Sunday, December 7, 2008

I wish I could be a Liver Specialist

I got the following email yesterday. As a respect I do not want to mention the writer name nor address. I want to help the person very very much. I wish I could give him/her for the best of my advices but I can't because....

1. I am not a doctor. Me myself I listen to my GI doctors from the University of Florida and above of all, I do and did pray. I still do or did everything what my doctors ask me to do. I fully trust all my doctors (my transplant doctor and the GI both), and the Liver Transplant Team of Shand Hospital, UF. Yes it is very very important to find a good doctor. I did mention or not I can't remember but I will share it again. My first Private GI doctor, he has his own clinic in Gainesivlle. I got told by him saying "You should go back to Bangkok and get the treatment over there. They have so much experiences." I was so surprised to hear that. I did asked him back one question..."What are you going to do if an American man got hit by a liver cancer? Are you going to tell him to go back to Bangkok???" By the blessing I got one of the top surgeons in the world.

2. With my little brain I do know that all the cancer patients situation are more or less different. I was so blessed that I had to take very little pain killer but I did had some sleeping problem. The accumulating the liquid in my lung which is normal to liver transplant patient, I had that. I got suck off twice!! Without lieing my faith put me through for Prednisone attacked also. The side effects of Prednisone is mood swing, stomach upset, swelling, skin change, diabetes, weight changes (Increase in appetite), muscle loss and bone damage and eyesight changes. I have some mood swing and took Activan for a very short time beside that the profit I am getting is my skin looks much much better, even lost weight (I maintain 120 lbs now). I truly thankful for not so much serious problems (like virus attacking) at all, actually till to day.

Diet, as my GI told me I can eat every thing but MODERATE is the key (remember I am sharing only my situation). Lately I have been eaten so much hot food. I do have that crazy desire like one week I would like to eat shrimp with garlic grilled or one week I would eat noodle soup or one week any kinds of curry. My problem is I will eat till I am so tired of it and changed to another kind of food.

3. Do you believe in herbal treatment? Honestly I do not. I do believe in that eating like garlic, tomato, onion, broccoli, ta ta ta ta is good but boil the roots of this and that, these I will never touch! (ie: take the tiger bone soup or cat liver fry or sneak blood). For my case as a cancer problem, I will never go for treatment with herbs unless recommended by my doctor. Remember I do not say that these are bad. What I means is if you believe in it, it is all up to you.I have been one of the lucky ones. My own liver transplant experience has allowed me to stay healthy and cancer free for two years.

In the future, I do not know what will happen, but I can tell you that I live very happily now. I value each day and every morning I pray.."Thank you my Lord Jesus for the new day!"

To my dear email friend, again I wish only the very best for you. My thoughts and prayers will be with you from now on. I pormise you that I will help you as much as I can.

Helen McIntosh

Sent: Saturday, December 6, 2008 5:45:22 AM

Subject: Hi there

Dear Helen,

How are you doing lady? Today, I found you by goggling. Just typed "living with new liver" in google and found you. It is amazing to hear your life with new liver, because I am just advised to get kemo for my liver while I was trying so hard to get proper treatment from western medical since industry for 10 years.I got some possible idea for having new liver or kemo or using many herbs. My liver do not show cancer yet, but there is no medicine in the market right now, I was treated for three times already and being non responder.

I feel so good to see you and can you share me some experience on your transplant. Now I live in California. I have a daughter. My wife is also working in silicon valley.

I like your blog, it is beautiful.If you do not mind please email me back.

Thanks in advanced.


Anonymous said...

Great stuff helen.

BM said...

Congratulation, Helen!

Helen said...

I found the following, part of liver cancer aritcle and I decided to share. For my email friends and who ever wanted to read it!

"Most primary liver cancers begin in hepatocytes (liver cells). This type of cancer is called hepatocellular carcinoma or malignant hepatoma.

Liver cancer is difficult to control. It can be cured only when found at an early stage (before it has spread) and only if the patient is healthy enough to have an operation. Unfortunately, liver cancer is a silent disease and always to be found in a terminal stage. Most patient died one year after diagnosis. Only 5% cases live above 5 years.

Orthodox liver cancer treatment (surgery, radiation & chemotherapy) has showed, in some cases, potential in relieving symptoms and improving the patient's quality of life. But in most other cases, the death rate of surgery, the side effects of radiation and chemotherapy are always beyond that patients can tolerate."

Anonymous said...

Dear Helen,

I found my mail in your blog. It is wonderful.  If you post in your blog, please fix my disable English.. i am still do not know american english very well.
You mentioned these physicians, Dr. Hemming, Dr. Nelson, Dr. Soldavilla Pico and the whole transplant team at the Shand hospital, University of Florida at Gainesville.

I think these beautiful people are your doctos , Am I right?

Thanks helen

Helen said...

Dear Special friend,

You welcome! I will never fix your English which is better than me. I put my Shan/Lahu/Burmese Language into English, this is what I am doing. I really do not care because there are so many people can't read or wirte Burmese/Shan/Lahu. So do not fell bad instead be proud of yourself!

Yes those you mention the Doctors's name are correct, they are my doctors. For me they are so professional in dealing with patients. I simply say, they are good! I said that not because of I am 2 years cancer free, I said that they will tell you a head everything and explain you to understand what happening and what is the best and what will be the risks. They have so much experiences and knows what they are doing.

Yes, I have heard Standford is another good Transplant Center but I never been there. I went to one of the best cancer center in the world, somehow I do not feel right there. (Now...I am only sharing my own experience.)

At last I would say thank you for the Good Doctor, above of all thank you so much to my mercyful, forgiving and loving from my Lord Jesus!

Keep in touch!

Anonymous said...

Dear Helen,

Thanks for prompt email. I have read it, I can't reply immediately because I had some therapies and doctor's appointment even on staurday. I really appreciated for your mail and visiting your blog.Once upon a time you might feel when you were diagnosed, it might be deifferent person to person. How dare I can admit to my family as I am so nervous, I did not want to show off my fear, but I had to talk them, and asked some firends and friends of friends for helps and informations. Keep trying to see docotors , the growing worries and sadness for 10 days on the middle of road to nowhere was so terible, Look like panic syndrome. Lat friday Dec 5th, 2008, I found your blog, I got an idea to email you, becuase (1). You were my nationalilty. (2) Your writing in blogs are reflecting you are happy and showing pefectly normal human beings with daily routine. (3) You love Gems.

I was calm at first time in 10 days, then I emailed you, I admitted. Then started to ask about liver transplant instead of taking kemotherapy. Thanks Helen.

Posting my email address in your blog would not disturb me, please do it, I do not mind who I am. There is no reason to stay low profile, I am just a regular citizen of the world.

As you know, in America, health care policy for middle class working people are not that much good, having appoinment to see doctor also hard, within 10 years staying in U.S, I visited doctor offices nearly hundreds times. I do not want to see the buildings of hospital or doctor's offices, you know, paid all my money, those were not progress.

My liver feels anything so far, no pain. There is a minal amount of steatosis which represent less than 5% of the biopsy. Trichrome stain shows periportal and focal portal to portal fibrosis. Feels like normal, but not nromal anymore in this year, my eating and slepping was changed, back to normal in this year I took care about good eating, sleeping and taking vitamins very well. But working energy is limited by stamina. Docotrs said that was your liver, except that, I feel okay. But other metabolism was changed, because of three times interferron therapies made me changed alot, on the other hands, my age is 44.

For first 5 years (1999 to 2005) I attaned regular meeting for liver care, patient neighboohood seminar, but lately I can't.

Now I chose the CPMC medical center in San Francisco
, they affiliated with UCSF ( University of San Francico), they have Hepertologist team. Second time in this center, my other physician said that is good place for transplant. I need to find out best place, I will check it out your blog again. I tried to talk some doctors for second opinio. Some transplant patients said Stanford is better, some said UCSF is better in the world. I do not know yet Helen. I am also thinking about half millions buck for transplant. I have health insurance, but don't know how it works with recession in U.S.

Have a great day. Take care yourself.
Bless you.