A
Alan in Cali
Sorry if this is duplicative of my earlier post but i need some advice on what records i need, what facillities to contact and how many in order to obtain treatment for my dad. Dad's porcine valve is 16 years old and is breaking down.
His is a complicated case because he has hepatocellular carcinoma (liver cancer) and "Childs Class A" cirrohosis. Both the carcinoma and cirrohosis were caused by hepatitis C (which Dad caught after an emergency transfusion in the mid 1970s).
The case is further complicated by scarring from his first AVR. The first AVR occured in 1990. After replacing his original bicuspid valve, dad suffered from pericarditis, which required open pericardial drainage and a partial pericardectomy. If that is not enough, following the pericardectomy he developed an absess behind his heart which required a third surgery (all in the space of about a year)(all of this was documented in a new england journal of medicine case study - a dubiouis honor).
We knew that a redo of the porcine valve was inevitble but always thought a second surgery could resolve it. Unfortuantely the surgeon here at UCSF has refused to operate because of the risks. We are fully aware of the risks but something needs to be done because not doing anything will lead to congestive heart failure.
Worth noting is that Dad's liver doc appears to disagree with the surgeon and he has had someone contact a surgeon at MGH (we haven't gotten a resposne). He told Dad it would be better for him to have the redo done soon because the longer he waits the greater the impact on Dad's place on the liver transplant list. He thinks that Dad is a fighter and that he's got a better chance than the surgeon concluded.
Dad's liver issues are stable. The cancer is "dormant" and his liver has been described as "highly compensated". The liver team has been very helpful and they are actually gathering records for me to shop around. Dad's cardio is not enthusiastic about our seeking a second opinion and seems satisfied with the diagnosis. We are not.
Dad's recently had an angio which showed normal coronary arteries, mildly elevated right-sided heart pressures "with a wedge pressure of 15mmHg". what does that mean?
His LVEDVI was in the normal range. (what does that mean?)
His "transvalvular gradients" were 86mmhg and 47mmhg. (how bad is that)
His bp (with meds) hovers in the 110 to 120 range (for systolic). His diastolic in the right arm is 50. In the left its been running around 40.
The cardio reviewed the echo herself and said he had normal biventricular systolic function,, mild to moderate left atrial enlargement. The echo team thought his aortic insufficiency was moderate but his cardio doc believes it to be severe.
Based on my Dad's other conditions the surgeon told him (basically) to enjoy what time he has left. According to the surgeon, the risks were high based on his known chirrosis, his prior pericardectomy (which they believe caused significant mediastinal scarring), and he is a high risk for bleeding because of chronic thrombocytopenia and an elevated INR.
Based on what i've been reading on this wonderful board and various journals, scarring and liver disease, while rasing the morbidity risk, should not preclude the surgical option (after all that's the patient's choice, right?).
I've contacted a noted valve surgeon at Sequoia Hospital in Redwood city for a second opinion (the doc is known out here as the valve g-d). I've also contacted the cleveland clinic and am waiting for a response from their nurse cooordinator on what i need to get in order to obtain a second opinion (they can do it on-line).
I'm also interested in contacting surgeons at Mass General, the Mayo clinic, and anywhere else that you folks would reccomend.
Obviously, we are overwhelmed and frightened. Dad is extremely depressed, short of breath. His appetite is not what it was and he's losing weight (probably due to strict diet, strict limits on fluid intake (1.5 liters a day) and
the diuretics. He's been advised to wait until a percutaneous valve becomes available (maybe October - which is a long time).
I know there is a lot of info here. We don't know what to make of the data. I don;t know how long my dad can wait based on the diagnosis of severe AI.
A lot of these numbers are gobblydeegook to me and i'd appreciate some translation. Am I overdoing it by contacting all these hospitals? Should we be flying around trying to get other opinions? What records should we have to shop around?
Right now I've got the echo report, the cardio's report from August 3 and an earlier report from June. I'm trying to get the echo report from Decemebr as wells as the actual films(?). I'm also trying to get the angio report as well as the video. (No luck on either of these yet).
What else do I need? How can I expedite things. Should I be calling all these hospitals? How fast should we moving? Does anyone have any thoughts on anything I wrote about? I'd be particularly interested in hearing from "Nancy" as her posts indicate that her hubby has impaired liver function and quite a bit of scarring.
I's sorry about the length and if this is repetitive but I'd do just about anything to save my Dad and you folks seem to have a lot of ideas.
His is a complicated case because he has hepatocellular carcinoma (liver cancer) and "Childs Class A" cirrohosis. Both the carcinoma and cirrohosis were caused by hepatitis C (which Dad caught after an emergency transfusion in the mid 1970s).
The case is further complicated by scarring from his first AVR. The first AVR occured in 1990. After replacing his original bicuspid valve, dad suffered from pericarditis, which required open pericardial drainage and a partial pericardectomy. If that is not enough, following the pericardectomy he developed an absess behind his heart which required a third surgery (all in the space of about a year)(all of this was documented in a new england journal of medicine case study - a dubiouis honor).
We knew that a redo of the porcine valve was inevitble but always thought a second surgery could resolve it. Unfortuantely the surgeon here at UCSF has refused to operate because of the risks. We are fully aware of the risks but something needs to be done because not doing anything will lead to congestive heart failure.
Worth noting is that Dad's liver doc appears to disagree with the surgeon and he has had someone contact a surgeon at MGH (we haven't gotten a resposne). He told Dad it would be better for him to have the redo done soon because the longer he waits the greater the impact on Dad's place on the liver transplant list. He thinks that Dad is a fighter and that he's got a better chance than the surgeon concluded.
Dad's liver issues are stable. The cancer is "dormant" and his liver has been described as "highly compensated". The liver team has been very helpful and they are actually gathering records for me to shop around. Dad's cardio is not enthusiastic about our seeking a second opinion and seems satisfied with the diagnosis. We are not.
Dad's recently had an angio which showed normal coronary arteries, mildly elevated right-sided heart pressures "with a wedge pressure of 15mmHg". what does that mean?
His LVEDVI was in the normal range. (what does that mean?)
His "transvalvular gradients" were 86mmhg and 47mmhg. (how bad is that)
His bp (with meds) hovers in the 110 to 120 range (for systolic). His diastolic in the right arm is 50. In the left its been running around 40.
The cardio reviewed the echo herself and said he had normal biventricular systolic function,, mild to moderate left atrial enlargement. The echo team thought his aortic insufficiency was moderate but his cardio doc believes it to be severe.
Based on my Dad's other conditions the surgeon told him (basically) to enjoy what time he has left. According to the surgeon, the risks were high based on his known chirrosis, his prior pericardectomy (which they believe caused significant mediastinal scarring), and he is a high risk for bleeding because of chronic thrombocytopenia and an elevated INR.
Based on what i've been reading on this wonderful board and various journals, scarring and liver disease, while rasing the morbidity risk, should not preclude the surgical option (after all that's the patient's choice, right?).
I've contacted a noted valve surgeon at Sequoia Hospital in Redwood city for a second opinion (the doc is known out here as the valve g-d). I've also contacted the cleveland clinic and am waiting for a response from their nurse cooordinator on what i need to get in order to obtain a second opinion (they can do it on-line).
I'm also interested in contacting surgeons at Mass General, the Mayo clinic, and anywhere else that you folks would reccomend.
Obviously, we are overwhelmed and frightened. Dad is extremely depressed, short of breath. His appetite is not what it was and he's losing weight (probably due to strict diet, strict limits on fluid intake (1.5 liters a day) and
the diuretics. He's been advised to wait until a percutaneous valve becomes available (maybe October - which is a long time).
I know there is a lot of info here. We don't know what to make of the data. I don;t know how long my dad can wait based on the diagnosis of severe AI.
A lot of these numbers are gobblydeegook to me and i'd appreciate some translation. Am I overdoing it by contacting all these hospitals? Should we be flying around trying to get other opinions? What records should we have to shop around?
Right now I've got the echo report, the cardio's report from August 3 and an earlier report from June. I'm trying to get the echo report from Decemebr as wells as the actual films(?). I'm also trying to get the angio report as well as the video. (No luck on either of these yet).
What else do I need? How can I expedite things. Should I be calling all these hospitals? How fast should we moving? Does anyone have any thoughts on anything I wrote about? I'd be particularly interested in hearing from "Nancy" as her posts indicate that her hubby has impaired liver function and quite a bit of scarring.
I's sorry about the length and if this is repetitive but I'd do just about anything to save my Dad and you folks seem to have a lot of ideas.
