Disclaimer

*Results may vary. The information in this site is NOT to be construed as medical advice. Cirrhosis of the liver is a serious condition and if you have it, you should see a doctor. I am not a doctor and am not able to dispense medical advice. My husband saw a doctor (many of them) and they were able to do things for him that I could not. However, they were unable to recommend alternative treatments, and in MY OPINION they were VERY beneficial to my husband, so I am providing some of that information here. My husband and I tried all of these alternative therapies at our own risk, and if you try them you will be doing the same. At your own risk. No promises are made in this blog. I am not saying there is a cure for cirrhosis or any other condition. However, I believe most people can get well, like my husband did. My husband is alive, happy, productive, functional and has his energy back. He no longer has to take medications and he no longer worries about having to go on disability or getting a $577,000 liver transplant. Cirrhosis is a serious condition. He is currently in the fibrosis stage (Stage 2 liver disease), which is still serious. I cannot guarantee you will have the same results. I just want you to know about what worked well for my husband. I hope you will share what you learned with others, and share your story with us as well. This blog was made for YOU! Thanks for visiting!

Friday, July 22, 2016

A story I've been meaning to tell.... and why I would never want my husband to get a transplant

I've been meaning to tell this story for a long time.  I didn't tell it at first, because it was actually a pretty frustrating experience, but enough time has passed so that I can tell it now.

About a year ago, I was going to the hospital to help a woman (whom I'll call Sarah) and her husband (whom I'll call Jeff) shortly after her mother in law bought them a water machine.  

The reason Sarah called me was because Jeff's surgeon (a hernnia surgeon)  was very negligent and failed to screen him for cirrhosis before operating on him. I knew how what a bad thing this was, because the only reason Jake went through his transplant evaluation process in the first place was because it was a requirement in order to get his umbilical hernia repaired (it was the size of a grapefruit and if left untreated, his intestines could strangulate and he could die). 

My husband DID NOT want a transplant, and he told the doctors exactly that. They took him off the transplant list, and we believe it was for that reason, plus the fact that his MELD score had gone down to an 8 by the time he was done with the evaluation.

But when he had been looking to get his umbilical hernia fixed, the doctors told us that they were unwilling to perform the surgery unless he went through the evaluation process, because the anesthesia during surgery could cause rapid liver failure and a person could suddenly need an emergency transplant. 

That is exactly what happened to Jeff. He had hernia repair surgery, and experienced acute liver failure because of it. The degree of negligence in this case was unbelievable. Jeff had actually filled out a 5 page questionnaire from the doctor, which was SUPPOSED to be a way for the doctor to screen whether or not he was a CANDIDATE for a transplant. If that doctor had actually done his job and WENT OVER the questionnaire, like he was supposed to, he would have seen that Jeff was showing the signs of a person who could have cirrhosis. He had a history of alcoholism and  his legs were swollen (the doctor even commented on the fact that he seemed to need compression socks).

This greedy doctor ignored the questionnaire, did the surgery (I don't know what he charged for a hernia repair but when we got an estimate from Jake's doctor, for his umbilical hernia repair, I was told it was around $92,000.00, because it could require a transplant, and he would need to spend several days in the hospital, because he had cirrhosis). And sure enough, Jeff experienced rapid, acute liver failure and got extremely sick, with edema, ascites, jaundice, you name it.

Sarah told me that Jeff actually had saved a copy of that questionnaire, thinking maybe he'd need to show it to his employers, to explain why he had to take time off work. I thought they should sue this doctor, and they considered it, but decided not to. That doctor actually admitted he was in the wrong, and shortly after all this went down, he actually quit his practice (maybe he was afraid he would get sued, I'm not sure). For whatever reason, they dropped it. 

Sarah called me in a panic. I told her about the things that worked for my husband, and they went on a trip to get Alpha Lipoic IV treatments. 

Unfortunately, for whatever reason, the IV treatments didn't work on him, and he just got worse. The day he left the clinic, he was so sick he was on the ground and couldn't get up.  Sarah desperately needed to get back to work, to support her family (because now she was the only breadwinner), but she had to cancel her flight to stay with Jeff.

As soon as he got back home, he needed to get to a hospital asap, so I recommended the hospital my husband went to (at that time I didn't realize they seem to have a pattern of making peoples' MELD scores go up 10 points!!!). 

This guy's MELD score was a 28 when he went into the hospital (and then it went UP 10 points while he was in there... just like with my husband).

Sarah was told by at least one of the nurses at the hospital that it was actually not a bad thing for his MELD score to go up, because that meant he was closer to qualifying for a transplant!

Yes, you read that right. Let me repeat that. In big, bold letters.

Sarah was told by at least one of the nurses at the hospital that it was actually not a bad thing for her husband's MELD score to go up, because that meant he was closer to qualifying for a transplant!

Omg... don't get me started....

Anyway... THANK GOD Sarah's mom is a very kind, caring, compassionate woman. She decided to step in and get a water machine for her son in law (and daughter, and family). They actually ordered it while they were on their trip (to get the ALA treatments) but they lived 2 hours away from the hospital. Sarah couldn't visit her husband every day to bring fresh water, because with traffic it was a 4 hour commute, and now she was the only person working, and she was barely hanging onto her job as-is because she'd taken off so much time from work already, taking him to different hospitals. They had 2 kids, and she just couldn't handle that kind of commute every day. 

I offered to help out and bring water from my own machine, plus PEMF, since I lived just one hour away. 
I went to the hospital when I could (I made a total of 4 visits) because I knew the water and PEMF would help him.  

Jeff started showing signs improvement. I still have the saved text messages from his wife, telling me that his bilirubin was going down, and he was more clear minded than she'd seen him in a long time. Every time I went to the hospital, she would report that he had improved somewhat. It may not have always been a HUGE improvement, but the fact is, there was ALWAYS an improvement. 

Unfortunately, I was never able to go two days in a row (which I realize now, is what he really needed). Some days Sarah just couldn't make it. So Jeff never got what I now call "healing momentum." (update 10-4-16: I wrote a page about healing momentum, that you can see, HERE... I always try to learn something new from every bad situation, and I learned a lot form what happened with Jeff). 

For those of you who have seen the movie "Little Miss Sunshine," picture the scene where everyone has to get out of the VW Bus and push it in order to get it going. In the beginning, it took a lot of force to move that bug, but once it got rolling and gain some momentum, the bug was able to start and they were able to coast.

Imagine what it'd have been like if everyone pushed that bug for 5 seconds, but then stopped. And then the tried to push it again, for another 5 seconds, and then they stopped. Imagine doing that four times in a row. They'd basically go back to where you started, every time. They'd would get no "traction" and the bus would never get enough momentum to be able to run on it's own.  

I realize now, that what Jeff needed was consistency and momentum, and none of us were able to go see him every single day, morning and night, at the hospital, to do regular PEMF treatments and give him fresh water. Not me, not his wife, not his mother in law. We were all too busy. I was working on the blog full time, and had just started telling people about the water, and was trying to keep up with the other people were calling me.

In addition to the fact that I was extremely busy, my friend who sold me the water machine told me I could get SUED for going to the hospital with the PEMF machine (we didn't even tell the nurses what type of water it was, either, because we didn't want them to say no, he can't have that).  My friend said, if they catch you doing something that interferes with their operations, even if he's getting better, you could get SUED. She said they DO NOT want you giving him any treatments of any kind, period, even if he's getting better, you can get in BIG trouble!! 

Honestly, her warning scared the heck out of me. Even though I felt that by saving his wife's text messages, I had proof that he was getting BETTER after every time I went to the hospital, I was still pretty freaked out by my friend's warning, and I stopped going to the hospital. I asked Sarah if she or someone in the family could go more often, or if they could pay someone to bring him the water, at least, on a daily basis, but we just couldn't make it happen. 

I asked Sarah to ask the doctors if Jeff could please just go home for a few days so he could get PEMF (my husband said they could borrow our machine) and fresh water every day (because at the time, he was only getting it every other day, sometimes even longer gaps in between, so his scores weren't able to stabilize). Because he wasn't able to get any healing momentum, and getting consistently better, Jeff's scores kept going up and down, up and down (they'd improve after he'd get PEMF and fresh water, then get worse when he'd go for a day or two without it).

The doctors told Sarah that if he goes home, he will lose his place on the transplant list.  I thought that was ridiculous. We're not talking about stepping out of a line at DISNEYLAND, here, we're talking about a life and death situation. You'd think doctors should be HAPPY if he gets better, but naturally they don't like the idea of losing control of a patient, even if it's a patient who is just getting worse and worse in their care!!!

I practically begged Sarah to please take him home, I was SO SURE that the combination of the water and the PEMF would completely turn him around, based on the fact that he was clearly getting an improvement so far... but the doctors were with him every day and basically brainwashed him into thinking a transplant was the best option (sorry but that is how I feel). This is not hard to do with someone who is not thinking straight at all because they keep getting encephalopathy. And the crappy fried and processed food they were giving him at the hospital was NOT helping him.... batter friend fish, canned peaches, and spinach that was boiled so badly it was slightly brown. 

And let's not forget the Ensure... I will admit, my husband did drink a good amount of this stuff the first year of his recovery (the doctor told my husband it was ok to drink, and we know another guy who saw his same doctor and he drank a lot of it too). But the stuff is LOADED with sugar. I was joking with a woman who just bought a machine (since her boyfriend was in the hospital and we observed how bad the food was) that they must call it ENSURE cause it's so full of sugar, it helps ENSURE the doctors that the patient won't get better TOO fast.

Anyway, back to Jeff....  

I asked Sarah to ask the doctors if he could please just go home for a few days.... that way he could get PEMF during the day, and fresh water all day. 

But the doctors said that if he goes home, he will lose his place on the transplant list, and there is no guarantee that they would accept him back on the list!! I found that to be infuriating. We're not talking about stepping out of a line at DISNEYLAND, here, we're talking about a life and death situation. But of course they don't like the idea of losing control of a patient, even if it's a patient who is just getting worse and worse.

I practically begged Sarah to please take him home, I was SO SURE that the combination of the water and the PEMF would completely turn him around... but the doctors were with him every day and kept telling him a transplant was the best option. Because it is such a lengthy evaluation process and you have to meet with something like 12 doctors, they make you feel soooo lucky if you "pass" and are "accepted."  I feel like saying look, Jeff, you didn't just get accepted to HARVARD, ok... You just got the green light for them to take $577,000.00 from you and your insurance company! 

Those doctors scared Sarah so badly, she was way too scared to send him home to get regular PEMF and fresh water, and I guess I don't blame her. Even though I was 90 percent sure that it would work and he'd get better, you just can't even take a 10 percent chance when it comes to your spouse's life. 

If someone said to me, "Hey there's this contest where they line up 10 men on the edge of a cliff, and 9 of the 10 men are going to win a million dollars, but one man's going to get pushed off"...  there is NO WAY I would let my husband do it, and I would think most wives out there would feel like I do: HECK NO!!!  Even if you "win big" if you're one of the lucky ones... you just can't take the risk. Which is funny, because in MY opinion, it is WAY more of a risk to get a transplant, but maybe that is just my opinion.

Anyway, after I stopped going to the hospital, Jeff just started getting worse and worse, and next thing  you know, he was in the ICU, on dialysis and bleeding from his neck. He ended up getting a transplant, and Sarah told me that he was HOURS away from dying. She told me that if a viable liver hadn't come in, when it did, he would have died.  

They doctors congratulated him on the fact that he got a "Harvard Liver"... which makes me kind of sick. I was told that hospital ONLY use cadavers, and don't do live transplants (which is considered one of the best liver disease clinics in the country). So basically, if the right person didn't die IN TIME, this guy would have been SH** out of luck!!!

Sometimes I wonder if they ever get any livers transplanted from China... there is a huge scandal going on there, right now. Chinese prisoners (many of them imprisoned for practicing a peaceful religion) are killed in order to have their organs harvested and sold. It is sickening. 

I'm not sure things are much better in America. For almost 30 years, I've proudly displayed my pink "donor dot" on my driver's license.... but after I read THIS ARTICLE, that exposes how sometimes patients aren't actually fully dead before their organs are harvested..... I'm seriously thinking about taking myself off the donor list. I apologize if this offends anyone (if you haven't read the article please read it). But I told my sister, if I ever get in an accident, I'd better be starting to get COLD before they take anything out of me. Otherwise, keep that knife away from me.  

Sorry, I just do not trust hospitals!  Even my own uncle, who was the president of a HUUUGE HMO (that we ALL know the name of), said to his partner "Don't ever go into a hospital." 

Anyway... sorry I digress... back to the Jeff situation...

Now that Jeff has had a transplant, he will have to be on anti-rejection drugs, possibly for the rest of his life (they cost about $3,000.00 a month). 

And unfortunately, he is no longer a candidate for PEMF, because it would IMPROVE his immune system, which conflicts with the anti-rejection drugs, which are designed to make your immune system LOWER, 

There is just so much they don't tell you ahead of time. Argh. I just looked up the side effects of anti-rejection drugs and found this PDF, which I find to be really disturbing... this is regarding anti rejection drugs used for a kidney or pancreas transplant, but I am guessing they're probably the same thing for a liver transplant, am going to have to look it up and then I will probably do a post about it.

After my friend Debbie told me that people in the liver discussion forum she visits said that those drugs make them feel terrible (because they lower the immune system). They also increase your risk for cancer and diabetes.

I asked my husband, out of curiousity: "During the transplant evaluation, when you had to meet with all those different doctors (I only went to two of the appointments since I was working full time), did they ever actually tell you that those drugs could make you feel bad, because they lower your immune system? Did they ever explain that those meds cost $3,000 a month, and you'd probably have to be on some form of anti-rejection drugs, for the rest of your life?"

His answer was NO!

Unbelievable.  I looked up some of the drugs (see the "potential adverse effects" column below), and it's so hard to believe that doctors don't go over these side effects with their patients!!!  Kind of like they never bothered to tell me or my husband that the Proton Pump inhibitors they were giving him, while he was in Stage 4, would cause MORE scarring of the liver, and Osteoporosis, low iron, and more.


Please  have a look at some of the side effects of anti-rejection drugs that are commonly given after a transplant (you can see the full chart on this page).

Tacrolimus (Prograf)
*renal dysfunction, *HTN, headache, tremors,
*decreased mg++, gallstone formation,
*elevated cholesterol, glucose intolerance

Cyclosporine-Sandimmune and Neoral, Gengraf (or generic equivalent)
not interchangable, or Gengraf or Neoral
*renal dysfunction, *HTN, headache, tremors, hirsutism, *decreased mg++, gallstone formation, *elevated cholesterol, gingival hyperplasia

Mycophenolate Mofetil (Cellcept)
* leukopenia, nausea and abdominal distress

Daclizumab (Zenapax)
* Gastrointestinal toxicity, edema, glucose intolerance, tremor, headache, dizziness, fatigue.

Sirolimus
(Rapamune, Rapamycin)
thrombocytopenia, leukopenia, anemia, *hyperlipidemia

Methylprednisolone
(Prednisone)
osteoporosis, hyperglycemia, *fluid retention, GI distress, *increased BP, cushingoid effect, *increased appetite



I just spoke to a man currently living in Australia, who told me he had a transplant, and wishes he never had one. He said he knows other people who got transplants and died. For some reason I am thinking he may not have had the transplant in Australia, it may have been India, I apologize that I can't remember.

I will never forget how another woman who called me about 8 months ago, when her mother was super sick, since she'd gotten a transplant and they gave her a FATTY LIVER. I kid... you ... not. The daughter was so upset, telling me the doctors REFUSED to do a biopsy on the guy who donated part of his liver, to make sure it was good!!!

Please have a look at THIS POST and you will see what people have to say about becoming a live organ donor. It seems like so many of these people had no idea how awful they were going to feel after the surgery. Of course, I think it is like the most incredible, selfless, most generous thing a person could do.... but I guess I just can't help wondering, how many times a transplant was done, when there was a BETTER option out there, where NOBODY had to get cut open, and nobody had to suffer. 

Like I said, my husband beat cirrhosis. We have documented proof of that. There really DOES seem to be a way to reverse scar tissue. I'm not saying we've found a cure for cirrhosis, or that we've found a way to reverse all traces of scar tissue... I don't know if that's even possible... but of course I am very hopeful : )

Ellie

  

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