.
One last thing to tell you about. Debbie and I pray almost every night for all of our family and extended family to develop a relationship with Jesus and be saved. We selfishly want to have all of you in Heaven with us someday. We want you to be able to see the relationship we have with Jesus and recognize the peace that it brings. Some of you already have that relationship. Some of you know who Jesus is, but you haven't placed Him at the top of your priority list - He is just someone to pay attention to when it is convenient or socially required. Some of you don't want to know Jesus - you are mad at Him or think you know better than Him. Some of you don't really know Him at all - you were never brought up to know who He is. A common thing is to blame Jesus or God for all that's wrong in the world and question why doesn't God do something about it? But the world belongs to Satan. And people too often blame God for the things Satan does. God wants Heaven to be full of people who picked Him. It's our choice to pick Him or not pick Him. God has a plan and He loves you. The chapter in the Bible called Revelation tells you how it is going to end. God will wipe out Satan and all sin and all those who accept Jesus as their Savior will end up in Heaven and everyone else in Hell. This is a hard thing to read when you know some of the people you love are headed to Hell. We are all sinners and the only way to Heaven is through accepting Jesus into your heart. You can't be a good enough person to do it yourself. The Bible is the work plan on how to understand who God and Jesus are. Start with a teaching Bible and read the New Testament (NIV or New King James). Read the chapters of the Bible while listening to Gary Hamrick sermons from the Cornerstone Teaching Library in Leesburg, VA. (https://cornerstonechapel.
Thursday, Nov 17th
Alie Ward is a podcaster who does reports on ologies. Patrick sent me the one on kidneys (nephrology) quite a while ago. It is a fascinating listen if you want to know a lot more trivia on kidneys (I figure I am a bit more interested in that than any of you - Ha). Here is the link - https://www.alieward.com/
Wednesday, Nov 23rd
Hey there. My suture area started seeping more liquid on Friday night. It went from a little bit to a lot (20x more at least). I called the surgeon Saturday morning and he said if I thought it was infected I should come to the ER. If it wasn't infected I could wait till Monday and come into the office and he would take care of it. It wasn't infected so I waited till Monday. I didn't want to spend 4 hours in some germ filled ER. I basically have something they call a seroma - common in 5-10% of cases. They needed to drain it. He proceeded to take all the staples out of the wound. Then he grabbed a cotton swab on the end of a long wooden stick and proceeded to open the wound all the way up. He then fished out any liquid in there with cotton swabs, packed gauze back in it and covered it up. He asked Debbie if she could do that two times a day and then we were done. Debbie was very startled also. It is a good thing that neither of us is squeamish. It didn't really hurt but it was surprising to see. He didn't tell me what he was going to do, he just jumped in and did it. So I now have a slash mark about 6" long and it is maybe 1" across at its widest point and 1" deep at its deepest point. It doesn't really bleed and it looks a lot like raw hamburger on the sides of the slash. It definitely feels better to have the staples out. I bet it will take a month or better for the gash to get closed off.
Everything else is going great. Every time we do labs, there are new and different things out of whack. But overall, my blood and urine tests continue to get better with fewer issues out of bounds. I just need to keep the incision infection free and stay isolated. I haven't had very many side effects from all the new meds. The prednisone gives me a lot of burping. But they give me pepcid to help settle that. They stopped the omeprazole I was taking because it has a little interference with one of the rejection drugs. The omeprazole worked really well for me so I hope I can get back to it someday. The kidney continues to work great.
I go back again on 11-28, next Monday. Patrick told us he was almost approved to be my donor when I got the transplant. He was apparently a good match and was near the end of the testing. Other kids had also offered but I was always a little worried that since IGA nephritis in my immune system attacking my own kidney, I worried there could be a genetic effect in there. But I don't think there is any way to know. The good news is that none of the kids have shown any signs of kidney disease. Ok. That's it for now. Love Tim
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