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TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/8/2006 7:36 PM (GMT -7)   
Hello everyone,
We have had a long day and alot of testing done today. The Hepatologist told us the results of the CT scan we had in January.  Well Mark, has a suspicious spot on his liver, he told us not to worry. He doesn't think it is cancer, said he believes it is from a fold the nodules cause. He has scheduled him for a CT of the abdomen triple Phase on March 8 th. He said a biopsy is too risky right now. He is cutting down on the lactulose (2 times a day) and also starting an antibiotic that starts with a Xi, can't recall the name of it, I took it to the pharmacy to be filled will pick it up on Friday, the co-pay was high! He said the lactulose was dehydrating him too much and not controlling the encephalopathy enough. He will have to take the antibiotic 14 days in a row, then off it for 6 weeks and back on. He was also put on Nadolol to control the portal hypertension. He did seem to think the ascites was slowing down a little so they increased the Aldactone to 200mg. He was very comforting, he did say if it was cancer, it was small and had no metastsis at this time, and they would just move him up on the list if it was cancer. We will know more about it in March. We are going to be very busy with the transplant team as they are trying to get us scheduled with everyone very close together. Thats all I know, and it is worrying the @#*# out of me. HUGS and PRAYERS to ALL MY NEW FRIENDS HERE ON THE FORUM!!!!
 
Teresa

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/8/2006 11:18 PM (GMT -7)   
Hi T, If Mark has verices the nadolol will lower the blood pressure so there is less chance of them bleeding to in addition to controlling the portal hypertension.It will also slow the heart rate down to slow the flow of blood there fore reducing portal hypertension, I take 40mgs. a day. How much does Mark take. Hang in there sweetie. My heart goes out to you & your family with this news. My thoughts & prayers are always with you all.This is a dreadfull worry for you & we are all here for you. take care. HUGS. 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."
 
 
lerie


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/9/2006 8:39 AM (GMT -7)   
Hi T just wanted to say I sincerely hope that now with this new developement & Mark being at end stage that Mark gets a transplant quickly & I sincerely hope the antibiotics hold things at bay till the transplant .My heart does go out to you & your family.I wish I had the words to comfort you, Please know My thoughts & prayers are with you.Call me up anytime I sincerely mean that. If messanger says offline try anyway incase I forgot to change my settings. Love & HUGS sweetie.I'm here for you.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."
 
 
lerie


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 2/9/2006 10:49 AM (GMT -7)   

Hi,

I understand your panic and fears. The word cancer is scary in everyone's mind but it sounds like it would just mean a new liver sooner than anticipated and that is great. Try to focus on the positive whenever you can and remember to take care of yourself. Your feelings are very normal and don't deny them. Don't you hate it when someone tells you that you must be brave for your husband. People sharing your problems never say that as we truly understand your terror and wide range of emotions.

The new antibiotic is probably Rifaximin or Ximin. That is one of the antibiotics my husband uses. It's very expensive for us. This antibiotic is used for Traveler's diarhia but found to be helpful with hepatic encephalopathy. My husband also gets dehydrated on Lactulose and only uses it if all else fails. It sounds like your Doctors have a great understanding of your husband's condition and a wealth of knowledge to call upon.

Im new to the forum myself. My thoughts and prayers are with you. My husband has lived with cancer for two years along with cirrhosis.

Big Hugs, Barbara                                                                          


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/9/2006 11:49 AM (GMT -7)   
Hi Valerie and Barbara, I am pulling myself back together this morning. I am more optimistic today, since if it is the big C, he will just be moved up on the list. I still hope it isn't. I am going to have to get a blood pressure cuff to monitor Marks blood pressure. The nadolol is 20mg a day. His blood pressure has always looked normal to me, guess thats why the doctor wants the B/P monitored. His heart rate does need to be slowed down, it is usually about 110. The doctor still wants him to take the lactulose just 30cc 2 times a day. I forgot to tell you he has also put him on Zinc. That has some healing properties doesn't it? The antibiotic is covered by my insurance it would have been close to $400 without insurance, glad I have insurance!!! As a nurse for many years, I have not had very much exposure to cirrhosis and the treatments, so it is pretty new to me. I have learned so much in the last 3 months. I realy appreciate your kind words and replys!!! We are going to keep on fighting and we will not let anything pull us down! HUGS and PRAYER!!!!

Teresa

donajean
Regular Member


Date Joined Jan 2006
Total Posts : 141
   Posted 2/9/2006 12:16 PM (GMT -7)   

Teresa,

You were not too far me. I live close to Nashville, Tn. My husband has cirrhosis of the liver and hep c. I am still learning and trying to educate myself about all of this. I do want to tell you that I care as well. My heart and prayers are with you. You not alone. Welcome to this forum.

My husband use to have high blood pressure untill the hep c and cirrhosis but now it ramains down, the doc said becuase of the disease. I check it from time to time and it runs low. He use to have to take blood pressure medication.

Just know that I care and you have found  some great new friends! God Bless you and your family.

Hugs,

donna


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/9/2006 12:46 PM (GMT -7)   
Hi Donna,
I am from Arkansas, though we have a transplant team here it just opened in May or June in 2005 and they are not taking any Liver patients at this time. We are very happy with the Doctors in Memphis, the drive is a little long but well worth it!! They are talking about portal hypertension, which is caused from the back flow that the Liver cannot handle anymore. His blood Pressure is never very high, in fact it does run low, but at the same time there is pressure being put on other areas that can cause varices to rupture. The doctor is trying to prevent this from happening. This disease is a very complicate and a ongoing process. It really affect so much. My husband was working in extreme heat and taking ibuprofen all summer long and I believe the heat may have caused the progression. He had swelling in his feet and legs, it went out of control all the way up to his thighs with 4+ edema, and then to the abdomen. The edema is gone now, we have been dealing with severe ascites since. We have had so many changes in such a short time. I appreciate your kind words and your reply,know you will always have a friend here neighbor!!! HUGS and PRAYERS !!!!!

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/9/2006 12:48 PM (GMT -7)   
Hi T zinc is excellant more so for men than women? Your case is a perfect example of the fact lactulose is first choice for encephalopathy & the others are secondary when lactulose is not very well tolerated. Lactulose is also a powerful diuritic for liver patients so it's easy to see how in Mark's case he got dehydrated, but I'm glad they didn't completely take him off it. The encephalopathy is the worst part of the disease for the patient & every one around us. It will all work out sweetie.Barb brings up some good points that we can't fully know what you are feeling but please do know you are not alone.I'm glad your feeling a little more together today. hang in there girl, we all care about you & your family.Love & HUGS sweetie. 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."
 
 
lerie


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/9/2006 3:20 PM (GMT -7)   
Hi Valerie, The encephalopathy is probaly the worst part. The severe ascites is another story, because with it brings alot of pain and discomfort. He has had so much fluid taken off of him, and it just comes right back. Though this time it has progressed slower, they are trying to get it down with diuretics. It is a wait and see thing. I am looking for the positive things today and am finding them. I did have to smile at your quote!! How are you today? HUGS and PRAYERS!!!!!

Teresa

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/9/2006 5:21 PM (GMT -7)   
Hi T, I've been so fortunate the diuretics work for me so the ascetis usually progresses slowly but for awhile I just kept getting bigger & bigger. Unless I get bacteria in it they won't drain me cause they worry I'll get infection.Yesterday I lost 6pounds & today I lost 4 pounds so maybe it will stableize now. I hope so. Yes it is pretty darn miserable. I can't lay down flat right now I have to stay propped a little to keep the fluid out of my lungs & I have difficulty breathing. How is Tony doing?Better I hope.I,m glad my quote made you smile.My thoughts 7 prayers are with you. 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."
 
 
lerie


donajean
Regular Member


Date Joined Jan 2006
Total Posts : 141
   Posted 2/9/2006 5:41 PM (GMT -7)   
Hi Val...and hello to all,
Val, I am so glad you have lost some fluid! Praise the Lord. Now he needs to take the rest off! Friends lets keep praying :)Bless your heart I am sorry your miserable. Hang in there sweet gal and know that we love you!
Tony is doing a little better. He is though getting the fluid back in his feet, ankles, and legs. He is back to itching. But he never complains and has the best attitude.....don't know if I could be so cool...

T, My husband works hard hard labor, he installs fire places and get on high roofs. He works very hard. It's hard on him, especially in the summer months. He will be on disability I hope very soon. It is time. He can barely make it now. After coming home from work he went to the recliner and went fast asleep. This is what is does every day that he works.

My heart and prayers are with all of you who suffer with this awfull disease.
Love to All!
donajean

donajean
Regular Member


Date Joined Jan 2006
Total Posts : 141
   Posted 2/9/2006 6:42 PM (GMT -7)   

My heart and prayers go out to the caretakers as well!!! Know that you are not alone. We are here to help each other.

Love to all........

donajean


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/9/2006 7:13 PM (GMT -7)   
Hi Donna & Valerie,
Donna that sounds like what my husband did all summer, it would go down at night, be back the next day. Then his stomach started filling up with fluid and it got to the point, I had to take him to the ER, and he was admitted to the hospital. They had to do 2 paracentesis in a week, and has had several more since December. They usually take anywhere from 6-8 liters off, just imagine 3-4 2 liter bottles of coke.That is a lot of fluid and then going back again and doing it in 2 weeks. They have had no choice but to do it, he has been on preventative maintenance antibiotic's to keep from getting a bacterial infection. I can only pray the diuretics start working on the ascites. I really do feel like the hard work my husband was doing did cause his condition to progress faster. We are waiting to see if he will be approved for disability. I'm pretty sure he will be approved soon. HUGS and PRAYERS!!!!

Teresa

donajean
Regular Member


Date Joined Jan 2006
Total Posts : 141
   Posted 2/9/2006 7:51 PM (GMT -7)   
Hi T,
I am sorry your husband has suffered ascites in the stomach.My husband has fluid only in his feet ankles and legs. He was in the hosipital in August for the first time for they never figured it out. He was running fever, had fluid on his feet, ankles and legs very bad. They said he had cellelitus on the legs. All they did was remove the fluid in those ares for 3 days then released him. He seemed ok. His back was kiliing him and his Primary Care Dr. said it might have been the stone that was in the kidney. It is gone now. Don't really know. His plalette count is very low and always has been. He is very jaundice looking and some yellow on the whites of his eyes. His feet are almost black. And the Dr's can not tell us what that is....Now here we live in the Big city of Nashville, with some of the finest Dr.'s and hospitals and they can not tell us some things that are going wrong with my husband Tony. In 2004, at the University of Alabama Hospital one of the largest organ transplant hospitals in the world said on the MELD score Tony is a 13. You have to have a 40 to get a new liver,I think some one please correct me if I am wrong. He has had one bladder infection and a few colds and bronchitis.

He does have a very large stomach, but the Dr's say it's fat. He has gained alot of weight over the past few years, but he loves to eat. He also loves salt. Over the past few years he has gotten more tired, his joints, muscels, feet and legs hurt all of the time. He did say he feels like half a man. It is very hard to see him in such bad shape. Many times he needed help with getting wood out of the truck to the yard so we can heat the house and he would not ask anyone to help him. I wouldd help, but then would suffer from it, for I have ddd, djd, osteoarthritis and a buldging disk in the L4 and L5. All we can do is take one day at a time and Trust in the Good Lord, for he knows what is best!

Thank you for responing and thank you all for letting me vent on here. Your a great bunch of folks!

donajean
Regular Member


Date Joined Jan 2006
Total Posts : 141
   Posted 2/9/2006 8:18 PM (GMT -7)   

Hey All, I meant to say Tony also has the muscle cramps from time to time. It must be the disease cause they check him and his electrolites are ok.

 

Take Care and God Bless,

donajean


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/9/2006 10:56 PM (GMT -7)   
Hi Donna,
The Meld score is wrong. You can get a transplant at 20, which does mean you are pretty sick. At 40 I'm not sure but you might not make it through the surgery, I stand to be corrected also if I am wrong. There are alot of people that get transplants while the MELD score is in the 20's. Mark has a 18, Which they said it would put him at either a 4 or 5 on the list. The MELD scores do change as the disease progresses. It goes by the creatine, bilirubin and the INR. Marks will be calculated every 3 months, by the doctors. I also calculate it on a website. Does Tony have a hepatologist in Nashville? If he doesn't he really needs to see one, to be re-evaluated. The doctors where I live were in over their heads with Marks condition. My husbands joints, muscles, legs and feet hurt him a lot also. He gets muscle cramps also. I was told it was the disease. It sounds like you really have a full plate also!!! I hope that you can find someone to help with the heavy chores!!! We all have to vent, we are human! We have high stress with watching and caring for our loved ones. It hurts us to see their diseases progressing. We have to have an outlet and this is the best place I have seen so far. It is because we all have something in common. I found this forum by accident, or was it really (I think the man upstairs brought me here). I have been finding ways to cope. Just know that you are not alone and I am going to be here for you too. I am going to put you on the Prayer list and may God Bless you, you are a very special person!!!!! HUGS and PRAYERS!!!!!!

Teresa

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 2/9/2006 11:33 PM (GMT -7)   

Hello Everyone,

I'm certainly getting a much clearer picture of what my husband Gene is going through with his liver failure from following everyone else's posts. There seem to be similarities and differences with everyone but the one thing that remains constant is how wonderful and safe this forum is for all of us; patients and caregivers. And yes, it is God sent.

There is no transplant possibility for Gene at the end of the rode. He has been fortunate that his acities is only in the lower extemeties although four liters of fluid were removed from his stomach when he was first diagnosed in May of 2003. He was told he would probably be back in a month for more fluid removal but it hasn't happened so far. Gene's legs and feet have become much more swollen the past week. Gene recently started soaking and massaging his feet in salt warm salt water per one of his Doctor's requests to try and improve circulation in his feet. He is developing neuropathy. We suspect the soaking is the culpret. Last night Gene's ankle also started itching but improved when he used some antifungal creme. It's also interesting, that Gene gets the severe muscle cramps or Charlie horses occasionally. We were told it was from his back but it is beginnig to sound like it comes from the liver also. One other thing, Gene has severe Osteo Arthritis in his knees and would under normal circumstance be scheduled for knee replacement surgery. Hmm, normal circumstances, there is nothing normal in our life anymore.

But at least I no longer feel isolated and alone thanks to everyone here.

Hugs and prayers for everyone,

Barbara


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/9/2006 11:52 PM (GMT -7)   
Hi Barb, ali those symptoms sound like liver disease is the underlying cause. I hope Gene is feeling better tonight & able to rest comfortably.You are a wonderfull support to me & everyone in the forum.Take care sweetie. My thoughts & prayers are with you God Bless. 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."
 
 
lerie


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/10/2006 1:06 AM (GMT -7)   
Hi Barbara,
We really do have a safe place to come and talk. And I agree 100% that it is GOD SENT. Mark started getting severe muscle cramps and they were frequent before he started getting the proper medical treatment. Now that he has gotten proper medical attention they are less frequent. The doctor is letting him have flexeril, but only 1 and he can't have it everyday. Mark complains of back pain also.... Gene is so lucky about the ascites, Mark looks like a skinny pregnant man. It is very obvious that he has ascites. they can tap his abdomen and hear a "wave". I have heard with obese patients the only way to tell is by ultra sound. They have taken large amounts of fluid off of Mark. I hope we don't have to do another paracentesis. When a person has severe Liver disease, their body is deprived of many nutrients, which does contribute to Osteo Arthritis, among other things. You are right there is nothing normal in our life anymore! But we have been brought together on this wonderful forum so we are learning how to live in our un-normal lives!!!! God Bless You!!! HUGS and PRAYERs!!!!

Teresa

Post Edited (TDT) : 2/10/2006 1:10:17 AM (GMT-7)


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/10/2006 1:54 AM (GMT -7)   
Hi T, very well said.Neither caregiver,patient,children,spouses lives are the same.But remember there is always hope. I thank God to for this site. It & all of you are a lifeline to me. God Bless 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."
 
 
lerie


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 2/10/2006 8:23 AM (GMT -7)   

Hi All,

I'm relieved that Gene hasn't needed additional paracenthesis as the first one almost put him in a coma. The hospital never checked his elecrolytes but just sent him home. He was walking around before the procedure and was too weak to even stand afterwards and this lasted for almost six weeks. At the time, we had no idea what Cirrhosis was let alone hepatic encephalopathy or Lactulose. To make matters worse his primary care doctor put him on Inderal to prevent protal hypertension without doing an Endoscopy. When we got home I called a Pharmacist because the side effects scared me. She told me to monitor his Blood Pressure and it had dropped over fifty points and was dangerously low. But the on call Doctors said it was his liver failure. Anyway the Doctors have been afraid to put Gene back on this medication even though his BP is now high normal to low high blood pressure. Our first Hepatologist said Gene's liver would never permit BP to go over 130; wrong. My husband is so ssensitive to everything and usually doesn't react in the expected fashion.

When I sit down to post, I never know what will come out of my mouth. I've bottled so much of this up for almost three years now. As I write, more and more frustration is released; not from this terrible illness and Gene's untreatable Cancer but from the incompetent medical care and insensitive doctors we have dealt with. Not all of them, of course, but they all feel helpless and don't even want to see Gene. Sometimes I sense they just want him to go away and die. I'm very proactive and drive them crazy until I get my way. Lately, however I'm feeling too fragile myself and don't have the fight in me anymore. Hopefully the support of all my dear friends on the forum will steer me in the right direction.

God Bless everyone. Love and healing energy for all,

Barbara


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/10/2006 12:25 PM (GMT -7)   
Hi Barb, Sounds like you have dealt with a lot of incompetant Drs> I sure hear you on that one! Now that I know you didn't know about encephalopathy I'm sorry if I sounded harsh with you when you thought maybe it was a blessing. & I told you it was no blessing. If I had known I would have explained encephalopathy & spoken softer. Normally they use nadolol for portal hypertension & verices because it also slows the heart rate to 65 while assisting to lower pressure to prevent shunting & hemmorage. It also easier for the liver to process. I check all my meds. thoroughly after what happened to me.None of us ever know what's going to come out of our mouths here once we let it out & thats OK as long as we are ready to appalogise if we were out of line or offended someone. sometimes we just need to better explain what we meant if it didn't come out right. . We should just let it come out. Thats how we get information. support & often to the root of our more immediate problem so don't worry about what comes out. I always feel better too when I get release in here . I can't get that anywhere else.You will regain you strength & get you fight back. You just need to recover a little.Love & healing energy to you to sweetie. Your not alone We're here for you. Hugs. 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."
 
 
lerie


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 2/10/2006 1:39 PM (GMT -7)   

Hi Valerie,

Words can be very imprecise at times when we try to express ourselves and things often don't come out as intended. I've never found your posts to be harsh. Your words are very comforting and you always focus on the positive rather than feeling sorry for yourself.

When I said encephalopathy would be a blessing for Gene I mean't that should his cancer spread, Gene would experience terrible pain and suffering. Because his liver is so delicate, there would be no treatment for him, no liver transplant, chemo, etc. People can suffer for many months or years with metastatic disease. In Gene's case, we'd stop the antibiotics, give pain relief, palliative care and allow Gene to slip into a coma and pass away quickly. Death would be sooner rather than later, I promised Gene three years ago that I would not allow him to suffer and would fight for quality of life. At the time of his esophageal cancer diagnosis two years ago I was simply devistated. In my heart I knew Gene would not survive the surgery but he wanted to go for it so we would have more time together. This all happened about nine months after being diagnosed with cirrhosis. I didn't understand encephalopathy initially as none of the Doctors gave us any explanations and our Internet was down. It wasn't until Gene was being worked up for his cancer surgery that I discovered the causes of encephalopathy as Gene experience all of them; high ammonia levels, infectoin and bleeding. When surgery was called off after he went into a coma, I had mixed feelings. There was a sense of relief that we had more time together even though it might only be for a few months. But the opportunity to rid Gene's body of the cancer surgically was gone. There was nothing anyone could offer so I prayed, focused healing energy on my wonderful Gene and told myself there would be plenty of time for tears after he was gone. We started to live for the moment, express our love and devotion and hold each other as close as we could. By then it was a constant battle to get antibiotics and the right ones. Hospice was resistant and his Doctors were afraid to take a stand.

Let me regress to when Gene was in the coma. Gene responded to Cipro and came out of his coma. He was progressing rapidly until I mentioned to his doctor we had been giving Gene Lactulose every two hours prior to his falling into the coma in attempts to reverse the encephalopathy and go through with the surgery. So they started bringing Lactulose every two hours. The day nurses handed it to me and I only gave it to Gene as needed. But at night, they woke him repeatedly and he choked it down. By morning he had lost his speech again and was terribly dehydrated. But he was discharged anyway and I nursed him back to health or relative health. Then everytime we stopped the antibiotics the encephalopathy returned quickly until the next course of antibiotics was prescribed.

Now several years later, Gene is stable and his lab results are normal or near normal. Whenever we stop the antibiotics or he gets a virus such as the stomach flu, they shoot up drastically.  Taking Lactulose doesn't work for Gene and his body has become very resistent to using it. We have cases of the stuff but even his doctors admit it doesn't work for him and often aggravates his symptoms.

Fortunatley, Gene seems to have a strong immune system. I live in fear he will get the regular flu and I know he won't be able to survive without antivirals and the treatment could hasten his death anyway. Before the Cirrhosis, Gene periodically got very, very ill and what was a slight inconvenience for me made Gene deathly ill. We didn't have a clue what was going on but it seems the Hepatitis A he contracted in the army predisposed him towards problems and had anyone done a liver panel over the years, I'm sure it would have showed liver damage.

Sorry to be long winded again.

Love you all,

Barbara                                                                    


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/10/2006 5:09 PM (GMT -7)   
Hello Barbara & Valerie,
I did pick up the prescription for Mark and it is XIFAXAN, the one you were talking about Barb. I noticed it is only absorbed in the stomach and intestines and does not absorb into the bloodstream, interesting. I hope it works. When I come here I always find positive words and encouragement. And yes Valerie you are right there is always hope and miracles happening! We were dealing with Doctors that just didn't know what to do with my husband and it did make his condition worsen, the miracle was they admitted it and got him transferred to a transplant hospital with a very caring and experienced hepatologist taking over his care. Then I had so many people, I really didn't know well, helping me financially, since I had missed work and also offering and taking care of our beautiful nine year old son. These things happened all in one-day. The POWER OF PRAYER WOW. The point is I was feeling so helpless, and the help just presented itself. I was feeling defeated and those miracles that happened put the fight back in me. When we returned from the hospital stay, that was when I found this forum. I was not alone anymore!!! I better stop right now before I get teary eyed and can't cook. I love all of you and you allow me to be me. Thank You SO Much!!!!!!!!!!!!! HUGS!

TERESA

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 2/10/2006 6:10 PM (GMT -7)   

Yes Theresa, Miracles do happen,

I'm so glad things are working out well for you. Sometimes we have to reach bottom before we float to the surface. And this forum is our lifeline.

It's so unfortunate that many Doctors just don't understand the needs of patients with liver failure and they don't demonstrate a good bedside manner. Now that you have a Medical team that is top notch and a support system that is genuinely there for you, you can focus your energy on day to day living, replenishing yoursself and enjoying your family.

We want to really trust our doctors and have confidence in their recommendations. I'm glad they admitted they were wrong. Gene used to tell me not to criticize his Doctors and to give them another chance. But after several near fatal errors he also realized that unfair as it is, we know our own bodies and have to be proactive to get what feels right.

Now I hope you get to do something special for yourself this weekend.

Big hugs,

Barbara

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