No matter how strong a person is, depression will set in at some point in time. The first 10 years of my disease, I was able to avoid any sort of significant depression. Other than the occasional major surgery, the monthly shots, carcinoid syndrome, diarrhea, and other symptoms, I lived a pretty normal life. I knew I had cancer and that it had a good chance of getting me at some point but this did not affect my day to day living and depression never really entered into my life.
This changed in 2012 when I hit a major bowel obstruction and went on TPN for a couple of months prior to the first of two surgeries, one of which was several days. I had procedures to address stents in my biliary duct and had two major carcinoid crisis that put me within inches of death. I lost 50 pounds, looked like death warmed over and still haven't been able to return to a more normal weight. The colostomy from my second major surgery has played hell with my body image although I am starting to get used to it two years later.
The tumors impinged on my ureters and that has caused my kidneys to begin to fail. Their slow decline will be leading to my going on dialysis in the near future and this is yet another hit on body image and on my general life and outlook.
All of these things have led to occasional bouts of depression that have lasted for mere hours to as long as a week. Sometimes, I just get overwhelmed with everything that has happened to me and everything that I know is going to happen. I get overwhelmed by the thoughts of things I will miss out on because the cancer is going to eventually get me. I get overwhelmed by the pressure to be strong and to keep a smiling face.
I hear from so many that they are proud of the way I have handled the disease and how strong I am in the face of the future but sometimes I just need to be weak. For those times, I am extremely thankful for my wife who lets me lean on her when I am weak, who lets me cry as she holds me and comforts me when the thoughts get to be too much, who I know will always be there for me. Being strong is an outward face that most everyone else sees and Stephanie helps me stay strong by giving me a safe place to be weak..
This disease will kill me and of that I have no doubt. I am many years past the point of a medicine finding a miracle cure and have to learn to incorporate that knowledge in my life. Depression will come again. Depression will come close to overwhelming me and my thoughts again. Depression is just another of the battles that I face in my dealing with this disease.
Of course, I am not the only one that gets depressed. Stephanie has a hard time thinking of the things I will miss, the things I can't do, and how all our vacations seem to be to New Orleans for my treatment. My kids never admit to it but I am sure that they have the same bouts of depression that I have but their bouts are on a different level.
Nor is depression unique to me and my disease. I am sure all with chronic or to be fatal diseases have the same issues that I do. Know that they are struggling the same way that I am with the public face of strength and their private battles with what is inevitable. Life goes on whether or not we want it to and the fact of or lack of a disease is nothing that affects the ticking of the clock. Be willing to be there for your friends. Know that they have struggles with happiness and be willing to stand there for them when they do lose control of that public persona.
Tuesday, June 3, 2014
Sunday, May 25, 2014
C is for Carcinoid Crisis
Carcinoid tumors are odd birds. They are of a group of cells in your body that are known as the neuroendocrine system. Neuroendocrine cells receive some sort of signal from your nervous signal and, in response, they release some sort of hormone into your blood system. Those hormones then stimulate another part of your body to perform some task.
For example, if someone sneaks up behind you in the parking lot and screams loudly, your adrenaline gland releases a huge amount of adrenaline into your blood stream, enabling the fight or flight mechanism. Insulin is another example. If you consume a large amount of sugar, your pancreas releases insulin to bring help bring the level of sugar down in your blood to a manageable level.
The neuroendocrine cells from which carcinoid tumors grow are cells that generate serotonin. Serotonin serves several purposes in body but one of the primary jobs is to regulate intestinal movements. The tumors don't forget their previous life as neuroendocrine cells but now there are a much greater number of these cells. What that means is that they still attempt to respond to the signals to regulate intestinal movements.
This results in things getting out of balance. The tumors will get the signal that food has entered the digestive tract and then decide to start telling the rest of the digestive tract to begin processing the food. Normally, this is just fine but with all the extra cells, way too much serotonin gets released and the digestive system goes into overdrive, leading to, often, explosive diarrhea.
In the same vein, kallikrene (yet another hormone but an odd one) is released at times which lead to the blood vessels increasing in size. This affect people notice is that the face and chest will often turn quite red and there is often a feeling of light-headedness that accompanies this along with a drop in blood pressure. I can usually cause this to happen by walking up 5 flights of stairs and then watch my face turn red 45 seconds after reaching the 5th floor.
Carcinoid crisis is when this happens to the extreme and it usually happens at one of the single most scary times possible. General anesthesia is the most complicated portion of a surgery and it is one of the single biggest causes of carcinoid crisis. Under general anesthesia, my entire upper body will turn almost purple, my heart rate drops and my blood pressure hits the floor.
I typically have a fairly low blood pressure (~110/75) but the last time crisis occurred during surgery, I dropped to 75/40 and lower. Heart rate (usually around 65 for me) dropped into the 40s and I was standing at the precipice of death. For this reason, I always try to avoid general anesthesia for any procedures and it appears that low levels of propofol are usually sufficient for the procedures that I have been receiving lately.
Sometime, I will need general anesthesia and we have a plan for that as well. Sandostatin is a drug that seems to inhibit carcinoid syndrome and is generally given in small doses. Whenever I do need a major surgery, I will be admitted the night before and then put on a continual high-dose drip of sandostatin. Just prior to anesthesia being given, I will receive another bolus shot of sandostatin and then the drip will continue throughout the procedure. This worked for me in my second major surgery of 2012 and, if I have to go under again, we hope it will work again.
If I still go into crisis, the key is to then just start giving massive doses of sandostatin and hang with me because I have always come out of it. It takes as long as an hour but as long as my heart continues to pump, I will survive the crisis because the body will simply run out of kallikrene. Whenever I do go in for procedures, even with propofol, I still try my best to scare the anesthesiologist as much as possible and ensure that they have sufficient sandostatin ON HAND in the operating room.
For example, if someone sneaks up behind you in the parking lot and screams loudly, your adrenaline gland releases a huge amount of adrenaline into your blood stream, enabling the fight or flight mechanism. Insulin is another example. If you consume a large amount of sugar, your pancreas releases insulin to bring help bring the level of sugar down in your blood to a manageable level.
The neuroendocrine cells from which carcinoid tumors grow are cells that generate serotonin. Serotonin serves several purposes in body but one of the primary jobs is to regulate intestinal movements. The tumors don't forget their previous life as neuroendocrine cells but now there are a much greater number of these cells. What that means is that they still attempt to respond to the signals to regulate intestinal movements.
This results in things getting out of balance. The tumors will get the signal that food has entered the digestive tract and then decide to start telling the rest of the digestive tract to begin processing the food. Normally, this is just fine but with all the extra cells, way too much serotonin gets released and the digestive system goes into overdrive, leading to, often, explosive diarrhea.
In the same vein, kallikrene (yet another hormone but an odd one) is released at times which lead to the blood vessels increasing in size. This affect people notice is that the face and chest will often turn quite red and there is often a feeling of light-headedness that accompanies this along with a drop in blood pressure. I can usually cause this to happen by walking up 5 flights of stairs and then watch my face turn red 45 seconds after reaching the 5th floor.
Carcinoid crisis is when this happens to the extreme and it usually happens at one of the single most scary times possible. General anesthesia is the most complicated portion of a surgery and it is one of the single biggest causes of carcinoid crisis. Under general anesthesia, my entire upper body will turn almost purple, my heart rate drops and my blood pressure hits the floor.
I typically have a fairly low blood pressure (~110/75) but the last time crisis occurred during surgery, I dropped to 75/40 and lower. Heart rate (usually around 65 for me) dropped into the 40s and I was standing at the precipice of death. For this reason, I always try to avoid general anesthesia for any procedures and it appears that low levels of propofol are usually sufficient for the procedures that I have been receiving lately.
Sometime, I will need general anesthesia and we have a plan for that as well. Sandostatin is a drug that seems to inhibit carcinoid syndrome and is generally given in small doses. Whenever I do need a major surgery, I will be admitted the night before and then put on a continual high-dose drip of sandostatin. Just prior to anesthesia being given, I will receive another bolus shot of sandostatin and then the drip will continue throughout the procedure. This worked for me in my second major surgery of 2012 and, if I have to go under again, we hope it will work again.
If I still go into crisis, the key is to then just start giving massive doses of sandostatin and hang with me because I have always come out of it. It takes as long as an hour but as long as my heart continues to pump, I will survive the crisis because the body will simply run out of kallikrene. Whenever I do go in for procedures, even with propofol, I still try my best to scare the anesthesiologist as much as possible and ensure that they have sufficient sandostatin ON HAND in the operating room.
Sunday, May 18, 2014
B is for Bowels
Carcinoid Cancer is frequently all about the bowels. Most carcinoids are detected in the bowels with about 40% being found (like mine), in the terminal illium (end of the small intestine). Many are found in the rectum, some are in the pancreas and a surprising number of appendectomies are actually caused by the seeds of a carcinoid tumor.
Once the cancer starts, it grows very slowly, sometimes for ten or twenty years before it actually begins to cause any side affects and I have no idea how long mine had been hidden. What I do know is that it was found in 2001 due to a complete small bowel obstruction and had grown to 1.7cm at that time which about twice the size at which they generally begin to metastasize. My best guess is that the cancer started growing about the same time I started grad school in 1990 and has been growing very slowly since that point.
Once the cancer metastasizes, it usually stays in the abdomen, preferring to affect any nearby tissues. It frequently goes to the liver, and often ends up clustering itself around the mesenteric lymph nodes which is exactly the course my cancer took. When it metastasizes, that is when it actually begins to grow much faster and bigger. No one really knows why (yet) but it may be that the soil where the cancer first sprouts is not very fertile and the places it goes to are much more accommodating. This is why I have had 3-4cm tumors throughout my abdomen, even though the primary was quite small and likely would have stayed that way.
Another reason B is for Bowels is the diarrhea that carcinoid syndrome brings with it. The tumors act like the neuro-endocrine cells from which they were formed and generate all the signals that those types of cells generate. However, there are now so many more of them and they often act in concert, flooding your body with signals such as "Open the blood vessels" or "Empty the Bowels NOW" and in such volume that your body behaves oddly. These actions can be somewhat controlled by some drugs such as Sandostatin but there is only so much you can do.
Finally, B is for Bowels because the tumors regularly cause obstruction and ischemia in the bowels. For me, this has happened four times so far. The tumors have bound up the small and large intestines to the point that nothing can pass and this has lead to dramatic weight loss. The tumors have further impinged on the superior mesenteric vein, preventing blood from getting to the intestines so that they can do their work of digestion.
Of course these last two reasons mean I am continually worried about my bowels. If I am having too much diarrhea, I am frustrated at the bathroom time required and the interruptions to normal life. If I am not having much diarrhea, I begin to worry that I am starting to obstruct again and that I will be back on the OR table for another extended laparotomy. Right now, I am in the later camp and am stressed that things are starting to obstruct and don't know how I will deal with yet another 12hrs of surgery and 8 weeks of recovery.
Bowel obstruction is difficult to diagnose in some respects. There are some standard symptoms but those symptoms could be any of a number of other things as well.
Of course, once it does obstruct, what do you do? Usually it requires some fairly urgent surgery but there aren't many surgeons willing to go into an abdomen with as many adhesions as I have. If I wait too long, I get weak and surviving/recovery from surgery will be all the more strenuous. And, of course, there is the voice in the back of your head saying that maybe if you ignore it, it will just go away.
October is 13 years since my first laprarotomy and I have had them again in 10/2003, 1/2010, 6/2012, and 11/2012. I would really like to get another year or more before having a surgery that takes me out for months.
Once the cancer starts, it grows very slowly, sometimes for ten or twenty years before it actually begins to cause any side affects and I have no idea how long mine had been hidden. What I do know is that it was found in 2001 due to a complete small bowel obstruction and had grown to 1.7cm at that time which about twice the size at which they generally begin to metastasize. My best guess is that the cancer started growing about the same time I started grad school in 1990 and has been growing very slowly since that point.
Once the cancer metastasizes, it usually stays in the abdomen, preferring to affect any nearby tissues. It frequently goes to the liver, and often ends up clustering itself around the mesenteric lymph nodes which is exactly the course my cancer took. When it metastasizes, that is when it actually begins to grow much faster and bigger. No one really knows why (yet) but it may be that the soil where the cancer first sprouts is not very fertile and the places it goes to are much more accommodating. This is why I have had 3-4cm tumors throughout my abdomen, even though the primary was quite small and likely would have stayed that way.
Another reason B is for Bowels is the diarrhea that carcinoid syndrome brings with it. The tumors act like the neuro-endocrine cells from which they were formed and generate all the signals that those types of cells generate. However, there are now so many more of them and they often act in concert, flooding your body with signals such as "Open the blood vessels" or "Empty the Bowels NOW" and in such volume that your body behaves oddly. These actions can be somewhat controlled by some drugs such as Sandostatin but there is only so much you can do.
Finally, B is for Bowels because the tumors regularly cause obstruction and ischemia in the bowels. For me, this has happened four times so far. The tumors have bound up the small and large intestines to the point that nothing can pass and this has lead to dramatic weight loss. The tumors have further impinged on the superior mesenteric vein, preventing blood from getting to the intestines so that they can do their work of digestion.
Of course these last two reasons mean I am continually worried about my bowels. If I am having too much diarrhea, I am frustrated at the bathroom time required and the interruptions to normal life. If I am not having much diarrhea, I begin to worry that I am starting to obstruct again and that I will be back on the OR table for another extended laparotomy. Right now, I am in the later camp and am stressed that things are starting to obstruct and don't know how I will deal with yet another 12hrs of surgery and 8 weeks of recovery.
Bowel obstruction is difficult to diagnose in some respects. There are some standard symptoms but those symptoms could be any of a number of other things as well.
- You will generally have a loss of appetite (Hmmm, that could be my kidney failure).
- You will have abdominal pain (have had that for 13 years from the diarrhea and other).
- You will sometimes throw up indigested food (not having that currently but it sounds like just being sick).
- CT scans work well as long as you can use contrast (can't due to my kidney failure).
Of course, once it does obstruct, what do you do? Usually it requires some fairly urgent surgery but there aren't many surgeons willing to go into an abdomen with as many adhesions as I have. If I wait too long, I get weak and surviving/recovery from surgery will be all the more strenuous. And, of course, there is the voice in the back of your head saying that maybe if you ignore it, it will just go away.
October is 13 years since my first laprarotomy and I have had them again in 10/2003, 1/2010, 6/2012, and 11/2012. I would really like to get another year or more before having a surgery that takes me out for months.
Sunday, May 11, 2014
My ABCs of Cancer: A is for anxiety
Madhulika Sikka wrote a book on the ABCs of breast cancer. Stephanie has encouraged me to write my own ABCs of cancer. If nothing else, it gives me topics for quite a while if I am able to keep up the writing.
So, let's start off with 'A is for Anxiety'. Having or having had cancer puts one in a continual state of anxiety and your life is never the same again. You are continually ruled by the latest lab reports, scans, or blood tests. Your life comes to a complete halt in those days before the test and in the days afterwards as you wait for the results.
I have several friends who have been diagnosed with prostate cancer and their big test is the PSA test. Men begin getting this test later in life and it almost always comes back normal (less than 4) but for all too many people, it crosses that magic line and their life with cancer begins. The funny thing about these tests is that they are not precise. Someone can have a PSA of 3.5 and be in full blown metestatic disease while someone else has a PSA of 6 with only the early stages of cancer. You just never know.
Of course, that is where the major anxiety kicks in. You have the cancer removed by some means and then you watch the PSA level and it hopefully begins to drop. You get more and more confidence as that number continues to drop but your stress level goes through the roof when the time for your next blood test comes around.
My cancer has an extra annoyance that comes with it. One of the standard markers is the Chromogranin-a and there is not a consensus amongst labs about how to perform it. Some labs have a 'good' range of 0-35 with their marker while other labs have 0-5. Furthermore, this blood test is thrown off by commonly used protein pump inhibitors (Nexium, Protonix, Prevacid) that are prescribed for acid reflux and similar disorders.
Other markers are becoming available for me that are less variable and reduce the anxiety some but it is never gone. Even for those friends who have dealt with their cancers and reached the magic 5 year mark, you never know for sure. Another friend passed her 4 year mark in the clear but then the 5 year test showed that she is not through the storm. That is Anxiety with a capitol A.
I know everyone worries about mortal illnesses from time to time but when you have or have had cancer, this worry coms with extra intensity. You almost become a hypochondriac. Every twinge, headache, cramp, upset stomach, or cold makes you worry that the cancer is attacking with a vengeance. It takes days to get a couple of days off of the cancer rollercoaster just to get back in line for the next ride.
I have been on that ride for 12.5 years now and it seems to never stop. The good thing about it is that as long as I am on the ride, I am alive and able to enjoy the view some. There is a thrill to the minor successes when you get off the ride for a while and get to wander around the amusement park, taking in the sunshine and the smells. Something about surviving that last ride can make everything else just a little bit brighter.
So, let's start off with 'A is for Anxiety'. Having or having had cancer puts one in a continual state of anxiety and your life is never the same again. You are continually ruled by the latest lab reports, scans, or blood tests. Your life comes to a complete halt in those days before the test and in the days afterwards as you wait for the results.
I have several friends who have been diagnosed with prostate cancer and their big test is the PSA test. Men begin getting this test later in life and it almost always comes back normal (less than 4) but for all too many people, it crosses that magic line and their life with cancer begins. The funny thing about these tests is that they are not precise. Someone can have a PSA of 3.5 and be in full blown metestatic disease while someone else has a PSA of 6 with only the early stages of cancer. You just never know.
Of course, that is where the major anxiety kicks in. You have the cancer removed by some means and then you watch the PSA level and it hopefully begins to drop. You get more and more confidence as that number continues to drop but your stress level goes through the roof when the time for your next blood test comes around.
My cancer has an extra annoyance that comes with it. One of the standard markers is the Chromogranin-a and there is not a consensus amongst labs about how to perform it. Some labs have a 'good' range of 0-35 with their marker while other labs have 0-5. Furthermore, this blood test is thrown off by commonly used protein pump inhibitors (Nexium, Protonix, Prevacid) that are prescribed for acid reflux and similar disorders.
Other markers are becoming available for me that are less variable and reduce the anxiety some but it is never gone. Even for those friends who have dealt with their cancers and reached the magic 5 year mark, you never know for sure. Another friend passed her 4 year mark in the clear but then the 5 year test showed that she is not through the storm. That is Anxiety with a capitol A.
I know everyone worries about mortal illnesses from time to time but when you have or have had cancer, this worry coms with extra intensity. You almost become a hypochondriac. Every twinge, headache, cramp, upset stomach, or cold makes you worry that the cancer is attacking with a vengeance. It takes days to get a couple of days off of the cancer rollercoaster just to get back in line for the next ride.
I have been on that ride for 12.5 years now and it seems to never stop. The good thing about it is that as long as I am on the ride, I am alive and able to enjoy the view some. There is a thrill to the minor successes when you get off the ride for a while and get to wander around the amusement park, taking in the sunshine and the smells. Something about surviving that last ride can make everything else just a little bit brighter.
Wednesday, April 30, 2014
Second chance for the kidneys
Three weeks ago, I got my stents swapped out and the tumors are really starting to impinge on the ureters. The urologist was able to get some stronger stents inserted but the right ureter is getting harder and harder to manage. He got the stent in but almost had to admit me try and insert it from above. I have little idea of how this is performed and will talk to him about it at my next visit but things are getting worse in that area.
The kidneys have really responded well to the obstruction being removed with my numbers returning to a more normal (for me) level. The big number that you watch for in kidney function is the creatinine level. 18 months ago, I had a truly normal creatinine of 1.1 which then rose to 2.4 12 months ago, 4.2 6 months ago and then was 8.2 prior to my stent swap.
My creatinine has now fallen back to a more tolerable level of 4.4 which puts me at about 18% of full kidney function. My nephrologist plans on holding off on dialysis until I hit about 10% of kidney function or I start to have significant indications of blood poisoning. This could be as soon as 2 months or it could be as long as 6 months as long as I don't have another obstruction or even potentially longer. We will continue to monitor my kidney function as well as the effects of kidney failure for the near future.
There are several effects that we will consider. First, the kidneys manage the level of electrolytes in your blood, most notably, sodium, potassium, and phosphorus. My last blood test shows that these are all in spec so I don't have to do anything special with respect to my diet. Second, the kidneys filter out excess fluid in the blood and then you excrete it in your urine. An indication that this is not functioning is that you begin to have swelling in your extremities and your blood pressure begins to rise. So far, this is not happening for me. Finally, your kidneys stop producing erythropoietin, causing you to become anemic (low red blood cell count).
Living at almost 7,000 feet in Colorado Springs, people tend to have excessively high red blood cell counts and mine should be in the range of 12-13. Mine are 9.2 which is quite low, even for someone at sea level, and we have been trying to stimulate the growth with extra iron supplements but to no avail. So I now have a second thing in common with Lance Armstrong as I am starting to receive synthetic EPO to attempt to boost my red blood counts.
So, getting back to the dialysis I expect to receive, I saw a vascular surgeon this morning to find out the plan for getting access to support dialysis. A few weeks ago, I also had ultrasounds to map my veins and arteries so they would know where and how to create an AV-fistula in my arm to provide dialysis access. As it happens, I have 'miniscule' veins according the the vascular surgeon and this means that they are unable to create a fistula.
The backup option is to insert a graft between the artery in your arm and the larger vein in your armpit. This is not a preferred solution because grafts have a greater chance of infection and have other complications compared to a fistula but it is our best option. They will insert a tube of PFTE (Teflon, so I will really be slick!!!) between the artery and vein in my upper left arm. Recovery will be minimal and the surgeon says, if it hurts, don't do it. I will still take a couple of weeks off of hockey but will be back on the ice in June.
So, May 9th, I will have my second surgical procedure in a month to put in the graft. This usually takes less than 90 minutes and they will perform it with two blocks (arm and shoulder) along with some twilight sedation to avoid carcinoid crisis. I will get some percocet for the pain but plan on being back in the office on Monday the 12th after making sure my kids give my wife a proper mother's day!
The kidneys have really responded well to the obstruction being removed with my numbers returning to a more normal (for me) level. The big number that you watch for in kidney function is the creatinine level. 18 months ago, I had a truly normal creatinine of 1.1 which then rose to 2.4 12 months ago, 4.2 6 months ago and then was 8.2 prior to my stent swap.
My creatinine has now fallen back to a more tolerable level of 4.4 which puts me at about 18% of full kidney function. My nephrologist plans on holding off on dialysis until I hit about 10% of kidney function or I start to have significant indications of blood poisoning. This could be as soon as 2 months or it could be as long as 6 months as long as I don't have another obstruction or even potentially longer. We will continue to monitor my kidney function as well as the effects of kidney failure for the near future.
There are several effects that we will consider. First, the kidneys manage the level of electrolytes in your blood, most notably, sodium, potassium, and phosphorus. My last blood test shows that these are all in spec so I don't have to do anything special with respect to my diet. Second, the kidneys filter out excess fluid in the blood and then you excrete it in your urine. An indication that this is not functioning is that you begin to have swelling in your extremities and your blood pressure begins to rise. So far, this is not happening for me. Finally, your kidneys stop producing erythropoietin, causing you to become anemic (low red blood cell count).
Living at almost 7,000 feet in Colorado Springs, people tend to have excessively high red blood cell counts and mine should be in the range of 12-13. Mine are 9.2 which is quite low, even for someone at sea level, and we have been trying to stimulate the growth with extra iron supplements but to no avail. So I now have a second thing in common with Lance Armstrong as I am starting to receive synthetic EPO to attempt to boost my red blood counts.
So, getting back to the dialysis I expect to receive, I saw a vascular surgeon this morning to find out the plan for getting access to support dialysis. A few weeks ago, I also had ultrasounds to map my veins and arteries so they would know where and how to create an AV-fistula in my arm to provide dialysis access. As it happens, I have 'miniscule' veins according the the vascular surgeon and this means that they are unable to create a fistula.
The backup option is to insert a graft between the artery in your arm and the larger vein in your armpit. This is not a preferred solution because grafts have a greater chance of infection and have other complications compared to a fistula but it is our best option. They will insert a tube of PFTE (Teflon, so I will really be slick!!!) between the artery and vein in my upper left arm. Recovery will be minimal and the surgeon says, if it hurts, don't do it. I will still take a couple of weeks off of hockey but will be back on the ice in June.
So, May 9th, I will have my second surgical procedure in a month to put in the graft. This usually takes less than 90 minutes and they will perform it with two blocks (arm and shoulder) along with some twilight sedation to avoid carcinoid crisis. I will get some percocet for the pain but plan on being back in the office on Monday the 12th after making sure my kids give my wife a proper mother's day!
Wednesday, April 9, 2014
New ureteral stents may give kidneys some more time.
Right after my appointment with the nephrologist last Thursday, I was able to set up an appointment with the urologist on Friday and he scheduled me for a bilateral stent swap today. Everything went well with no carcinoid crisis but the tumors are really starting to impinge on the ureters. From the ultrasound that the nephrologist ordered, it looked like the right stent may not have been working very well.
That is exactly what the urologist noted during the swap. He inserted thicker and stronger stents to try to avoid them getting crushed but was almost unable to get the right stent in place due to the compression from the tumors. Had things not worked out, he may have needed to admit me and attempt to insert them from above. If this failed, the next step is to put in a drain directly from the kidney to a tube in my back. This is a step I don't want to take as it will certainly cause me to stop many activities such as hockey.
But, the stents are in place. Hopefully they will relieve the stress on the kidneys and they will recover enough to put of dialysis for a while. In another 6-9 months, we will need to attempt another replacement as the stents tend to encrust and start to obstruct. Until then, hopefully my kidneys will recover some and we can make a plan on how to insert new stents with a minimum of intrusion.
That is exactly what the urologist noted during the swap. He inserted thicker and stronger stents to try to avoid them getting crushed but was almost unable to get the right stent in place due to the compression from the tumors. Had things not worked out, he may have needed to admit me and attempt to insert them from above. If this failed, the next step is to put in a drain directly from the kidney to a tube in my back. This is a step I don't want to take as it will certainly cause me to stop many activities such as hockey.
But, the stents are in place. Hopefully they will relieve the stress on the kidneys and they will recover enough to put of dialysis for a while. In another 6-9 months, we will need to attempt another replacement as the stents tend to encrust and start to obstruct. Until then, hopefully my kidneys will recover some and we can make a plan on how to insert new stents with a minimum of intrusion.
Thursday, April 3, 2014
More radiation and less kidney
In just 10 days, Stephanie and I are heading back to New Orleans for my second round of I131 treatment. My scans seem to imply that treatment still is viable and Dr. Campeau has had several patients who have seen more response from further treatments so we are giving it another swing. We fly out Tuesday the 15th, go straight to an appointment with a doctor and then I get admitted on the 16th for more radiation. I know what I am getting into this time and have a cheap Chromebook that I will be using to watch movies, netflix, and just keep in touch.
The more worrisome side of the house are my kidneys. As you may recall, my last two surgeries addressed tumors that were wrapped around my ureters. This resulted in my kidneys getting backed up and putting strain on them. I got stents inserted but they have a bad habit of clogging and causing further strain on the kidneys. I am now in stage 5 chronic kidney disease and that means dialysis is coming and it is coming soon.
There are two types of dialysis but I am only eligible for hemodialysis where the blood is filtered through a machine and then put back. To get to the point where I can do dialysis, I need to have a fistula installed in my arm, short circuiting a vein to an artery. I will be having a consult to find out when I can get this done and it will still be several months after that before it will be healed enough to be used. If my kidneys fail completely before that happens, they will need to put a catheter in my chest to be used for the dialysis in the short term.
These new developments really suck. Hemodialysis is typically done three days a week at a dialysis facility and takes about 4hrs per treatment. This starts to really interfere with life in a major fashion. Two can be done on workdays but that really makes getting my 40 hours per week hard. Of course, that is assuming I do dialysis one day on the weekend and that causes significant problems with camping, skiing, and any sort of activity.
Home dialysis is possible but Stephanie will need to be trained in placing the needles so that we can make this happen. The machine is about 80 pounds and I would be connected to it every night for about 2-2.5hrs. This makes everything a bit more tolerable but it still is a significant inconvenience to work and play.
I am not doing well. I feel as if I am on the hairy edge of an emotional breakdown all the time. The need for dialysis has hit me hard. I know there are many people who deal with life on dialysis but this is just piling on. There are people who deal with chronic cancer, people who deal with colostomies, people who deal with chronic diarrhea but I am tired of dealing with all of it.
I am not giving up and I am not stopping fighting but it is getting harder all the time. Your support is needed and it is appreciated.
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