T minus 20
The countdown is on and we are 20 days away from THE TRANSPLANT. Yippee! Even though Joe goes to dialysis 3 times per week, his body is still filling with toxins. His kidneys only function at 11% y'all. I can't even imagine getting out of bed at 11%. But, he's a trooper. He still plays with the boys. He cooks dinner. He straightens the living room (which is in an ever-messy state with the boys). Yet, I know he's not doing well. I can take one look at his face and know he's not feeling well. He's trying to hide it, but after 12 years together, you notice these things.
At T-20 (twenty days until transplant), you would think that we are uber excited with anticipation. However, Joe has a bad kidney infection. He has had it for over a month. He has had an antibiotic shot and a full round of antibiotics. The doctor called and said they found 3 forms of bacteria in his urine and he is still having the same problems even after the antibiotics. He goes in for final testing on T-14 (in 6 days). They won't do the transplant if he even has so much as a common cold, let alone a kidney infection with 3 forms of bacteria.
But....
At T-20 (twenty days until transplant), you would think that we are uber excited with anticipation. However, Joe has a bad kidney infection. He has had it for over a month. He has had an antibiotic shot and a full round of antibiotics. The doctor called and said they found 3 forms of bacteria in his urine and he is still having the same problems even after the antibiotics. He goes in for final testing on T-14 (in 6 days). They won't do the transplant if he even has so much as a common cold, let alone a kidney infection with 3 forms of bacteria.
But....
The Hike
A hiker and her best friend were on a hike. They were having a good time.
Partway into the hike, the best friend started to get weak. The hiker took his backpack, so he could use his strength to just carry on. She had to take a few things out of her own pack to lighten the load. Things that she had thought were important at the onset of their hike. Things that were not as important that she knew she could put down for awhile and come back to later.
The Decision
Joe's donor, Kris, spent last week at the Mayo Clinic in Phoenix. Her week was full of testing: MRI, ultrasound, blood tests, psychological testing, etc. The donor team then looked at all the results and had a meeting today to make the decision. The decision if she is healthy enough to still have a good quality of life with only one kidney. We all waited to hear their decision, knowing that they are the ones with the years of medical training and experience. Knowing that they are the ones who know intimately how expensive and risky a transplant can be. We put our peace and trust in their decision.
They met today. And shared test results. And then called Kris.
They met today. And shared test results. And then called Kris.
And the winners are...............
Last night, we had our Kidney Benefit Dinner. It was amazing. And to think, that it all started from a little conversation a week ago. We knew that we wanted to raise money to help our donor with transportation costs. We had a yard sale two weeks ago and we met our goal of $500. That money was to help her with costs form the one week of health screening. But, we knew that we wanted to help raise $1500 more for the 2 weeks after the transplant. A friend of mine, Amy Brown, owns Pizzeria Venti in Lakeside. She offered her restaurant as a fundraiser. She said that typically people make $200-$300. Ok. Well, that would be a start.
Another friend, Amanda Luptak, asked if we wanted to do a raffle with a gift card from WalMart. I said no, because we would only have 6 days to put this together and in those 6 days, we both had horrendous work schedules (end-of-the-year teacher stuff). Well, her mom-in-law took her out to eat on Monday. While there, Amanda casually asked if the restaurant would donate a gift certificate. They immediately said YES! Since the first was so easy, she tried a few more businesses. They were practically throwing gifts at her! By the time the raffle started, we had 34 items! Nice items. Here is the list of the items and the winners:
Kidney Benefit Dinner
The Great Clean-Out!
Every day, a person's kidneys process about 200 quarts of blood to sift out about 2 quarts of waste products and extra water. They do all this without so much as a thought from us. Well, only if your kidneys function normally. If not, that 2 quarts (1/2 gallon) stays inside your body. With 1/2 gallon of waste and toxins in your body EVERY DAY, you begin to think about it. You begin to swell. The only way to get the excess fluid out of your body is to endure dialysis.
Joe has been on dialysis for 4 1/2 months now. He hates it. He hates the way it makes him feel. I hate the way it makes him feel. Yet, we both know that we don't have many options right now. Except............
Joe has been on dialysis for 4 1/2 months now. He hates it. He hates the way it makes him feel. I hate the way it makes him feel. Yet, we both know that we don't have many options right now. Except............
My Testimony
Our church, Grace Church, is asking members to share their testimony. The thought is that if we practice sharing our testimony in front of friends, it will be easier for us when we share it in front of strangers. I was asked to share my testimony last Sunday. Since the testimony part of the service is not taped, I will share it here:
It's Time
Our lives are like a hike up a mountain. Most of us have a plan and a path in mind when we start out. Yet, we soon realize that the trek is full of divergent paths and unforeseen obstacles. It's our attitude that makes all the difference.
See, I'm the type of person who likes to go from point A to point B. Straight away. When we take hikes and there is no trail, I seriously blaze a trail straight up the mountain. However, God has so much more in store for me. He puts the twists and turns in my path. Years ago, I used to get upset with the twists. But, I have learned that the twists bring me to another side of the mountain that I would have never seen had I not taken that unfamiliar path. The path brings me around the mountain and provides great vistas. I have learned to accept and appreciate God's twists.
Recently, God called Joe and I to wait. We were beside a cool stream, resting in the shade. We were called to:
Be still and know that He is God.
Be still and know.
Be still.
Be.
Family Bike Ride
Our church is right across the street from Show Low City Park. We decided to go for a ride right after church today. It was a typical, beautiful White Mountain day. **Disclaimer: don't call CPS. The boys DO have bike helmets, but we forgot to pack them in our rush to get to church**
Shoes From Heaven
Have you ever heard the phrase "coming apart at the seams"? Yep, I have now witnessed that.
Notice that you can actually see INSIDE the shoe! And the other shoe is being held together by a RUBBER BAND! Now, before you call CPS on me and declare me a horrible mother, I bought those shoes 5 weeks ago. Five weeks, people. Usually, his shoes last 2 months. Even then, two months?! I knew kids were expensive, but come on!
Go DBacks!
I love baseball. There's just something about the smells. Fresh-cut grass. An old mitt. Hot dogs. And the sounds. The crack of the bat. The roar of the crowd. Ahhhhhhhhhhhh.
But, since we've had the boys, it's been hard to get to a game or to even follow the team on TV. Now, we have an added incentive to keep up with Arizona Diamondbacks: FREE DINNER! Yes, you read that right. FREE. As in I-don't-have-to-cook-or-do-dishes FREE dinner. Awesome possum!
Good Gifts
Have you ever wanted to give your child a gift, but were waiting for them to ask for it first? I remember once, I wanted to treat the boys to lunch. I asked them what they wanted, hoping they would say that they wanted to go out. Jack humbly said, "a sandwich". When I questioned him further, he changed it to "soup". I guided and prompted some more, wanting him to ask to eat out, so I could bless him. When he finally felt safe enough, he asked for McDonald's. And I was so happy to give it to him.
But it made me think: "If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask Him!" Matthew 7:11. My heavenly Father is ultimately better than I am. His gifts are ultimately better than my gifts to my children. But the key (I think) to that verse is "to those who ask Him". I was waiting for Jack to ask. God is waiting for us to ask.
Read More....
But it made me think: "If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask Him!" Matthew 7:11. My heavenly Father is ultimately better than I am. His gifts are ultimately better than my gifts to my children. But the key (I think) to that verse is "to those who ask Him". I was waiting for Jack to ask. God is waiting for us to ask.
Read More....There is Healing in the Waiting
Experts say that children grow while they sleep. Exercise enthusiasts claim their muscles heal on the off-days. There is growth in the waiting. There is healing in the waiting.
We are waiting.
Waiting for a kidney.
Waiting for a new chance.
Waiting to come alive!
While we are waiting, we are growing. Growing closer together. Growing closer to God. Who could ask to be spared from that?
Paul wrote in his second letter to the church in Corinth, " 8we are afflicted in every way, but not crushed; perplexed, but not despairing; 9persecuted, but not forsaken; struck down, but not destroyed; 10always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. 11For we who live are constantly being delivered over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh."
Joe's body is dying. In fact, if it weren't for modern medicine (dialysis), he would have died in early January. Yet, the life of Jesus is more alive in him now than ever before. He wants to go into the dialysis unit and be "the light of Jesus" to the other patients. May God be glorified in our waiting.
There is growth in the waiting. There is healing in the waiting.
A New Chance
"They grow up so fast." "Before you know it, they will be in school." "Enjoy every minute." At some point, we have all heard or said these words when referring to little ones. It is true; they do grow up fast. Now imagine missing out on half of that short time.
That's what life on dialysis is like. Half of your days are spent in the dialysis unit. Your dialysis day begins at 4:30 a.m. You need to eat a full meal before you leave the house, even if you are not hungry. When you get to your dialysis unit, you will be weighed, then hooked up to a machine. They have two choices on how to hook you up. It can be painless, through a catheter into your heart. Yet, this is dangerous, as it has a higher chance of infection. Oh, and if you have the catheter, you cannot take a shower. Ever. Don't even think of swimming in a pool with your little ones. AND, you have to be careful when you play with them to make sure they don't bump it or pull it out. Your other choice of being hooked up is by a needle. I'm not talking your everyday, little, wimpy needle. I'm talking about a needle so big that you can see inside the shaft! Two needles to be exact! One to draw the blood out and one to put it back in. Painful doesn't even begin to describe this method. Don't forget the scars. As your body begins to develop scabs and scars, they will work their way up your arm. The artificially created super vein in your arm is pretty big also, so you will probably wear long sleeves to hide all this; even in summer. Dr. Kamash said it best when he told us, "dialysis keeps you alive; not normal."
When you are done with four hours oftorture dialysis, you are weighed again. You now weigh 2 pounds less than when you came in. Where did it all go? They sucked it out of you. Literally. You feel drained, have a splitting headache, and cramp up. All you really want to do is die. But then your little ones come home and you know you must fight on for them.
Yet, it doesn't have to be like this. There is an alternative. Kidney Transplant.
We are born with two kidneys, yet we only need one to live. How amazing that God gave each of us an extra kidney. In a kidney transplant, they take one kidney from a healthy donor and put it in the recipient. The donor needs to hang around the hospital for about 2 weeks for follow-up appointments, to make sure everything is going well. After that, it's pretty much life as normal for the donor. For the recipient, it's a whole new chance to live. A new chance to be there for their little ones. A new chance to see them grow up. A new chance to be "daddy".
The average age of a dialysis patient is 60 years old. At 60, you have worked, are nearing retirement and social security, have raised your children. At 44, you still WANT to work, are nowhere near a retirement paycheck, and have little ones at home. Joe is 44. He desperately wants to work. Yet, with 3 days per week on dialysis, cannot work. If he can't work, he can't bring home a paycheck. If you didn't know already, teachers don't get paid much, but at least we can make our rent payment. We rely on friends and family for our groceries. But more than any of that, at 44, we still have little ones at home. Little ones who love their daddy. Little ones who love to be thrown into the air. To wrestle. To hear bedtime stories. To snuggle into daddy's chest when they are scared. On dialysis days, we don't have "daddy".
We have already come so far. We almost lost him in December. Dialysis is keeping him alive. Our insurance is paying for everything. Praise the Lord! We were referred to the best, THE BEST, number one ranked transplant hospital in the country. They tested him extensively and deemed him a "kidney transplant candidate". Now, we need a healthy donor. For a list of the requirements to be a donor, click here. If you do not meet the requirements or if you don't feel this is right for you, please pass this along to others. More than that, please pray for a donor to be matched with Joe. Pray for a New Chance.
**************ADDITIONAL INFORMATION****
Some people have been asking about Joe's condition. It is called Membranous nephropathy. It is genetic. We never knew he had it until three years ago. It is a rare form of kidney disease, affecting only 2 in 10,000. What is more rare is that only 20% of patients with MN progress to end-stage kidney failure. Joe should get a medal for making it there in record time. We feel blessed in the midst of all the uncertainty. Yet, dialysis is not agreeing with Joe. His catheter in his heart is starting to get clogged up. His super vein doesn't run quite right. His arm swells up to three times it's natural size and then turns black and blue. Please pray for a transplant soon.
That's what life on dialysis is like. Half of your days are spent in the dialysis unit. Your dialysis day begins at 4:30 a.m. You need to eat a full meal before you leave the house, even if you are not hungry. When you get to your dialysis unit, you will be weighed, then hooked up to a machine. They have two choices on how to hook you up. It can be painless, through a catheter into your heart. Yet, this is dangerous, as it has a higher chance of infection. Oh, and if you have the catheter, you cannot take a shower. Ever. Don't even think of swimming in a pool with your little ones. AND, you have to be careful when you play with them to make sure they don't bump it or pull it out. Your other choice of being hooked up is by a needle. I'm not talking your everyday, little, wimpy needle. I'm talking about a needle so big that you can see inside the shaft! Two needles to be exact! One to draw the blood out and one to put it back in. Painful doesn't even begin to describe this method. Don't forget the scars. As your body begins to develop scabs and scars, they will work their way up your arm. The artificially created super vein in your arm is pretty big also, so you will probably wear long sleeves to hide all this; even in summer. Dr. Kamash said it best when he told us, "dialysis keeps you alive; not normal."
When you are done with four hours of
Yet, it doesn't have to be like this. There is an alternative. Kidney Transplant.
The average age of a dialysis patient is 60 years old. At 60, you have worked, are nearing retirement and social security, have raised your children. At 44, you still WANT to work, are nowhere near a retirement paycheck, and have little ones at home. Joe is 44. He desperately wants to work. Yet, with 3 days per week on dialysis, cannot work. If he can't work, he can't bring home a paycheck. If you didn't know already, teachers don't get paid much, but at least we can make our rent payment. We rely on friends and family for our groceries. But more than any of that, at 44, we still have little ones at home. Little ones who love their daddy. Little ones who love to be thrown into the air. To wrestle. To hear bedtime stories. To snuggle into daddy's chest when they are scared. On dialysis days, we don't have "daddy".
We have already come so far. We almost lost him in December. Dialysis is keeping him alive. Our insurance is paying for everything. Praise the Lord! We were referred to the best, THE BEST, number one ranked transplant hospital in the country. They tested him extensively and deemed him a "kidney transplant candidate". Now, we need a healthy donor. For a list of the requirements to be a donor, click here. If you do not meet the requirements or if you don't feel this is right for you, please pass this along to others. More than that, please pray for a donor to be matched with Joe. Pray for a New Chance.
**************ADDITIONAL INFORMATION****
Some people have been asking about Joe's condition. It is called Membranous nephropathy. It is genetic. We never knew he had it until three years ago. It is a rare form of kidney disease, affecting only 2 in 10,000. What is more rare is that only 20% of patients with MN progress to end-stage kidney failure. Joe should get a medal for making it there in record time. We feel blessed in the midst of all the uncertainty. Yet, dialysis is not agreeing with Joe. His catheter in his heart is starting to get clogged up. His super vein doesn't run quite right. His arm swells up to three times it's natural size and then turns black and blue. Please pray for a transplant soon.
Transplant House
They told us that when Joe gets his transplant he will need to be here for a month. A month! At $100/night for a hotel plus eating out, there is NO way we could afford that! No way. Well, they know that and have a plan for us.
About ten years ago, a family donated land adjacent to the Mayo Clinic campus. The clinic then built casitas and named them The Transplant House. They are available for transplant patients and their caregivers for a small donation. They come with a full kitchen and laundry facilities. They have large communal areas, so you can fellowship with others who are going through the same thing. The only bummer is that the boys will not be allowed, as everyone there has lowered immune systems. Joe probably won't even be able to see them for a month. That will probably be the hardest thing for him.
Click here to see the website.
Requirements of a Kidney Donor
Quite a few of you have expressed an interest in donating. Here is what is required:- You must be blood type O as Joe is type O. Positive or negative don't matter.
- Our insurance will cover all the medical costs. There might be other costs, transportation, lodging, and meals, and we will try to help you with that, but money is VERY tight right now. I can't promise that we could cover all those costs.
- You cannot have diabetes.
- You can't have a history of kidney stones.
- If you just had a baby, you must wait six months after delivery.
- You can't have high blood pressure.
- Ages: no one past 60 years old. Anyone in the 50's would have to be a really good match. Anything less than 50 is ok.
I recently read an article about the health affects to the living donor. You can link here to read the whole article. Basically, it says that donors have the same life expectancy as non-donors. After the kidney is removed, the remaining kidney compensates and will be working at 85% within 2 weeks. The rate of donors who themselves end up with End Stage Renal Failure is much lower than the general population. If it does occur (usually for family genetic reasons), those patients are moved to the top of the wait list for a kidney.
If you do meet the above criteria, you can call the donor line. The number is 480-342-1010. Ask to be transferred to Mindy's backline. She is helping us find a match for Joe. If she is unavailable, you can say that you are a potential kidney donor. There is a phone interview that takes about 10 minutes. It's basic medical history stuff; pretty much the things I mentioned above. They will need your name, social, and date of birth. Organ donation is highly regulated by the government. They want to make sure that people are not paying donors for their organs. Or that donors are being threatened into donating. They will then review your numbers. A nurse will call you back. When she calls you back, she will have you take a blood test. This can be done long distance. The test will even determine your blood type. So, if you don't know it now, you can still do these steps and they will tell you your blood type. After you have passed the 10 minute health history part, the blood test part, then Mayo will need you for 3-5 days of testing in Scottsdale. The tests are similar to what Joe did. Blood work, urine, EKG, ultrasound, stress test, etc.
If you do meet the above criteria, you can call the donor line. The number is 480-342-1010. Ask to be transferred to Mindy's backline. She is helping us find a match for Joe. If she is unavailable, you can say that you are a potential kidney donor. There is a phone interview that takes about 10 minutes. It's basic medical history stuff; pretty much the things I mentioned above. They will need your name, social, and date of birth. Organ donation is highly regulated by the government. They want to make sure that people are not paying donors for their organs. Or that donors are being threatened into donating. They will then review your numbers. A nurse will call you back. When she calls you back, she will have you take a blood test. This can be done long distance. The test will even determine your blood type. So, if you don't know it now, you can still do these steps and they will tell you your blood type. After you have passed the 10 minute health history part, the blood test part, then Mayo will need you for 3-5 days of testing in Scottsdale. The tests are similar to what Joe did. Blood work, urine, EKG, ultrasound, stress test, etc.
The timeline goes like this:
- Joe goes through all the testing to determine his health.
- Next Tuesday, a committee will go over his results and vote on if he would be a good candidate for a kidney transplant. They will call us immediately to let us know. If not, he would have to continue life on dialysis. This is VERY hard on him. Please pray that he would be a candidate for transplant.
- Our insurance will need to clear everything.
- Joe will go on the wait list for a cadaver kidney.
- We begin the search for a live donor.
*****UPDATE****We have cleared steps 1, 2, 3, and 4.
That's where you come in. Maybe. We realize how enormous this decision is. HUGE. Let's face it; it's an organ. If you have thought about it and have decided to not go ahead, we understand. If you do still want to proceed, you would need to call the Mayo Clinic. We are not allowed to call for you and they are not allowed to call you directly.
That's where you come in. Maybe. We realize how enormous this decision is. HUGE. Let's face it; it's an organ. If you have thought about it and have decided to not go ahead, we understand. If you do still want to proceed, you would need to call the Mayo Clinic. We are not allowed to call for you and they are not allowed to call you directly.
Thank you for your time. Thank you for your prayers. This is an amazing journey we are on. It has made us realize the fragility of life. Every day truly is a gift.
God's Gym
My thoughts or my feet?
Am I running from?
Or to?
Breathe in.
Breathe out.
Breathe in.
Breathe out.
Breathe Him in.
Breathe me out.
Breathe Him in.
Breathe me out.
Did I work out?
Or did He work out....
my problems?
Great blogspot.
ReplyDeleteVery informative.
Very inspiring.
We pray for your family.
J&M