Sick and Tired

[Guest guest]

In a message dated 11/30/06 1:15:12 PM, meling333@... writes:

This mess with drs and not being able to find one in years is driving me to just find a surgeron and start rippin out adrenal glands I have about had it and dont want to live like this any more..

I can assure you that you want both adrenals our under only the most dire circumstances. If the BP and K is doning OK I dont do AVS.

May your pressure be low!

Clarence E. Grim, B.S., M.S., M.D.

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

[Guest guest]

The AVS is no longer offered at UCSF. They messed up on mine last year. Then I had to go to Mayo Clinic to do it again. I have a new endo who told me he also sent a patient to them and they messed up on him too and he was also sent to Mayo Clinic.

I know for sure that the vein studies are not performed anywhere at DAVIS. Stanford has no idea what an AVS is so dont even bother with your doctor if they suggest to go to either Stanford or UCSF. And you do need to stay off of Spiro for 6-8 weeks. Hang in there. I had to do the same to repeat the AVS. I was also bed bound for months. During the 6 weeks I was so careful about what I was eating and doing like my life depended on it. All went well just the very last week my bp was high(aroung 170/100 but could have been because of travelling and being nervous about doing another AVS). I noticed when I stopped the spiro my bp started slowly climbing at a range of 10 points(on both systolic and diastolic) per week. Spiro remains in your body for a long while so your bp will not be up overnight. Its an aldosterone blocker.

Farah

On 11/30/06, meling333 <meling333@...> wrote:

I found a number and called dr. Schambelen yesterday to find out why it has been 2 months waiting for a apt. He answered and said he sent a message to a dr. don at UCD 2 months ago for me do some more labs. I dont even see dr. Don he knows dr. Schambelan personaly and knows I should see him like dr. Grim said. Dr. Schambelan said to call dr. Don and get the labs. I did get out of him that Adrenal Vein Sampleing is done at Moffet Hospital in San Francisco. Moffet sits across the street from UCSF. Upon calling dr. Don he said some one was supposed to call me and tell me to stop taking spiro. I find all this apauling. 2 months has past since my referral was sent.Quiting sprio is insane and would make me bed ridden. Dr. Grim has gotton me on my feet after being bed ridden for a year. Not to mention the labs that would have to monitor my K which no one offered me, hell I dont even have a MD on this and some dr. wants me to stop taking spiro that has never seen me. I am so sick and tired of it all. I would rather drop dead than stop taking spiro. This mess with drs and not being able to find one in years is driving me to just find a surgeron and start rippin out adrenal glands I have about had it and dont want to live like this any more.. Butchers are probably easy to find just like the dozen of bad Endos I have behind me. ita

[Guest guest]

Hi

The reason I want a gland removed Dr. Grim is I am hypothyroid. Due to the aldo

and norepinephrine excess I can only take 19mcg of synthroid which leaves me

hypothyroid 24/7 with a hypothyroid face and the swelling is just awfull even

though I dash to the max. If I increase my dose of synthroid just to 25mcg all

symptoms of PA and Norep start getting very pronounced and I start swelling even

more I dont sleep and become a nerves wreck, and then I am one permenent panic

attack 24/7. I have tried to get more thyroxine in me so many times with no

success, T3 is even worse.. When I surpressed my adrenals with hydrocortisone I

could take 50mcg of synthroid with absolutly no side effects at all.So I know I

could feel much better.

This is so frustrating I have read essays Mayo says spiro does not effect AVS.

Dr. Grim says it is not necessary to quit spiro for AVS. What a confusing

situation. When I am 1 hour late on my spiro I start shaking and trembling.

There is no way I am going to be like that ever again let alone for 6 weeks.

With out spiro I become so dehydrated there would be only clapsed veins to work

with for AVS.

Befor spiro the lab folks could barley get blood out of my arm which turned into

a ordeal.

I was bed ridden for a year in a half befor I found dr. Grim in June couldnt

drive a car. I cant go back to that place. I am just tired of drs. putting me at

risk for procedures that dont even work out like my last AVS. I believe it was a

failure due to no hydration and nothing after midinght. I should have been

pumped up with iv fluids the nite befor AVS. I have to drink massave amounts of

water or I also get UTI. Thank you for responding. your so kind Farah.

Yes dr. Schambelan said Moffet hosp in SF is the only place where there is

someone experienced enough to do AVS that he knows of.

But I still dont have a apt with him. His offfice called friday and said my file

will be on this desk monday to be reviewed. How oddd I spoke with him thursday

and he reviewed my file 2 monhs ago. So as usual the right doesnt know what the

left is doing. ita

<farahbar@...> wrote:

> The AVS is no longer offered at UCSF. They messed up on mine last year. Then

> I had to go to Mayo Clinic to do it again. I have a new endo who told me he

> also sent a patient to them and they messed up on him too and he was also

> sent to Mayo Clinic.

>

> I know for sure that the vein studies are not performed anywhere at DAVIS.

> Stanford has no idea what an AVS is so dont even bother with your doctor if

> they suggest to go to either Stanford or UCSF. And you do need to stay off

> of Spiro for 6-8 weeks. Hang in there. I had to do the same to repeat the

> AVS. I was also bed bound for months. During the 6 weeks I was so careful

> about what I was eating and doing like my life depended on it. All went well

> just the very last week my bp was high(aroung 170/100 but could have been

> because of travelling and being nervous about doing another AVS). I noticed

> when I stopped the spiro my bp started slowly climbing at a range of 10

> points(on both systolic and diastolic) per week. Spiro remains in your body

> for a long while so your bp will not be up overnight. Its an aldosterone

> blocker.

>

>

> Farah

>

[Guest guest]

Sick and Tired

Description:

Fatigue doesn’t have to be part of every hepatitis patient’s life

by Tamra B. Orr

Body:

Ask most people running from place to place today if they are tired, and a good number of them are likely to say yes. Between work, family, school, friends and other time demands, being weary seems to be a normal part of daily life in today’s America. However, when you throw hepatitis into the mix, fatigue can shift from common to overwhelming. Coping with it can be challenging but not impossible.

“The reason that people are tired when they have hepatitis is simple,” explains Dr. Guy Neff, assistant professor of digestive disorders and director of the liver transplant department at the University of Cincinnati’s Academic Health Center. “The liver makes all of the energy for the body. Any kind of malfunction means there will be fatigue. A significant proportion of my patients with hepatitis C have energy problems,” he adds, “as well as those who are in end-stage liver disease.”

Dr. Victor Navarro, medical director of hepatology and liver transplants at Jefferson University Hospital, agrees. “The exhaustion is the result of liver failure. The liver’s main function is to provide the body with energy. If there is a problem, it cannot store sugars, proteins are depleted – and muscles are too.” Fatigue is a common symptom in his patients as well; about half of those with hepatitis C deal with some level of impairment from it. “Some patients start out fine but then hit the wall later,” adds Dr. Vierling, professor of medicine and surgery at Baylor College of Medicine and director of advanced liver therapies at St. Luke’s Episcopal Hospital in Houston. “Certain days they will feel great and wonder why. Other days will be harder.”

A role worth playingActor Kennedy Lawford, son of actor Lawford and nephew of President F. Kennedy, knows how fatigue can creep up on someone with hepatitis. “I thought to myself, ‘Yeah, I’m tired but everyone’s tired,’” says Lawford, who holds advanced degrees in law and in clinical psychology. “I have three kids and a busy life, so why wouldn’t I be tired?” He also knew in the back of his mind that he might be a candidate for hepatitis because of his past lifestyle. During the 1970s and 1980s, he had almost died from chronic drug and alcohol addiction. Yet, for years none of his doctors suspected hepatitis.Finally, while giving Lawford a physical in Los Angeles in 2001, a doctor tested specifically for hepatitis C, and it came back positive. “I am really glad that my physician looked so carefully,” Lawford says.

“Once I found out, however, I was ambivalent about pursuing treatment. I was fairly asymptomatic, and I wanted to wait until a pill had been developed – some kind of ‘magic bullet.’ I finally realized later that there really is no magic bullet. I had a serious disease and I knew I had to get it treated.” After 11 months of treatment with pegylated interferon and ribavirin, Lawford had no detectable trace of the virus in his blood, and he has remained virus-free. Today, he continues to act in films such as “The World’s Fastest Indian” and “Thirteen Days” and to write his memoirs and speak to groups about hepatitis. Of course, for a number of patients, the issue of fatigue does not become a real problem until after they start treatment. This was the case for Ingrid, a 54-year-old registered nurse living in Pennsylvania. “I donated blood to the Red Cross two years ago,” she says. “A few weeks later, I got my ‘contamination letter,’ as I call it. It said I had hepatitis. I was completely shocked. I had had absolutely no symptoms at all. I was used to reviewing disability files all day and wondering, ‘How did they get hepatitis?’ Suddenly, the ‘they’ was me.”To this day, Ingrid says, she does not know how she contracted the disease, but as a nurse in the intensive care unit of a busy hospital, it is not hard to imagine how it might have happened. “Most likely, I got stuck and just went on,” she says.

In March 2005, after another blood test confirmed that she had a chronic hepatitis C infection, Ingrid began treatment at Jefferson University Hospital in Philadelphia. “My attitude was that I will keep working and not let this affect me,” she says. “However, each day, it was a little harder to get up and get dressed and make it to work. I did it for two weeks, and then I just couldn’t do it anymore. I was too tired.” She took several weeks off from work and then worked limited hours.

At this point, Ingrid was anemic, nauseous and mentally depressed. As she looks back on it now, with treatment over, she still winces. “I think about it every day,” she says, “especially on Saturday nights, because that is when I would do my injection.” Her exhaustion lasted just as long as her treatment – 48 weeks. Was the treatment regimen hard to stick with? “Absolutely,” she says. “I could not believe how bad I felt. It really knocked me for a loop. My hair fell out; my skin was dry. One week after treatment stopped, however, I couldn’t believe how much better I felt.” She says she is infinitely grateful to her employer, who not only kept her job open for her but patiently waited for her to be able to return to work and allowed her to work part time until she was back up to speed. It is not unusual to see depression creep into hepatitis treatment and make the fatigue even worse, according to some doctors. “There is a huge range of symptoms with hepatitis that depend greatly on a patient’s baseline mental health,” says Dr. Neff. “When depression and fatigue combine, you often get insomnia as well, and then it is a downward spiral. Even the medications for the condition can make it worse.” When all of these elements are added together, it can feel a lot like a Catch-22 situation or a never-ending cycle to hepatitis patients. “Hepatitis and fatigue can often go hand in hand with psychological or psychiatric issues,” adds Dr. Neff. “It is not uncommon to also find a problem with the thyroid gland.” Advice for the tiredWhat advice do physicians and fellow patients have for people going through the fatigue of hepatitis? “Make sure you keep active,” says Dr. Neff. “Don’t just sit on the couch watching old Jerry Springer re-runs. Also, make sure you have a good relationship with your doctor. When you go in for a visit, hone directly in on your concerns and questions – don’t just ramble. Use your time wisely. Bring someone for backup, and consider writing out a list so you remember what you want to ask.” Dr. Neff also recommends that all patients get education about their disease. “Read this magazine,” he says, “and if you surf the Net, don’t go by what the guy in the chat room says. Go to reliable sites like the American Liver Foundation (www.liverfoundation.org) or Naomi Judd’s site (www.naomijudd.com).” Dr. Navarro encourages patients to slow down, rest and take naps. He says, “Do not drink any alcohol. Eat a healthy diet, take vitamins, drink fluids and participate in alternative therapies like biofeedback, acupuncture and massage to help maintain a strong sense of well-being.” He also recommends that patients look into using milk thistle. He has been studying this herbal supplement and says, “Many people are madly searching for something else to give hepatitis patients other than interferon and ribavirin. One possibility is milk thistle. It has been used for thousands of years. It will not cure hepatitis, of course, but it can increase the quality of life and mitigate some of its symptoms.”As a television and film personality, Lawford has worked to be a reliable and helpful spokesperson for hepatitis awareness. He shares his experience with others and encourages people to get tested and then talk to a liver expert about possible treatment options. “I spend a lot of time with the recovery community,” he says. “I hear of deaths and the impact this disease can have on people’s lives. I was so glad that I did do something positive for myself, because so many do not know they have it, or they do not pursue treatment. I am very grateful.”

awford goes on to recommend that all patients become as educated as possible about the condition. “I did everything to learn all I could. I talked to those who had had treatment to get the facts. I realized that this is manageable, and it has to be (managed) because it can lead to cancer, a transplant or even death. I encourage everyone to stay positive and keep active,” he says. “Your attitude toward the treatment is a big deal. Make the right choices and live the right lifestyle.”

Keep a calendar and count down the weeks, recommends Ingrid. “That way you can look at it and know that it really will come to an end.”But perhaps the best advice comes from , a 44-year-old woman who went through the disease and treatment without any debilitating fatigue at all. “I was having an insurance examination,” she says, “and I got a letter that they had refused to cover me. They didn’t say why, of course, so I took the results to my primary doctor. He ran the blood work again and it was positive for hepatitis.” still could not believe it. “I told him to run it again,” she says. “I was nowhere near being a candidate for this disease.” Five years later, she still has no idea how or where she contracted hepatitis C.Like others, she did not immediately pursue treatment. “For the first few years, my counts were low and I was still working it out, so I didn’t get any care for it,” she says. “Finally, I did some research and got a doctor because I woke up one morning and said to myself, ‘It is time to make a move and do something about this.’ I told the doctor I was ready to go forward.” Asked about her fatigue either before or during treatment, laughs. “I must be one of the worst judges,” she says. “I kept waiting for the symptoms to start. Sure, I had a couple of headaches and was mildly tired, but that was it. I kept waiting for a wallop of fatigue and it didn’t come. I never took time off from work; there was no interruption of my social, work or daily life at all. I really must be one of those out on the edge.” is still on treatment and has three months to go. So far, she has been virus free. Although she did not have the terrible fatigue or depression that some patients do, she also recognizes that going through treatment like this calls for dependable emotional support and encouragement. “You definitely need to get a friend to support you,” she advises. “My husband and I do this together. He prepares the shots for me and we have a routine. He is always there for me to talk to. Be sure that you have family or friends or find someone within a support group. You should never feel like you are alone.”

Fatigue often is a part of hepatitis and, just as often, a part of its treatment. It can range from hardly noticeable to completely debilitating. It can bring along unwelcome companions like insomnia and depression, too. While there are no easy answers to this problem, it can be mitigated. The advice presented here will help. But above and beyond everything else, maintain open communication with your health care providers. It is the best way to make sure that even while you are sick and tired of being sick and tired, you have someone on your side who understands and will do everything possible to help.

http://www.liverhealthtoday.org/viewarticle.cfm?aid=159

[Guest guest]

well that would be nice but i work so i will not be able to partake Patti From: little bunny foo fofo <madpoetess21@...>

Sent: Sunday, January 29, 2012 12:33 PM Subject: Sick and Tired

Is anyone interested in setting up a free conference call daily 9 am est to check in and do the thirty days? Just a ten min. call.. Lu

[Guest guest]

Just trying to keep up with e-mails is about all I can handle, but thanks for the offer.Ginny From: patti <patti720@...> " " < > Sent: Sunday, January 29, 2012 10:54 AM Subject: Re: Sick and Tired

well that would be nice but i work so i will not be able to partake Patti From: little bunny foo fofo

<madpoetess21@...>

Sent: Sunday, January 29, 2012 12:33 PM Subject: Sick and Tired

Is anyone interested in setting up a free conference call daily 9 am est to check in and do the thirty days? Just a ten min. call.. Lu