Three hospitalizations in a month sets quite the record for me. Early the week of Thanksgiving week, I started having issues with what appeared to be an obstruction. I then went without eating from Tuesday afternoon through Thursday morning in an attempt to relieve the obstruction. I ate Thanksgiving dinner with the family and got to enjoy one of the best turkey's I have ever eaten (excellent job Steph!) but food did not stay down and the obstruction was a given.
On Friday, we finally decided to go to the hospital and had no idea of the shooting in town and got a bit caught up in the hospital insanity that resulted from that event. We finally got through the ER with a CT scan that showed anasarca in my abdomen. The doctor felt that this probably was causing problems with blood flow and digestion in the intestines and we got moved into a hospital room late Friday night.
Since then, I have been sitting in a hospital room here in Colorado Springs, 'enjoying' a clear liquid diet, dreaming of some of that thanksgiving dinner I did eat. We don't know much about what the future holds at this point. The hospital doctors are hesitant to suggest anything and my doctors have limited availability because of the holiday weekend.
Clear liquids have done well today (I did vomit yesterday) and the cramping seems to have passed completely. Passages appear to be opening so I hope to progress my diet soon but don't know when that may or may not occur. The lack of seeing doctors has been frustrating but I know doctors are people too and need to spend time with their families as well.
This means that a return to work is obviously delayed as does any other return to anything appearing to be normal. Fortunately, I am in Colorado Springs, close to friends and family and can see all of them easily. It also makes things much easier on Stephanie and the kids.
I will update as I get more information but, for now, the hospital is where I will remain for the near future.
Sunday, November 29, 2015
Wednesday, November 18, 2015
Back home again and I am not fine.
Home from New Orleans and I am not doing so well. I weigh in at about 190 pounds right now and that is about 45 pounds of fluid buildup from all the IVs that were running in me last week. The procedures were supposed to be easy with my returning to work right after return but the days in the ICU have made that impossible.
I feel as if I am right back where I was in June after that marathon surgery. My legs are incredibly weak, my body is swollen, and I am fatigued beyond understanding. I am not fine and I feel like the mountains just keep growing in front of me. Stephanie saw someone else's blog post and it fits the way I feel right now.
I have trouble telling people how I really feel. People ask me in the hallway at work how I am doing and it is difficult to know how much to reveal. I do let some people know but it is hard not to say 'fine' when I am asked. Do they really want to hear the real answers? Do they really want to plumb the depth of things that I am dealing with? I know people care but it is hard to get away from 'fine'.
I have the new perc tube with the associated drainage bag. I need to log the output of the tube so that the doctors can evaluate the improvement (or lack thereof) of my right kidney. I can't wear shoes due to the swelling of my feet and I can't wear regular pants because of the swelling in my abdomen and legs.
Recovery is not what it used to be for me. I was fortunate in previous surgeries with the ability to bounce back and recover quickly and fully. These last few incidents have been far from bouncing back. These recoveries are crawling back and giving thanks for every inch that I regain of the miles that I have lost.
I have given up on playing hockey for the foreseeable future. My duties as goalie have been taken over by another goalie because I simply am not physically able and don't see that changing. I almost cannot get to my feet from a kneeling position in normal clothing, let alone the 40 pounds of goalie gear that I would wear.
I haven't given up on skiing yet. I think a 6 run day now would be right at the limit of my capabilities. I don't know how much skiing we will get to do this year but blue groomers are going to be my run of choice for the near future.
So, I am not fine but I am trying to get there. If you ask me how I am doing, I may say fine but understand that there is a huge range of territory covered by 'fine'.
I feel as if I am right back where I was in June after that marathon surgery. My legs are incredibly weak, my body is swollen, and I am fatigued beyond understanding. I am not fine and I feel like the mountains just keep growing in front of me. Stephanie saw someone else's blog post and it fits the way I feel right now.
I have trouble telling people how I really feel. People ask me in the hallway at work how I am doing and it is difficult to know how much to reveal. I do let some people know but it is hard not to say 'fine' when I am asked. Do they really want to hear the real answers? Do they really want to plumb the depth of things that I am dealing with? I know people care but it is hard to get away from 'fine'.
I have the new perc tube with the associated drainage bag. I need to log the output of the tube so that the doctors can evaluate the improvement (or lack thereof) of my right kidney. I can't wear shoes due to the swelling of my feet and I can't wear regular pants because of the swelling in my abdomen and legs.
Recovery is not what it used to be for me. I was fortunate in previous surgeries with the ability to bounce back and recover quickly and fully. These last few incidents have been far from bouncing back. These recoveries are crawling back and giving thanks for every inch that I regain of the miles that I have lost.
I have given up on playing hockey for the foreseeable future. My duties as goalie have been taken over by another goalie because I simply am not physically able and don't see that changing. I almost cannot get to my feet from a kneeling position in normal clothing, let alone the 40 pounds of goalie gear that I would wear.
I haven't given up on skiing yet. I think a 6 run day now would be right at the limit of my capabilities. I don't know how much skiing we will get to do this year but blue groomers are going to be my run of choice for the near future.
So, I am not fine but I am trying to get there. If you ask me how I am doing, I may say fine but understand that there is a huge range of territory covered by 'fine'.
Sunday, November 15, 2015
One more procedure and then home (I hope)
The procedures we were planning on doing last Wednesday had a bit of a hiccup. The urologist was able to insert the left stent with no problem but the right stent would not go. Finally, they called in an interventional radiologist and put a percutaneous nephrostomy tube in the right kidney.
Perc tubes are something I have been fighting for a couple of years but it finally had to happen this time. The hope is that, during tomorrows procedure, they will get the right stent in and the perc tube can be removed once scar tissue has formed to seal the bond (about 6 weeks).
Of course, the second part of the procedure was set to go but, as they transferred me to the other OR, I went into a mini carcinoid crisis. Blood pressure dropped and this is bad for the kidneys so we are hoping that they rebound over the next week. They did end up doing the scoping through the rectum of the tumors and it was determined that they are too far away to be treated with nanoknife.
So, tomorrow morning, at 7am, we try to get the right ureteral stent installed from either above or below. Hopefully this is a non eventful procedure as I have started on the sandostatin tonight and should have saturated all of the tumors. If the stent goes in, they will inject some tracer through the perc tube and determine if the perc tube can be capped off at this point or it needs to remain open to drain the kidney.
Looking to the future, Dr. Boudreaux is also proposing addressing the tumor mass by injecting them with alcohol. This is a technique used to ablate liver tumors and has the possibility of shrinking this tumor mass. Otherwise, the only way to deal with it is a lengthy open surgery to get down to those tumors. The nano knife that was planned cannot be done because the tumors are too far away to reach with the needles.
So, we sit and wait today for the procedure tomorrow. My limbs are swollen from additional fluid and we will start some diuretics today to try and reign in that swelling. Hopefully back in the Springs by Wednesday!
Perc tubes are something I have been fighting for a couple of years but it finally had to happen this time. The hope is that, during tomorrows procedure, they will get the right stent in and the perc tube can be removed once scar tissue has formed to seal the bond (about 6 weeks).
Of course, the second part of the procedure was set to go but, as they transferred me to the other OR, I went into a mini carcinoid crisis. Blood pressure dropped and this is bad for the kidneys so we are hoping that they rebound over the next week. They did end up doing the scoping through the rectum of the tumors and it was determined that they are too far away to be treated with nanoknife.
So, tomorrow morning, at 7am, we try to get the right ureteral stent installed from either above or below. Hopefully this is a non eventful procedure as I have started on the sandostatin tonight and should have saturated all of the tumors. If the stent goes in, they will inject some tracer through the perc tube and determine if the perc tube can be capped off at this point or it needs to remain open to drain the kidney.
Looking to the future, Dr. Boudreaux is also proposing addressing the tumor mass by injecting them with alcohol. This is a technique used to ablate liver tumors and has the possibility of shrinking this tumor mass. Otherwise, the only way to deal with it is a lengthy open surgery to get down to those tumors. The nano knife that was planned cannot be done because the tumors are too far away to reach with the needles.
So, we sit and wait today for the procedure tomorrow. My limbs are swollen from additional fluid and we will start some diuretics today to try and reign in that swelling. Hopefully back in the Springs by Wednesday!
Thursday, November 12, 2015
Trapped in NOLA again
Stephanie was worried Tuesday that the wouldn't let us go after the procedures but I assured her that that would not happen but here we are, trapped for a while in NOLA.
Th procedures did not go as planned big time. The stent swap went well for the left kidney but the right caused problems. The stent that was in there did not appear to be allowing the kidney to drain and it was full of liquid. About 150 ccs of the liquid was dark brown and they think it was old blood but are doing culture on it to make sure. The culture will tell us in 48 hrs if it is infected or not and then another 24 hrs if it is infected to find a treatment.
I do have a temporary percutaneous nephrostomy tube in my right side and it does indicate that the kidney is at least producing urine so we are hoping that it is also filtering the blood and labs should show that. Of course, that takes a few days to find out.
So, we are trapped here again. If the kidney is functioning, we need to find a way to help it drain. If it is not draining we need to decide what to do with it. Leaving it in may lead to infection so they may want to do surgery to remove it or they may not. We just don't know at this point. Hopefully we will at least be able to leave the ICU today or tomorrow and be in the nice rooms on the fifth floor.
It sucks. We did not plan for this and thought the worst case had us coming home on Monday because the prices for flights. Now we may be doing a procedure on Monday. It really sucks. Steph just started a new job and they knew she was going to be out this week but now things are up in the air and that puts strain on her and her job. It really sucks the big one.
Those tumors on the rectum are large and appear to be pushing against the prostate and other organs. We don't know when we will be able to address them or if they are treatable. Just one more thing that sucks about this trip.d
One thing that was good was our meal Monday night at the red fish grill. We ordered the crab cake and the grilled red fish and it was one of the best meals I have ever had. It was on the pricy side but it was phenomenal.
Th procedures did not go as planned big time. The stent swap went well for the left kidney but the right caused problems. The stent that was in there did not appear to be allowing the kidney to drain and it was full of liquid. About 150 ccs of the liquid was dark brown and they think it was old blood but are doing culture on it to make sure. The culture will tell us in 48 hrs if it is infected or not and then another 24 hrs if it is infected to find a treatment.
I do have a temporary percutaneous nephrostomy tube in my right side and it does indicate that the kidney is at least producing urine so we are hoping that it is also filtering the blood and labs should show that. Of course, that takes a few days to find out.
So, we are trapped here again. If the kidney is functioning, we need to find a way to help it drain. If it is not draining we need to decide what to do with it. Leaving it in may lead to infection so they may want to do surgery to remove it or they may not. We just don't know at this point. Hopefully we will at least be able to leave the ICU today or tomorrow and be in the nice rooms on the fifth floor.
It sucks. We did not plan for this and thought the worst case had us coming home on Monday because the prices for flights. Now we may be doing a procedure on Monday. It really sucks. Steph just started a new job and they knew she was going to be out this week but now things are up in the air and that puts strain on her and her job. It really sucks the big one.
Those tumors on the rectum are large and appear to be pushing against the prostate and other organs. We don't know when we will be able to address them or if they are treatable. Just one more thing that sucks about this trip.d
One thing that was good was our meal Monday night at the red fish grill. We ordered the crab cake and the grilled red fish and it was one of the best meals I have ever had. It was on the pricy side but it was phenomenal.
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