My husband is skeptical of this surgery, but he is supportive. He is worried about how it will affect us. To him, there is always a catch, and no one ever tells you the complete truth, so he is suspicious. However, he is supportive of my electing this surgery, but with his eyes wide open.
I knew I would need help for the first two weeks of recovery. I called my mom and dad, who live in another state, and told them I was calling to see if they would be able to help me, as I am choosing to have surgery to donate a kidney to my friend and need someone to take care of me from the time I am released from the hospital until my 2 week post-op appointment. Apparently, that news creates shock, but once they had some time to process what I had just said, they communicated their support. They probably would rather I not do something as drastic as elective surgery to remove a body part, but they support my decision for this worthy cause, and they will be here when I go into surgery and take care of me for the next couple of weeks.
I found out through a short grapevine that my 7 year old just matter-of-factly told a friend that his mom was going to die. I told him that God told me to do this, and I don't believe He would be asking for that kind of sacrifice. The statistics are one donor death in 30,000 transplants; however, it is always a possibility, and if for some reason I do die, I truly believe it was part of God's plan for me to die at that very time. Don't worry, I won't die, but if I do, know that it was my time, and you will be okay, and I will be with you.
I have let people know about this surgery only on an as needed basis. At first I wanted it to be a secret. I had hoped to get away with this surgery without anyone knowing. Then I realized that is not fair to my tiny friend (and hopeful recipient), and it was equally not fair to my parents. So, no more is it a secret, nor have I posted it on Facebook. I am surprisingly private. I have no problem telling anybody anything if they ask or I feel there is a need, but other than that I just see no reason to tell people. I am not doing this for an excuse to be taken care of or so that people like me more or anything like that, so why cause stress in anyone's life?
The day I mailed in my application, the rest of the day I felt heroic. I knew it would pass, and it did, but I allowed myself that moment. It wasn't my reason for donating, and it came as a surprise, but I figured it is one of the myriad of changing emotions I would experience, so I just let it happen without judgement on it. The next morning it was gone, but my feeling about my reason for surgery had altered. Now I was excited for my tiny friend, and I felt honored to be allowed to serve her in this way.
I had decided that if I was not a match for her, I would donate in behalf of her in a donor match, also known as a chain. If I was rejected for her because the panel didn't believe my motives were pure (or if they thought she was coercing me, which she wasn't) I knew God knows all and had a purpose for my doing this, so I would either wait and offer my kidney to her next summer after I hadn't worked with her for 6-8 months, and if that didn't work out I would offer live donation for the next person on the waiting list. I am committed to this!
After experiencing the panel's concerns for my health first, I have changed my drivers license status as organ donor at death.
The hardest thing for me to face was the Advance Directive, papers I need to fill out about who will be my voice and what my wishes are, should I become permanently damaged and kept alive by machines, unable to communicate and even unable to recognize my loved ones. I don't really want to look at the possibility in the face. If death occurred or a situation like this, that could possibly turn my family, possibly others, and maybe several generations against organ donation or worse, against God. Also, you can't predict all the possibilities of what could go wrong. Who could I trust to understand me enough to make the decision I would make? You would think my husband is first choice, then my mom is second. However, there are things I will not mention in this blog for my choice to choose someone who would lose less than a wife or daughter. I chose someone else, with both of their support in this decision. Someone who loves me to pieces, understands me probably better than anyone else besides my daughter (whom I would never make do this), but who could remove himself enough to pull off my wishes and, if needed, talk to his father and grandparents and make a balanced and smart decision. My oldest son, who is 25 years old.
With every test, I felt a stronger and stronger desire, almost a desperate desire, that I pass for my tiny friend's sake. I feared that the panel of surgeons and social workers wouldn't let me do this for her, because she was my boss, and they said they couldn't prove there was no coercion. I quit my job, because I was going to anyway after her surgery, which would hopefully now be mine as well. Toward the very end of all the tests, I emotionally HAD to pass them for her. I wouldn't know how to tell her, if I didn't pass a test.
I passed them all!!! The panel decided my reasons for donation are altruistic, my kidneys are normally shaped, and I have no cancer, heart issues, or infectious diseases! I was giddy when I got the news!!! I squeeled and jumped up and down like a tween girl!!! I happy danced!!! I was hyper all day!!! I was so happy and relieved for her!
I wanted to tell her in a couple of days which was her birthday, but how could I keep that info away? So I texted her when I found out, at about 7 am. Later that day I went in to my former work to buy something. Turns out that WAS her birthday!!!! I am so happy that I did not wait!!!
Now that I am looking at surgery in 2 weeks, there's a small part of me somewhere inside that is becoming a bit nervous. It seemed to start after I read about 3 donors whose health were affected for the worse for the rest of their life, but I find comfort in knowing that even they don't regret donation and would do it over again.
Friday, December 12, 2014
Wednesday, December 3, 2014
Paired Exchange Program
If you are considering, or desiring, donating your kidney to a friend who is incompatible, the paired exchange program is worth looking into. It's an ingenious miracle program!
I was told that once all the tests were completed, we could set an operation date, often within just a couple of weeks. I was really hoping that meant we'd be able to be scheduled for after Christmas and before New Years Eve, just because I was excited for my tiny recipient to start feeling better. When I asked, they said that normally it might be that soon, but 1) that's when a lot of people want to schedule surgeries, because they're taking the time off work anyway, and 2) there was a six-kidney-exchange happening then, which was very exciting! You only need one compatible pair, if one is found truly compatible both ways, but they will link however many is needed to complete the circle so that everybody wins.
A kidney exchange happens when a recipient has a willing donor, but the donor's kidney is not compatible with their chosen recipient, usually because of an incompatible blood type. For instance Type O blood can donate to every other blood type, but they can only receive Type O blood. Type AB can receive from any blood type, but can only give to Type AB. The coordinators find one or more of these type of recipient/donor pairs until they have the perfect linkage (like a chain circle).
This group had been waiting for the missing link for several months, and that link showed up, so they scheduled them in right away. That doesn't mean that all the recipients and donors were in the same hospital at the same time, but it does mean that the doctors had to be coordinated in order for kidneys to be transported in the right order. I think they did have a full 2 pairs (that's 3 kidneys and 4 people in surgery, scheduled for our hospital that day.
More information about Paired Exchange Programs can be found at http://www.matchingdonors.com/life/index.cfm?page=p030
I was told that once all the tests were completed, we could set an operation date, often within just a couple of weeks. I was really hoping that meant we'd be able to be scheduled for after Christmas and before New Years Eve, just because I was excited for my tiny recipient to start feeling better. When I asked, they said that normally it might be that soon, but 1) that's when a lot of people want to schedule surgeries, because they're taking the time off work anyway, and 2) there was a six-kidney-exchange happening then, which was very exciting! You only need one compatible pair, if one is found truly compatible both ways, but they will link however many is needed to complete the circle so that everybody wins.
A kidney exchange happens when a recipient has a willing donor, but the donor's kidney is not compatible with their chosen recipient, usually because of an incompatible blood type. For instance Type O blood can donate to every other blood type, but they can only receive Type O blood. Type AB can receive from any blood type, but can only give to Type AB. The coordinators find one or more of these type of recipient/donor pairs until they have the perfect linkage (like a chain circle).
This group had been waiting for the missing link for several months, and that link showed up, so they scheduled them in right away. That doesn't mean that all the recipients and donors were in the same hospital at the same time, but it does mean that the doctors had to be coordinated in order for kidneys to be transported in the right order. I think they did have a full 2 pairs (that's 3 kidneys and 4 people in surgery, scheduled for our hospital that day.
More information about Paired Exchange Programs can be found at http://www.matchingdonors.com/life/index.cfm?page=p030
Wednesday, November 19, 2014
4 Phases of Testing
When I contacted the kidney transplant agency, the first thing they did was send me a bunch of information to read before signing my consent to going forward with the testing, and then I had to sign in front of a notary that I am making this decision without coercion, which is sent to them with an application. Part of the application was my first blood test, the ABO order. The agency would not call me or contact me until they received the ABO results and the application and signed forms, because they did not want me to ever feel pressured, even by them.
The packet covered EVERYTHING, from kidney function and testing to FAQs to expected surgery plan, recovery, and follow-up appointments, and the history of kidney transplant and statistics. The information comes three more times in later phases, so they make sure the donor knows very well what to expect.
Then, after they received the application and two signed documents and ABO result, the coordinator called me to ask me why I am choosing to donate, how do I know my recipient, being sure I don't feel pressure from anybody including the agency, what I can expect with surgery, and the rules I will be expected to keep now and others for the rest of my life (basically, just to keep rules of health and safety and how to keep my last remaining kidney healthy), the history of kidney transplant and statistics, and she answered any questions I had. That would be the second time I got most of the information.
Part of this packet was a list of four phases to be completed in order. Once one phase is complete, all tests passed, and all results are received by them, they called me to let me know how to get the next phase competed. I will use this list to help me explain in order the tests I completed and my experiences with them.
PHASE ONE
ABO order. Blood test, to see if I have a blood type compatible with my recipient. She has O+, and although O blood types can give to all blood types, they can only receive from other O blood type. I also have O+ blood, so we are a match!
There was a mandatory class for the donor. It can be taken in person, if I lived in the vicinity, or there is a phone class, where each of us could both hear and ask questions. They had sent a PDF of the slide show to our emails, which we followed along during class. My mom also participated in the class. This is the third time I learned much of this stuff, but there was enough time in between for the info to sink in and questions for clarification to form. Also, this time we had pictures and diagrams to help us visualize what we were learning. We also got to hear other's questions and answers that maybe we hadn't thought of, but liked to know. It was good.
PHASE TWO
24-hour urine collection. They gave me a collection container and a storage container. They said to plan on staying at home the whole 24 hours, because you don't want to hold your urine nor become dehydrated. Neither do you want to drink an overload of water. You are supposed to collect every single drop. Every one. The urine is poured into the storage container, which you cannot see through, an orangey-brown plastic bladder, and kept in the refrigerator. They want to see what your kidney usually does and how it functions. It is common to fail the test the first time and have to take it again. I was very, very careful to follow each direction precisely and not take chances or cut corners. I passed the first time.
When I got to the hospital lab, they wanted a fresh urine sample as well.
I also needed to give several (12?) vials of blood for testing. I was amazed at how fast it was! Even changing the vials were incredibly quick, and most important to me, it didn't even hurt when they changed vials! This is because they used something called a butterfly, where the tube only, not the needle, was kept in my arm, and the vials were switched on the tube maybe 6 inches away from my arm. It was wonderful! It is also very expensive, so they only use a butterfly when there are more than just a couple or three vials to change. The vials aren't all filled all the way up, maybe half way up, so it's not as much blood as it might sound like. Some technicians prefer just using a needle and changing the vials at the needle. They say that the tubes are so tiny that there's a huge risk of clogging. Of course, they always say you can't feel it changing, but you can, some less than others.
The blood tests were used for tissue-typing and cross-matching with my recipient to be sure that her body would accept my kidney. There were other tests that those vials were used for, but I don't remember what they were. I had to check my name and birth date on each label. It seems like there was generally about two tests performed per vial.
I also did a diabetes test, which is similar to the gestational diabetes test I had to take when I was pregnant, except that this one didn't make me sick. It was more like drinking a small cup of lemon-lime soda water, rather than the pop-flavored sugar syrup I remember from pregnancy. I did have to be sure I fasted from anything besides water after midnight and until after my test.
If you have never taken a diabetes test, you fast, get a blood test (1 vial), drink the liquid, wait for an hour or two, then get another blood test (1 vial). The guy who took my blood was amazing! I barely felt the poke at all! If there was more than 1 vial each time, he was also amazing at changing them, because I don't remember feeling it change.
PHASE THREE
I don't know what Phase Three entails for men. For a woman older than 30, it includes:
Pap Smear, Mammogram, and Colonoscopy, depending on age. At 47, I only had to do the first two. This phase is the agency's time to gather records from your doctor. This is not when you are expected to get them done, but you may if you wish and don't have a recent one. If you have regular doctor visits and keep up on your annual tests, you do not have to do another. If you haven't had yours recently, you need to get it done, but you or your own insurance pays for these. The recipient's insurance is not allowed to by law, because it is supposed to be part of your regular yearly check up and, therefore, isn't exclusively for the transplant, even if you are only getting it for that reason.
My opinion: DON'T WAIT! DO IT AT THE BEGINNING stages if testing. Otherwise you may find, like I did, that it ends up putting the surgery off another month. It wasn't the agency putting it off, it was waiting a month for an available appointment and then waiting 2 weeks for the pap smear results. I appreciate the clinic and hospital getting me in as soon as they could. I was just frustrated at myself for not realizing it took some time to complete; I was hoping to get the surgery done in November, and it might have, had I not waited until the end to get these tests completed.
PHASE FOUR
I did Phase 4 all at once, because I live kind of far from the hospital and chose to make the trip once. I was at the hospital for close to 5 hours, and they kept me hopping the whole time.
CTA Scan. This was cool. I thought I would be put in a tight tube, but that is a different test that I did not have to do. The CT scan was done with me laying flat on my back, knees raised on pillows, and my body was passed through the bottom section of a giant ring, a foot or two in thickness and maybe four feet in diameter. It reminded me of a third-sized Stargate (from a sci-fi TV series). Once in a while it would tell me to take a breath in and hold it, then 5 or 10 seconds later it would tell me I could release my breath. It was actually fun.
Two things surprised me about my CTA test. First, they put an IV in my arm. Didn't know about that. At one point during the scan they put a liquid into my body through the IV to define on their screen my kidney and it's functional path. The next part that surprised me is this intense warmth when the fluid traveled through my body. The doctor warned me that it may feel like I peed, but that it would only be a sensation, so I was ready for that. What surprised me is that the warmth not only traveled up my arm and down my core, but it also traveled up into my mouth and tongue! That was so weird to experience, but cool! It only lasts for a minute or two. The whole tests lasted about 6 minutes.
Serology Labs. More blood tests. One poke. 6 vials, a couple with just a small bit of blood, like maybe a teaspoon. This set was for ruling out infectious diseases.
Chest x-ray. I remember that I did them, but I don't remember much of the experience. Seems like it was 10 minutes, but I don't remember why. That might include dressing into the robe then back into my clothes. The nurse forgot to tell me that I only needed my bra off (because of the under wire) when she showed me to the changing room and gave me the robe, so I went out with much less on than needed, but all was covered by the robe.
EKG. It took her longer to put the button-sized stickers on my legs, arms, and chest (20 sec, maybe?) than the test itself (maybe 6 seconds). It was amazing to me how fast they can check everything they need about my heart in 6 seconds!
Meeting the physician and everyone working with me. I met:
-The Coordinator that I had talked with several times over the phone.
-The Social Worker who interviewed me to find out how I was doing emotionally, psychologically, and what kind of support I had socially and for recovery, incl. how I would cover my bills while without paychecks, and to be sure I was doing this for the right reasons.
-The Donor's Advocate, whose whole job is to be sure I am treated correctly and without a feeling of being pressured and to be sure I feel safe pulling out at any time.
-The Surgeon, who explained what his plan was for surgery and what I could expect for recovery. Since I hadn't yet done the CT scan, he had not yet seen the picture of my own kidney, so he could only tell me general information; otherwise, had I seen him after the scan, he would have been able to discuss my kidney, specifically.
-The Assistant Surgeon. We had conversation, although I don't remember specifics. I remember that he had me lay down as he very gently moved my left and right sides at my waist up and down for a second or less, maybe feeling my kidneys? I have been curious about what info he received from that, but I didn't ask, and I didn't care. It was certainly no threat.
- The Physician. She made sure I was clear that I can choose right now to not go through with this if I didn't want to make lifelong changes, and made it very clear what was expected of me for the rest of my life after surgery. Be sure I get enough protein, stay hydrated, exercise, no ibuprofen, no medicinal herbs, avoid high sodium (found in prepackaged foods and processed meats).
After I had seen the panel of experts, one at a time, and so quickly one behind the other, I had received all of the information from my training a 4th time, at least.
I have been so impressed with how important they feel it is to give me every statistic, possibility, information, and to be sure I am not harmed for this decision. So impressed, in fact, that I have changed my opinion about the motivation of the medical field, and I have chosen to put on my driver's license that I want to be a donor at death.
The packet covered EVERYTHING, from kidney function and testing to FAQs to expected surgery plan, recovery, and follow-up appointments, and the history of kidney transplant and statistics. The information comes three more times in later phases, so they make sure the donor knows very well what to expect.
Then, after they received the application and two signed documents and ABO result, the coordinator called me to ask me why I am choosing to donate, how do I know my recipient, being sure I don't feel pressure from anybody including the agency, what I can expect with surgery, and the rules I will be expected to keep now and others for the rest of my life (basically, just to keep rules of health and safety and how to keep my last remaining kidney healthy), the history of kidney transplant and statistics, and she answered any questions I had. That would be the second time I got most of the information.
Part of this packet was a list of four phases to be completed in order. Once one phase is complete, all tests passed, and all results are received by them, they called me to let me know how to get the next phase competed. I will use this list to help me explain in order the tests I completed and my experiences with them.
ABO order. Blood test, to see if I have a blood type compatible with my recipient. She has O+, and although O blood types can give to all blood types, they can only receive from other O blood type. I also have O+ blood, so we are a match!
There was a mandatory class for the donor. It can be taken in person, if I lived in the vicinity, or there is a phone class, where each of us could both hear and ask questions. They had sent a PDF of the slide show to our emails, which we followed along during class. My mom also participated in the class. This is the third time I learned much of this stuff, but there was enough time in between for the info to sink in and questions for clarification to form. Also, this time we had pictures and diagrams to help us visualize what we were learning. We also got to hear other's questions and answers that maybe we hadn't thought of, but liked to know. It was good.
PHASE TWO
24-hour urine collection. They gave me a collection container and a storage container. They said to plan on staying at home the whole 24 hours, because you don't want to hold your urine nor become dehydrated. Neither do you want to drink an overload of water. You are supposed to collect every single drop. Every one. The urine is poured into the storage container, which you cannot see through, an orangey-brown plastic bladder, and kept in the refrigerator. They want to see what your kidney usually does and how it functions. It is common to fail the test the first time and have to take it again. I was very, very careful to follow each direction precisely and not take chances or cut corners. I passed the first time.
When I got to the hospital lab, they wanted a fresh urine sample as well.
I also needed to give several (12?) vials of blood for testing. I was amazed at how fast it was! Even changing the vials were incredibly quick, and most important to me, it didn't even hurt when they changed vials! This is because they used something called a butterfly, where the tube only, not the needle, was kept in my arm, and the vials were switched on the tube maybe 6 inches away from my arm. It was wonderful! It is also very expensive, so they only use a butterfly when there are more than just a couple or three vials to change. The vials aren't all filled all the way up, maybe half way up, so it's not as much blood as it might sound like. Some technicians prefer just using a needle and changing the vials at the needle. They say that the tubes are so tiny that there's a huge risk of clogging. Of course, they always say you can't feel it changing, but you can, some less than others.
The blood tests were used for tissue-typing and cross-matching with my recipient to be sure that her body would accept my kidney. There were other tests that those vials were used for, but I don't remember what they were. I had to check my name and birth date on each label. It seems like there was generally about two tests performed per vial.
I also did a diabetes test, which is similar to the gestational diabetes test I had to take when I was pregnant, except that this one didn't make me sick. It was more like drinking a small cup of lemon-lime soda water, rather than the pop-flavored sugar syrup I remember from pregnancy. I did have to be sure I fasted from anything besides water after midnight and until after my test.
If you have never taken a diabetes test, you fast, get a blood test (1 vial), drink the liquid, wait for an hour or two, then get another blood test (1 vial). The guy who took my blood was amazing! I barely felt the poke at all! If there was more than 1 vial each time, he was also amazing at changing them, because I don't remember feeling it change.
PHASE THREE
I don't know what Phase Three entails for men. For a woman older than 30, it includes:
Pap Smear, Mammogram, and Colonoscopy, depending on age. At 47, I only had to do the first two. This phase is the agency's time to gather records from your doctor. This is not when you are expected to get them done, but you may if you wish and don't have a recent one. If you have regular doctor visits and keep up on your annual tests, you do not have to do another. If you haven't had yours recently, you need to get it done, but you or your own insurance pays for these. The recipient's insurance is not allowed to by law, because it is supposed to be part of your regular yearly check up and, therefore, isn't exclusively for the transplant, even if you are only getting it for that reason.
My opinion: DON'T WAIT! DO IT AT THE BEGINNING stages if testing. Otherwise you may find, like I did, that it ends up putting the surgery off another month. It wasn't the agency putting it off, it was waiting a month for an available appointment and then waiting 2 weeks for the pap smear results. I appreciate the clinic and hospital getting me in as soon as they could. I was just frustrated at myself for not realizing it took some time to complete; I was hoping to get the surgery done in November, and it might have, had I not waited until the end to get these tests completed.
PHASE FOUR
I did Phase 4 all at once, because I live kind of far from the hospital and chose to make the trip once. I was at the hospital for close to 5 hours, and they kept me hopping the whole time.
CTA Scan. This was cool. I thought I would be put in a tight tube, but that is a different test that I did not have to do. The CT scan was done with me laying flat on my back, knees raised on pillows, and my body was passed through the bottom section of a giant ring, a foot or two in thickness and maybe four feet in diameter. It reminded me of a third-sized Stargate (from a sci-fi TV series). Once in a while it would tell me to take a breath in and hold it, then 5 or 10 seconds later it would tell me I could release my breath. It was actually fun.
Two things surprised me about my CTA test. First, they put an IV in my arm. Didn't know about that. At one point during the scan they put a liquid into my body through the IV to define on their screen my kidney and it's functional path. The next part that surprised me is this intense warmth when the fluid traveled through my body. The doctor warned me that it may feel like I peed, but that it would only be a sensation, so I was ready for that. What surprised me is that the warmth not only traveled up my arm and down my core, but it also traveled up into my mouth and tongue! That was so weird to experience, but cool! It only lasts for a minute or two. The whole tests lasted about 6 minutes.
Serology Labs. More blood tests. One poke. 6 vials, a couple with just a small bit of blood, like maybe a teaspoon. This set was for ruling out infectious diseases.
Chest x-ray. I remember that I did them, but I don't remember much of the experience. Seems like it was 10 minutes, but I don't remember why. That might include dressing into the robe then back into my clothes. The nurse forgot to tell me that I only needed my bra off (because of the under wire) when she showed me to the changing room and gave me the robe, so I went out with much less on than needed, but all was covered by the robe.
EKG. It took her longer to put the button-sized stickers on my legs, arms, and chest (20 sec, maybe?) than the test itself (maybe 6 seconds). It was amazing to me how fast they can check everything they need about my heart in 6 seconds!
Meeting the physician and everyone working with me. I met:
-The Coordinator that I had talked with several times over the phone.
-The Social Worker who interviewed me to find out how I was doing emotionally, psychologically, and what kind of support I had socially and for recovery, incl. how I would cover my bills while without paychecks, and to be sure I was doing this for the right reasons.
-The Donor's Advocate, whose whole job is to be sure I am treated correctly and without a feeling of being pressured and to be sure I feel safe pulling out at any time.
-The Surgeon, who explained what his plan was for surgery and what I could expect for recovery. Since I hadn't yet done the CT scan, he had not yet seen the picture of my own kidney, so he could only tell me general information; otherwise, had I seen him after the scan, he would have been able to discuss my kidney, specifically.
-The Assistant Surgeon. We had conversation, although I don't remember specifics. I remember that he had me lay down as he very gently moved my left and right sides at my waist up and down for a second or less, maybe feeling my kidneys? I have been curious about what info he received from that, but I didn't ask, and I didn't care. It was certainly no threat.
- The Physician. She made sure I was clear that I can choose right now to not go through with this if I didn't want to make lifelong changes, and made it very clear what was expected of me for the rest of my life after surgery. Be sure I get enough protein, stay hydrated, exercise, no ibuprofen, no medicinal herbs, avoid high sodium (found in prepackaged foods and processed meats).
After I had seen the panel of experts, one at a time, and so quickly one behind the other, I had received all of the information from my training a 4th time, at least.
I have been so impressed with how important they feel it is to give me every statistic, possibility, information, and to be sure I am not harmed for this decision. So impressed, in fact, that I have changed my opinion about the motivation of the medical field, and I have chosen to put on my driver's license that I want to be a donor at death.
Monday, November 10, 2014
Operation Day, continued
The happiest part of my day was when visitors from 7 doors down the hall came to visit. My recipient friend's husband, his mother, and my recipient's father came to meet me, thank me, and brought flowers... A dozen fuchia roses wth yellow lilies, most of which will be opening once I get home, and purple flox. They were still waiting for my friend to wake up in the recovery room. It would take her about two hours of sleeping before waking up. This is normal for the recipient. I wasn't even sleepy anymore.
Later that evening I had some pain on my neck near my shoulder. That, they said, was normal. When they operate, they pump air into my body so that they can see where they are going and navigate the tools. The pain, pinching really, was the air moving to escape. It just felt like the muscle between my neck and shoulder needed a massage and a pinch in my neck.
Something I have very much enjoyed are the compression bubbles on my lower legs. They were put on me before being wheeled into the operation room. They wrap around my calves and have a tube coming from each leg that hooks into a pump. The pump pumps air into the bubbles around my legs to squeeze one for 5 second, then releases, then squeezes the next leg, then releases. It is meant to keep my blood and fluids moving during the operation and recovery so there is no pooling. I love the massage and keep it going all the time, including while I sleep. Others can't stand it, and after the operation it is optional.
As I was about to get into bed, there was no warning...I had to throw up right now. When it came out, it was only 5 soft burps. After they were expelled, no more nausea. Belching and gas from the other end are celebrated here, because it is an indication that the insides are waking up from the anesthesia. As I reclined my seat into a bed, I had another horrible and sudden wave of nausea. This time it was not gentle burps. My body heaved, only to produce a hard, raspy belch. I decided to sleep in a half sitting position.
That night I was awake every hour to push my pain med button for my IV, every 2 hours for my vitals to be taken, every 4 hours for a vial of blood to be sure my body was healing from the artery nick, and several times when my IV beeped to let us know that there was air in the tube or my IV had to be changed out. I was always surprised that I could get back to sleep just fine.
Later that evening I had some pain on my neck near my shoulder. That, they said, was normal. When they operate, they pump air into my body so that they can see where they are going and navigate the tools. The pain, pinching really, was the air moving to escape. It just felt like the muscle between my neck and shoulder needed a massage and a pinch in my neck.
Something I have very much enjoyed are the compression bubbles on my lower legs. They were put on me before being wheeled into the operation room. They wrap around my calves and have a tube coming from each leg that hooks into a pump. The pump pumps air into the bubbles around my legs to squeeze one for 5 second, then releases, then squeezes the next leg, then releases. It is meant to keep my blood and fluids moving during the operation and recovery so there is no pooling. I love the massage and keep it going all the time, including while I sleep. Others can't stand it, and after the operation it is optional.
As I was about to get into bed, there was no warning...I had to throw up right now. When it came out, it was only 5 soft burps. After they were expelled, no more nausea. Belching and gas from the other end are celebrated here, because it is an indication that the insides are waking up from the anesthesia. As I reclined my seat into a bed, I had another horrible and sudden wave of nausea. This time it was not gentle burps. My body heaved, only to produce a hard, raspy belch. I decided to sleep in a half sitting position.
That night I was awake every hour to push my pain med button for my IV, every 2 hours for my vitals to be taken, every 4 hours for a vial of blood to be sure my body was healing from the artery nick, and several times when my IV beeped to let us know that there was air in the tube or my IV had to be changed out. I was always surprised that I could get back to sleep just fine.
Tuesday, September 30, 2014
4-Week Mark Report
My surgeon put a lot of thought and care into where to make incisions, I just know it, and I appreciate it.
Toward the beginning of this past week, physically and emotionally I was irritated (not cranky on the outside, just on the inside) for 3 reasons.
1) My scabs were becoming thicker and stiffer in an attempt to come off. My center incision scab was particularly irritating. It was thick and roundish, like a button, and the skin around it felt like the skin surrounding a zit. Irritating. I was relieved when it finally fell off. This week almost all of my scabs fell off. I only have a small section of scab left on my largest incision below my belly.
2) I feel normal. My belly looks the same as pre-operation. The only difference is not visible, which is that my sagging belly pocket is not just skin, but still has some edema. Also, the skin surrounding my largest incision under my belly is still numb-like. This is all good, but I had been counting down to when I could return to my kids at school. I had, in my mind, only 2 weeks at home left. I found out that I was wrong. I still had 3 weeks left! Now, the surgeon said that anytime I feel ready for work, he will support me. However, my coordinator suggested 4 weeks if I have a posh, desk only, do nothing job, and my nurse suggested I stay away from crowds because of germs. It is all up to me. My heart wats to be at school, but it is most important for me to play it safe. Therefore, I was irritated because of my inner struggle.
3) I felt it was important to attend parent-teacher conference. It takes 15 minutes to walk to school when a crossing guard is on duty, but without her I wasn't sure how long it would be to find a good space between cars going both directions, so I planned to leave my house 5 minutes earlier. Then my mind got involved in something or other, and when I looked up at the time, I had 15 minutes until my appointment. So, I walked quickly. Although I was not in any real danger from it, I was slightly dizzy for the next hour and a half, and my back hurt the rest of the day. I realized I had lost strength from always reclining, so all week I have been concentrating on sitting up on the couch, rather than so much reclining.
Please note, I was not actually cranky on the outside, nor depressed. I think this is important so that you know how I was feeling, but it wasn't so bad as to involve others. Overall, I An happy and looking forward.
Back to my skilled and thoughtful surgeon (and what I am finding as my scabs come off). The top most scar is so small (1/4 inch?), I wonder if it will even be seen in a year. The scar on the top edge of my belly button is already almost invisible, because it looks like the upper edge of my navel. The largest incision below my belly is so thin (like a cat scratch) and placed so well (just above my natural fold) I am pretty sure nobody will ever see it, even if someday I decide to get all toned and tan and in a bikini (which I highly doubt).
The only one left is that irritating one with the
button scab. It is the most likely to be seen, but the scar won't call attention to itself even to the point that someone notices. However, it looks to me that I may have a simple when my stomach muscles flex inward. That is it. My children lovingly has nicknamed it my second belly button. (I think they are jealous.)
Although I had wanted to take this journey in secret, I am so grateful for everybody who has helped with prayers, meals, thoughts, flowers, notes, jammies, and friendship in so many other ways. I was surprised that people who were family of friends of my friend's mother, who didn't know either of us, wanted to be part of our healing as well. I had not realized that this experience would touch so many lives from all over.
This was a very positive experience. There is so much fear surrounding such a donation that I hope I can help alleviate. I believe that if more people knew that it really is a rewarding experience for the donor as well as the recipient, and that if they knew how careful the doctors are to be sure there is no lasting problems associated, but if there were their life and finances would be secure, I think more people would want to do this. After the first two days, I felt like I was living the affirmation, "Every day in every way I am getting (and feeling) better and better!"
From here on out, I will only write another post something important comes up, for instance the day I realize I don't feel anything but normal, which I expect in about 2 more weeks, and when I realize I feel healthier than ever, which I expect in about 5 more months, and maybe a picture or two and my follow-up appointment in a year.
Donor? Absolutely! And Advocate!
Toward the beginning of this past week, physically and emotionally I was irritated (not cranky on the outside, just on the inside) for 3 reasons.
1) My scabs were becoming thicker and stiffer in an attempt to come off. My center incision scab was particularly irritating. It was thick and roundish, like a button, and the skin around it felt like the skin surrounding a zit. Irritating. I was relieved when it finally fell off. This week almost all of my scabs fell off. I only have a small section of scab left on my largest incision below my belly.
2) I feel normal. My belly looks the same as pre-operation. The only difference is not visible, which is that my sagging belly pocket is not just skin, but still has some edema. Also, the skin surrounding my largest incision under my belly is still numb-like. This is all good, but I had been counting down to when I could return to my kids at school. I had, in my mind, only 2 weeks at home left. I found out that I was wrong. I still had 3 weeks left! Now, the surgeon said that anytime I feel ready for work, he will support me. However, my coordinator suggested 4 weeks if I have a posh, desk only, do nothing job, and my nurse suggested I stay away from crowds because of germs. It is all up to me. My heart wats to be at school, but it is most important for me to play it safe. Therefore, I was irritated because of my inner struggle.
3) I felt it was important to attend parent-teacher conference. It takes 15 minutes to walk to school when a crossing guard is on duty, but without her I wasn't sure how long it would be to find a good space between cars going both directions, so I planned to leave my house 5 minutes earlier. Then my mind got involved in something or other, and when I looked up at the time, I had 15 minutes until my appointment. So, I walked quickly. Although I was not in any real danger from it, I was slightly dizzy for the next hour and a half, and my back hurt the rest of the day. I realized I had lost strength from always reclining, so all week I have been concentrating on sitting up on the couch, rather than so much reclining.
Please note, I was not actually cranky on the outside, nor depressed. I think this is important so that you know how I was feeling, but it wasn't so bad as to involve others. Overall, I An happy and looking forward.
Back to my skilled and thoughtful surgeon (and what I am finding as my scabs come off). The top most scar is so small (1/4 inch?), I wonder if it will even be seen in a year. The scar on the top edge of my belly button is already almost invisible, because it looks like the upper edge of my navel. The largest incision below my belly is so thin (like a cat scratch) and placed so well (just above my natural fold) I am pretty sure nobody will ever see it, even if someday I decide to get all toned and tan and in a bikini (which I highly doubt).
The only one left is that irritating one with the
button scab. It is the most likely to be seen, but the scar won't call attention to itself even to the point that someone notices. However, it looks to me that I may have a simple when my stomach muscles flex inward. That is it. My children lovingly has nicknamed it my second belly button. (I think they are jealous.)
Although I had wanted to take this journey in secret, I am so grateful for everybody who has helped with prayers, meals, thoughts, flowers, notes, jammies, and friendship in so many other ways. I was surprised that people who were family of friends of my friend's mother, who didn't know either of us, wanted to be part of our healing as well. I had not realized that this experience would touch so many lives from all over.
This was a very positive experience. There is so much fear surrounding such a donation that I hope I can help alleviate. I believe that if more people knew that it really is a rewarding experience for the donor as well as the recipient, and that if they knew how careful the doctors are to be sure there is no lasting problems associated, but if there were their life and finances would be secure, I think more people would want to do this. After the first two days, I felt like I was living the affirmation, "Every day in every way I am getting (and feeling) better and better!"
From here on out, I will only write another post something important comes up, for instance the day I realize I don't feel anything but normal, which I expect in about 2 more weeks, and when I realize I feel healthier than ever, which I expect in about 5 more months, and maybe a picture or two and my follow-up appointment in a year.
Donor? Absolutely! And Advocate!
Tuesday, September 23, 2014
Annual Cancer Screenings: Don't Wait!
From the very beginning I was given a list of four phases or steps. Once one phase has been completed and approved, the next step can be started.
I thought this meant that my cancer screenings should be fit in the phase they put it in, Phase 3, but it was put in that phase because that is where they obtain those results from my medical file. It was expected that I always get my annual screenings, so they just obtain the results.
I hadn't had mine, and according to my age (over 40 and under 50) I needed to have a breast exam and mammogram, and I needed a pap smear. Had I been 50, instead of 47, I would also have needed a colonoscopy. It all worked out just fine, but the process would have been about a month shorter, had I done my exams at the very beginning.
If you haven't had yours done recently and are of age, don't wait. Get it done and off your list now. You don't need a physician's order to get them done, just an appointment that you make on your own.
The mammogram took a few days to get the results back. The pap smear takes two weeks to get results.
If you don't have insurance, and if $800 would otherwise keep you from getting your screenings, and think you might qualify for financial help, you might go to your county health clinic and see if they have a program or voucher for those who qualify, to make it affordable for you. Be prepared that you don't just walk in for these. You set an appointment at the clinic and at the hospital. They have days and times set aside for patients with vouchers. My clinic was a month out.
I thought this meant that my cancer screenings should be fit in the phase they put it in, Phase 3, but it was put in that phase because that is where they obtain those results from my medical file. It was expected that I always get my annual screenings, so they just obtain the results.
I hadn't had mine, and according to my age (over 40 and under 50) I needed to have a breast exam and mammogram, and I needed a pap smear. Had I been 50, instead of 47, I would also have needed a colonoscopy. It all worked out just fine, but the process would have been about a month shorter, had I done my exams at the very beginning.
If you haven't had yours done recently and are of age, don't wait. Get it done and off your list now. You don't need a physician's order to get them done, just an appointment that you make on your own.
The mammogram took a few days to get the results back. The pap smear takes two weeks to get results.
If you don't have insurance, and if $800 would otherwise keep you from getting your screenings, and think you might qualify for financial help, you might go to your county health clinic and see if they have a program or voucher for those who qualify, to make it affordable for you. Be prepared that you don't just walk in for these. You set an appointment at the clinic and at the hospital. They have days and times set aside for patients with vouchers. My clinic was a month out.
Monday, August 11, 2014
I Offer
After doing research (in July) so that I knew what I was choosing into when I make the offer, I decided that I wanted to take herbs to make my kidneys as youthful as I could, to hopefully let it last longer for my recipient, whom I now considered my friend. I still told no one, because I didn't want the opinions, horror stories, fears, or hero-making of others.
Other people's input or opinions didn't matter to me. God told me, not once but 3 times without my petition, that he would like me to do this. God is all about choice. I know that I am fully choosing this with my own agency. I know God would find someone else if I didn't choose in. I also know that blessings beyond my imagination come when I follow his promptings. When I don't, I miss opportunities, but am never punished. He offers opportunities, and I have found I am happiest when I choose the path he has offered me.
Mid to late August I decided to start herbal teas for my kidney, give it 3 months, then offer my kidney to my friend and start the process in November. Once again, I received a prompting that changed that plan instantly. The same day I bought kidney tea, I pulled in to my parking place at work and then felt the words, "Tell her now." What? "NOW." Just then she came out the door to leave work for the day.
My heart started racing and my hands were sweating. I was nervous, because I felt inadequate. I offer a kidney almost half a century old. She may actually not really like me after all. What if she rejects me, because she doesn't want a part of me with her all the time?
I stopped her on the tiny lawn just before the parking lot. "I need to talk to you.". Ugh, it sounded like I was ready to quit. Could I make an offer worse sounding? Yes. Yes I can. "I would like to know how to start the process of kidney donation. I'm not doing this to save you. I am not a hero. I don't even donate blood. I am doing this to follow a prompting. That's all."
Yah, that was meant to make her feel good. It was meant to make her feel secure that I wasn't going to back out. It was meant to make her feel secure that this time all the tests would be passed, because God said so. Then, as a back door I added, "I don't know if I am prompted for your sake or for mine. I might find out something about my health that I would otherwise find out too late, but I guess we will find out." FAIL.
How do you react to that? She was very composed. I sensed, however, a happiness inside her. That made me happy. She not only didn't reject my kidney, but somehow I gave her good news, and she was happy.
Not knowing why I was prompted to tell her NOW instead of in November, I decided not to take the kidney tea in case the prompting was to stop me in those tracks. A couple days later I found out that it may have complicated things, so I am glad I didn't pursue that path. However, after talking with her (in November) I found out that the day I made my offer she had been having a particularly difficult weekend emotionally and was feeling hopeless, and my message was like a love note from God that helped her keep up hope. He was aware of her.
Other people's input or opinions didn't matter to me. God told me, not once but 3 times without my petition, that he would like me to do this. God is all about choice. I know that I am fully choosing this with my own agency. I know God would find someone else if I didn't choose in. I also know that blessings beyond my imagination come when I follow his promptings. When I don't, I miss opportunities, but am never punished. He offers opportunities, and I have found I am happiest when I choose the path he has offered me.
Mid to late August I decided to start herbal teas for my kidney, give it 3 months, then offer my kidney to my friend and start the process in November. Once again, I received a prompting that changed that plan instantly. The same day I bought kidney tea, I pulled in to my parking place at work and then felt the words, "Tell her now." What? "NOW." Just then she came out the door to leave work for the day.
My heart started racing and my hands were sweating. I was nervous, because I felt inadequate. I offer a kidney almost half a century old. She may actually not really like me after all. What if she rejects me, because she doesn't want a part of me with her all the time?
I stopped her on the tiny lawn just before the parking lot. "I need to talk to you.". Ugh, it sounded like I was ready to quit. Could I make an offer worse sounding? Yes. Yes I can. "I would like to know how to start the process of kidney donation. I'm not doing this to save you. I am not a hero. I don't even donate blood. I am doing this to follow a prompting. That's all."
Yah, that was meant to make her feel good. It was meant to make her feel secure that I wasn't going to back out. It was meant to make her feel secure that this time all the tests would be passed, because God said so. Then, as a back door I added, "I don't know if I am prompted for your sake or for mine. I might find out something about my health that I would otherwise find out too late, but I guess we will find out." FAIL.
How do you react to that? She was very composed. I sensed, however, a happiness inside her. That made me happy. She not only didn't reject my kidney, but somehow I gave her good news, and she was happy.
Not knowing why I was prompted to tell her NOW instead of in November, I decided not to take the kidney tea in case the prompting was to stop me in those tracks. A couple days later I found out that it may have complicated things, so I am glad I didn't pursue that path. However, after talking with her (in November) I found out that the day I made my offer she had been having a particularly difficult weekend emotionally and was feeling hopeless, and my message was like a love note from God that helped her keep up hope. He was aware of her.
Wednesday, July 30, 2014
My Research
I looked all over the web for any information I could find about what to expect before surgery, during surgery, recovery, and how it will affect the rest of my life.
Twenty-seven things that I have learned both during my initial search and during the process that I think you might like to know are:
1) My kidney will probably not be the only kidney my recipient will have the rest of her life. There have been cases where one living donor's kidney has lasted 20 or more years, but also some last 5 yrs., 3 years, 1 year, and there is always the possibility that the donor's kidney is never accepted and it dies without its use. It is very likely my recipient will have several kidney transplants and several donors in her lifetime.
2) After donating a kidney, should my remaining one fail, I will jump to the top of the waiting list, because had I not donated I would have naturally had my second kidney to fall back on.
3) It never dawned on me that bribery or sale or pressure would be used in a donation game, until I read that it happens, but it makes sense that it might come up as a thought for some in desperate circumstances or even big business thinkers, even from the most noble people. Just so that you know, IT IS AGAINST THE LAW to sell or offer any gift or position or favor that could be construed as pressure or coersion or sale for organ donation. (Maybe that has to do with my state or the insurance covering this surgery, because I have seen sites advertising selling your kidney. Well, this blog is about MY experience, right?)
4) BY LAW you will receive your position back at work after your recovery from organ donation if you would like to have it back. (Again, maybe it's MY state's law.)
5) Kidney donation is not saving a life. It is, instead, providing a better quality of life. The recipient has other options. They could wait for their turn on the donor list to come up. They could stay on dialysis the rest of their life. They don't need MY kidney.
During dialysis all of her blood goes through a machine to clean toxins out of her blood, the job of a functioning kidney, and travels back through her body collecting toxins that had built up since last dialysis two days ago, then goes through the machine again, and this cycle happens 8 times in those current 2 hours 45 minutes every other day, and the time goes up as the kidney function decreases, and most patients lose a few pounds or even 10 pounds of toxin filled fluid that could not otherwise be flushed out ...every other day! Yes, they could do this the rest of their life. Therefore, the donation is only offering a better quality of life, without dialysis for instance, and the endurance to dance or hike, if they want. Quality.
6) My recipient has a small bit of function left in her kidney, so she still experiences a bit of urination, but many with kidney failure don't urinate, and if they do make urine, they may not feel the urge to urinate, which can fill up the bladder and back up into the kidney again.
7) When the donor's kidney is placed in the recipient's body, the recipient may pass urine through the new kidney even before the new kidney has been completely attached during surgery!
8) The living donor and recipient go into surgery at about the same time, into side by side rooms. The living donor's kidney is removed, placed in a metal container, inspected, and brought to the recipient right away. A kidney harvested at death has to be kept frozen for a couple days, which can decrease its life or ability to function.
9) The donor is losing a kidney, but the recipient is adding one. The recipient keeps both of their unfunctioning kidneys. The donor's kidney is placed behind the recipient's hip for protection and shorter attachments.
10) If the donor ever, EVER, changes their mind regarding donation, they may back out without shame. They have their very own advocate who will help them back out gracefully. They pretty much keep the donor and the receiver separate, and they each seem to have a different team.
11) It is hardest, at first, for the donor's family to accept the news...it's a shock for them to hear, something they weren't expecting. They will likely ask lots of questions and tell you all the horrors they fear. They may go into denial, say its a desperate act of heroism or attention. They may make a big deal about the donor as a hero. Whatever the case, the biggest reactions are from the family, because they have the most to lose.
Outside the family there may be questions or comments, but their concerns, if any, are subtle and you will mostly hear general acceptance, get a blank stare just from not knowing anything about it and also no opinion, or feeling a need to comment with "wow, you are nice" or "good for you".
12) Every person will tell you this, and from what the doctors say it is true, that the donor's recovery is much more painful than the recipient's. Think about it. The donor is getting an organ and a section of artery removed, and the body's core is voluntarily traumatized, and this after a life of relative health which is what the donor is used to as normal. They will be experiencing pain and weakness for a while that they are not accustomed to. I have been told there is quite a bit of nausea as well.
The recipient has been tired and sick and weak for years. They will be able to do things they have been too tired to do in the past. They will be gaining health immediately and will not have anything removed from them.
It has been said that there is no benefit to the donor. All of the benefit is the receiver's.
13) After surgery, the donor needs to be regular in their annual medical check ups, eat healthily by staying away from prepackaged foods, processed meats, and other foods high in sodium content. They must stay hydrated and also exercise. They must also stop or stay away from high risk activities, like contact sports (boxing, karate, and so forth), skydiving, and anything else likely to injure their only kidney.
14) The donor, once donation is complete, may not use ibuprofen or drugs containing it (this is especially important for those with frequent migraines or twisted or broken body injuries from sports).
Also, no more medicinal herbs ... the kind you get at the health food store! If you use herbs for health, I am with you. I know how you feel about this and about the doctors' lack of understanding herbs. I get it. I feel the same. However, this is one of the conditions. If you don't plan to stop using them, then don't choose to donate. That is the choice you are given and have to make.
15) You will need somebody with you 24 hours per day, 7 days per week from the time you are released from the hospital until you go to your 2 week post-op appointment, and somebody needs to drive you to and from that appointment.
16) It is suggested that the donor plan on being away from work 4-8 weeks. 4 weeks if you work at a sit-only job, and 8 weeks if you are in construction.
For the donor, there is incredible pain for the first two weeks. After only 4 weeks' recovery, though, you are feeling pretty much like normal. However, there is a lot of trauma for the trunk of the body, its core, and it is highly suggested to give it time to strengthen. I have heard that there's still some pain for several months.
17) I was financially responsible for cancer screening, because (according to age) you should already be regularly checking for it. Other than that, my recipient's insurance will cover anything medically related to the donation, including tests, medication for pain, and complications, should they arise. It sounds like that is not always the case with others, so check it out.
18) There is ALWAYS a risk of death when you have surgery. ALWAYS. However, the risk is 0.03 percent (1 in every 30,000), and has only happened so far because of things actually not directly related to the surgery.
Correction: The following site talks about a few complications that were directly connected to the surgery, even a death; nevertheless, those living with complications still said it was worth it and would do it again. http://www.npr.org/blogs/health/2012/07/02/155979681/organ-donation-has-consequences-some-donors-arent-prepared-for
19) My kidney donation agency is very, very careful that I will not be putting my body at any risk or danger by donating. They were very thorough in checking everything to be sure I am healthy physically, mentally, emotionally, and financially--even more for my sake than for my recipient's, which is also important, of course.
I had many blood tests, lots of vials, but only about 4 pokes for blood labs, because they have something called a butterfly which makes it possible to change vials without my even feeling it, because the vials are changed at the end of a tube, rather than at the needle (which doesn't stay in the arm anyway). I think with those 4 pokes, they took 16 vials (not necessarily all full), which was something like 30 different tests! I also had a 24 hour urine collection, a chest x-ray, EKG, and a CT scan.
20) About 50% of the donors chose to donate because they felt what they describe as a prompting from their higher power to do so.
21) They said that it would take 3 weeks to 2 months from the time I turn in my first application papers until surgery. I had hoped to get the application finished and sent by the weekend, but I had trouble finding a local lab to do my blood work. From the time I received the papers until my scheduled surgery, it will have been 5 months. We were ready at 3 1/2 months, but December is the busiest donation surgery month, and there was a donor swap surgery scheduled for the date we were hoping for on the first week in January. It probably could have been just over 2 months, had I completed my initial blood work quickly and already had my cancer screenings.
22) If you are a good candidate for donation but are incompatible with your chosen recipient, you can choose, if you would like, to be part of a donor swap. That means that each recipient has a chosen donor who is committed to donate a kidney in behalf of them. The specialists look for a good match for your recipient, while also looking for someone you would be compatible with. Surgery only happens when both are satisfied at the same time.
The donor swap that will happen on my first choice date is only two donors and two recipients. That was lucky, because they probably didn't have to wait very long to find a match. Last year they actually had several lined up together, but they were missing a compatible donor for one, so they waited. Finally, one came up. They were able to help 8 recipients, because that one donor was the missing link to make the full circle.
23) If I exercised regularly before surgery, I will recover more quickly. After surgery, they want me up and walking a couple of 10-minute walks each day, because they want to be sure I don't have any pooling blood or forming blood clots, to strengthen my core, and to keep atrophy from happening.
24) Age difference doesn't really matter, when you are talking about transplanting a kidney from one adult to another. As far as age difference goes, it is more about the relative size of the kidney. For instance, the kidney of an adult is not going to fit very compatibly with a small child.
There is an age limit to how old you can be to donate. I think this is because the rate of kidney function decreases with aging bodies. I am 48, and that is well within the age limit. My kidney functions at 98%, which is fine.
25) Over the next six months the kidney left inside my body will grow 50% to compensate for the loss of the other.
26) The donors live full, healthy lives, and the loss of a kidney doesn't generally cause long-term health problems. They may even feel better than ever (my guess is because of staying hydrated, being more careful what food they consume, and exercising).
27) The donors must come back for a post-op check up a year later, and then another after that (and maybe at 5 years?). (Well, with this insurance, anyway.)
Twenty-seven things that I have learned both during my initial search and during the process that I think you might like to know are:
1) My kidney will probably not be the only kidney my recipient will have the rest of her life. There have been cases where one living donor's kidney has lasted 20 or more years, but also some last 5 yrs., 3 years, 1 year, and there is always the possibility that the donor's kidney is never accepted and it dies without its use. It is very likely my recipient will have several kidney transplants and several donors in her lifetime.
2) After donating a kidney, should my remaining one fail, I will jump to the top of the waiting list, because had I not donated I would have naturally had my second kidney to fall back on.
3) It never dawned on me that bribery or sale or pressure would be used in a donation game, until I read that it happens, but it makes sense that it might come up as a thought for some in desperate circumstances or even big business thinkers, even from the most noble people. Just so that you know, IT IS AGAINST THE LAW to sell or offer any gift or position or favor that could be construed as pressure or coersion or sale for organ donation. (Maybe that has to do with my state or the insurance covering this surgery, because I have seen sites advertising selling your kidney. Well, this blog is about MY experience, right?)
4) BY LAW you will receive your position back at work after your recovery from organ donation if you would like to have it back. (Again, maybe it's MY state's law.)
5) Kidney donation is not saving a life. It is, instead, providing a better quality of life. The recipient has other options. They could wait for their turn on the donor list to come up. They could stay on dialysis the rest of their life. They don't need MY kidney.
During dialysis all of her blood goes through a machine to clean toxins out of her blood, the job of a functioning kidney, and travels back through her body collecting toxins that had built up since last dialysis two days ago, then goes through the machine again, and this cycle happens 8 times in those current 2 hours 45 minutes every other day, and the time goes up as the kidney function decreases, and most patients lose a few pounds or even 10 pounds of toxin filled fluid that could not otherwise be flushed out ...every other day! Yes, they could do this the rest of their life. Therefore, the donation is only offering a better quality of life, without dialysis for instance, and the endurance to dance or hike, if they want. Quality.
6) My recipient has a small bit of function left in her kidney, so she still experiences a bit of urination, but many with kidney failure don't urinate, and if they do make urine, they may not feel the urge to urinate, which can fill up the bladder and back up into the kidney again.
7) When the donor's kidney is placed in the recipient's body, the recipient may pass urine through the new kidney even before the new kidney has been completely attached during surgery!
8) The living donor and recipient go into surgery at about the same time, into side by side rooms. The living donor's kidney is removed, placed in a metal container, inspected, and brought to the recipient right away. A kidney harvested at death has to be kept frozen for a couple days, which can decrease its life or ability to function.
9) The donor is losing a kidney, but the recipient is adding one. The recipient keeps both of their unfunctioning kidneys. The donor's kidney is placed behind the recipient's hip for protection and shorter attachments.
10) If the donor ever, EVER, changes their mind regarding donation, they may back out without shame. They have their very own advocate who will help them back out gracefully. They pretty much keep the donor and the receiver separate, and they each seem to have a different team.
11) It is hardest, at first, for the donor's family to accept the news...it's a shock for them to hear, something they weren't expecting. They will likely ask lots of questions and tell you all the horrors they fear. They may go into denial, say its a desperate act of heroism or attention. They may make a big deal about the donor as a hero. Whatever the case, the biggest reactions are from the family, because they have the most to lose.
Outside the family there may be questions or comments, but their concerns, if any, are subtle and you will mostly hear general acceptance, get a blank stare just from not knowing anything about it and also no opinion, or feeling a need to comment with "wow, you are nice" or "good for you".
12) Every person will tell you this, and from what the doctors say it is true, that the donor's recovery is much more painful than the recipient's. Think about it. The donor is getting an organ and a section of artery removed, and the body's core is voluntarily traumatized, and this after a life of relative health which is what the donor is used to as normal. They will be experiencing pain and weakness for a while that they are not accustomed to. I have been told there is quite a bit of nausea as well.
The recipient has been tired and sick and weak for years. They will be able to do things they have been too tired to do in the past. They will be gaining health immediately and will not have anything removed from them.
It has been said that there is no benefit to the donor. All of the benefit is the receiver's.
13) After surgery, the donor needs to be regular in their annual medical check ups, eat healthily by staying away from prepackaged foods, processed meats, and other foods high in sodium content. They must stay hydrated and also exercise. They must also stop or stay away from high risk activities, like contact sports (boxing, karate, and so forth), skydiving, and anything else likely to injure their only kidney.
14) The donor, once donation is complete, may not use ibuprofen or drugs containing it (this is especially important for those with frequent migraines or twisted or broken body injuries from sports).
Also, no more medicinal herbs ... the kind you get at the health food store! If you use herbs for health, I am with you. I know how you feel about this and about the doctors' lack of understanding herbs. I get it. I feel the same. However, this is one of the conditions. If you don't plan to stop using them, then don't choose to donate. That is the choice you are given and have to make.
15) You will need somebody with you 24 hours per day, 7 days per week from the time you are released from the hospital until you go to your 2 week post-op appointment, and somebody needs to drive you to and from that appointment.
16) It is suggested that the donor plan on being away from work 4-8 weeks. 4 weeks if you work at a sit-only job, and 8 weeks if you are in construction.
For the donor, there is incredible pain for the first two weeks. After only 4 weeks' recovery, though, you are feeling pretty much like normal. However, there is a lot of trauma for the trunk of the body, its core, and it is highly suggested to give it time to strengthen. I have heard that there's still some pain for several months.
17) I was financially responsible for cancer screening, because (according to age) you should already be regularly checking for it. Other than that, my recipient's insurance will cover anything medically related to the donation, including tests, medication for pain, and complications, should they arise. It sounds like that is not always the case with others, so check it out.
18) There is ALWAYS a risk of death when you have surgery. ALWAYS. However, the risk is 0.03 percent (1 in every 30,000), and has only happened so far because of things actually not directly related to the surgery.
Correction: The following site talks about a few complications that were directly connected to the surgery, even a death; nevertheless, those living with complications still said it was worth it and would do it again. http://www.npr.org/blogs/health/2012/07/02/155979681/organ-donation-has-consequences-some-donors-arent-prepared-for
19) My kidney donation agency is very, very careful that I will not be putting my body at any risk or danger by donating. They were very thorough in checking everything to be sure I am healthy physically, mentally, emotionally, and financially--even more for my sake than for my recipient's, which is also important, of course.
I had many blood tests, lots of vials, but only about 4 pokes for blood labs, because they have something called a butterfly which makes it possible to change vials without my even feeling it, because the vials are changed at the end of a tube, rather than at the needle (which doesn't stay in the arm anyway). I think with those 4 pokes, they took 16 vials (not necessarily all full), which was something like 30 different tests! I also had a 24 hour urine collection, a chest x-ray, EKG, and a CT scan.
20) About 50% of the donors chose to donate because they felt what they describe as a prompting from their higher power to do so.
21) They said that it would take 3 weeks to 2 months from the time I turn in my first application papers until surgery. I had hoped to get the application finished and sent by the weekend, but I had trouble finding a local lab to do my blood work. From the time I received the papers until my scheduled surgery, it will have been 5 months. We were ready at 3 1/2 months, but December is the busiest donation surgery month, and there was a donor swap surgery scheduled for the date we were hoping for on the first week in January. It probably could have been just over 2 months, had I completed my initial blood work quickly and already had my cancer screenings.
22) If you are a good candidate for donation but are incompatible with your chosen recipient, you can choose, if you would like, to be part of a donor swap. That means that each recipient has a chosen donor who is committed to donate a kidney in behalf of them. The specialists look for a good match for your recipient, while also looking for someone you would be compatible with. Surgery only happens when both are satisfied at the same time.
The donor swap that will happen on my first choice date is only two donors and two recipients. That was lucky, because they probably didn't have to wait very long to find a match. Last year they actually had several lined up together, but they were missing a compatible donor for one, so they waited. Finally, one came up. They were able to help 8 recipients, because that one donor was the missing link to make the full circle.
23) If I exercised regularly before surgery, I will recover more quickly. After surgery, they want me up and walking a couple of 10-minute walks each day, because they want to be sure I don't have any pooling blood or forming blood clots, to strengthen my core, and to keep atrophy from happening.
24) Age difference doesn't really matter, when you are talking about transplanting a kidney from one adult to another. As far as age difference goes, it is more about the relative size of the kidney. For instance, the kidney of an adult is not going to fit very compatibly with a small child.
There is an age limit to how old you can be to donate. I think this is because the rate of kidney function decreases with aging bodies. I am 48, and that is well within the age limit. My kidney functions at 98%, which is fine.
25) Over the next six months the kidney left inside my body will grow 50% to compensate for the loss of the other.
26) The donors live full, healthy lives, and the loss of a kidney doesn't generally cause long-term health problems. They may even feel better than ever (my guess is because of staying hydrated, being more careful what food they consume, and exercising).
27) The donors must come back for a post-op check up a year later, and then another after that (and maybe at 5 years?). (Well, with this insurance, anyway.)
Friday, July 18, 2014
Other Donors Step Up
New Years 2014, something changed. My coworkers starting acting like I was a person and no longer a bump they had to endure. Not that they liked me quite yet, but as if they made a New Year's resolution to try to find a way to like me. Turns out, they had new evidence that suggested that what they had believed about me was not accurate, so they were going to give me a clean chance. (Looking back, I think God orchestrated this change.) By April I was convinced that my coworkers genuinely liked me.
In their giving me a chance, they started including me in little conversations. In January I found out that my tiny supervisor's sister was coming home early from her full time religious mission in another country to donate a kidney to this, her older sister. I was floored. Why did I have that prompting if someone was already donating to her?
It had only been a couple of weeks since my prompting. Had my supervisor been suddenly approved to be put on the waiting list? Nope. I guessed family members could donate before approval for being added to the waiting list, or maybe it was required first.
I had planned to give my 2 week notice that weekend, but I decided to stay so that my boss didn't have to worry about hiring and training while she was supposed to be in recovery. I did tell her that when she came back after recovery, I would give my notice. I figured since my transformation from bump to human made it tolerable, I could hang in there just a little longer for a good cause.
I started being trained to close the drawers, which kept me from my home after my kids were home from school, but it would only be a few weeks. I was somehow under the impression that the surgery would be in February, but it became late March, and I had never heard more about it, except that her sister had made it here and was going through testing. I heard nothing more and was wondering when I would be quitting.
Finally I asked, and I found out that the very last test ruled her sister out as a donor, because her kidneys were abnormally shaped. Just so you know, 60% of people have "normally shaped" kidneys. The rest have kidneys that are varied in shape or connections, which function fine in their own way, but which could not be attached to someone else.
I found out that Facebook and local newspapers from her home town in another state petitioned another donor. I felt a second prompting, "here's a chance to offer," but I decided to wait for a month and see if there was anyone else to step up, first. There was.
In April I inquired and found out that a former high school acquaintance of my tiny supervisor remembered her and wanted to help. She started the process. I heard nothing more. Remembering that it usually takes only about 8 weeks for testing before surgery, when July came and still no surgery, I asked a co-worker if she had heard anything. Turns out that donor had pulled out a while back, and no other donor had come forward yet. That's when the 3rd prompting came, "That's because you are supposed to donate to her."
I still wasn't committed enough to make the offer, but I was ready to believe the prompting and start secretly and seriously researching.
In their giving me a chance, they started including me in little conversations. In January I found out that my tiny supervisor's sister was coming home early from her full time religious mission in another country to donate a kidney to this, her older sister. I was floored. Why did I have that prompting if someone was already donating to her?
It had only been a couple of weeks since my prompting. Had my supervisor been suddenly approved to be put on the waiting list? Nope. I guessed family members could donate before approval for being added to the waiting list, or maybe it was required first.
I had planned to give my 2 week notice that weekend, but I decided to stay so that my boss didn't have to worry about hiring and training while she was supposed to be in recovery. I did tell her that when she came back after recovery, I would give my notice. I figured since my transformation from bump to human made it tolerable, I could hang in there just a little longer for a good cause.
I started being trained to close the drawers, which kept me from my home after my kids were home from school, but it would only be a few weeks. I was somehow under the impression that the surgery would be in February, but it became late March, and I had never heard more about it, except that her sister had made it here and was going through testing. I heard nothing more and was wondering when I would be quitting.
Finally I asked, and I found out that the very last test ruled her sister out as a donor, because her kidneys were abnormally shaped. Just so you know, 60% of people have "normally shaped" kidneys. The rest have kidneys that are varied in shape or connections, which function fine in their own way, but which could not be attached to someone else.
I found out that Facebook and local newspapers from her home town in another state petitioned another donor. I felt a second prompting, "here's a chance to offer," but I decided to wait for a month and see if there was anyone else to step up, first. There was.
In April I inquired and found out that a former high school acquaintance of my tiny supervisor remembered her and wanted to help. She started the process. I heard nothing more. Remembering that it usually takes only about 8 weeks for testing before surgery, when July came and still no surgery, I asked a co-worker if she had heard anything. Turns out that donor had pulled out a while back, and no other donor had come forward yet. That's when the 3rd prompting came, "That's because you are supposed to donate to her."
I still wasn't committed enough to make the offer, but I was ready to believe the prompting and start secretly and seriously researching.
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