Never Stop Hoping and Never Stop Trying

hopeSo here we are, sufferers or maybe victims of this disease and everything in the garden is looking less than wonderful.

We are now suffering major symptoms and slowly coming to the realization that not much can be done for them medically speaking. 

Our friends are deserting us in droves and as for our finances? Well, that is going to be a very sore subject with many so I’ll let that one go for now. The memories are still too painful.

But we carry on researching, looking, examining every source of information that may help us. We do a lot of thinking. We do a lot of soul searching. We can never give up, we can always hope. We must have hope.

Here’s a story…

My father always used to say that if you were ever ill you were far better to see a veterinarian than a doctor on the grounds that veterinarians have longer training than doctors and are used to dealing with dumb animals!

I was always amused by this observation, never quite believing him until my own condition forced me to do research into all things cirrhosis.

One of the more interesting articles I found was on how to ‘treat’ canine cirrhosis. Yes, dogs get cirrhosis as well and the veterinarian dietary treatment was to feed the dogs ‘high grade’ protein.

I had terrible ascites. As I wrote in a blog at the time, “No one told me or warned me about ascites. My abdomen just  started getting bigger and bigger and bigger…”

Eventually, in agony I was off to the ER and eleven liters of fluid were drawn from me. The fluid resembled rather cloudy, lager beer!

After my first experience with paracenticis (the procedure whereby the fluid is drawn off), the period between drainings became shorter and shorter. At first I was getting drained every seven weeks, then every five weeks, then every three. Eventually, at the culmination, I was being drained multiple times in one week!

On a plus side, the procedure only hurt me once and the relief was always immeasurable.

I digress.

At the same time as I was filling up like a water balloon, something else was going on with me. I was losing weight. Not just a little bit of weight. I was losing body mass and steadily becoming emaciated.

Of course I mentioned this to my  specialist (GI) and we discussed the problem and I asked if it was okay to go onto a high protein diet. Now, depending on which way the medical winds are blowing, protein is either seen as a good thing or a not so good thing. The reasons given for this are at variance and it is not a debate I wish to enter into.

Suffice to say, after inspecting my blood test results, my GI gave me the go-ahead to up my protein intake.

And I did – a lot!!!!!

The fish and the chicken were not for me – No. I wanted blood!!! I wanted red meat!!! I wanted steak! If it wasn’t half a side of cow, I wasn’t interested!

I ate meat everything for every meal if possible. I gorged on beef, ground beef, sausages, burgers; I ate anything and everything to try to regain weight – but I didn’t. My weight kept going down.

Something else was happening though…….my ascites was going away.

My volumes of drained fluid and the frequency of drainings changed dramatically. At a certain point, because of a strangulated (encapsulated) hernia I had to be operated on to fix the problem (another story). At my post-operative meeting with the surgeon he remarked on my condition and commented that whoever was managing my ascites was doing an incredible job. I told him it was me!

After my hernia was fixed, I never got drained again. I never needed to be drained again.

I am an engineer and an analyst. I look for action and reaction, cause and effect. I need to explain how things work and sometimes, why they don’t. I need to understand and I need to be able to explain things – if only to myself.

So, here I was with a problem. My ascites had gone and the only thing that had changed was my diet. My MELD score had remained pretty much the same at around 16/17. I had to conclude it was the protein diet that had made the difference.

I posted my thoughts about protein on my web site and some other fellow-sufferers tried the same approach. I cannot say how many people had success with this approach, but I do know several who have tried the high protein approach and have had good results.

At around this time I also started getting feedback from other sources about the value of eating egg whites for the protein content and furthermore was learning that in other countries, IV albumin was the treatment of choice for ascites..

The connection between a diet of protein and relief from ascites seemed to be getting stronger and during this time my research continued unabated. As of today it would appear that a high(er) protein diet seems to be gaining favor with the medical profession.

To this day I have no idea if there is any proven connection between levels of albumin and an increased red meat diet, but I have to wonder whether iron present in red meat may have some indirect impact on the liver’s production of albumin.

Also, the connection between protein, ammonia and HE needs to be remembered. There is no hard evidence that the connection exists. Many people though will be put off a high protein diet because of the perceived risk of HE attacks. There are also reports that eating protein ‘makes the liver work harder’, though quite how this statement can be justified I cannot say.

But jumping back to where we started from, the medics have no cure for ascites. Sometimes if we are to move forward it is necessary to take risks and try different approaches. Also it must be remembered that changes to our diet can take some weeks to bear fruit (no pun intended).

This is why, as stated before, it is imperative to keep records of diet, weight etc and review these records to look for signs of improvement or otherwise.

Modern day medicine is incapable of providing the magic pill that makes us better and drives these symptoms away, but maybe something as simple as an increased protein diet may give us a solution?

All I can say is that it worked for me!

I’ve mentioned it before and I will mention it again in future posts, but diet and cirrhosis are inextricably linked. Diet is key to managing cirrhosis and protein is one of those keys.

To be continued…..

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