Surgery Update

[Sevetts]

No surgery.  I'm so upset.  I wasn't cleared by GI dr.  To much risk to liver and it would put me in hepatic crisis.  I was so looking forward to this pain being gone.  I'm devastated.  They are going to keep waiting and watching it closely with mri's and when it is in eminent danger of killing me, then they will do it.  It's close but not quite there yet.  I don't have anything happy or good to say right now so I will leave it at that.  Oh, they are having a pain thing call me to dope me up until such a time.  nice.  NOT

[Sevetts]

Thanks Hector.  Great info.  I do drink ALOT of water.  I'm not sure how much but I know it's a lot.  I'm going to try taking the lactulose after food and see if that helps some.  

I hope you are doing well.  

Keeping you all in my thoughts and prayers.

Shelley

[HectorSF]

How to take lactulose

Before starting this treatment, read the manufacturer's printed information leaflet from the pack. The leaflet will give you more information about the specific brand of lactulose you have been given, and any possible side-effects from taking it.

Take lactulose exactly as you have been told to. Your doctor or pharmacist will tell you how much to take and when to take it. Your dose will also be on the label of the bottle. The usual starting dose for an adult is 15 ml (three 5 ml spoonfuls) twice daily, although the dose you are advised to take may be different from this as it will be adjusted to suit your needs.
You can mix lactulose with water or fruit juice to improve the taste. This should be done just before you take a dose. Alternatively, try taking lactulose after meals, to help prevent any feelings of queasiness.

IMPORTANT:
You should be taking enough lactulose per day to have 3-4 LOOSE bowel movements. You should never have diarrhea. If you do you are taking too much lactulose. Diarrhea causes dehydration which can trigger an episode of HE (hepatic encephalopathy). Which defeats the purpose of the lactulose.

If you forget to take a dose, do not worry, just take the next dose when it is due. Do not take two doses together to make up for a forgotten dose.
Getting the most from your treatment

Lactulose can take up to 48 hours to act, so it may take two or three days before you feel the full benefit. However, if after a week you do not feel your symptoms are improving, or if they get worse, speak with your doctor.

It is important to drink plenty while you are constipated. You should aim to drink at least two litres (about 8-10 cups) of fluid per day. Most sorts of drink will do, but as a start, try just drinking a glass of water 3-4 times a day in addition to what you normally drink.

Try to eat a balanced diet containing high-fiber foods such as wholemeal and whole-grain breads and cereals, fruit and vegetables, brown rice and wholemeal pasta. If you are not used to a high-fiber diet, it may be best to increase the amount of fiber you eat gradually.

Keeping your body active will help you to keep your digestive system moving, so try to take some regular daily exercise.

You may wish to include some foods that contain sorbitol in your diet. Sorbitol is a naturally occurring sugar. It is not digested very well and draws water into your bowel, which has an effect of softening stools. Fruits (and their juices) that have a high sorbitol content include: apples, apricots, gooseberries, grapes (and raisins), peaches, pears, plums, prunes, raspberries and strawberries.

Can lactulose cause problems?
Along with their useful effects, most medicines can cause unwanted side-effects although not everyone experiences them. These usually improve as your body adjusts to the new medicine, but speak with your doctor or pharmacist if any of the following side-effects continue or become troublesome.

Possible lactulose side-effects
Abdominal cramps and discomfort

What can I do if I experience this?
Try taking lactulose after food

Feeling or being sick
Try taking lactulose after food, or mixing your dose with some water or fruit juice

Flatulence (excess wind) This usually settles down after a few days
If you experience any other symptoms which you think may be due to this medicine, speak with your doctor or pharmacist.

How to store lactulose
Keep all medicines out of the reach and sight of children.
Store in a cool, dry place, away from direct heat and light. Do not store lactulose in a refrigerator.


I hope this helps!
Hector

[Sevetts]

Thank you very much, I will indeed take a peek

[Advocate1955]

You may also want to make a list of questions to ask the hepatologist ahead of time.  Orphaned Hawk has one her page, Hector has provided some in the past, and I have a list of questions in my journals that is a combination of Orphaned Hawk's and Hector's, if you want to look at them.
Advocate1955

[Sevetts]

I will be going to the UW for the liver stuff.  St. Francis is just for the surgery...if  the hepatologist thinks it's ok to have it.  I also love St Francis.  And St. Elizabeth.  The Franciscan health system seems to be pretty good.  At least with my experiences.  

I agree with you on the PCP and the GI.  That's one of the things I argued with my PCP about.  I have all of the written reports on everything done.  I never thought to call and have the slides sent over.  Thanks, I will definitely do that.  I also already have a printed copy of all of my meds, the dosages, why I take them and who prescribed them...also the schedule I am on with them...as well as a list of all of my medical issues, allergies, doctors and doctor phone numbers.  I made these up yeas ago when my meds got to be to many to remember.  I get a lil ocd about organization at times.  I keep all of my labs, procedure results, med/health lists in an accordion file and now take it to all of my appointments.  I believe I learned to do that here. :)  It has come in quite handy.  I highly recommend doing  it.

Shelley

[Advocate1955]

Shelley, I would have liked for you to be able to see Dr. Bhattacharya, Dr. Carithers, or Dr. Liou, because I have some first hand experience with all 3 of them, but I'm sure that Dr. Landis is excellent too.  I can help you find his bio and education if you like.  I know the link to that page.
I'm glad to hear that they are going to try to get you an appointment sooner if possible.
There are a few things that both your PCP and your GI have said to you that make me think they are misinformed or uninformed about Cirrhosis.  For example, your PCP told you that you've been seeing a hepatologist, when in fact she is not a hepatologist, but rather a GI.  Also, your GI told you that you did not need to be referred to a hepatologist at the UW Liver Care Clinic, when, in fact, anyone with Cirrhosis should be referred to a hepatologist.
Be sure to bring a complete list of your current medications when you get in to see Dr. Landis.  Also, try to have your GI send the actual slides from your biopsy, along with the biopsy report.  Dr. Landis may want to have UWMC's pathologist look at the slides to see if they concur with the other pathologist.
By the way, I love St. Francis Hospital.  Both of my babies were born there, one by emergency C-section under general anesthesia, and my daughter had emergency surgery there a couple of years ago.  St. Francis is a wonderful hospital.  However, you need UWMC.  They are far more equipped to manage your care, given all of your complex issues.
I don't have any first hand suggestions regarding Lactulose, because my husband hasn't needed it, but hopefully Hector will jump back on this thread with his expertise.  It may make you feel icky, but it will do it's job.
Take care, and keep us posted.
Advocate1955

[mzkity]

Shelley just want to say congratulations!! Sorry you had to fight so hard. Amazing isn't it! We're paying them, and you had to go through all that!!

As always Hector, your the best!!!

Kitty

[Sevetts]

The dosage I am taking is 30ml 3 times a day.  I get bad cramping and bloating...and no notice...or at least 2x's now not enough notice anyways. It takes me a minute to be able to get up because of my back. And it just makes me feel real icky.. I don't know how to describe it other than just icky.. for a little while after I take it.

[HectorSF]

All victories are good ones! Congratulations!!! You are going in the right direction now. Use my words any time if it helps you or anyone get appropriate medical care.

If you tell me the issues you are having with Lactulose I might be able to help. I have been taking it for 4 years so have a lot of experience with it. Lactulose usage often needs to be tweaked and its takes time for your body to get us to it. The good thing is the stuff works! There is no question about that.

Let me know. No sense suffering any more than you need too.
Hector

[Sevetts]

The neurosurgeon isn't out of Swedish, he does surgery out of St. Francis in Federal Way.  But he will definitely speak with the Hepatologist.  I have a call in to him already.  I will get a call back tomorrow.  I have the fax number for the UW so he can either call or fax his info.  I don't know what my PCP's problem was today...but she gets in these moods.  But, I was not in a mood to be trifled with today.  I have an excellent Cardiologist.. Dr. Lev.  The Neurosurgeon is Dr. Wohns.  And the Hepatologist that I have the appointment with is Dr. Landis.  I've been with Dr Lev for years...he's awesome.. just met Dr. Wohns but he seems wonderful and I'm hoping the same for the Hepatologist.  Have you heard of him?  I still have to look him up.  I agree, I need my Dr's coordinated.  Dr Lev has always been an advocate of that as has my lung Dr. The neuro is more than willing to speak with any and all of them as well.

They (U.W) are going to go over my records and give me a call to get me in sooner.  They just put me down for  confirmed for the 22nd.. first one they had open while they were on the phone, but I will get in sooner.

Again, I agree....we have some top notch medical facilities here along with top notch Doctors.  And I do feel like I've wasted a lot of time.  No more though.  I'm done with that. I am not one to just be drugged up and wait until it becomes critical before something is done.  Maybe this was just Gods way of getting a fire lit under me to demand an urgent referral to the U.W.  :)  it worked.  ha ha

[Advocate1955]

Good for you, Shelley. You did a great job advocating for yourself with your PCP. Since your spinal tumor is such a pressing issue and you need both a cardiologist and a hepatologist to sign off on it, is there any way your neurosurgeon who wants to do the spinal surgery at Swedish could contact the Liver Clinic at UW to try to get you in sooner than August? To me, it all seems very urgent, and I think the reason it's discombobulated is because you have so many different health issues and different docs in different places. I think things might be treated much more urgently if you already had a hepatologist at UW. We know you have mild HE and we know you have mild ascites, so we know your liver is decompensating or more likely decompensated. I don't understand why your GI and your PCP previously refused to refer you to the liver care clinic at UW, but Hector is right, they have wasted valuable time. I hope you can get in sooner and then get your new hepa in direct communication w the neurosurgeon to resolve the question of the spinal surgery for the spinal tumor. I think you live in a great part of the country where you have access to excellent care, we just need to get your care coordinated.
Keep us posted.
Advocate1955

[rivll]

Good for you! I loved reading this post. Really glad you have taken charge.
All the best to you, Shelly.

[Sevetts]

Ok, I saw/fought with my PCP today.  She was not in a good mood.  But that's ok, I wasn't in a timid mood.  I told her I wanted an urgent referral to the UW liver center.  She told me that she would give me a referral but it wouldn't be urgent and that they would tell me to see my local hepatologist.  I then told her "they are my local hepatologists" and she tried to argue with me that the Dr's I've been seeing are hepatologists.  And got quite nasty with me.  I told her do not get upset with me just because I am trying to be proactive with MY life.  And NO I have seen NO hepatologist only GI's, there is a big difference.  So she said she would give me a referral to be evaluated for a transplant.  I took a deep breath.  I said, I am no where near needing a transplant.  That is not what I need the referral for.  Anyways it went on and on like that while I explained to HER my health situation and why I needed to see a hepatologist urgently.. and I used your words Hector... hope you don't mind but they were perfect.  I said if there is a chance that this tumor is cancerous then "cancer trumps liver every time" then went on to say who cares what condition my liver is in if I die from cancer because it was ignored?  So she wrote me out a proper urgent referral to the UW liver center.  I have become good friends with her office manager even outside the office...she faxed it immediately then said I needed to call.. I said oh, I need to call them.. long story short on this one.. She called them for me and when I got home 15 minutes later she called me and said I have an appointment on Aug. 22, but that they are going to go over my charts and call me with an earlier one.  But the 22nd is confirmed.  I could have gotten in a lot sooner with an ARNP but she insisted on an MD for me.  I love her.  :)

On the HE and other stuff...according to ammonia levels and "flap" test and memory/cognitive function I have mild HE.  Meld score of 7 although that might have gone up as my labs have gotten a lot worse.  And child pugh of B.  But, I've already decided that I am taking nothing that these doctors have said as the dead truth because I've gotten so many conflicting statements from them.  I started taking the lactulose again today.  I hate that stuff but I will discuss that with the Hepatologist when I see him.

Yesterday I might have had some weak moments...but it made me a lion today.  I feel good about today.  Yeah!!!  I'm going to the UW

Shelley

[HectorSF]

Stage 4 just means cirrhosis. I am taking that as a given.
Class B at that time the test was given but that isn't set in stone and can't get better. You had a Child-Pugh of 7 which is only one one point above a Child-Pugh class A which is a 6. A typical class B is hospitalized multiple times and treated for ascites, HE and sometimes variceal bleeding. This your normal state of health? Also there were numerous posts about ammonia and HE. As though HE is diagnosed using ammonia levels. That is not how HE is diagnosed and since you are not compliant with Lactulose who can say what you HE status is.

Due to so much misinformation it is especially important to be under the care of a hepatologist who is the only one who can assess your true health status. And as I stated it is false that any surgery is "Too much risk to liver and it would put me in hepatic crisis". Get the facts from a hepatologist and then go from there.

MELD vs Child Pugh

"Although the Child-Pugh scoring system was the first of its kind in stratifying the seriousness of end-stage liver disease, it is by no means the only one. The Model for End-Stage Liver Disease (MELD) is used increasingly to assess patients for liver transplantation, although both scores seem to be more or less equivalent.

The MELD score is perhaps a more accurate assessment of perioperative mortality in patients with hepatic dysfunction. The score is derived from a linear regression model based on serum bilirubin, creatinine levels, and the international normalized ratio (INR). It is more accurate than the Child classification in that it is objective, gives weights to each variable, and does not rely on arbitrary cut-off values.Clinicians can use a website to calculate the 7-day, 30-day, 90-day, 1-year, and 5-year surgical mortality risk on the basis of the patient’s age, ASA class, INR, serum bilirubin, and creatinine levels. Taken together, the Child classification and the MELD score complement each other and provide an accurate assessment of the risk of surgery in cirrhotic patients."

The MELD score is how livers are prioritized for liver transplant.

Get the facts by being evaluated at a liver transplant center. You are wasting valuable time being side tracked with amateurs and misleading and sometimes false information.

Good luck!
Hector

[Sevetts]

Thanks Hector.  I'm trying to get into UW.  I was so devastated when they said NO surgery based on what the GI said.  I'm on hold right now with the Drs office trying to get an urgent referral to the UW.  I was told by pcp and gi that I am stage 4 class B.  But I am no longer putting ANY weight in what any Dr has said about my liver until I see an actual hepatologist and he/she tells me.  Ok, so my PCP wants to see me today anyways on other matters.. so I will demand an urgent referral to the UW liver center.  I'm done playing with this.  I didn't think I was playing...but now I feel like I am.  I was a lil weak yesterday, today is a new day and they better watch out because I mean business.  

Shelley

[HectorSF]

"If I wouldn't have made it out of the surgery or made it out but with it making my liver severly damaged then the surgeriy wouldn't have been worth it."
Says who? Your GI? He or she isn't qualified to make that decision.You are taking the advice of someone not qualified to make that decision. ONLY a liver transplant center after doing a complete evaluation can make that call. The protocol for persons with cirrhosis is no VOLUNTARY surgeries not NO surgeries. This is so basic that any first year resident knows this. Patients at transplant centers in ICUs have surgeries and other medical interventions commonly to survive until transplant.
I hope this is a misunderstanding on your part and not an example of how uneducated your GI is.

From all that your posts you are a Child-Pugh class A cirrhotic, NOT class B NOT class C. All cirrhosis is not the same.There are 3 classes you have the earliest class A cirrhosis which means you have options.

Don't take my word for it get to UW ASAP for a full evaluation of your liver disease. It may not be as bad as you imagine. Stop wasting valuable time with amateurs. Only a hepatologist can say what is and what is not safe regarding your liver and any procedures. A GI or PCP or any other doctor can NOT evaluate cirrhosis. They don't have the resources, training or experience.

As far as cancer is concerned. Cancer trumps liver disease most of the time. When a patient has cirrhosis and has cancer the short term risk of death from cancer is higher than the risk from liver failure. People can live with cirrhosis for many years typically. This is not the cause generally with cancers. Successful outcome with cancer is measured by the stage of cancer. To let a cancer progress is to lose your advantage. Diagnose it and treat it ASAP is the motto for cancer.

Get to a liver transplant center as fast as you can. To delay cancer treatment based on a GI opinion, is playing Russian Roulette with your life. Many patients can have surgery for cancer when they are a class A cirrhotic. Which is how you appear to be. I did in 2009. I had a very rare cancer and most likely wouldn't be hear now if I didn't have general anesthesia and the surgery.

Time never comes back. Don't miss your window for treating your cancer. You will pay the price not your GI or anyone else.

Good luck.
Hector

[Sevetts]

Thanks Adv.  I know it was the right decision.  If I wouldn't have made it out of the surgery or made it out but with it making my liver severly damaged then the surgeriy wouldn't have been worth it.  Not yet anyways. I've gotten my mind off of the surgery because it's not going to haopen and I'm on to the next thing on the list now.  :)  i'll deal with the tumor again when the next group of doctors call me.  Until then it gives me time to get the stomach emptying procedure done, get results from the hipa and get ahold of the UW.  I think I just have a few more things to do befoe things will start slowing down a bit.  Looking forward to it.  :)  I know you have all been through things like this before and even much, much more.  Just  have to walk through this mire before I can get to the nice beach right :) and I can smell the waves so it must be close.  :)'

Shelley

[Advocate1955]

Shelley, I'm sorry that you can't have the spine surgery, but the risk of liver failure is so great for you if you were to have the surgery. I think your GI made the right call. Now, I hope you can get yourself referred to UWMC as soon as possible. It sounds like your GI is doing all the right things: diuretic, lactulose, xifaxin, but you still need a transplant hepatologist to oversee your care.
Stay strong.
Advocate1955

[Sevetts]

Thank you mzkity.  I had my moment..but I'm over it now.  I had put this in Gods hands and obviously it would not have been a good thing for me to have this surgery done.  I have an excellent team of Doctors that I have a lot of faith in and I have put this back in Gods hands.  I know he has a plan for me.  They will figure something out.  I'm just going to take a deep breath, I've had my cry and dried my tears now it's time to move on.  :)

No, I've not been able to see a liver specialist yet.  But this obviously gives me the time to do it so I am going to be on that like white on rice.  :)  

Thank you for your kindness.  I hope you are doing well.  I keep you all in my prayers daily.

Shelley

[mzkity]

Oh Shelley I'm so sorry for you!! I notice you said "GI doctor" does that mean you havn't been able to see a liver specialist? Well in any case hang in there! I hope Hector is feeling strong enough to comment on this. Won't tell ya to stay strong you are strong!
Kitty