Gravity Problems
This is a term coined by Bill Burnett, a professor at Stanford University. Gravity problems are problems without a solution. This idea sort of resonated with me. My life feels like one big gravity problem. If there are no solutions, then staying stuck in the problem is of no use.
Makes sense.
The past few days have been facing our gravity problems.
I saw the Nephrologist on Wednesday. I have Chronic Kidney Disease among other things. My GFR or Glomerular Filtration Rate puts me in the early stages or Mild Kidney Insufficiency (Which I think sounds nicer than 'failure'.) My left kidney is half the size of my right. We thought it only had one good sized cyst but turns out there are multiple, blood filled cysts which accounts for the constant kidney pain I feel. My doctor feels confident they aren't cancerous because there was no uptake with the contrast. I don't feel as confident as he does. He prefaced his remarks by telling me that cancerous lesions feed off of blood- and then tells me they are blood filled! I don't know.
The bottom line is, they can't fix any of this. He said it's a slow progressing disease and the treatment can be worse than living with it. I declined the medication. I also declined the biopsy to rule out cancer 100%. I may change my mind on this in the near future. I didn't want to commit to anything until I have enough time to think about this. This explains the pain, the blood in my urine for the past year and, that is my new normal. Since my kidney filters are dying off, the blood, protein, etc. is going to keep leaking through my kidneys. How fun. I haven't had a lot of time to think about my situation. I have been preparing a bit for this kind of news so I wasn't completely shocked.
I had just enough time to get home after my appointment, pick up Shelbie and race to the Cardiologist. That was a 4 hour appointment. The whole point was for him to tell us that Shelbie's heart is not responsible for her declining lung function and that is exactly what he told us! That is exactly what I knew he was going to tell us...
BUT...there's always a but, she has other heart problems. She has some rhythm issues, moderate regurgitation of the tricuspid valve and a hole in her heart. The hole in her heart is very small but, regardless, he is sending us to another sub specialist since she has already had two strokes. In the meantime, she has to wear a 30 day monitor so we can determine what to do about her heart rhythm.
While we were in the waiting room, we met a gentleman who has a pacemaker because a heart surgeon accidentally cut through the lower chamber of his heart's electrical system while replacing a valve. His pacemaker is working at 99%. I had no idea that a pacemaker could do the entire work of the heart's electrical system which made me feel much better about Sam's deteriorating heart muscle. Weird...that that kind of information was helpful! You take what you can.
See what I mean...gravity problems. There is nothing we can do about any of this. We just get to watch how the body slowly deteriorates.
Today, we headed back to Salt Lake for Sam. Our Immunologist was so relieved to see Sam doing much better than he expected after the big scare Sam gave us three months ago when his counts crashed. We don't have lab results yet but the plasma transfusions are helping him a lot from an infection stand point. Going into winter, he wants Sam on daily antibiotics as well. His goal is to keep Sam completely germ free this winter in order to let his immune system and bone marrow rest and rebuild after so many infections over the past few years. He said in 2-4 more months, he would expect Sam to continue to improve. I sure hope he's right. Sam has deferred this semester of school again because he is so run down. I have never seen Sam sleep as much as he does. He works and when he can, he sleeps. He still doesn't look that good to me, his eyes are sunken and dark on most days.
Spencer drove into Salt Lake and met us at the hospital. It was so good to see him. He is finally feeling better. He ended up with a fever on his way home from Mexico and has been down up until yesterday. We went out after our clinic appointments, for a late lunch to celebrate his birthday last week and he opened his presents in the parking lot. We got to hear all about his adventures in Mexico and saw some of the footage he shot. The guys from Deus taught him how to surf so that was fun for him; something he has always wanted to do. They were so happy with his work, the producer has invited him to be the Director of Production on another surfing video next week in Monterrey, California. He will be there for a week.
I'm really so proud of him and all his hard work.
Makes sense.
The past few days have been facing our gravity problems.
I saw the Nephrologist on Wednesday. I have Chronic Kidney Disease among other things. My GFR or Glomerular Filtration Rate puts me in the early stages or Mild Kidney Insufficiency (Which I think sounds nicer than 'failure'.) My left kidney is half the size of my right. We thought it only had one good sized cyst but turns out there are multiple, blood filled cysts which accounts for the constant kidney pain I feel. My doctor feels confident they aren't cancerous because there was no uptake with the contrast. I don't feel as confident as he does. He prefaced his remarks by telling me that cancerous lesions feed off of blood- and then tells me they are blood filled! I don't know.
The bottom line is, they can't fix any of this. He said it's a slow progressing disease and the treatment can be worse than living with it. I declined the medication. I also declined the biopsy to rule out cancer 100%. I may change my mind on this in the near future. I didn't want to commit to anything until I have enough time to think about this. This explains the pain, the blood in my urine for the past year and, that is my new normal. Since my kidney filters are dying off, the blood, protein, etc. is going to keep leaking through my kidneys. How fun. I haven't had a lot of time to think about my situation. I have been preparing a bit for this kind of news so I wasn't completely shocked.
I had just enough time to get home after my appointment, pick up Shelbie and race to the Cardiologist. That was a 4 hour appointment. The whole point was for him to tell us that Shelbie's heart is not responsible for her declining lung function and that is exactly what he told us! That is exactly what I knew he was going to tell us...
BUT...there's always a but, she has other heart problems. She has some rhythm issues, moderate regurgitation of the tricuspid valve and a hole in her heart. The hole in her heart is very small but, regardless, he is sending us to another sub specialist since she has already had two strokes. In the meantime, she has to wear a 30 day monitor so we can determine what to do about her heart rhythm.
While we were in the waiting room, we met a gentleman who has a pacemaker because a heart surgeon accidentally cut through the lower chamber of his heart's electrical system while replacing a valve. His pacemaker is working at 99%. I had no idea that a pacemaker could do the entire work of the heart's electrical system which made me feel much better about Sam's deteriorating heart muscle. Weird...that that kind of information was helpful! You take what you can.
See what I mean...gravity problems. There is nothing we can do about any of this. We just get to watch how the body slowly deteriorates.
Today, we headed back to Salt Lake for Sam. Our Immunologist was so relieved to see Sam doing much better than he expected after the big scare Sam gave us three months ago when his counts crashed. We don't have lab results yet but the plasma transfusions are helping him a lot from an infection stand point. Going into winter, he wants Sam on daily antibiotics as well. His goal is to keep Sam completely germ free this winter in order to let his immune system and bone marrow rest and rebuild after so many infections over the past few years. He said in 2-4 more months, he would expect Sam to continue to improve. I sure hope he's right. Sam has deferred this semester of school again because he is so run down. I have never seen Sam sleep as much as he does. He works and when he can, he sleeps. He still doesn't look that good to me, his eyes are sunken and dark on most days.
Spencer drove into Salt Lake and met us at the hospital. It was so good to see him. He is finally feeling better. He ended up with a fever on his way home from Mexico and has been down up until yesterday. We went out after our clinic appointments, for a late lunch to celebrate his birthday last week and he opened his presents in the parking lot. We got to hear all about his adventures in Mexico and saw some of the footage he shot. The guys from Deus taught him how to surf so that was fun for him; something he has always wanted to do. They were so happy with his work, the producer has invited him to be the Director of Production on another surfing video next week in Monterrey, California. He will be there for a week.
I'm really so proud of him and all his hard work.
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