Friday, June 22, 2012

Home from the hospital and not at all happy, rather disappointed

I made it home from the hospital yesterday.  I did go in for surgery Monday morning and I got home last night. I guess I should tell you that I am not happy in the least by how things turned out, especially since I had to jump through hoops to get the surgery approved.  Before going into the operating room I spoke with the surgeon and the anesthesiologist making sure that all the details were right and we were all on the same page.  Surprisingly enough we wee all in agreement with what the procedure was going to be.

Now, you can imagine my surprise, disappointment and anger, when I woke up and found nothing had been done and I was still the way I was before I went under the anesthesia. The only thing I knew for sure was that I was very very sore.  I could feel that something at least was tried.  Long story short, apparently when the surgeon opened up my stomach from the breast bone down to the groin area, he found masses of scar tissue and adhesions and it took him 45 minutes to just get into my upper abdominal area.  He said it was like all my organs were filled into my chest cavity with cement and he couldn't risk operating any further because he couldn't tell the good tissue from the bad.  Needless to say, my chest was opened up and I am sore, and I have a massive amount of staples once again, I also still have both ostomies and that is rather depressing.

Depression is not one of things I am good at dealing with, it took me months to shake off the last bout of depression, which came about because we had to put the ileostomy back into place and that was in 2007.  Can you imagine how I am feeling right now, when I was told prior to being wheeled into the operating room that I was finally going to wake up and be a normal person.  Now, I will confide in you that I didn't actually think I was going to get away with a total reversal, I though for sure, at least one of the ostomies would go away and the other (whichever one) remained would be fixed so that it functioned properly and didn't cause so much pain.  Foolish me, I planned for the worst and hoped for the best and was disappointed by the out come and was totally pissed off. I yelled at my mother, the doctor and nurses.

I am not pleased with myself or the way I handled the situation, but now that I have calmed down a little bit,I can write it out rationally and hope to purge my system of the wayward feelings that are churning away deep inside.  So let's get on with it, shall we.  Because the surgeon was unable to perform the reversal surgery and allow waste products to be filtered by the whole colon, some other game plan has got to be put in place and very soon, to handle the excess toxins that my kidney's and liver are struggling to clean.  The most probable next step will be dialysis 3 times a week, while undergoing the year long interferon treatments for the Hepatitis C virus.  If the treatment of the Hep C is successful and the liver begins to function back at it's normal limits and with the dialysis also purifying the kidney's it is thought that those functions might actually revert back to normal as well.  The only problem I can forsee with the dialysis treatment is a further weakening of my immune system and opening me up to whole bunch of opportunistic infection and illnesses, but these should be minimal since my HIV viral load is once again undetectable and my CD4 count was at 720 shows that at least that illness is well under control.

Here I am listing out all the things that have gotten me upset and worried over this stupid surgery, and I haven't even go to the part where on Monday night when I got up to my room from recovery the doctor finally came in to see me and explained about how it seemed like all my organs were encased in cement and that extensive damage was sustained by each one because of the radiation treatments, and he went on to say that is just a matter of time before each one of these organs begins to exhibit signs of dying or just plain turn necrotic and cease functioning all togrther.  So I asked what did he mean by all of that. What he said to me is that under the best circumstances and if the surgery was performed as planned and expected he could say with certainty that I would have 4 to 5 more years of normal healthy life.  But, since it didn't go off as planned and each of the organs showed extreme signs of advanced radiation disease he felt pretty certain that with in the next 2 years max my body would be going through severe crisis and all my systems will fail and shut down.

Understand that I went into this surgery with the full understanding that it might not work, or that if it did work it was only going to be a short gap answer to a much larger picture, but I was taking the steps given to me to ensure that I would have the most comfortable quality of life for the next couple of years. See I knew that it is just a matter of time with me before I move on to the next plane of existence.  The radiation has been running unchecked through my body for almost 20 years and the damage has been getting more and more pronounced every year.  I was just hoping to have a little more time to spend with my friends and family.   As you can see by getting upset at the surgeon and the nurses and even my mother didn't help my situation in the least and it actually made me feel terrible for the way I treated everyone.

There is no fault here, there is no place to lay blame here.  What could be done was done and I have to live for however long I have got left with the consequences. I wish there was a way to wave a wand and make all of this go away, but there isn't, but there are major medical breakthroughs every year and who knows maybe one day soon they will find something that will fix me right up.  Until then I have to keep my head up, keep a positive outlook on life and remember that I have place all of this in God's hands and He knows what's best for me, so I should be patient and understanding.

I would once again ask that you remember my family in your prayers, because this is not something a parent wants to hear about a child at all.  I wish I could reassure my parents that I am going to be around forever, just look at my past track record, every time they have told me I was going to die, I managed to outlive their predictions by years.

As always my hopes and dreams are with you,

Uncle B