Aa
very low today
I no longer know what I am being treated and tested for since 6 weeks ago when ascites were diagnosed.
The ascites have been the ongoing mystery ..and themain focus. Now they have moved into the chest cavity and are affecting my left lug apparently and the diuretics are now taking a toll on the kidneys. Meanwhile I feel like a ticking time bomb. Almost inevitable when your own and only doctor says "I'm worried" .
The only recommendation he can make now before things escalate any further is a TIPS procedure. Once he gets the okay from the experts ?? Muscle wasting is now real issue no matter how much I eat, he says it's not cancer .
meanwhile the portal vein hypertension continues to create more problems . What could he possibly be waiting to see happen ? He said its pk to take a 4 day family trip to Nevada but is concerned about the altitude and that we should make sure there is a medical facility nearby.
I would really appreciate to hear from anyone who has had a TIPS procedure prior to an internal hemorrhage or coma.
I am so weak now I need a cane for walking. it's all happening so fast !
.
The ascites have been the ongoing mystery ..and themain focus. Now they have moved into the chest cavity and are affecting my left lug apparently and the diuretics are now taking a toll on the kidneys. Meanwhile I feel like a ticking time bomb. Almost inevitable when your own and only doctor says "I'm worried" .
The only recommendation he can make now before things escalate any further is a TIPS procedure. Once he gets the okay from the experts ?? Muscle wasting is now real issue no matter how much I eat, he says it's not cancer .
meanwhile the portal vein hypertension continues to create more problems . What could he possibly be waiting to see happen ? He said its pk to take a 4 day family trip to Nevada but is concerned about the altitude and that we should make sure there is a medical facility nearby.
I would really appreciate to hear from anyone who has had a TIPS procedure prior to an internal hemorrhage or coma.
I am so weak now I need a cane for walking. it's all happening so fast !
.
I don't think I can come on Tuesday but my offer to take you to the ER still stands.
I don't know why doctors have to be such cowboys (no disrespect for cowboys intended). I certainly would not profess to be an expert if I were not - especially if someone's life is at stake
Gastroenterology (MeSH heading)[1] is a branch of medicine focused on the digestive system and its disorders. The term is a combination of three Ancient Greek words γαστήρ gaster (gen.: gastros) "stomach", ἔντερον enteron "intestine", and λόγος logos "reason". In the United States, Gastroenterology is an Internal Medicine Subspecialty certified by the American Board of Internal Medicine (ABIM) and the American Osteopathic Board of Internal Medicine (AOBIM).
Diseases affecting the gastrointestinal tract, which includes the organs from mouth to anus, along the alimentary canal, are the focus of this specialty. Physicians practicing in this field of medicine are called gastroenterologists. They have usually completed the eight years of pre-medical and medical education, the year-long internship (if this is not a part of the residency), three years of an internal medicine residency, and two to three years in the gastroenterology fellowship. Some gastroenterology trainees will complete a "fourth-year" (although this is often their 7th year of graduate medical education) in Transplant Hepatology, Advanced Endoscopy, Inflammatory Bowel Disease (IBD), motility or other topics.
Gastroenterology is not the same as colorectal or hepatobiliary surgery, which are specialty branches of general surgery.
Hepatology, or hepatobiliary medicine, encompasses the study of the liver, pancreas, and biliary tree, and is traditionally considered a sub-specialty.
I did learn, in advocating for my own treatment, that in SF, hepatologists are the "transplant doctors" and the GI docs think that they can cover things up until the point that one is listed for transplant and your doc's attitude is one that I encountered as well. Certainly defensive.
So, after you get stabilized, Rox, you need to be "listed" in order to receive the kind of care from a hepatologist that you need
Of course, they may call in a hepatologist to the ER when you go in any case
As to all your medical records, Kaiser docs have access to everything from their computers - all your medical history - but what I do is keep everything in a big binder sorted chronologically. That helps me to organize and evaluate past test results, focus my questions on matters that are most important and to try to discern a clear pattern of action (The Plan!) moving forward. There are medical records available to your docs that are not available to you on your Patient Portal. You can request copies of those reports or I have been known to just get up and lean over my doc's shoulder while he is reviewing them
(Ha! they probably hate that!)
PM me and I will give you my phone number
Happy to hear your kids will be with you
I don't know why doctors have to be such cowboys (no disrespect for cowboys intended). I certainly would not profess to be an expert if I were not - especially if someone's life is at stake
Gastroenterology (MeSH heading)[1] is a branch of medicine focused on the digestive system and its disorders. The term is a combination of three Ancient Greek words γαστήρ gaster (gen.: gastros) "stomach", ἔντερον enteron "intestine", and λόγος logos "reason". In the United States, Gastroenterology is an Internal Medicine Subspecialty certified by the American Board of Internal Medicine (ABIM) and the American Osteopathic Board of Internal Medicine (AOBIM).
Diseases affecting the gastrointestinal tract, which includes the organs from mouth to anus, along the alimentary canal, are the focus of this specialty. Physicians practicing in this field of medicine are called gastroenterologists. They have usually completed the eight years of pre-medical and medical education, the year-long internship (if this is not a part of the residency), three years of an internal medicine residency, and two to three years in the gastroenterology fellowship. Some gastroenterology trainees will complete a "fourth-year" (although this is often their 7th year of graduate medical education) in Transplant Hepatology, Advanced Endoscopy, Inflammatory Bowel Disease (IBD), motility or other topics.
Gastroenterology is not the same as colorectal or hepatobiliary surgery, which are specialty branches of general surgery.
Hepatology, or hepatobiliary medicine, encompasses the study of the liver, pancreas, and biliary tree, and is traditionally considered a sub-specialty.
I did learn, in advocating for my own treatment, that in SF, hepatologists are the "transplant doctors" and the GI docs think that they can cover things up until the point that one is listed for transplant and your doc's attitude is one that I encountered as well. Certainly defensive.
So, after you get stabilized, Rox, you need to be "listed" in order to receive the kind of care from a hepatologist that you need
Of course, they may call in a hepatologist to the ER when you go in any case
As to all your medical records, Kaiser docs have access to everything from their computers - all your medical history - but what I do is keep everything in a big binder sorted chronologically. That helps me to organize and evaluate past test results, focus my questions on matters that are most important and to try to discern a clear pattern of action (The Plan!) moving forward. There are medical records available to your docs that are not available to you on your Patient Portal. You can request copies of those reports or I have been known to just get up and lean over my doc's shoulder while he is reviewing them
(Ha! they probably hate that!)
PM me and I will give you my phone number
Happy to hear your kids will be with you
Here are two links I want to share with you:
The first is the link to medhelp's Cirrhosis of the Liver forum. There you will find other medhelp members who have Cirrhosis:
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
The second is a link to a journal entry in my journals. It has a link to a MELD score calculator:
http://www.medhelp.org/user_journals/show/327457/Calculating-MELD-Score
Keep us posted on how you're doing.
Advocate1955
The first is the link to medhelp's Cirrhosis of the Liver forum. There you will find other medhelp members who have Cirrhosis:
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
The second is a link to a journal entry in my journals. It has a link to a MELD score calculator:
http://www.medhelp.org/user_journals/show/327457/Calculating-MELD-Score
Keep us posted on how you're doing.
Advocate1955
"How Can I trust this decision in such a delicate procedure at this juncture ? it's as though he knows I have no other choice but to go with his recommendation." He's not a hepatologist, so you really can't trust his decision, since you have Cirrhosis. He doesn't have the expertise or experience to treat your ascites and manage your care.
"a week or so ago after being obviously fed up with my request to rfer me to a liver specialist for a second opinion he simply responded I "am" a liver specialist." If he isn't a hepatologist, then he isn't a liver specialist. Only a hepatologist has the specialized training necessary to manage the care of a person with advanced Cirrhosis. Your liver is decompensating or is decompensated, and you need a hepatologist to manage your care.
"when I asked Dr Fox if I do indeed have decompensated cirrhosis, he answered, somewhere in between comp and decomp, about stage 4 liver disease. this has nothing to do with the MELD score." Yes, you are stage 4, Cirrhosis, and you are past beginning Cirrhosis, somewhere in the middle area of Cirrhosis. He may be right you are somewhere between compensated and decompensated, but I believe that with your symptoms, your liver is either decompensating or is decompensated. Only a qualified hepatologist can specifically say exactly what stage of Cirrhosis you have, but you are sick and you are going to get sicker.
"What are my MELD scores I asked (I am going to teach myself how to calculate them ) one week he said 8, the next week he said 11. So in some ways I know that is good news." Well, it's good news that your MELD isn't higher than 11. But it's not good news that your MELD score went from 8 (compensated) to 11 (on the edge of decompensation) in a few short weeks. There are on-line calculators that you can use to calculate your MELD based on your most recent labwork.
Your doctor apparently isn't taking the decline in the health of your liver seriously, and he apparently is unwilling to refer you to a hepatologist. You will have to be your own advocate, learn what you can about advanced Cirrhosis, and get yourself in to a hepatologist.
Advocate1955
"a week or so ago after being obviously fed up with my request to rfer me to a liver specialist for a second opinion he simply responded I "am" a liver specialist." If he isn't a hepatologist, then he isn't a liver specialist. Only a hepatologist has the specialized training necessary to manage the care of a person with advanced Cirrhosis. Your liver is decompensating or is decompensated, and you need a hepatologist to manage your care.
"when I asked Dr Fox if I do indeed have decompensated cirrhosis, he answered, somewhere in between comp and decomp, about stage 4 liver disease. this has nothing to do with the MELD score." Yes, you are stage 4, Cirrhosis, and you are past beginning Cirrhosis, somewhere in the middle area of Cirrhosis. He may be right you are somewhere between compensated and decompensated, but I believe that with your symptoms, your liver is either decompensating or is decompensated. Only a qualified hepatologist can specifically say exactly what stage of Cirrhosis you have, but you are sick and you are going to get sicker.
"What are my MELD scores I asked (I am going to teach myself how to calculate them ) one week he said 8, the next week he said 11. So in some ways I know that is good news." Well, it's good news that your MELD isn't higher than 11. But it's not good news that your MELD score went from 8 (compensated) to 11 (on the edge of decompensation) in a few short weeks. There are on-line calculators that you can use to calculate your MELD based on your most recent labwork.
Your doctor apparently isn't taking the decline in the health of your liver seriously, and he apparently is unwilling to refer you to a hepatologist. You will have to be your own advocate, learn what you can about advanced Cirrhosis, and get yourself in to a hepatologist.
Advocate1955
Thank so you very kindly for this input. Always extremely valuable in my situation. I am in the precess of responding to hepcandme via email .
in response to you suggestion:
be able to assess the status of your liver and develop an appropriate care plan will be able to assess the status of your liver and develop an appropriate care plan (diet, nutrition, medication) for your situation. I am so on top of tht even with the changing labs day to day, which lately "I" request, am quick to interpret and ask the Dr, what do we do next. He says over and over..we need to get the ascites under control and they are not responding to diuretics, thus the next step is to go for the TIPS procedure. How Can I trust this decision in such a delicate procedure at this juncture ? it's as though he knows I have no other choice but to go with his recommendation.
a week or so ago after being obviously fed up with my request to rfer me to a liver specialist for a second opinion he simply responded I "am" a liver specialist.
as things stand now I meet with the Interventional radiologist on Wed morning to make the preparations and ask about the risks and advantage s involved. I am not opposed to it from what I have learned it may be the only help there is now, but knowing the Dr Fox is sitting around in the background waiting for what he considers important events in his own time, really rattles me. Anxiety and any kind of procedure under the circumstances is a real concern of mine now., but anything can happen between now and then.
One of which I hope to be that I will be sitting across from a liver specialist or hepatologist and feeling secure again. I don't know that Kaiser has any in the northern bay area. This is my primary area of research for today.
again, the sodium restriction has been put in place from the start and I have been adhering to it. 100%. The recent decline in low sodium levels are due to the kidneys being overworked and I am showing sides of anemia now. when I asked Dr Fox if I do indeed have decompensated cirrhosis, he answered, somewhere in between comp and decomp, about stage 4 liver disease. this has nothing to do with the MELD score.
About the cirrhosis itself, well it was confirmed during the last T scan we did " last week", that you definitely have cirrhosis. What are my MELD scores I asked (I am going to teach myself how to calculate them ) one week he said 8, the next week he said 11. So in some ways I know that is good news.
But I don't have any steam left to go straight to research each and everyone of his vague and limited responses. I am at my end, I suppose the latest attitude of his in regards to me just admitting myself to the hospital via ER.
Now really sets the fire under me to get this second opinion anyway from anywhere.
I thank God when I come here the sense of aloneness dissipates.
Thank you again
in response to you suggestion:
be able to assess the status of your liver and develop an appropriate care plan will be able to assess the status of your liver and develop an appropriate care plan (diet, nutrition, medication) for your situation. I am so on top of tht even with the changing labs day to day, which lately "I" request, am quick to interpret and ask the Dr, what do we do next. He says over and over..we need to get the ascites under control and they are not responding to diuretics, thus the next step is to go for the TIPS procedure. How Can I trust this decision in such a delicate procedure at this juncture ? it's as though he knows I have no other choice but to go with his recommendation.
a week or so ago after being obviously fed up with my request to rfer me to a liver specialist for a second opinion he simply responded I "am" a liver specialist.
as things stand now I meet with the Interventional radiologist on Wed morning to make the preparations and ask about the risks and advantage s involved. I am not opposed to it from what I have learned it may be the only help there is now, but knowing the Dr Fox is sitting around in the background waiting for what he considers important events in his own time, really rattles me. Anxiety and any kind of procedure under the circumstances is a real concern of mine now., but anything can happen between now and then.
One of which I hope to be that I will be sitting across from a liver specialist or hepatologist and feeling secure again. I don't know that Kaiser has any in the northern bay area. This is my primary area of research for today.
again, the sodium restriction has been put in place from the start and I have been adhering to it. 100%. The recent decline in low sodium levels are due to the kidneys being overworked and I am showing sides of anemia now. when I asked Dr Fox if I do indeed have decompensated cirrhosis, he answered, somewhere in between comp and decomp, about stage 4 liver disease. this has nothing to do with the MELD score.
About the cirrhosis itself, well it was confirmed during the last T scan we did " last week", that you definitely have cirrhosis. What are my MELD scores I asked (I am going to teach myself how to calculate them ) one week he said 8, the next week he said 11. So in some ways I know that is good news.
But I don't have any steam left to go straight to research each and everyone of his vague and limited responses. I am at my end, I suppose the latest attitude of his in regards to me just admitting myself to the hospital via ER.
Now really sets the fire under me to get this second opinion anyway from anywhere.
I thank God when I come here the sense of aloneness dissipates.
Thank you again
It sounds like your next step may be to go to the emergency room, and if hepcandme is willing to come and pick you up and drive you, I would accept that offer if I were you. I'm not sure if I understand your full situation, and I don't want to speak out of turn, but you clearly have decompensated Cirrhosis, and you need to be cared for and treated by a hepatologist. A gastroenterologist or a primary care provider are not knowledgeable enough or experienced enough to care for someone who has complications of decompensated Cirrhosis. If I were you, I would go to the ER and see if they will help stabilize your current complications (ascites, possibly edema?), and then make an appointment at UCSF with a hepatologist for a consult. Only a hepatologist in a large research based medical center with a transplant center or a hepatologist who is connected to a large research based medical center with a transplant center (as OH said) will be able to assess the status of your liver and develop an appropriate care plan (diet, nutrition, medication) for your situation.
In the meantime, you should not go on a family trip to Nevada, you should not take Ritalin or Effexor or any other medications without the specific approval of a hepatologist, you should limit sodium, you should not eat red meat or other iron rich foods, you should not take vitamins with iron supplements in them, and you should go to the ER (since you don't have a hepatologist) for your ascites. You run the risk of an infection, which with decompensated Cirrhosis and ascites could be very dangerous. It's important to have the proper balance of diuretics and water so that your electrolytes don't get messed up when you have ascites/edema, and we aren't doctors. We have no way of knowing what that balance should be. Go to the ER in SF.
Advocate1955
Advocate1955
In the meantime, you should not go on a family trip to Nevada, you should not take Ritalin or Effexor or any other medications without the specific approval of a hepatologist, you should limit sodium, you should not eat red meat or other iron rich foods, you should not take vitamins with iron supplements in them, and you should go to the ER (since you don't have a hepatologist) for your ascites. You run the risk of an infection, which with decompensated Cirrhosis and ascites could be very dangerous. It's important to have the proper balance of diuretics and water so that your electrolytes don't get messed up when you have ascites/edema, and we aren't doctors. We have no way of knowing what that balance should be. Go to the ER in SF.
Advocate1955
Advocate1955
God bless for offering.
My kids have two intentions, to get a justifiable answer as to why Dr Fox wont even offer alternative ways to help make this happen And to grill him exactly at to the risks I am facing day to day..
such as
1) how rapidly is the fluid in the chest cavity and the left lung moving
2) what is the worse case scenario in this situation ( he suggested I go on the family trip to Nevada but to take it easy and make sure that there is a nearby medical facility where I can be rushed in case of an emergency
3) Now that we know that my sodium is rapidly decreasing , what can I do to keep kidney failure at bay
4) why is he not recommending I see even one of the other heads of GI (who he calls liver experts) in order to have a personal consultation with them. Oftcourse at this point they are sick of his responses, they are concerned by the at times all consuming anxiety I go through now.
They have postponed the family trip. They feel they need to be on standby.
two of my three daughters and my son will be stopping by today. They wil try to take me on a walk and watch me closely.
they wont have to ask if or why I can or can't eat certain foods, so I will be left free to chose based on my own education of my condition..this is positive action for e.
My daughter arrives from NYC with her family on Tuesday the 15th at 2pm, if the flight is on time, there is a good chance that she'll be able to join us for the consultation.
the following morning We are attending an early morning consultation with the Interventional radiologist, who will be doing the TIPS procedure. Nobody is going at this with much confidence in the doctors involved.
I am a realist, I know all the symptoms of a failing liver can become worse, and in some areas , inevitably will, I can work with this. What I need is enough information not to make mistakes with what my condition requires, lots of research , support and accurate AND TIMELY information.
At this stage ghtood doctor to patient communication and compassion are luxuries I have to give up on with my current doctor.
I feel the chances of me getting lost in the work needed to do to move this along, creating so much stress. ( there's only so much I can do staying home alone and waiting for things to develop) in and of itself take me out.
I have been tempted to ask you as the only experienced and available advocate I have who is well spoken and well informed, if you would be willing to attend the Tuesday 4 pm meeting. It would carry so much weight. My kids will all be anxious and nervous. And only my son who is rabid about research will be able to ask relevant questions. He is taking so much in..
If you would like to, I could have him pick you up. If worse came to worse, I'll take you up on your offer t accompany me during that second opinion that I guess I can only get at SF Kaiser. And if there is an emergency , then by all means, I will want to be rushed there and maybe my entire case will be turned over to another doctor.
My kids have two intentions, to get a justifiable answer as to why Dr Fox wont even offer alternative ways to help make this happen And to grill him exactly at to the risks I am facing day to day..
such as
1) how rapidly is the fluid in the chest cavity and the left lung moving
2) what is the worse case scenario in this situation ( he suggested I go on the family trip to Nevada but to take it easy and make sure that there is a nearby medical facility where I can be rushed in case of an emergency
3) Now that we know that my sodium is rapidly decreasing , what can I do to keep kidney failure at bay
4) why is he not recommending I see even one of the other heads of GI (who he calls liver experts) in order to have a personal consultation with them. Oftcourse at this point they are sick of his responses, they are concerned by the at times all consuming anxiety I go through now.
They have postponed the family trip. They feel they need to be on standby.
two of my three daughters and my son will be stopping by today. They wil try to take me on a walk and watch me closely.
they wont have to ask if or why I can or can't eat certain foods, so I will be left free to chose based on my own education of my condition..this is positive action for e.
My daughter arrives from NYC with her family on Tuesday the 15th at 2pm, if the flight is on time, there is a good chance that she'll be able to join us for the consultation.
the following morning We are attending an early morning consultation with the Interventional radiologist, who will be doing the TIPS procedure. Nobody is going at this with much confidence in the doctors involved.
I am a realist, I know all the symptoms of a failing liver can become worse, and in some areas , inevitably will, I can work with this. What I need is enough information not to make mistakes with what my condition requires, lots of research , support and accurate AND TIMELY information.
At this stage ghtood doctor to patient communication and compassion are luxuries I have to give up on with my current doctor.
I feel the chances of me getting lost in the work needed to do to move this along, creating so much stress. ( there's only so much I can do staying home alone and waiting for things to develop) in and of itself take me out.
I have been tempted to ask you as the only experienced and available advocate I have who is well spoken and well informed, if you would be willing to attend the Tuesday 4 pm meeting. It would carry so much weight. My kids will all be anxious and nervous. And only my son who is rabid about research will be able to ask relevant questions. He is taking so much in..
If you would like to, I could have him pick you up. If worse came to worse, I'll take you up on your offer t accompany me during that second opinion that I guess I can only get at SF Kaiser. And if there is an emergency , then by all means, I will want to be rushed there and maybe my entire case will be turned over to another doctor.
When do your kids arrive for the big meeting?
I think I would go to the Kaiser ER in San Francisco if I were you
You are not being whiney
You are ill and need medical attention
If you need someone to take you, email me and I will drive over to get you
I think I would go to the Kaiser ER in San Francisco if I were you
You are not being whiney
You are ill and need medical attention
If you need someone to take you, email me and I will drive over to get you
I am nearing the point of appearing redundant , a whiner and not solution oriented. That is so not me though. I must avoid falling into that place !
So, it's helpful to have the alternative of going to the SF Kaiser facility. Although it will be very stressful for my kids since their dad died there not long ago due to kidney damage and complications with diabetes. It was a nightmare. One of those situations when he chose to wing it without dialysis and come home to die. The kids had to stand the nightmarish vigil for ten days. He was out of his mind 80% of the time.
But that's in the past.
Today was an all time low..But I have to continue to adjust my attitude..
I decided to wait for obvious reasons to have a paracentesis only when symptom became very uncomfortable. Well, silly me, I chose to email my doctor this morning all about the urgency of getting tapped today . ( yes I should have called the office instead)
The response I got "
Roxana,
I am sorry but I just am reading my emails and I cannot arrange a paracentesis as an outpatient today or the weekend.
If you get progressively worse over the weekend (ie before our appt Tuesday), you will have to be admitted to the hospital via the ED.
That is the safest thing. If things bounce back before then, I will see you Tuesday.
DO I look forward to this .. I will have to bring with me printed copies of the latest prognosis, my recent findings, my compromised lungs and kidneys now, just to make sure the staff has a clue as to what not to do.. And by the way this happens to be my doctor's weakness ..showing up for patients once the're in the hospital.\ on the weekend..
Meanwhile the shrink is suggesting I take Ritalin for fatigue or Effexor for anxiety..I cannot expect them to be 100% aware and informed about my current condition with my body as I am.
Yes I am looking at higher anxiety now and spend all the energy I can munster to breathe and accept what is. Meanwhile, I''ll start asking what the going cost for a consultation for someone without approved insurance is at UCSF.
I feel more spent than the day before and the day before that. I have to take breaks so as to try to maintain a balanced mind and body, despite my awareness of so many things deteriorating around me .
Any suggestion from you guys is always welcome and more often than not helpful .
. Just keep in mind that I know few people as anal as I am about what I can and cannot consume Have been for a little over a month now. .I am a natural researcher, know all I need to know about ascites and the effects of decreased sodium to the kidneys, fluid in the lungs etc etc.. someone has to be right ? thank you all from the bottom of my weary mind.
So, it's helpful to have the alternative of going to the SF Kaiser facility. Although it will be very stressful for my kids since their dad died there not long ago due to kidney damage and complications with diabetes. It was a nightmare. One of those situations when he chose to wing it without dialysis and come home to die. The kids had to stand the nightmarish vigil for ten days. He was out of his mind 80% of the time.
But that's in the past.
Today was an all time low..But I have to continue to adjust my attitude..
I decided to wait for obvious reasons to have a paracentesis only when symptom became very uncomfortable. Well, silly me, I chose to email my doctor this morning all about the urgency of getting tapped today . ( yes I should have called the office instead)
The response I got "
Roxana,
I am sorry but I just am reading my emails and I cannot arrange a paracentesis as an outpatient today or the weekend.
If you get progressively worse over the weekend (ie before our appt Tuesday), you will have to be admitted to the hospital via the ED.
That is the safest thing. If things bounce back before then, I will see you Tuesday.
DO I look forward to this .. I will have to bring with me printed copies of the latest prognosis, my recent findings, my compromised lungs and kidneys now, just to make sure the staff has a clue as to what not to do.. And by the way this happens to be my doctor's weakness ..showing up for patients once the're in the hospital.\ on the weekend..
Meanwhile the shrink is suggesting I take Ritalin for fatigue or Effexor for anxiety..I cannot expect them to be 100% aware and informed about my current condition with my body as I am.
Yes I am looking at higher anxiety now and spend all the energy I can munster to breathe and accept what is. Meanwhile, I''ll start asking what the going cost for a consultation for someone without approved insurance is at UCSF.
I feel more spent than the day before and the day before that. I have to take breaks so as to try to maintain a balanced mind and body, despite my awareness of so many things deteriorating around me .
Any suggestion from you guys is always welcome and more often than not helpful .
. Just keep in mind that I know few people as anal as I am about what I can and cannot consume Have been for a little over a month now. .I am a natural researcher, know all I need to know about ascites and the effects of decreased sodium to the kidneys, fluid in the lungs etc etc.. someone has to be right ? thank you all from the bottom of my weary mind.
If you do decide to go to the ER, just make sure you go to the one in the City. Then they won't just call your regular doctor
So great that you have so much family support. You must be feeling pretty good about that!
It is true that you have to be "listed" for transplant before you can see one of the great doctors at UCSF. They contract with Kaiser but in a very limited way until you become listed
I even thought about changing insurance companies in order to see the specialists and I jumped through all kinds of hoops to prove that I was "compliant" I never did convince my doc to give me a second opinion except for one of his colleagues at Kaiser but it sounds as if you have much more serious symptoms than I have ever experienced and if you are approved for Hep C treatment, then the UCSF docs are very involved in those studies
I know it is very taxing but the bureaucracy, the dealing with the insurance company stuff, the disappointments, these are all part of the package, sadly
So great that you have so much family support. You must be feeling pretty good about that!
It is true that you have to be "listed" for transplant before you can see one of the great doctors at UCSF. They contract with Kaiser but in a very limited way until you become listed
I even thought about changing insurance companies in order to see the specialists and I jumped through all kinds of hoops to prove that I was "compliant" I never did convince my doc to give me a second opinion except for one of his colleagues at Kaiser but it sounds as if you have much more serious symptoms than I have ever experienced and if you are approved for Hep C treatment, then the UCSF docs are very involved in those studies
I know it is very taxing but the bureaucracy, the dealing with the insurance company stuff, the disappointments, these are all part of the package, sadly
Howie's doc is Dr. Norah Terrault at UCSF( I may have misspelled her name) She is one of the best.
I saw Dr. Frederick at CPMC ( California Pacific Medical Center) and found him to be compassionate and knowledgeable though I couldn't recommend anyone else there.
You do not necessarily need a referral. Just try calling their offices and make an appointment.
For ascites, you must eat a no salt diet ! When I was first diagnosed with cirrhosis and ascites, I kept the ascites away for 3 years by eating a no sodium ( salt) diet. I was also very careful about what I ate and took a lot of supplements as recommended by my herbalist who is also an MD.
Good luck.
I saw Dr. Frederick at CPMC ( California Pacific Medical Center) and found him to be compassionate and knowledgeable though I couldn't recommend anyone else there.
You do not necessarily need a referral. Just try calling their offices and make an appointment.
For ascites, you must eat a no salt diet ! When I was first diagnosed with cirrhosis and ascites, I kept the ascites away for 3 years by eating a no sodium ( salt) diet. I was also very careful about what I ate and took a lot of supplements as recommended by my herbalist who is also an MD.
Good luck.
Yes I could go to ER if it is necessary. Thats where I went the last time and when ascites was discovered and had the paracentesis three days later.
All my kids will be present as it turns out for this consultation with Dr Fox. Plus a very articulate calm friend who underwent Prostate cancer treatment.
My oldest daughter is flying in from NYC two hours prior to a family consultation I requested with Fox. I know they are going to grill him and leave no stone unturned. And is to be expected they will each come out with their own opinion of his approach to this.
Like I mentioned he's scheduled another "over the phone appt with me. yesterday and this set me back again, morale wise. more maybe this maybe that. I should be on my way now to get my blood labs. Will try driving myself , it's only three blocks.
Hopefully that hopefully I will still have a little energy to attempt a walk in my neighborhood with the dog or without for a few blocks, My sit bones are starting to hurt, if I'm sitting for too long :)
**** I just now got off the phone with my PCP. It was nice too have her listen. She couldn't stop endorsing Dr Fox though. I explained that I needed a referral to be seen at UCSF for that 2nd opinion but the problem was that Kaiser actually has to authorize it in order for my insurance to cover for it. We are not a wealthy family by any means. She asked if I was on the list I told her no and the reasons why. I will investigate the cost of a one time consultation today. I try one of the Doctors that Howie recommended.
All my kids will be present as it turns out for this consultation with Dr Fox. Plus a very articulate calm friend who underwent Prostate cancer treatment.
My oldest daughter is flying in from NYC two hours prior to a family consultation I requested with Fox. I know they are going to grill him and leave no stone unturned. And is to be expected they will each come out with their own opinion of his approach to this.
Like I mentioned he's scheduled another "over the phone appt with me. yesterday and this set me back again, morale wise. more maybe this maybe that. I should be on my way now to get my blood labs. Will try driving myself , it's only three blocks.
Hopefully that hopefully I will still have a little energy to attempt a walk in my neighborhood with the dog or without for a few blocks, My sit bones are starting to hurt, if I'm sitting for too long :)
**** I just now got off the phone with my PCP. It was nice too have her listen. She couldn't stop endorsing Dr Fox though. I explained that I needed a referral to be seen at UCSF for that 2nd opinion but the problem was that Kaiser actually has to authorize it in order for my insurance to cover for it. We are not a wealthy family by any means. She asked if I was on the list I told her no and the reasons why. I will investigate the cost of a one time consultation today. I try one of the Doctors that Howie recommended.
thanks.
I ost track of how many times I have asked for a referral to a second opinion at UCSF. Dr Fox is not known for his "prompt" bedside presence from the comments I've heard. Is this proof ? WhatMy kids are beside themself. They've cancelled the trip we had planned long ago. The one we as a family get to take altogether around every 4 years. Lately he las been dropping names of other heads of Gastro that he is consulting with, as well as one or two from UCSF. Why is it that he has not said, "I would like so and so to take a look at you".. is this beneath a department chief ?? wtf ?
the PCP wont even touch the issue, other than recommend another doctor (6 years experience) who is his subordinate just because he is the only other one that she knows deals with the liver. Not only am I convinced that there is no way he is going to question his superior's approach to this, but the precious energy I have is now limited to getting in and out of a car and walking a few steps. SOme times I picture him waiting for the worst to happen , and him telling my kids "we" did the best with could, but your mother was a rare case" I need a well spoken experienced advocate to be present at my next face to face meeting with him, which will only happen if I request it,
My son is one of them, but he will need the support from another person. I know I sound like a stick in the mud, but I hadno idea that I could deteriorate so quickly..did he ?
So I am kind of stuck. But like you said, get an appointment with a liver specialist from UCSF even if my kids have to pay out of pocket for it as my HMO with Medical is only Kaiser. If they wont recommend the referral for a second opinion..then we have to try one last thing.. Running out of steam, and now insomnia is back. Not the best thing for my emotional state.
I know I can cout on being heard here.
I ost track of how many times I have asked for a referral to a second opinion at UCSF. Dr Fox is not known for his "prompt" bedside presence from the comments I've heard. Is this proof ? WhatMy kids are beside themself. They've cancelled the trip we had planned long ago. The one we as a family get to take altogether around every 4 years. Lately he las been dropping names of other heads of Gastro that he is consulting with, as well as one or two from UCSF. Why is it that he has not said, "I would like so and so to take a look at you".. is this beneath a department chief ?? wtf ?
the PCP wont even touch the issue, other than recommend another doctor (6 years experience) who is his subordinate just because he is the only other one that she knows deals with the liver. Not only am I convinced that there is no way he is going to question his superior's approach to this, but the precious energy I have is now limited to getting in and out of a car and walking a few steps. SOme times I picture him waiting for the worst to happen , and him telling my kids "we" did the best with could, but your mother was a rare case" I need a well spoken experienced advocate to be present at my next face to face meeting with him, which will only happen if I request it,
My son is one of them, but he will need the support from another person. I know I sound like a stick in the mud, but I hadno idea that I could deteriorate so quickly..did he ?
So I am kind of stuck. But like you said, get an appointment with a liver specialist from UCSF even if my kids have to pay out of pocket for it as my HMO with Medical is only Kaiser. If they wont recommend the referral for a second opinion..then we have to try one last thing.. Running out of steam, and now insomnia is back. Not the best thing for my emotional state.
I know I can cout on being heard here.
You need to see another doctor ASAP for a second opinion. Even if you have to pay for it yourself. Or just go to the Urgent Care Clinic at Kaiser. It's an after hours setup just like the ER but with no wait waiting. You can set up an appointment on the phone or online
Don't wait. I don't understand why your doc is not bringing in all the specialists at hand to deal with your serious issues
I know nothing about the TIPS procedure except what I have learned on this forum but, just go see another doctor
STAT
Don't wait. I don't understand why your doc is not bringing in all the specialists at hand to deal with your serious issues
I know nothing about the TIPS procedure except what I have learned on this forum but, just go see another doctor
STAT
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