O. Transplant Evaluation and Road to Recovery

O. Transplant Evaluation

During May 2009 I asked my GI for a referral for a transplant evaluation. At the time I knew my MELD score was below that required to get on the transplant list but I thought it was worth trying to get a step ahead and get evaluated so at least I was ready should I get ill enough to need a transplant.

The MELD score is an interesting and often baffling thing! Model for End Stage Liver Disease is what it stands for and it is a score system derived from the results of three blood values. In theory it is meant as a predictor of 90 day survivability though I have yet to understand how the numbers work.

In any case, it has been determined by UNOS (United Network for Organ Sharing) that the MELD score is one of the, if not the most important determining factors as to whether a patient is eligible to receive a transplant. Once the evaluation has been undertaken and the patient considered a suitable candidate for transplant, in most States, the required value to get on the transplant list is a MELD score of 15. Once a MELD score of 20 is reached a transplant can go ahead.

Now, I say in most States advisedly. In some States, especially California someone rewrote the rules. In California the average MELD score for transplantation is 26-33.

On a scale of 0 to dead, the MELD score starts a 6, ‘least’ ill and 40, ‘extremely’ ill. This gets confusing as the MELD score gives no indication of how ‘ill’ a person actually is! Some people with low meld scores can be extremely ill and require frequent hospitalization, others may live quite happily with MELD scores in the 20s, without experiencing any symptoms.

At my worst I was running a MELD score of 19 though by the time I went for transplant evaluation it had progressively lowered to 14.

My GI agreed to recommend me to be evaluated by the Emory Transplant Center in Atlanta. Emory has a very good reputation as a center for excellence in undertaking transplants.

Late on in May 2009, I received a call from Emory to check my information details and to find out how I was going to pay for the evaluation…….pay?…pay????….hmmm……did I have insurance?……no…..!

I told them I had no insurance and was duly informed that the transplant evaluation could cost as much as $26,000. Ouch!

As a cold sweat broke out, the girl from Emory was asking me about any type of insurance or funding I may have to show I could pay for the evaluation. After some head scratching I mentioned that I had just been approved for Medicaid at which point the girl whooped loudly! “That’ll do!” She then promised me that the evaluation would be started and completed in June which was awesome.

Very cool!! I knew Medicaid now covered my medical bills but never imagined it would cover transplant evaluation, but it did!

Now here’s a strange thing, after I got off the phone I went to check my email and in my inbox there was one of those ‘Email from God’ emails telling me not to worry about anything ‘cos God was in charge today and was taking care of everything for me! Strange coincidence indeed!

At the beginning of June Linda and myself set off to Emory for the first part of the evaluation. I have to admit I was nervous, but the whole afternoon was surprisingly relaxed and almost an anti-climax. A wonderful nurse emptied one of my arms of blood, filling 23 sample tubes with the stuff! If you are not keen on needles or giving blood this is not a great experience. After that was done with there was an ‘interview’ with one of the junior transplant surgeons who went through my case notes and asked a load of questions.

And that was it! I was asked to make an appointment for 2 weeks out and when I returned for that appointment I got the preliminary results. My MELD had reduced to 12, so there was no way I was going to get on the transplant list. Instead I was told to return for an MRI and then go away until I became sicker! I was also told to return on an annual basis for further tests unless in the interim my MELD went ballistic.

The other thing I was told and this is going to be a subject of a blog in due course, was that I had to attend AA meetings for a minimum of 6 months in order to be able to get on the list in the future. I protested vigorously! By that time I had been alcohol free for about 8 months but this fact mattered not one iota to Emory. They needed documentary evidence that I hd attended AA. Not I stress, medical evidence that I hadn’t been drinking, but documentary evidence that I had attended AA meetings.

I thought it was ridiculous, my GI thought it was ridiculous when I told him and the whole requirement is utterly ridiculous in the first place.

I still seethe, but never mind I will give vent to this in a future blog!

So, that was my experience with transplant evaluation. The complete evaluation which includes financial, psychiatric and post transplant support issues were deemed unnecessary at this stage. I never did get to see the results of my MRI either!

I never went back to Emory either.

I never needed a further evaluation for during that month of June something else happened to me which was to change my life beyond any and all reasonable expectations.

To be continued……..

P. The Road to Recovery

I’ve put off writing this particular blog entry for a long time now. I have had my reasons for this but now I think it is finally time to put keys to screen and write this chapter of my life.

It was June 2009 and I was undergoing transplant evaluation. This was not a happy time for me, I knew my MELD score would not be high enough to get me on the transplant list. I didn’t know if Medicaid would even cover the transplant costs (which are enormous), but at least they were covering the evaluation costs.

I was losing weight, a lot of weight, every month I was losing about 5lbs of body mass and I was approaching a meager 120lbs. I was eating pretty well, but no matter what I ate or how much the weight readings kept dropping inexorably.

It didn’t take a rocket scientist to work out that another 6 months or so of continued weight loss would see me at a point at which survival would become difficult and my body would start feasting itself on any spare muscle I had left. Including my heart.

I reckoned I would probably make it through that Christmas but life after then would be measured in weeks rather than months…….

When we are sick we are always looking for that magic bullet, that eureka moment, that ‘insta-cure’ that solves our problems and makes us better. Normally though this sort of thing only happens in crappy soap-operas or weepy movies. But there I was on a Saturday evening, doing my research as usual, looking for answers, trying to find different ways of asking the same questions to get different answers, when I came across an article from a web site I had never visited before.

The article was very readable, written in terms that conveyed meaning without hiding behind medical jargon.

The article was called ‘Alcoholic Cirrhosis as a Syndrome ‘.

The article put forward the notion that Alcoholic Cirrhosis was not actually a disease and certainly not a fatal one, but was in fact a ‘cluster of reversible deficiency diseases.

The article talked about how rare cirrhosis is, even amongst hard-code alcoholics and how the symptoms of cirrhosis are actually the symptoms of other (mainly vitamin) deficiency diseases. How the symptoms talked about in today’s terms were known about hundreds of years ago and called different names. How medical science was failing to grasp that these symptoms were treatable and had been for many, many years. This was not new science, it was old, known and understood a long time ago.

Where modern medicine talks of Ascites, in bygone days it was known as Dropsy – a condition of malnutrition. Where modern medicine talks of Hepatic Encephalopathy our fore-fathers knew it as Beri-Beri. A condition caused by malnutrition. Chronic wasting (Catabolic wasting) or Cachexia is not recognized other than as a symptoms of Cirrhosis. Nor it it recognized as a treatable symptom of many other fatal illnesses. No effort is made to treat  chronic wasting and people die as a result of it.

As I read this article I became more and more excited. Here was an article not only describing my condition but also suggesting to me what needed to be done to treat my ‘diseases’. The fascinating thing about this article is that it suggests that rather than trying to treat cirrhosis as a single ‘mass’, it needed to be broken down into it’s constituent pieces and those pieces treated individually.

The treatments the articles suggests are nothing more than simple vitamins and minerals – nothing obscure, all readily available at any pharmacy and none of them expensive.

My Eureka moment had arrived!!!!

That night I posted my finding onto DailyStrength where I was a member of their Cirrhosis support group. I was convinced I had found the Holy Grail of Cirrhosis. All in all I think my posting received a luke-warm reception from the community which I found surprising!

Time and time again we get warned never to do anything or change anything without first consulting our Doctor. Never change diet or take any pills without prior consultation. Always abide by the unerring wisdom of the medical profession.

Well, I’m sorry, I was dying the medical profession seemed helpless to help me and (in any case) I had already gone against their advice and brought my ascites under control by making dietary changes. I was not about to kow-tow over my discoveries from this article.

I went through the list of issues I was facing and matched them against the suggested vitamins and minerals in the article. It turned out that I needed to be taking B-Complex, B12, CoQ-010, Calcium and Zinc and these were duly purchased for the princely sum of about $30. The most expensive was the CoQ-10 but being cheap I bough a no-name brand and didn’t pay the excessive amounts charged by some suppliers.

My diet at this time included a lot of milk, tons of apples, I think at that time I was into eating Gala and consuming about 8 apples per day.  So this combined with the Recommended Daily Allowance of my vitamins and minerals was my healthy diet though still consuming a lot of protein

Within 36 hours of starting my vitamin and mineral regimen, my weigh went up by 3.5lbs! Moreover, it continued to rise every day and the graph of my weight change was spectacular!

September came around and time for more blood tests and a follow-up visit to my GI. Bear in mind that this was just 3 months since starting my vitamin and mineral regimen. My blood lab results were fantastic! Everything coming back to Normal readings and my MELD down to an amazing 6. My GI couldn’t believe his eyes. ‘This just doesn’t happen’ he muttered.  He poked and prodded me and shook his head – I asked him if he didn’t know me or my medical history would he still classify me as someone with End Stage Liver Disease – His answer was ‘No’.

My weight, once down at a puny 120lbs had returned to 160lbs (I had been putting on 17.5lbs per month) and I was feeling great. I wrote in my journal for that day..

‘September 25th 2009 was a beautiful day. The two hundred year rain event that had flooded Atlanta was gone to be replaced by blue skies, warm temperatures and a rising steamy humidity. I walked from the doctors office back to my car with something akin to an inane grin on my face whilst muttering ‘Yes’!!! not so silently. Yes, I’d beaten it, Yes I was well and Yes I could finally get on with my life again.’

Often when life changing events occur we have no clue how to deal with them. That day was no exception and all I could do was to mouth Wow! silently and remember the words of my doctor saying to me that I no longer needed regular check ups except for an annual CT scan to look for liver cancer.

So different from nearly a year prior when a different doctor looked at me gravely and said ‘You have major liver issues going on” following on with “I suspect you have cirrhosis”.

The turn around in my condition was beyond remarkable. Almost beyond believable, but there I was, living the life and relieved of the fear of imminent death.

Now, let me put this into perspective. Cirrhosis is incurable. I have had and still have cirrhosis. Scar tissue once formed does not go away. However what had changed was my liver was now able to undertake it’s myriad functions more effectively. I believe the diet and the vitamin and mineral regimen had given my liver time to recoup, time to recover a little and enabled it now to work sufficiently well to keep me alive.

This article ‘Alcoholic Cirrhosis as a Syndrome’ saved my life.

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