When it became obvious to me that I was about to choose in to an elective, major surgery, I searched the internet for information. I wanted to hear facts from the kidney foundations, which I found plenty of. I also wanted to know the donor's side, which I never did find.
Correction: I just found another (2 weeks before my own surgery.). Her writing is shorter than mine and has more humor. It is interesting to me the similarities and differences in the process to donate. Hers includes pictures and includes accurate facts.Very cool. Here is her link: http://mylittlekidney.blogspot.com/2011/06/and-verdict-is.html?m=1
Because of my lifelong skepticism of the financial motivation of the medical field, I believed they would publish whatever was needed to convince people to donate. They are in sales. It is how they make their money. It is what they have to do. Well, I have changed my opinion, after this experience.
I decided a blog from a donor was needed, and almost started one right away, but my need to not be judged (as I will describe below) won on a daily basis, although I kept my intention to fill this need for a future donor. I decided not to include pictures or names, for privacy to all involved, because I am a very publicly private person, although that might surprise you if you have ever met me, as I can be quite friendly and boisterous.
I share my strong belief in God and his hand in all of this and receiving answers and whisperings from him and miracles. If you don't believe in this, I am okay with that, but please respect that I have the right to my own experience. If anything in this blog bothers you, please try to ignore what rubs you wrong and find the parts that you are looking for.
I mention my feelings of skepticism of the financial motivations of the medical field. My skepticism wasn't about the method of allopathy. I have a close family member who works in an HMO hospital, and throughout the years I have picked up on information about financial motivations of the medical field. (Yes, I know about the arguments about the financial motivation of ANYthing.)
I have always gone to the traditional doctor and the hospital and believe in the miracles of medicine and operations. I also have used (and still believe in) the benefits of, herbs, essential oils, and other homeopathic methods. I also go the the chiropractor. I also believe in nutrition and lifestyle. I have done my best to do what I believed was best for each situation, using a balance of all of the above. This has brought scolding from my both my only allopathic friends and from my only natural friends. I do my best, just as everyone else does, which in my case seems to please nobody but me and my conscience.
Please keep into consideration that this is MY own journey. I hope it will give you some idea of what you might expect if your experience is similar to mine. Maybe you can find out from one horse's mouth how accurate the factual information available on the web is. Maybe my journey will answer some of your questions or make their facts more understandable.
I have dated each post as closely to the date it actually happened, in chronological order. If you are interested in my story, please read the posts chronologically, labeled numerically as well, or by title, located by date in the lower right corner under the heading Blog Archives.
For a quick rundown list of information I found through research (and in hindsight I found to be accurate, by the way) without having to read my whole story, look at these posts:
"Research", dated July 30, 2014, and labeled "4"
"4 Phases of Testing", dated November 19, 2014, and labeled "7"
"Paired Exchange Program", dated December 3, 2014, and labeled '6.5"
Other tests are sprinkled throughout the blog. You might get some idea where to find them by looking at the post titles.
Wednesday, February 15, 2017
Tuesday, February 14, 2017
Two-Year Post-Op
Simplest. Appointment. Ever.
I filled out an online survey about my experience.
I went to my local hospital lab to pee in a cup and get one vial of blood.
Done.
No news is good news, they say, but I am more curious than that, so I contacted the kidney donor coordinator to find out the results of my tests. I can't find the results at the moment, but here were her reactions as she read them to me over the phone.
"The first one tested your ______. You did really well. Normal it is _____ and you were slightly under with ______.
"The second tested your ______. Oh, you did very well here. Normal it is ____, and you were quite a bit under. You did GREAT on this one!"
Someday I will find out what those are and fill in the blanks, but my point is that I am apparently healthier in the kidneys than the average person who has two! Yay, me!
I have gained my weight back. I don't know how much. I can fit into my size 6 business pants, but I'm pushing it with bulges. I probably ought to buy some more and find out my real size. Again, when I find out, I will let you know here. (I found out 3/4/17 ,., 149 lbs., so I should probably be wearing my size 8 or 10 pants again. It was a lot of fun being a 4!)
How I am doing with my routines? Uh......
*I was supposed to drink 8 glasses of water.
I do drink water, but I haven't been keeping track, which probably means I am getting down close to 2 or 3.
*I was supposed to take my blood pressure every month.
I forgot about that.
*I am supposed to limit my peanut butter, heavy milk products, processed meats.
Well, I eat WAY less than I did before the donation. Maybe I eat one of these a week. That's limiting, right?
*I am supposed to eat protein.
Yah. Um. I kinda forgot about this. I know most people often eat too much protein. Yah, I have the opposite problem. Four bites of animal protein or beans, and I feel SOOO heavy in my stomach. Not feeling heavy as in my weight or physical appearance, but like I just ate a bunch of really heavy food.
*I am supposed to have a regular exercise routine.
Once we fixed my car, I pretty much stopped walking. I loved walking.
This is good for me to take a look at. I recommit to being conscious of meeting my nutritional needs. I will do this by charting what I eat and drink and adjusting as needed.
There is definitely a sensation across my belly between my bellybutton and my incision at the bikini line. I can't explain it. It's not quite numb. It doesn't quite hurt. It kind of has a sensation of both. When I tighten and release my muscles there while standing up, you almost can't detect any movement of my belly, but my muscle is pretty tight and moving quite a bit on the inside, almost like it is numb, but I have feeling as I push or touch it. It's not normal, but it's not bad, it's just ... different.
If you are actively looking for my incision scars by tugging and pulling, you can find them. However, if you saw me change my clothes, the only scar you would see is my "button", but its pink discoloration is only about 1/4 inch long, and it's maybe 1/16 inch thick. It is disappearing, as well. It looks like it will actually be my skin color rather than white, pretty much disappearing.
I don't know what else to say. It's a great life!!! :) .... and I rock one kidney!
http://www.rock1kidney.org/
I filled out an online survey about my experience.
I went to my local hospital lab to pee in a cup and get one vial of blood.
Done.
No news is good news, they say, but I am more curious than that, so I contacted the kidney donor coordinator to find out the results of my tests. I can't find the results at the moment, but here were her reactions as she read them to me over the phone.
"The first one tested your ______. You did really well. Normal it is _____ and you were slightly under with ______.
"The second tested your ______. Oh, you did very well here. Normal it is ____, and you were quite a bit under. You did GREAT on this one!"
Someday I will find out what those are and fill in the blanks, but my point is that I am apparently healthier in the kidneys than the average person who has two! Yay, me!
I have gained my weight back. I don't know how much. I can fit into my size 6 business pants, but I'm pushing it with bulges. I probably ought to buy some more and find out my real size. Again, when I find out, I will let you know here. (I found out 3/4/17 ,., 149 lbs., so I should probably be wearing my size 8 or 10 pants again. It was a lot of fun being a 4!)
How I am doing with my routines? Uh......
*I was supposed to drink 8 glasses of water.
I do drink water, but I haven't been keeping track, which probably means I am getting down close to 2 or 3.
*I was supposed to take my blood pressure every month.
I forgot about that.
*I am supposed to limit my peanut butter, heavy milk products, processed meats.
Well, I eat WAY less than I did before the donation. Maybe I eat one of these a week. That's limiting, right?
*I am supposed to eat protein.
Yah. Um. I kinda forgot about this. I know most people often eat too much protein. Yah, I have the opposite problem. Four bites of animal protein or beans, and I feel SOOO heavy in my stomach. Not feeling heavy as in my weight or physical appearance, but like I just ate a bunch of really heavy food.
*I am supposed to have a regular exercise routine.
Once we fixed my car, I pretty much stopped walking. I loved walking.
This is good for me to take a look at. I recommit to being conscious of meeting my nutritional needs. I will do this by charting what I eat and drink and adjusting as needed.
There is definitely a sensation across my belly between my bellybutton and my incision at the bikini line. I can't explain it. It's not quite numb. It doesn't quite hurt. It kind of has a sensation of both. When I tighten and release my muscles there while standing up, you almost can't detect any movement of my belly, but my muscle is pretty tight and moving quite a bit on the inside, almost like it is numb, but I have feeling as I push or touch it. It's not normal, but it's not bad, it's just ... different.
If you are actively looking for my incision scars by tugging and pulling, you can find them. However, if you saw me change my clothes, the only scar you would see is my "button", but its pink discoloration is only about 1/4 inch long, and it's maybe 1/16 inch thick. It is disappearing, as well. It looks like it will actually be my skin color rather than white, pretty much disappearing.
I don't know what else to say. It's a great life!!! :) .... and I rock one kidney!
http://www.rock1kidney.org/
Friday, January 6, 2017
The Circle of Life
After the first kidney rejection attempt, which the doctors got under control, a lot of complications started. Mom got gestational diabetes, which they got under control, then high blood pressure, which they got under control, then edema, followed by chasing one of the above or another, eventually landing Mom flat for the remainder of her pregnancy, and finally landing her in the hospital at 26 weeks gestation with the goal of keeping the baby for one more day .... one more hour .... time for an emergency c-section. Baby girl was born 27 weeks and 3 days gestation. 1 lb, something ounces.
Mom watched the birth, although she has no memory, because shortly after the birth Mom suddenly flatlined, but the doctors worked quickly and, with cardio paddles and I have no idea what else, they brought her back from that trauma, but the kidney seemed to continue to be in shock for weeks. They tried different methods of bringing that kidney back into activity.
Update 2/14/17:
Today the baby is 8 1/2 weeks old (35 weeks gestation), 4 lbs. 5.5 ounces, acts like a typical 8 week old. Has lots of hair. Has enough meat on her that someone can pick her up without feeling like she is going to break. Alert. Smart. Still in the hospital with some attachments. Drinking from a bottle. Doing really well.
Mom had a biopsy yesterday. The kidney has a ton of fibrosis, which mean that it has a ton of scar tissue that has replaced regular, pliable tissue, making the kidney unusable. This could be caused by whatever is in the recipient that caused her original kidney to not work. It could be caused by injury due to biological chemicals, diabetes II (does gestational diabetes count?) Bottom line: Mom is being put on dialysis again and being put back on the donor list.
She and I have talked a few times about this possibility, and we both seem to believe the same, but I will just tell my feelings. I know I was told to give this kidney to her. It is not up to me how long her body will use that kidney, but God has always known what would happen and when it would happen. I really believe that the timing of everything has been miraculous.
I believe that Mom and Dad took this possibility of pregnancy very seriously and brought the decision to God and that he gave her peace. I believe that in HER case it was the right thing to do. I believe that if she had been given someone else's kidney, she might never have even had this choice. I am very happy that she had this baby.
She won't be getting pregnant again. There's no way the doctors could have known what would happen. The bulk of her complications were from gestational diabetes and high blood pressure, and I think edema. This might have happened to anyone even with a good original kidney.
I do not mourn my decision. As I learned and mentioned in one of my first posts, it is likely that my recipient will be the recipient of more than just my kidney. You never know when it will be time for a new kidney. Maybe this kidney that I carried for 48 years could have lasted another year had she not become pregnant, or maybe 5, but with the blessings of her doctors and having made the decision in prayer, she gave birth and lives, and it's time for God to bless someone else's life by allowing them the privilege of knowing they did something important and made a contribution in this life to assist in blessing someone else.
Mom watched the birth, although she has no memory, because shortly after the birth Mom suddenly flatlined, but the doctors worked quickly and, with cardio paddles and I have no idea what else, they brought her back from that trauma, but the kidney seemed to continue to be in shock for weeks. They tried different methods of bringing that kidney back into activity.
Update 2/14/17:
Today the baby is 8 1/2 weeks old (35 weeks gestation), 4 lbs. 5.5 ounces, acts like a typical 8 week old. Has lots of hair. Has enough meat on her that someone can pick her up without feeling like she is going to break. Alert. Smart. Still in the hospital with some attachments. Drinking from a bottle. Doing really well.
Mom had a biopsy yesterday. The kidney has a ton of fibrosis, which mean that it has a ton of scar tissue that has replaced regular, pliable tissue, making the kidney unusable. This could be caused by whatever is in the recipient that caused her original kidney to not work. It could be caused by injury due to biological chemicals, diabetes II (does gestational diabetes count?) Bottom line: Mom is being put on dialysis again and being put back on the donor list.
She and I have talked a few times about this possibility, and we both seem to believe the same, but I will just tell my feelings. I know I was told to give this kidney to her. It is not up to me how long her body will use that kidney, but God has always known what would happen and when it would happen. I really believe that the timing of everything has been miraculous.
I believe that Mom and Dad took this possibility of pregnancy very seriously and brought the decision to God and that he gave her peace. I believe that in HER case it was the right thing to do. I believe that if she had been given someone else's kidney, she might never have even had this choice. I am very happy that she had this baby.
She won't be getting pregnant again. There's no way the doctors could have known what would happen. The bulk of her complications were from gestational diabetes and high blood pressure, and I think edema. This might have happened to anyone even with a good original kidney.
I do not mourn my decision. As I learned and mentioned in one of my first posts, it is likely that my recipient will be the recipient of more than just my kidney. You never know when it will be time for a new kidney. Maybe this kidney that I carried for 48 years could have lasted another year had she not become pregnant, or maybe 5, but with the blessings of her doctors and having made the decision in prayer, she gave birth and lives, and it's time for God to bless someone else's life by allowing them the privilege of knowing they did something important and made a contribution in this life to assist in blessing someone else.
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