Little Summary
Hey there,
So I thought about posting about the adventure that was this past week. It was not a fun adventure. Even though I often comment that I am a filthy hippy who doens't shower it was hard and frustrating to not have a working shower all throughout the week. And then not consistently get the help I needed from the people at Lowe's who were supposed to be able to help me. When you end up feeling like you know more than the Lowe's "plumbers" after only a few days of trying to solve your problems that can be frustrating. But I guess learning a lot is a good thing. Anyway this ended up happening -
I ended up getting most of the pieces we needed (and learning a lot about pipe sizes and converting pipe sizes with different pieces) and daddy came and put it all together for me. I am so thankful he did because if he didn't even with me having the right pieces I still won't have a working shower because putting that all together takes a lot of strength and energy.
And if you are wondering what happened since I posted about mom putting in that other one well it's kind of a long story and I don't really want to rehash all of it. Lets just say there have been a lot of melt downs in the past weeks about all of this.
I mentioned last week that I had been thinking about a little recap of life/health issues so here goes (it's a little long but is still very abbreviated) -
Before I was two years old I was diagnosed with what is called HUS (Hemolytic Uremic Syndrome). The gist of what that means is that my kidneys shutdown. (I actually no longer have the kidneys I was born with. they disintegrated because they were not working.) Because my HUS was not caught right away a way a lot of things happened the man big ones being life-flighted to a bigger hospital because doctors did not think I would live and then starting peritoneal dialysis at home. I eventually needed a kidney transplant since mine were not working.
That happened when I was eight and my dad gave me that kidney. I was not on dialysis that whole time but I did end up in the hospital a lot as my body did not function properly. After that some interesting things happened including having to wear a leg bag to school (while I was in the second grade), having to have a few surgeries while I was awake because I had already been given too much anesthesia within the past 24 hours but more problems kept arising and well the list goes on and on. Eventually things stabled out and I would be considered no longer in a critical condition and "healthy."
I will get back to why I say "healthy." In the time from transplant one to needing transplant two some other things happened like having shingles twice and other health problems that arise when you don't have your own kidneys and are on multiple meds. Again I will get back to that.
Around the time I was put back on the transplant list I was very sick. Sicker than I was letting on. I would eat and then a few minutes later (usually before I could even finish eating) I would be running to the bathroom with diarrhea. And I was noticeably losing a lot of weight. At the time I was telling people I was down 20 pounds because I didn't want them to worry but the reality was that I was down 40 pounds. When you don't even have 5 pounds to lose 40 is almost a death sentence. Once I started putting weight back on and the diarrhea problem was fixed I was put on dialysis. While starting that I was again very sick. Throwing up blood sick. There was a point when my hemoglobin was down to 2.2 and all the nurses I saw while being life-flighted said they did not know how I was still alive and my blood looked like red kool-aid (blood should never be that thin). Less than a wek after that was fixed I was life-flighted again because I was having seizures. A medication I was on was causing my brain to swell which caused the seizures. Once that was figured out mom and I continued on with doing hemo-dialysis at home. During this time I was on and off the transplant list because my hemoglobin was still dropping. To be active on the transplant list you have to go 6 weeks without a transfusion because foreign blood mixed with your own makes it harder to match to a donor. I was getting transfusions pretty consistently every 4 weeks. Those two years on the transplant list were filled with a lot of times when I should have died. Most nights I would go to sleep unsure if I would wake up the next day or not.
On top of all of that my dad was in a motorcycle accident where he should have bleed out in the road. While undergoing his first surgery the doctors found his femoral artery severed and actually had to dig around up into his leg muscle to re attach it. For something like a week we were unsure if he would live or die. He lost his right foot but he lived.
During all of this mom was both his caretaker and mine as we did dialysis at home and drove back and forth to the hospital to see dad. Zero fun. Lots of stress. Still get very overwhelmed thinking about all of it. We are here because of Jesus.
I eventually had a spurt where I was made active on the list again and was able to test my very messed up blood at that point because of all the foreign blood that was mixed in with it. And miracle of miracles we got the call about a match. I believe all the medical professional referred to it as a 1 in a million match.
Today dad is still recovering and will forever be recovering. He will not grow his foot back. He will forever have the pain that comes from have tissue and nerves and more cut off where it should not be cut off at.
And today I will still forever be sick. I have organs in my body that I was not born with keeping me alive. That is not a natural thing and our bodies were not made for that. A transplant is a treatment and not a cure. My medical files all read that I have chronic kidney disease - that means this is a current, on-going, everyday of my life thing. Not a past tense thing. I get my blood drawn every month. I see my kidney doctor every four months for check ups to make sure that everything in my body is still functioning the best it can under the circumstances. Those appointments do not include the other appointment that I go to to see other specialist when problems arise like when I go for my yearly scopes and removal of polyps in my stomach. I am on a handful of medication in the morning and another at night - everyday. And these medications also make it so that other problems are common. For example to keep my transplant kidney working I am on what are called immunosupressants. These medications purposefully make my immune system weak so that it does not attach my transplanted organs. That would cause rejection for my kidney and rejection = death. These meds also mean that if I am in a room with 50 people and only one of those people has the cold even if I do not come in direct contact with them there is a high chance that I will get sick. This is one of many facts of my life. Another is that I cannot take over the counter medications or any kind of supplement (not even essential oils). No matter how harmless they seem they will interact in a negative way with the medication that are keeping me alive. And by negative way I mean rejection which as previously mentioned = death. This is why I saw "healthy." For a person with chronic kidney disease yes I am healthy. For a person no I am not healthy. Hospitals, medications, sickness are all still a large, daily part of my life. Lack of energy and tiredness are still a large, daily part of my life. Most days when I get home from work I don't have the energy to do a lot of things. Sometimes not even make supper so easy meals are a must. That is just part of what it means daily for me to be a healthy version of sick.
On the positive side I have a God who has more strength and energy than I could ever imagine having. And he is a giving, loving father who never fails to provide me with what I need for each day. Just like he gives grace on grace on grace he gives me strength on strength on strength. When I am weak he is strong. And that is the real summary of my life.
So I thought about posting about the adventure that was this past week. It was not a fun adventure. Even though I often comment that I am a filthy hippy who doens't shower it was hard and frustrating to not have a working shower all throughout the week. And then not consistently get the help I needed from the people at Lowe's who were supposed to be able to help me. When you end up feeling like you know more than the Lowe's "plumbers" after only a few days of trying to solve your problems that can be frustrating. But I guess learning a lot is a good thing. Anyway this ended up happening -
I ended up getting most of the pieces we needed (and learning a lot about pipe sizes and converting pipe sizes with different pieces) and daddy came and put it all together for me. I am so thankful he did because if he didn't even with me having the right pieces I still won't have a working shower because putting that all together takes a lot of strength and energy.
And if you are wondering what happened since I posted about mom putting in that other one well it's kind of a long story and I don't really want to rehash all of it. Lets just say there have been a lot of melt downs in the past weeks about all of this.
I mentioned last week that I had been thinking about a little recap of life/health issues so here goes (it's a little long but is still very abbreviated) -
Before I was two years old I was diagnosed with what is called HUS (Hemolytic Uremic Syndrome). The gist of what that means is that my kidneys shutdown. (I actually no longer have the kidneys I was born with. they disintegrated because they were not working.) Because my HUS was not caught right away a way a lot of things happened the man big ones being life-flighted to a bigger hospital because doctors did not think I would live and then starting peritoneal dialysis at home. I eventually needed a kidney transplant since mine were not working.
That happened when I was eight and my dad gave me that kidney. I was not on dialysis that whole time but I did end up in the hospital a lot as my body did not function properly. After that some interesting things happened including having to wear a leg bag to school (while I was in the second grade), having to have a few surgeries while I was awake because I had already been given too much anesthesia within the past 24 hours but more problems kept arising and well the list goes on and on. Eventually things stabled out and I would be considered no longer in a critical condition and "healthy."
I will get back to why I say "healthy." In the time from transplant one to needing transplant two some other things happened like having shingles twice and other health problems that arise when you don't have your own kidneys and are on multiple meds. Again I will get back to that.
Around the time I was put back on the transplant list I was very sick. Sicker than I was letting on. I would eat and then a few minutes later (usually before I could even finish eating) I would be running to the bathroom with diarrhea. And I was noticeably losing a lot of weight. At the time I was telling people I was down 20 pounds because I didn't want them to worry but the reality was that I was down 40 pounds. When you don't even have 5 pounds to lose 40 is almost a death sentence. Once I started putting weight back on and the diarrhea problem was fixed I was put on dialysis. While starting that I was again very sick. Throwing up blood sick. There was a point when my hemoglobin was down to 2.2 and all the nurses I saw while being life-flighted said they did not know how I was still alive and my blood looked like red kool-aid (blood should never be that thin). Less than a wek after that was fixed I was life-flighted again because I was having seizures. A medication I was on was causing my brain to swell which caused the seizures. Once that was figured out mom and I continued on with doing hemo-dialysis at home. During this time I was on and off the transplant list because my hemoglobin was still dropping. To be active on the transplant list you have to go 6 weeks without a transfusion because foreign blood mixed with your own makes it harder to match to a donor. I was getting transfusions pretty consistently every 4 weeks. Those two years on the transplant list were filled with a lot of times when I should have died. Most nights I would go to sleep unsure if I would wake up the next day or not.
On top of all of that my dad was in a motorcycle accident where he should have bleed out in the road. While undergoing his first surgery the doctors found his femoral artery severed and actually had to dig around up into his leg muscle to re attach it. For something like a week we were unsure if he would live or die. He lost his right foot but he lived.
During all of this mom was both his caretaker and mine as we did dialysis at home and drove back and forth to the hospital to see dad. Zero fun. Lots of stress. Still get very overwhelmed thinking about all of it. We are here because of Jesus.
I eventually had a spurt where I was made active on the list again and was able to test my very messed up blood at that point because of all the foreign blood that was mixed in with it. And miracle of miracles we got the call about a match. I believe all the medical professional referred to it as a 1 in a million match.
Today dad is still recovering and will forever be recovering. He will not grow his foot back. He will forever have the pain that comes from have tissue and nerves and more cut off where it should not be cut off at.
And today I will still forever be sick. I have organs in my body that I was not born with keeping me alive. That is not a natural thing and our bodies were not made for that. A transplant is a treatment and not a cure. My medical files all read that I have chronic kidney disease - that means this is a current, on-going, everyday of my life thing. Not a past tense thing. I get my blood drawn every month. I see my kidney doctor every four months for check ups to make sure that everything in my body is still functioning the best it can under the circumstances. Those appointments do not include the other appointment that I go to to see other specialist when problems arise like when I go for my yearly scopes and removal of polyps in my stomach. I am on a handful of medication in the morning and another at night - everyday. And these medications also make it so that other problems are common. For example to keep my transplant kidney working I am on what are called immunosupressants. These medications purposefully make my immune system weak so that it does not attach my transplanted organs. That would cause rejection for my kidney and rejection = death. These meds also mean that if I am in a room with 50 people and only one of those people has the cold even if I do not come in direct contact with them there is a high chance that I will get sick. This is one of many facts of my life. Another is that I cannot take over the counter medications or any kind of supplement (not even essential oils). No matter how harmless they seem they will interact in a negative way with the medication that are keeping me alive. And by negative way I mean rejection which as previously mentioned = death. This is why I saw "healthy." For a person with chronic kidney disease yes I am healthy. For a person no I am not healthy. Hospitals, medications, sickness are all still a large, daily part of my life. Lack of energy and tiredness are still a large, daily part of my life. Most days when I get home from work I don't have the energy to do a lot of things. Sometimes not even make supper so easy meals are a must. That is just part of what it means daily for me to be a healthy version of sick.
On the positive side I have a God who has more strength and energy than I could ever imagine having. And he is a giving, loving father who never fails to provide me with what I need for each day. Just like he gives grace on grace on grace he gives me strength on strength on strength. When I am weak he is strong. And that is the real summary of my life.
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