Here’s some more specifics about my heart condition and where I’m headed from here. My hospital file has the official diagnosis currently as Congestive Heart Failure. At 45, I’m a bit young for such a lofty diagnosis, but then this particular classification is really just a catch-all for a lot of different issues and doesn’t adequately explain my situation. Sufficed to say, my bid for the summit of Everest is on hold for a while (heck, my bid for the second floor of the house is in question at the moment.)
To really understand my predicament, you have to go back in my history a bit to the late seventies when I underwent ten weeks of mantel radiation for my Hodgkin’s disease. Although radiation therapy had been in use in one form or another for over eighty years at the time, many of the long term effects were still not fully understood – and, to be honest with you, when you’re fighting to rid yourself of cancer, the long term effects are not foremost in you mind. As it turns out, it is not uncommon for radiation patients to later develop a number of medical problems including a hardening of both the pericardium (the sac around the heart,) and the heart muscle itself. As of right now, we know that I have a fairly significant hardening of the pericardium but the extent to which my heart itself has been effected remains to be seen.
What this means is that the heart is able to pump out, but the stiffened pericardium prevents it from adequately expanding to refill. So the blood leaves the heart under sufficient pressure, but the restriction to its expanding means there is a back pressure building on the return side. At the capillary level, the red blood cells are being pushed into the tissues of my organs, but meeting with a backlog of unoxiginated cells waiting for the “pull” of the expanding heart to haul them back to the heart and ultimately the lungs. The tissues don’t get the oxygen they need and begin to degrade. Unchecked and this would no doubt ultimately lead to major organ failure – though I’m a ways from that at the moment. In fact, other than my liver, my other organs seem to be working fine – including my questionable kidneys (knock on wood.)
So the question now is what can be done. Next Tuesday, I’m scheduled for right and left heart catheterizations. They’ll go into the heart with sensors (via the neck for the right side and via the groin for the left side,) and take pressure readings as well as inject dye and watch it on the monitors. This will help determine exactly what’s going on and where the problems are. If it turns out that the pericardium is the primary culprit, then the simplest solution would be to simply cut a slit in the sac and let it open up a bit – thereby allowing the heart to expand normally. As I understand it, it is also possible for them to remove the pericardium completely – though I’m not clear on the particulars as to how and why this procedure would be undertaken. For now, I’m just happy to have a diagnosis that fits all the symptoms and doesn’t involve a return of either of my previous cancers. As soon as I know more, it will be posted here.
Be well.
Chris
Sunday, March 29, 2009
Wednesday, March 25, 2009
Overdue Update
Hey All….
It’s been a long time – far too long.
The following is an update on my current medical situation for those who might be interested. If you’d like to find more timely updates on what I’m doing, feel free to look me up on Facebook under Christopher Hofmann – you’ll find Mel and Zoe there as well (Noah is not old enough yet.)
OK, to truly understand the medical situation as it stands today, you need a little history. Some of you know this story and some do not. Most of you know a little. I won’t bore you with a lot of detail – here are the highlights.
In the fall of 1978 at the age of 14 I was rushed to Children’s Hospital in Boston. A large mass had appeared on an x-ray and my family doctor had no explanation. Up until then I had been a fairly healthy kid – though, now that I look back on it, I can tell you that ADD and anxiety were a very large part of my early years but no one (especially me) had any idea what that meant. I hated school so much that I’d make myself psychosomatically ill in order to avoid the torture that started with getting on the bus. Anyway, back to 1979. I ended up being diagnosed with a rare form of Hodgkin’s disease. It had progressed quite far and I had a large tumor growing around my windpipe and blocking all blood flow out of my head (I had swollen up so much it was hard to open my eyes.) Children’s ran me through some radiation and three surgeries in three weeks and then set me on a course of ten weeks of radiation therapy. At the end of ten weeks, I was declared in full remission and haven’t had issue with Hodgkin’s to date (some 30 plus years later.)
In the fall of 1986 I started to jaundice and ended up contacting my oncologist who had by now moved to Boston’s Floating Hospital for Children, a part of Tuft’s New England Medical Center. He ran me though an ultrasound that revealed a blockage in my primary biliary duct. Ultimately, I was diagnosed with a Klatskin Tumor – a fibroid tumor likely caused by the radiation of eight years prior. I waited until the evening of January 24th for a liver transplant. I cam out of surgery on the 25th – Super Bowl Sunday (the Giants won over the Broncos.) Despite a few minor setbacks, I’ve had a relatively healthy liver for the last 22 years.
In the fall of…..I’m sensing a trend here – no wonder I hate autumn. Anyway, at the end of summer in 2005 when I was scheduled to finally leave Massachusetts and join my family in South Carolina, I took ill and was once again admitted to Tuft’s with some inexplicable symptoms. After a three week delay, Mel and I finally left Boston. I had been diagnosed with Type I Membranoproliferative glomerulonephritis. Essentially this is acute kidney failure. There had also been a tentative diagnosis of Constrictive Pericarditis (or maybe Restrictive Cardiomyopathy – they weren’t quite sure which.) When I finially got settled in SC, I got started seeing a series of specialists at the Medical University of South Carolina. We mostly concentrated on getting my kidney function back to normal which has been the case for the last 18 month or so. The heart issue was really just a nuisance and we decided not to deal with it until the symptoms became impactful on my daily life.
And that brings up to date (thankfully it’s not the fall!)
So…around the first of the year I began feeling cruddy and have some of the same symptoms that I experienced prior to my transplant. My liver doctor and I were both in agreement that there was most likely once again a blockage in my liver. Over the last a few months I’ve undergone a number of tests (including blood work, x-rays, MRI, CT scan, PTC, and a biopsy.) All of these have basically yielded no information – there is no blockage; no apparent return of either my Hodgkin’s or Klatskin tumors; no viral or bacterial infections, and no acute rejection of my transplant. In the mean time, my heart function has progressively diminished. I have almost no energy and become quite light headed with even light exertion. Today I saw the Cardiologist. He believes that my liver problems and heart problems are most likely caused by a back pressure issue stemming from my diminished heart function. In his opinion, there is too much pressure on the venous side of the circulatory system and that is keeping blood flow from properly oxygenating my organs (specifically my liver.) In two weeks I’ll undergo a right and left heart catheterization. This should yield some more definitive information about exactly what’s happening inside my heart and arteries.
So that brings us up to date. Though I don’t cherish the idea of heart surgery, I’m glad to at least have a more concrete answer. And anything is better than having to deal with another unpredictable cancer again. Keep your fingers crossed. I’ll let you know how it turns out.
Be well.
Chris
It’s been a long time – far too long.
The following is an update on my current medical situation for those who might be interested. If you’d like to find more timely updates on what I’m doing, feel free to look me up on Facebook under Christopher Hofmann – you’ll find Mel and Zoe there as well (Noah is not old enough yet.)
OK, to truly understand the medical situation as it stands today, you need a little history. Some of you know this story and some do not. Most of you know a little. I won’t bore you with a lot of detail – here are the highlights.
In the fall of 1978 at the age of 14 I was rushed to Children’s Hospital in Boston. A large mass had appeared on an x-ray and my family doctor had no explanation. Up until then I had been a fairly healthy kid – though, now that I look back on it, I can tell you that ADD and anxiety were a very large part of my early years but no one (especially me) had any idea what that meant. I hated school so much that I’d make myself psychosomatically ill in order to avoid the torture that started with getting on the bus. Anyway, back to 1979. I ended up being diagnosed with a rare form of Hodgkin’s disease. It had progressed quite far and I had a large tumor growing around my windpipe and blocking all blood flow out of my head (I had swollen up so much it was hard to open my eyes.) Children’s ran me through some radiation and three surgeries in three weeks and then set me on a course of ten weeks of radiation therapy. At the end of ten weeks, I was declared in full remission and haven’t had issue with Hodgkin’s to date (some 30 plus years later.)
In the fall of 1986 I started to jaundice and ended up contacting my oncologist who had by now moved to Boston’s Floating Hospital for Children, a part of Tuft’s New England Medical Center. He ran me though an ultrasound that revealed a blockage in my primary biliary duct. Ultimately, I was diagnosed with a Klatskin Tumor – a fibroid tumor likely caused by the radiation of eight years prior. I waited until the evening of January 24th for a liver transplant. I cam out of surgery on the 25th – Super Bowl Sunday (the Giants won over the Broncos.) Despite a few minor setbacks, I’ve had a relatively healthy liver for the last 22 years.
In the fall of…..I’m sensing a trend here – no wonder I hate autumn. Anyway, at the end of summer in 2005 when I was scheduled to finally leave Massachusetts and join my family in South Carolina, I took ill and was once again admitted to Tuft’s with some inexplicable symptoms. After a three week delay, Mel and I finally left Boston. I had been diagnosed with Type I Membranoproliferative glomerulonephritis. Essentially this is acute kidney failure. There had also been a tentative diagnosis of Constrictive Pericarditis (or maybe Restrictive Cardiomyopathy – they weren’t quite sure which.) When I finially got settled in SC, I got started seeing a series of specialists at the Medical University of South Carolina. We mostly concentrated on getting my kidney function back to normal which has been the case for the last 18 month or so. The heart issue was really just a nuisance and we decided not to deal with it until the symptoms became impactful on my daily life.
And that brings up to date (thankfully it’s not the fall!)
So…around the first of the year I began feeling cruddy and have some of the same symptoms that I experienced prior to my transplant. My liver doctor and I were both in agreement that there was most likely once again a blockage in my liver. Over the last a few months I’ve undergone a number of tests (including blood work, x-rays, MRI, CT scan, PTC, and a biopsy.) All of these have basically yielded no information – there is no blockage; no apparent return of either my Hodgkin’s or Klatskin tumors; no viral or bacterial infections, and no acute rejection of my transplant. In the mean time, my heart function has progressively diminished. I have almost no energy and become quite light headed with even light exertion. Today I saw the Cardiologist. He believes that my liver problems and heart problems are most likely caused by a back pressure issue stemming from my diminished heart function. In his opinion, there is too much pressure on the venous side of the circulatory system and that is keeping blood flow from properly oxygenating my organs (specifically my liver.) In two weeks I’ll undergo a right and left heart catheterization. This should yield some more definitive information about exactly what’s happening inside my heart and arteries.
So that brings us up to date. Though I don’t cherish the idea of heart surgery, I’m glad to at least have a more concrete answer. And anything is better than having to deal with another unpredictable cancer again. Keep your fingers crossed. I’ll let you know how it turns out.
Be well.
Chris
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