Today I talked to a very sweet gal named Amy, who bought a water machine in January, for her sister, who is in her 40's and had a MELD score of 15. Amy is an absolute HERO, and I think her story deserves to be heard, and applauded. And I want to thank her for allowing me to use these screen shots from my phone (personal details removed of course).
Amy called me in January after she'd read my blog and wanted to get a water machine. She desperately wanted to help to her sister. She told me she would do ANYTHING to save her. She said she would take off time from work and move back home, or even sell her condo if that's what was necessary. I told her wow, I really love my sisters but I don't even know if I'd do that. I was really impressed by her dedication and determination.
Amy didn't waffle around or wait. She'd worked for an attorney and was a serious researcher like me, so she had checked out the technology like I did, with a scrutinous eye. She had looked into many other treatment options, including flying to Germany with her sister for some new type of treatment. I told her that in my opinon, based on what I had seen, I truly believed that a water machine was her best option.
Amy is a very focused, goal-oriented person. She meant business, she wanted results, and she ordered a water machine for her sister right away.
She took it home to her parents' house (where her sister was living while she needed care) and hooked it up and started giving this water to her sister, and also showed her parents how to use it. She even told me some dark, suspicious-looking spot on her Dad's head disappeared after he used one of the different types of water on it... but that's another story!
Amy got her machine on January 7th, flew to her parents' house, got it hooked up, and her sister began drinking the water on the 9th. She texted me on January 28th to tell me that her sister's MELD score had dropped down to a 9 (from a 15). This is a six point drop that happened in less than three weeks.
Well, today she told me her sister's MELD score is down to a SIX. I couldn't believe my ears. That happened in 6 1/2 weeks (Amy's sister started drinking the water on January 9th and her bloodwork done on February 23rd showed a MELD score of 6, down from 15). Amy told me that her Mom said her sisters' doctors were incredulous. But very happy (which was nice to hear, because sometimes they are not so happy).
A "6" is AS LOW AS A MELD SCORE CAN GET!
Amy sent me a screen shot (with permission to post) of her sister's text message to her, pictured to the left. Wow. FYI the reason her sister is mentioning a skin graft is because she had a huge open wound on her leg that would not heal, so the family was anticipating having to pay a plastic surgeon to fix it, but now it's not necessary. They began applying some of the water from the machine. I don't mean the drinking water.. .it makes different types that are used in hospitals, and one is a medical grade disinfectant known to kill MRSA, staph, e. Coli and more.... it's the same type her Dad used on his head. Now the wound is starting to heal and close back up. Her Mom's exact words:
At the Wound Center Feb 25th they could not believe how great her leg looked and there is no need for plastic surgery
To give you some perspective on what a huge deal it is for Amy's sister to get these kinds of results, it took my husband almost THREE MONTHS of taking LOTS of supplements, doing green juice, aloe juice, probiotics, and basically everything we could think of (in addition to his prescription meds) to get his MELD score down from a 17 (previously 28) to a "9" (this was before we knew about PEMF or the water). It took him SIX MONTHS to get it down to an "8" (at which time his liver was still pretty clogged). And it took a WHOLE YEAR to get his score down to a 6. And I thought we were getting fast results! His nurse actually thought the scale might be broken when she took his weight in June (6 months into his recovery), because she wasn't used to seeing people gain their weight back that quickly.
UPDATE January 2017: Sadly, I learned the hard way, that because we were actually taking the slow route to recovery (while I thought we were taking the fast route), my husband was left with some serious damage to his body that as far as I can tell, and as hard as I'm trying... cannot fully be reversed. Please read this post below (by clicking on the green box) to see what I'm talking about.
You can see my post showing how happy I was about my hubby's results, HERE and HERE. We only found out last month that his MELD score is down to a "6." I'm guessing it may have been down to a 6 by the end of 2014 or early 2015 and his doctors just never mentioned it to us, and we didn't think to ask because at that point he was doing so well, it didn't seem to matter.
I do want to point out that Jake's MELD score was 28 on 12/23/13, but you can't see it on this chart. I am using the number 17 in this post because Amy's sister started out at 15 so it seemed to make more sense to use that as a comparative figure.
Keep in mind, Jake was in the hospital, hooked up to IVs and getting round the clock medical care (totaling to about $100,000) the whole time he was in that "red zone." He was in there almost a full week, and the day he was dismissed from the hospital (his 2nd of 4 visits), on 12/27, he was still in the red zone (with a MELD score of 17)!
I didn't actually see Jake's MELD score of "6" on the computer screen the last time we visited his doctor (the day we got his FibroScan in January). I had to calculate it myself based on his lab results in January (I had to ask the doctor's office to mail it to me). I do like Jake's doctor, but he wasn't exactly quick to congratulate us on Jake's results... especially after I told him Jake hadn't been on a single prescription medication for over a year, and he hadn't seen this doctor in just as long.
It takes a Village
Even though Amy's Mom acknowledged that the water must have something to do with Amy's improvement (as you could see in the text photo towards the top of the page), Amy told me that now her Mom seems to be having a hard time believing that these results her sister got are from the water, which is moderately upsetting to Amy because she has worked so hard to help her sister turn things around.
Because I saw my own husband's results, and because I've talked to so many other people, in my mind, it's clear as day that Amy's efforts are a HUGE part of what turned her sister around so quick. But I don't think her Mom realizes how much of a big deal it is (to go from a MELD score of 15 to a 6 in less than 2 months), because they have nothing to compare it to. When cirrhosis hits a family, it's the most surreal experience, it blindsides you, and typically you don't know other people who are going through this at the same time, so you don't can't tell if the results you're getting are good or bad or what (comparatively speaking). We may see support groups for Cancer, Fibromyalgia, Alcohol, and many other things, but.. I don't think I've ever seen one for Cirrhosis!
I said to Amy, I feel like calling your Mom to tell her, look, just to give you some perspective, I've been in touch with hundreds of people who have cirrhosis, and I've never seen anyone get their MELD score down that fast. We thought my husband had fast results... but Amy managed to help her sister get her MELD score down to a 6 in about 1/5th of the time it took us. Even if her mother never acknowledges Amy's efforts, I feel strongly that Amy should be commended and congratulated, so I decided to make this post for her.
(Update 3/2: Amy just told me her Mom sent her a thank you note, giving her full credit for all her hard work. Yay! That made me very happy)
Yes, it does sound too good to be true. I get it.
After seeing how Amy's Mom was having a hard time giving her credit for what the water did for her sister, I told Amy that she isn't alone. I see this happen a lot. When people get used to drinking the water, they sometimes forget how difficult things were, before they got a machine. It would be interesting to see what would happen if Amy decided to take back that water machine for a month or so... I am sure everyone would "feel" it's absence!! People with serious conditions, who drink this water regularly (and their loved ones around them), sometimes don't see what a huge difference it made, until they no longer have it.
As an example, I was delivering this water to a woman who had rheumatoid arthritis so bad, she could barely walk. She lived close to my in-laws (an hour's drive away). Because she lived so far away, I wasn't able to get water to her regularly (I'd give her a few 3 or 5 gallon bottles at a time). When she was drinking it consistently, she was able to see a big difference.
This is a woman who barely noticed a difference with the PEMF machine (which was a Pulsed Harmonix), even though my husband got good results and could beat me up 5 flights of stairs a few months after using it. They participated in the same study and had the same machine. No offense to Pulsed Harmonix because I know this machine helped him and I love it, but this is part of the reason I want to upgrade to a PEMF machine that's got the most testimonials for liver disease (it has a signal that's different from all other PEMF machines).
Anyway, when she started drinking the water, she went from having a hard time walking, to being able to walk for a few hours straight. I will never forget the day I came to her door and saw her walking like a normal person.
When I wasn't able to deliver water to her consistently, her pain started to come back and she was having a hard time walking again. It was at that point when she decided to get a machine (she got the most expensive one). Sometimes, the only way you can truly see that something truly made a difference, is when you have to do without it. I'm not making medical claims, I'm just telling you what happened. Maybe it was divine intervention, and all the other cases I've seen have been divine intervention. Only you can make that call. Personally, I think it was the water! Or maybe it's a little of both, because in my opinion, it WAS divine intervention that we learned about this machine when we did.
The woman whom we got our water machine from told me a story about how her sister in law (whom I'll call Janis) gave water to a woman who was on 4 medications with knee pain, diabetes, high blood pressure and high cholesterol. She gave her this detox water for 10 days and her knee pain went away, cholesterol went down, she got off blood pressure medication completely and reduced her diabetes and cholesterol medications.
Then, trying to save money, she bought a competitor's machine (a top of the line model). 3 months later the woman called and asked for more of Janis' water.
As you can imagine, Janis was pretty annoyed, and said, "What do you need my water for, you've got a brand new (insert name of brand) in your kitchen!!" Janis said the woman said, "That thing is a piece of junk.. now I'm on TWELVE medications!" She had gone from four meds to TWELVE in three months!
My friend told me that she usually didn't even tell that story because she thought people wouldn't believe her, but I just decided to tell it myself. You can choose to believe it or not but I think it's a good story and it should be told AS-IS!
Credit for the Caretakers - All of them - Even if you're YOUR OWN Caretaker!
It occurred to me that maybe the reason Amy's mom was finding it hard to give her credit for bringing the water into her daughter's life, because she probably feels like she should be the one getting the credit if she's having to live with her daughter all day and take care of her. Amy had to work a lot and wasn't able to move back home permanently (though she said she'd do it if that's what it took to save her sister). I just have so much admiration for Amy.
The fact is, all caretakers and researchers deserve credit, because it's not an easy job. When someone is hit with cirrhosis, it really can take a village to get a person back on track. My husband's health today is the result of a lot of hard work from a lot of people, and I know I was just one of the many people who helped him get back on track.
I realize sometimes I probably don't give enough credit to all the other people who were really involved, in helping my husband to get better (when you add it all up... there were hundreds). It occurred to me that while I felt like my husband's doctor should give us some credit for the fact that Jake's MELD score was so low and he was able to get off his prescription meds, my husband's doctor probably felt like we should be giving him more credit, because he's a specialist and he helped to analyze his bloodwork and he probably feels like he's the one who helped him get back on track in January 2014 (when we first saw him). It's funny because if you asked my husband who should really be getting the credit, he'd probably say, "It's me, damn it! I deserve more credit than both you guys! I'm the one who had to take all the pills and be the guinea pig for all your pills that may or may not work!!!"
Giving credit where it's due
First, obviously Jake himself deserves the credit because he did the actual work in terms of giving up alcohol, going to meetings, taking his pills and supplements, using the PEMF machine, drinking the detox water and shakes and everything else I tried to get him to take. We had to learn a LOT through trial and error... he was like my guinea pig (and therefore, the guinea pig for everyone who reads this blog). So for those of you who've been thanking me for the things I've learned and shared... you should really be thanking him : D.
Unless you're living in your parents' basement, it costs a lot of money to write full time and pay for the roof over your head (especially if you live in California). So I am grateful to my husband for trudging through traffic to an 8-10 hour day job every day, to pay for the bills and rent and our internet connection while I stayed at home working on this blog, talking to people with cirrhosis in sweatpants when I'd have been a lot more able to help pay our bills if I had gone back to my day job, too. I feel so lucky to have been able to devote my time to helping people with cirrhosis, because I enjoy this 10x more than I liked being an admin assistant or a waitress.
Back to the Thank Yous...
But back to the people we have to thank.... my husband saw dozens of doctors, went to several hospitals (4), and had to be driven in an ambulance after crashing and totaling his car (I even thanked the cop who found him, after I tracked him down). He saw so many nurses and technicians and had to get his blood drawn once a month.
I'm thankful to Dr. Berkson for discovering the Berkson Protocol (and nearly getting in trouble for using this on his patients), and Debra Elkin who wrote the Cirrhosis Bible and Ezra Protocol for telling us about Dr. Berkson (I'm pretty sure that's how I learned about him), and for telling us how dangerous it is to eat red meat. I'm grateful for the discussion forums, where I got to see stories of people who had lost their loved ones. It got me to realize we had to act NOW, because my husband really could die from this.
I'm thankful for the article I saw, written by Dr. Rajiv Jalan, that showed a person's risk for encephalopathy can be reduced by half, with probiotics. I'm grateful to the doctor who performed my husband's hernia repair surgery - he did a great job and Jake healed beautifully (let me know if you need his number, he's the best in the country). I'm grateful to the man who came along and decided to make these water machines into affordable home units, and cut the cost down to less than 2 percent of their original cost. I'm grateful to the people who invented PEMF, and the people who showed it's good for the liver, and all the people who talked about it and made us realize we needed to try it.
I'm grateful to all the companies that make supplements, and also the people who reviewed them on Amazon, so I could see what other peoples' results were. And I've been very grateful to all the people who've gotten machines, who have shared their stories and feedback with me. It is really uplifting to hear the stories and it makes my heart feel the kind of joy that I never was able to get while working in an office. And also, thanks to the people who've read this blog and given me positive feedback. It definitely helps. Oh yeah... and thanks to Blogger and Google for giving me a platform to share this kind of information with the people who need to see it.
I'm also hugely grateful to the people who gave us hope that we could turn this ship around. Dr. Paul Haider was one of the most encouraging people. It was really hard to find hope sometimes, but it was something we desperately needed!
I wrote about the important of hope, in this blog post. We're all soldiers, in our own way. I'm posting this video below, because I listened to this song many times over the last 2 years, and it's really inspiring, so I'm dedicating this to all the caretakers out there, and all the people who work hard to help make a person better. Keep up the fight, people. There is a lot you can do to beat cirrhosis.