I NEED TO VENT

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Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/16/2006 8:18 AM (GMT -7)   
Hi everyone,
 
My frustration level has increased since Gene developed iron deficiency anemia. I just have to get some things off my chest. I read how others have doctors, especially hepatologists, who take the time to answer questions, give advice on symptoms and treatment and generally are there for you. Gene and I are literally on our own. What advice we receive is usually more detrimental than helpful and our doctors simply do not know or do not care what happens to him. There is no one doctor in charge. Even the hepatolagist says she can only prescribe diuretics and nothing more.
 
Gene tries to eat properly and take only the safe supplements. Unfortunately, we have had so many negative experiences with doctors in general and hepatologists and GI specialists who won't take the time to answer our questions or who give us poor information or just don't know. This has happened again and again so I no longer have confidence in our medical services through Kaiser.

This has forced us to listen to our instinct and research things on the Internet. Just for a few examples, Gene was told by his surgeon to eat alot of animal protein prior to his surgery. No wonder he fell into a coma a few hours after his preop physical and treatment for his cancer was cancelled. At this time, Gene was also placed on iron supplements because his hemoglobin was low following a bleed from his second endoscopy. The ER room missed the bleed and low hemoglobin. Only the surgeon caught it the next day when we brought the lab results to him. Of course the ER didn't want to release the records to me initially.

Gene's first hepatologist never did an endoscopy. Perhaps if he had, Gene's cancer would have been discovered ten months earlier and Gene might have had a chance for surgery. This same hepatolagist did not mention to Gene until his second appointment that he should take small doses of Lactulose only if he didn't have one or two bowel movements a day. Now this information came several months after Gene was diagnosed with cirrhosis and much of that time he was near coma levels from paracinthesis, failure to check enzymes or replacement of albumin. We researched this on the web but the doctors refused. Also, Gene's hepatologist turned as he was walking out the door and casually mentioned not to take iron.

Then there was the doctor who put Gene on medication to prevent hepatic portal hypertension still without doing an endoscopy. We were not warned that Gene's blood pressure could fall dangerously low. Had I not phoned a pharmacist after reading about Inderol on the Internet and been told to monitor Gene's bloodpressure closely, he would have died. Even when I called Kaiser and explained the system they didn't know what to tell us.

The next liver specialist we saw said, oh you've never had an endoscopy; we'll take care of that. about four or five months later when the doctor was about to go on maternity leave, Gene asked again about an endoscopy. This time she scheduled it for us and the rest is history. This doctor was the best of the four doctors in the GI clinic. Another doctor cancelled a recheck on Gene's stomach ulcer because he had already had two biopsies on his esophagus and didn't even check with us as to why it was scheduled. The last doctor refused to treat Gene's cancer through less invasive procedures saying Gene would bleed to death and besides, the surgeon was his father in law and they didn't get along. Since the surgeon refered us for this endoscopic treatment, we were turned away.

Now I said the specialist we continue seeing is the best of what is available at our local medical facility. Fifteen months ago this doctor said she didn't need to see Gene anymore as there was nothing more she could do for Gene. Now she is the liver specialist. I ranted and raved and she eventually agreed to see Gene every two months and then every three months. Most recently, Gene asked her to check his iron levels. She faxed the results to us but never commented on the low iron or what to do.

Diet; discuss diet with our HMO doctors. Not a chance. The best they could tell Gene with his edema was to keep his hands off the salt shaker. We even consulted with two dieticians regarding his liver and what was safe and what wasn't safe. It turned out that as novices, we knew more then they did.

In three years of fighting to keep Gene alive and stable through our incompetent medical care, we have found two Doctors at another Kaiser Medical Center about an hour away who are knowledgable and seem to care. Gene sees their hepatolagist on the 27th and I hope he can help us determine how much iron Gene can safely take and how best to use antibiotics. Even though it's extremely difficult for Gene to get to Walnut Creek, I'm hoping he will continue his care under the one Hepatologist we trust.

I've been holding all this in for too long. I'm about to explode so decided to put my thoughts down.

Thanks for staying with me,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/16/2006 8:37 AM (GMT -7)   

Hi Barb,

I can understand the frustration!!!! The doctors here in my city just about killed Mark, before they sent him to Memphis. They were doing large volume paracentesis and not replacing the Albumin!!! Needless to say he was put into a critical condition along with his potassium also being high!!! The GI doctor said something about giving him albumin and never did, then he upped the aldactone without looking at his lab work!!! I got very stand offish with them, and they sent him to Memphis via ambulance transport. Thank goodness they sent him!!! He might not be here today if they had not!!

I am glad you vented, it has helped me release also!!!

Love and Hugs,

Teresa


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/16/2006 10:46 AM (GMT -7)   
Hi Barb, sometimes you have to ask these hepatologists specific questions straight out & be persistant till they answer you. ( I like to remind them I pay them they don't pay me & without me they'd have one less scource of income) Perhaps you need to insist on a referral to a new hepatologists.Barb the standard they prescribe is diuritics, nadolol if there are verices & lactulose for encephalopathy. That's it. Frustrating as it is. If they give us a lot of anti biotics then our livers become sensitive to them. then when we have a shutdown, infection or reach decompensation stage we won't have anything to fall back on & even more importantly we won't be able to take them when transplant is immenant ( like with Mark)so they are very reluctant to prescribe them. They are like this with me but with me at least they do explain. I have developed a sensitivity already to Cipro & Penicellan.In end stage (very late) risks of infection are even higher & this is when we really need to depend on them.You do need a certain amount of animal protien but extreme caution is needed with encephalopathy. Also meats give us other nutrients we need to but in much lower dosages. I'm to have 3-4 ozs. maximum of meat a day EXCEPT hamburger which carries a lot of bacteria in it.Meat also has iron in it naturally that is why we need restricted but still meat scource.Iron is VERY toxic to the liver but there is not enough in 3 ozs of meat a day to hurt us but does give us a scource as well as some veggies. That is why in LATE end stage they may give low dosages short term only.I can certainly understand how frustrating everything is for you. I hope you new hepatologists at least tell you what thier decisions are based on.They owe you that much. My thoughts & prayers are with you.& Gene. later.....

I was told by my drs. that with cirrhosis I am not allowed to eat liver either as this contains far too much iron for a cirrhotic liver.
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/16/2006 2:08 PM (GMT -7)   

Hi Valerie,

I don't have to ever worry about Gene eating liver.

The scary part is that we were told Gene would be dead in two weeks without antibiotics. And the longest he can go between antibiotics is 6-8 days. His liver cannot eliminate toxins with the help of Lactulose alone. Gene goes downhill very quickly and I mean quickly without antibiotics. Nothing else helps; we've been there done that and I can't watch Gene go into a coma in front of my eyes and die because he doesn't have antibiotics. Gene has been alive now for two years because of the antibiotics. This is not standard treatment for cirrhosis and is not written up anywear. But it works for Gene. He rotates Cipro, Amoxicylin, Dioxicyclin, Neomyacin, Rifaximin and Clindamyacin. He has prescriptions for Septra and Flagyll which he doesn't like to use. We do have the blessing from the one Hepatologist we trust to use the antibiotics. THIS IS WHAT WORKS FOR GENE AND IS NOT RECOMMENDED FOR OTHER PATIENTS WITH CIRRHOSIS. GENE CANNOT EVER HAVE A TRANSPLANT BECAUSE OF HIS AGE AND DIAGNOSIS OF ESOPHAGEAL CANCER.

Trust me, Gene would have died two years ago without the antibiotics. This surprised his doctors but after repeated trips to the ER or the lab for bloodwork, where only antibiotics brought Gene around in 24 hours, they do not disagree with us. It is a risk we take. Lactulose does not help Gene; it dehydrates him severely without controlling the toxins. It's not the ammonia levels that cause Gene's problems, it's the toxins the liver cannot process out of the blood. Gene actually doesn't take Lactulose unless he doesn't have a BM in a 24 hour period. And he usually goes weeks or months without taking any and his ammonia levels are much lower than they used to be. At one time Gene was showing severe signs of encephalopathy when a stubborn Infectious Disease Specialist insisted his body needed to stay on Flagyl after it slowly was loosing effectiveness. Well, his ammonia levels were within normal limits that day but Gene was unable to drive, coordinate or function. We rotated antibiotics and Gene bounced back in a few days. It's amazing as well as scary. So far Gene is not resistent to any antibiotics as long as we give him a break after a week and don't rotate it back in for about a month. It has to do with the bacteria in Gene's body and how they break down in his blood and create unique toxins which poison Gene.

Again I'm not suggesting anyone else try antibiotics unless as a last resort. The doctors humored us when Gene was in Hospice; he's been out of hospice for fourteen months and his lab work except for iron being too low, is better than it's been in the past three years. All we can conclude is this is not damaging Gene's liver. If he dies tomorrow, he has had time the medical profession did not give him after treatment was no longer an option for his cancer. He is indeed the Miracle Boy as hospice refered to him.

As for the iron; it was iron or transfusion this time. Gene tolerated iron for about five months two years ago; hopefully he will get through short term iron therapy again. He has no option. Our back is to the wall.

Peace,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/16/2006 3:30 PM (GMT -7)   

Hi Barb, thankyou for adding to your post that this can be dangerous & consult hepatologist.This is very sound advice & a very serious warning to others & I really very greatly appreciate you adding this info sweetie. Yes gene case is very complicated largly to the fact he also has cancer which does pretty much throw standard treatment out the window & the fact his cancer is not in the liver. you should be given more respect from those idiots you call drs. & I still maintain they do have the obligation to explain thier reasonings to you! Its not fair & in MY humble opinion inadequate medical care. Yes sometimes in LATE end stage & where there is cancer SHORT TERM iron or transfusion is required. Gene is in a real catch 22. Malnutrition becomes a major problem once we have liver failure & get deeper into end stage.Toxins & ammonia generally go hand n hand.One cause a build up of the other.Does Gene have sepsis???? They can't say how long we have. thier not God as much as some of them like to think they are. I was given 2 weeks too after my first comma, then went into comma 3 x after that again which they said I wouldn't make it at all but 10 years later here I am. They don't even know how long I had liver disease before I went into failure! I think a lot of it has to do with diet, rest, avoiding extreme heat& viruses etc & what we use on our skin,breathe in & avoiding everything known to harm the liver.We have to have good hepatologists & really be carefull to take good care of ourselves at all time to greatly slow this disease down.I just pray Gene doesn't build up a resistance to the anti biotics. but with the cancer too,your options are severely limited.My heart goes out to you & Gene in your situation. I wish I could find some answers for you but I don't know much can be done in your situation as I've never had to deal with that combo by the Grace of God. I miss my liver & onions

Barb your post was well written & I hope & pray what you are doing continues to work for you. My thoughts & prayers are with you. I sincerely hope your new Hepatologist can shed some light on things for you & possibly come up with a plan. later....


"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/16/2006 4:29 PM (GMT -7)   

Hi Valerie,

Thanks for being supportive of our unique and very difficult situation. I was hesitent to mention what we've been doing as it goes against traditional treatment options. But it does seem to work in one case and that is for Gene.

Gene's blood was cultured and infection ruled out. The only actual infection he had was the slight bladder infection that triggered his coma and ended options for cancer treatment. At that time he had a slight fever and elevated white cell count. There have been no infections since the initial one two years ago. We're grateful that there is no infection in his belly or elsewhere.

In spite of all Gene's problems, he is no longer malnutritioned as his latest tests were well within the normal range. So although his liver cannot process toxins, he does seem to be getting adequate nutrition. When he starts skipping a meal, his albumin levels drop.

We do not have the option of going outside the Kaiser system for treatment although at times I have considered getting private doctors and paying ourselves. Every time we request a referal elsewhere or within Kaiser, his Oncologist says we don't need another doctor; we have all we need. But from our perspective we have nothing we can depend on.

And thank God Gene's immune system has been very good. We are careful to keep him away from crowds and coughing people but he hasn't had even a slight cold this winter. Knock on wood.

Living on the brink of death for over two years has been difficult. We do try to make the most of every moment and not think about tomorrow. If anyone had asked me five years ago could I do this, I'd have said absolutely not. But Gene is worth it. I hope and pray that our miracle continues for a long time.

I do participate in the Esophageal Cancer chat room since I can't get on the hepatitis chat. Gene is the only survivor who has had no treatment for this aggressive form of cancer. All his doctors are amazed. I pray his good fortune continues on and on. But we were told that when the cancer spreads it will go to his weakened liver first and the end will be quick. This is always in the back of my mind but I continue to see joy in every moment I have him by my side.

Valerie, you also are a miracle survivor and inspiration to all of us.

Hugs,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/16/2006 6:35 PM (GMT -7)   

Hi Barb, I will always be as supportive as I can be for you,Gene&anyone else I can be. I know what you are all going thru because I am going thru it to from the other side of the fence even tho i don't have the complications Gene does.I have encephalopathy big time but do everything I can to control.Yes Gene & I are miracle cases as is Mark. I thank god everyday that He has sustained me for so long & stableizing me to a degree even in end stage. I've been deteriating slowly so the fall but thats OK I'll not give up hope & continue fighting.Its Ok to mention what you do as long as you warn everybody to seek the advice of thier Hepatologists & that it can be extremely dangerous in someone elses case & that Gene also has esophacal cancer to complicate things.Once we go into liver failure failure we are at early end stage. Every one of us living with liver disease need to realize everyday is precious because reality is we can be gone on any given day with little or no warning.I sure learned that one!!Everyone has to start as soon as diagnosis is made to rigidly & contually to be cautious to take the best possible care of our livers & to slow progression down as much as possible & for as long as possible.The liver has 500 functions it has to try to maintain & the sicker it gets, the less it can do. It is the most important & probably the most abused (aware of the ways we abuse it or not) organ we have.Even if we have inherited liver disease or autoimmune liver disease we still(often unaware & unintentionally or innoncently) abuse it. Our only hope is this, Slow down progression for as long as possible or a transplant.Liver disease even early stage is not a game or a minor detail to be taken lightly. Even an inflamed liver is a very serious warning something is wrong & can progress.Yes you case is against traditional treatment but the cancer changes it from being traditional cirrhosis doesn't it? Just please emphazise this fact when you talk about treatment other than traditional along with warnings.When skipping meals EVERYTHING goes terribly out of whack & this is a major ,major problem in end stage & it cause more problems & more rapid progression.I'm glad to hear Gene is no longer malnutritioned but there must be some malnutrition happening for his iron to be low but very little malnutrition???There are MANY things our livers can no longer process. Toxins being the major one.I'm sorry for my bluntness here Barb, But screw your onocologist!!!Gene does need a hepatologist & it is his right to have one. She has NO right to make those kinds of decisions & she's lucky she's dealing with you & not me!!!!!Gene is lucky his immune system is still good,mine is vey low & i am suseptical to everything going.Yes he needs to stay away from crowds & anyone who is coughing,sniffling or ill with anything viral.Like I said we all live on the brink of death from the moment we first go into Liver Failure & all the complications that quickly set in & what the liver does to our other organs. Cancer is ALWAYS a high risk in end stage for all of us.I have to get checked for cancer every 6 months.I know the cancer will spread to Genes liver if he leaves remision but I didn't want to be the one to bring that point up.It is amazing what we find we can do if we have to. My hat does go off to you & all our caregivers here & everywhere because I do know what you's go thru Barb & you sweetie are a very special person dear one.Yes you do need to embrace every moment of joy in every day as time is so very precious.My prayers are with you & Gene to that Gene will remain stable. My thoughts & prayers are with you all. later....


"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/16/2006 7:00 PM (GMT -7)   

Hi Valerie and all,

They suspect Gene's iron deficiency is from a slow bleed; either his cancer or verecies. But it's possible his liver isn't processing iron properly.

Since Kaiser's hepatolagists and GI doctors are only permitted to prescribe diuretics, Gene needs a regular doctor familiar with his history to call upon as needed. His primary care doctor bowed out over a year and a half ago stating he was in over his head and didn't want to be involved. I was terrified when Gene left hospice that he would fall through the cracks. The oncologist was the only doctor who offered to serve as primary care for all Gene's needs. It would be a mistake to fire him. We also have a wonderful nurse in the complex chronic care unit that makes calls and troubleshoots for us. At one time I did all this myself but over the years I've become overloaded and try to save myself for major events. It doesn't help that Kaiser won't give me information in spite of my DPA. They state it's a HIPPA violation and want everything to go through the primary care physician.

Does anyone else have something they want to vent about? I seem to be hogging this thread.

Love you all,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/16/2006 7:45 PM (GMT -7)   
Barb, you are not hogging The thread. You have very serious issues here you need to vent & gain support with. If any of the rest of us need to vent believe me we will.Your between a rock & a hard place no matter which way you turn aren't you? Perhaps someone else here has some suggestions or words of wisdom. My heart sure goes out to you tho.At least that one Dr, admitted he was over his head. I will give him credit for that. Yor present Dr. still has an obligation to give you a referral for a hepatologist Barb.You don't have to fire him but you do have the right to recieve medical care for Gene from a Hepatologist! Its good the nurse helps you out. I'm glad the Canadian laws are differant here for power of attorney.At least the nurse seems to care a great deal there anyway.I'm glad to hear she helps you with a lot. The iron could be from all 3 causes but I doubt the verices is one of them. When verices bleed no matter how small theuy are it starts as black blood at either either end then turns brown then red & they don't just bleed they hemmorhage!its only a slow bleed while it is thick & black or dark brown then thins & increases. even with the smallest verices you will bleed out very quickly without medical intervention & they require blood transfussions. I've had problems with them a few times but mine aren't big enough to band so when they start it is one fast trip to ER.It could be the cancer bleeding or the liver or because the liver just isn't processing as you sugested. It is a tough one that's for sure & serious.God Bless Barb & take care. later...

"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie

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