Cirrhosis Support Group

* Liver Specialist (Cirrhosis)

* General Practitioner

* Urologist (Spermocotele developed from heavy edema, causes constant pain and can't walk well)

* Hemotologist (Monitors Blood Bilirubin, Hemoglobin, Sodium, Platelets and other essentials)

* Gastrologist (Stomach upsets due to side effects of Lactulose and Esophical Varicose Veins)

* Alternative Interventional Surgeon (Low Blood Platelet & Edema my dad can't get regular surgery)

* And Possibly Oncologist (Liver Mass Found Sergeon will remove tumor in Liver that did not spread as of yet)

Each Doctor has to watch out for the Organ They are Professionally Designated for and protect it from harm and have it treated. However some treatments are good for one organ and can harm another. I witnessed Doctor fights protecting their responsibility. Where I totally agree. The only doctor who can really smooth sail is the General Practitioner who all he does is refer specialists left and right and prescribes pain medications here and there, including "The Patch" Morphine Based and highly Addictive, should a person with Cirrhosis should be taking this? His Liver Specialist and Alternative General Surgeon disagree and got into an argument. His Gastrologist got into a heated argument over the phone while we saw him, with the Alternative Interventional Surgeon. That why is he waiting so long to do chemo on him, hasn't he tested edema levels first? He called him irresponsible, and I am sure Dr. Hemotologist would agree because the Hemoglobin was low and the Bilirubin was high so we would have backed up the Gastrologist! Phew! It's a mess! And by the way based on my experiences when my dad was hospitalized, don't trust nurse info where I have been they all have been useless other than fluffing pillows, vital signs, drawing blood, IVs and giving food information that is critical to exchange is only valid if you do it with an actual Doctor or Specialist. Because at this point where we all are we probably know more then the nurses based on what we went through and researched for our loved ones.

Has Anyone Gone Through This?

Post edited by: rsls80, at: 08/26/2011 12:06 AM

Post edited by: rsls80, at: 08/26/2011 12:07 AM

Yes, I think many of the people here have run into similar issues with their doctors, nurses and hospitals. It unfortunately seems that many GP’s (usually an internist) and staff at general hospitals don’t have enough knowledge of the liver (all I can really speak to) to really help us cirrhosis patients. I went through a “year of hell” (pardon my terms) due to my GP and local hospital not recognizing or properly treating my HE. During one of my rare periods of consciousness, I begged for and received a referral to a marvelous hepatologist at what became my transplant center. My medications changed immediately, making me feel much more human and able to get through the evaluation and transplant process. This was my introduction to “Team Medicine” which I am now an active proponent of, just as it seems you have become.

In my case, I consider my hepatologist to be the “technical director” of my team as I feel my liver is now the central focus of my health—even my PCP needs to check with my Hep before prescribing new meds or treatments, which is simplified because they are all associated through my hospital/transplant center. I personally think that multiple doctors, each with their own specialty, provide the best possible treatment and outcomes. One important distinction is that I, the patient, am the overall director of my health. It is my body, I am the only one who really knows how I feel, the “team” provides me technical details of what is going on and my team provides me treatment “options” which I can then question, accept or ask for alternatives. These are the same principles of SMART Recovery that I used to get sober and stay straight for almost 5 years now—only I can control my actions by thinking through situations before and during my day. Only I am ultimately responsible for my actions. I am in control of my mind and body (within the constraints of how the body, mind and diseases actually work of course).

I think the bottom line of what you and I are trying to say is “If you are not comfortable with your current medical professionals on either a personal or professional basis, find a new one!” If you have ANY questions, ask your team and, like shampooing your hair (lather and repeat), keep asking until you get an answer you can understand and accept. Seek referrals to get the best specialist possible within your insurance/financial limits.

Dennis

Post edited by: dmanflan, at: 08/26/2011 05:10 AM

It's good to see you back. You have my deepest sympathy.

Tons of love

Gail

A while back I posted a brief message about my only older sibling having liver and kidney issues. He'd had HCV (Hep C) for many years--unknown reason but probably lifestyle choices many years ago. In May when I saw him in upstate NY at my niece's graduation, he started feeling flu-like symptoms. These symptoms, as well as many of the symptoms of cirrhosis that we have talked about here in our little group, finally put him in the hospital back towards the beginning of July. He went steadily down hill from there, developing gangrene in his foot due to poor circulation. He had lost his little toe a few years ago when he became septic from something on his first pilgrimage to Tibetan refugee camps in India (He'd become a very serious and devout Buddhist later in life). After having the gangrenous part of his foot amputated he developed an infection, then MRSA. The antibiotics that were given exacerbated the kidney issues.

I left my house about 7AM on 8/14, connected with one of my sisters and drove to Boulder CO arriving about 12:30AM 8/15. We visited my elder for about an hour but had to crash from the fatigue of driving all day. My other sister (they're twins and the youngest of the sibs) had been with him for a couple of days. He passed about an hour after we left. Very peacefully!

Buddhist funerary ceremonies can be up to 3 days long. My brother's "charts" came back saying his ceremonies must be completed by 7PM the day that he passed. Whew! It seemed so accelerated but it was so peaceful and very interesting to participate in the rituals. There were many people in the Tibetan Buddhist community (which is HUGE in Boulder for some reason) that were part of our own family for several days during and after the ceremonies. My other 2 surviving brothers (we also lost one in 2004) missed the actual ceremonies as they weren't planning to arrive until Tues 8/16, which we thought would provide plenty of time for all the sibs to be together at the end.

In keeping with my brother John Sarsfield III beliefs, we all are of a mindset of "positive thoughts", without regrets, anger or other "ugly" thoughts that often times occur when we lose a loved one. "Sars", as we knew him in the family, is now on a journey to his new life, where he will obtain enlightenment. He is at peace.

I will miss the man in the form that he had as my brother and he will always exist in my current and after lives.

Thanks everyone! Sorry to be so long winded...

Dennis

Post edited by: dmanflan, at: 08/27/2011 03:56 PM

My daughter is one of those nurses that takes care of a patient basic needs.

While my daughter has always beed a straight A student and did great in her CNA classes.

I know how much she knows.

Believe me!!! When ever I have been in the hospital, I have always assumed they knew more a lot more than they knew.

That is not to say that they are not intelligent, but we must realize that a lot of them are just young kids doing the dirty work and the best they can with what little they know.

So, we must as patients and care givers be aware of everything they and including doctors do, to make sure that NO mistakes are done.

I had recently been asked by an emergency room doctor after reading my history ask me.

Whats Hini vaccination? When it was clearly listed as an H1N1 Vaccine!

Good luck to all.

Sammy!

Little pay for the ammount of work they do and the little credit they receive.