Assist Shane with his 10+ years ongoing pain medical nightmare

It was heading towards evening on the 8 November 2009 . After an average Sunday lunch with the family, I was about to sit down and watch the Sunday movie on MNET. I had just finished some of the leftovers when my tummy started feeling very bloated, I tried taking some ENO, but it just seemed to make the problem worse. All of a sudden I was in excruciating pain and fell down to the floor, coming from the kitchen to the lounge. I barely reached my mobile phone which was on the kitchen counter at the time and managed to call my Dad with a speed dial number.If I had to look for the number I would not have made it, good thing I always set speed dials.

My parents eventually arrived and rushed me to Constantiaberg Medi-Clinic emergency and this is where things get very vague for me. I'm told that I was screaming at the top of my lungs until they sedated me. The next thing I remember was lying in a hospital bed in a ward looking at my family and friends who came to visit at the time, but not really responding, while under heavy sedation. At some point a doctor came in and said that I was not getting better with what they were giving me and I needed to be transferred to the ICU; this was my first of many transfers in and out of ICU' s, wards and hospitals that ended being an overall 8 MONTH! stint, half of which was in critical care. I was diagnosed with a rare case of acute pancreatitis with pseudocyst and was in and out of consciousness over the next 2 weeks. I was told that the diagnosis was very rare and that I was in the 5% of patients who receive this diagnosis, and within that 5% only 10% of patients survive. Needless to say that with all of this"good news" I was preparing myself for the end.

Next there were a couple of doctors standing around me, while still being sort of semi conscious, I overheard the prognosis being given to my parents and unfortunately they had no good news. One doctor said to me that if I ever drink another drop of alcohol, I will die a slow and painful death. But this was not the issue as my pancreatitis was not caused by binge drinking, in fact no cause was ever found. The issue was the pseudocyst that had formed around my pancreas which was the size of a rugby ball. It was making me too sick and the only way for them to clear it up, was to operate, but they could not operate because I was too sick, talk about a catch 22, this is more like a catch 88 million.

I spent the next couple of months in and out of consciousness in the most excruciating pain any human could ever feel. At one stage my doctor explained to the nursing staff who were administering my pain meds that pancreatic pain is the worst kind of pain to experience, and they must give me the medication on time, every time. I was poked and prodded so many times I lost count, I had two drips in my arms and a central line. I had all types of medication coming through those lines and eventually they put a gegenostic tube (feeding tube) in when they discontinued the mielie pap that is TPN, also for feeding. I have to say that watching them insert this tube under X-rays was very fascinating.

So there I was in critical care in loads of pain, CT scan after CT scan and MRI scan after MRI scan, test after test, just a multitude of things going on, waiting for this crust to form around the pseudocyst which they told me could take up to two months. It was the first Christmas and New year that I had not spent with my family and friends. I had become so depressed that Sean arranged for my, barely a year old Son to visit me in ICU.This was of course not allowed, however he made special arrangements for me to see him. It was such a tearful experience; however I managed to hold the tears back for his sake and his visits became a regular thing; which really helped with my overall mood. My birthday was coming up in February and a day before that, my doctors thought it would be a good idea to let me go home for a few days because I was spending too much time in hospital. I went home on a Thursday, with the next day being my birthday, and that very next day I was back in my doctor's rooms!

I will always believe that Dr Sean Rogers and Dr Mark Hewat saved my life that day. Sean had tracked down my surgeon at the time, Dr Danie Theunissen, with much difficulty, and told him that he would have to operate on me ASAP. Doctors have the thing that they don't give out their cell numbers to anyone. Sean did not have Danie's mobile number and was getting grief from his secretary. His persistence though prevailed, and he eventually got the number and they agreed that to operate was the only option now as my stomach was completely distended; no more waiting for a crust to form around the pseudocyst. So while this was being organised;somewhere between almost operating on me and Sean's rooms; Dr Hewat stepped in and said they need to have a discussion first. Dr Hewat had been in discussions with a leading pancreatic surgeon in South Africa at Groote Schuur Hospital. They had concluded that operating on me was still too dangerous and decided to go with a procedure called ERCP (Endoscopic Retrograde Cholangio-Pancreatography) where they put a scope down your throat, cut 2 holes for 2 stents to to placed from the stomach into the pancreatic area where the pseudocyst is, and suck the pseudocyst out.

For the first time in my hospital stay there was a little bit of good news but that didn't last long.The equipment needed for this procedure was not available at Constantiaberg MediClinic at the time so I had to be transferred to Kingsbury hospital where they had the equipment to do this procedure. The issue here was that there was so much pseudocyst to suck out, they had to do a few of these procedures, so I had to be transferred back and forth between hospitals, in excruciating pain every time they did it. During the first ERCP session they extracted 25 litres of fluid from the pseudocyst. It was all done and dusted after 8 sessions, with about 80 litres being extracted.

After the ERCP's things were looking up and I was transferred to a ward when my condition stabilized, which normally means you're getting better. This was true for the most part as far as the pseudocyst was concerned. I was, however, still in an awful amount of pain and they were keeping me medicated to manage the pain. We were now halfway into 2010 and things were looking a tad up. I was beginning to manage on oral meds and the doctors felt that I could be discharged. One cannot imagine what an amazing feeling it was being discharged from hospital, where I had spent in excess of 6 months. There were heartfelt goodbyes from all the nursing staff and even doctors that were not on my case.I felt like one of their colleagues and not like a patient. With my complete appreciation and admiration for the nursing staff and doctors at Constantiaberg Mediclinic and Kingsbury Hospital, I returned with bags and bags of chocolates for all of them, just to somehow say thank you for looking after me for such a long time. Don't get me wrong: no Hospital is perfect, but when you spend that amount of time in one you tend to see just how amazing they are.

So there I was discharged, free, breathing normal fresh air and just enjoying this new lease on life. My parents had practically moved in to look after me at home for about 2 weeks before I returned to work. My doctor sent a letter to my employer asking for me to work half-days for the next couple of months and then assess after that the possibility of going back to full-time. Fully understanding, my employer just wanted me to be well again. I was taking it very easy getting back into the as per usual life , however the pain was not getting any better it was just sort of stagnating on high. The pain medication that I took was schedule 6 classified, so there wasn't anything stronger that I could take orally.

Unfortunately the pain wasn't getting any better and I ended up going back to the emergency room and back to critical care.
One of the things that was still in question was the cause of the pancreatitis in the first place. When Dr Hewat came we discussed this.He said that one of the causes of pancreatitis are stones in the gallbladder and although they couldn't find any on the imaging it didn't mean they not there, so he suggested that we remove it just in case as apparently you do not really need this organ so much. So in 2011 the surgery was scheduled and done laparoscopically, key hole surgery. Recovery time was not long and eventually I was discharged again with ample amount of pain medication.

Back out in the real world and life continued, i was still working half days and resting as much as I could. Unfortunately we are only at the beginning of this medical drama and once again after a few weeks or so went by, the pain was just too much and I had to make another trip to the ER and ICU. It was at this trip in 2011 that Mark (Dr Hewat) decided that a distal pancreatectomy was our only option now. Again surgery was scheduled and a distal pancreatectomy was done. There were however some complications in this operation, they found, when they opened me up, that my spleen was completely destroyed by the pseudocyst and they had to remove it. They also had to cut off a little bit more of the pancreas than they initially planned to, as the pseudocyst had also done more damage there. The recovery time for this operation was longer than the removal of my gallbladder, so once again I had to spend about a month in hospital.

After I was discharged things were looking up, however I was gradually becoming weak and getting tired all the time. I had an appointment with an endocrinologist coming up as ,because of the pancreatectomy, I was now a Type 1 diabetic, and thought I would just wait until I see him. When I got to the doctor's rooms he tested my glucose and sent me straight to ICU as I was in Diabetic Ketoacidosis. After another hospital stint I was now a full blown diabetic on 2 types of insulin for the rest of my life.

As things were, even with the added diabetes medication, things were really looking good. My pain medication was decreased, my quality of life went up. I was getting back into work, getting back into sport, I was just getting back into life as a whole. While my medical drama had slowed down a bit, my life drama had kicked in. My employer was getting a little bit impatient with me only working half days. I had asked Mark to send a letter again describing my condition. Even though I was doing much better,my medication still knocked me out when I took them,so it was easier to take it at home and sleep it off than take it at work and then drive home. I am sure that if I had to put enough effort into finding somebody to lift me to work and back I would have achieved it but I had just gotten this new lease on life and I wasn't letting go.

When you spend that amount of time alone and not having anything to do, you spend a good part thinking about how your life has turned out and how you want to live the rest of it. I worked for a company called Optinet, which was the Naspers IT Services group company for all Naspers's Group of Companies. I had a very senior position at Optinet, and although prior to my medical drama I was your typical, climb the corporate ladder type person; after returning to work I had different views on what was important in life. There was a huge difference of opinion now in my professional life, and although it went on for some time I think it's best not to go into too much detail as it doesn't really add any value to the story. After all was said and done I asked for a severance package and they politely gladly obliged.

Being without a primary income, I invested in a business that was very fruitful in the beginning however its longevity was in question and I had to eventually pull out at a huge loss, again there's much more to this story but it doesn't add much value, the only thing worth noting here is the huge amount of debt I incurred due to the failure of the business. During this debacle in 2012, I was reacquainted with a primary school friend who turned out to be the love of my life and I thought, wow the universe is finally giving back to me. Things were just perfect, not completely perfect, but perfect for us. My pain was minimal and sometimes even non-existent. It was just so wonderful to be able to live again and share that with someone. I had to touch wood now and again just to make sure this was all real and not some figment of my imagination.

Then it happened in early 2014 probably in January of that year when my world suddenly came crashing down upon me once again! The pain was back! After almost 2 years! But why now? Nothing had changed and before this I was managing quite okay with the medication I was on. The problem now was that I was not on medical aid anymore as I had to reduce my expenses to make the little money I had last. I went to my doctor to ask him what my options are and he suggested I go to the GIT Specialist Clinic @ Groote Schuur Hospital (GSH) as he sits on a special GIT team there. He arranged the appointment for me.While GSH hospital is probably at the forefront of medical technology, it completely lacks the ability to service the amount of people that come through there.

The first doctor that I saw took a while to read my file that was sent by Dr. Hewat, and then put me on regimen of medication that he thought would take care of the pain. Over the next few months it was sort of more of the same, you would go back every month for the doctor to check on you and then they would either leave your medication the same or they would adjust it depending on what you told them, most of the time they had to increase mine because nothing they were giving me was working. During this period I ended up in the emergency room at GSH quite often, and they would sort of manage me and manage my pain until I was okay to go home again.

Eventually they had no recourse and decided to do an exploratory laparotomy where they went to look for the source of pain. Once again it was bad news, they found nothing. They suspected some things, but it turned out that it wasn't what they thought. At this point there was nothing else they could do and referred me to the Pain Management Clinic (PMC) at GSH, who assisted with my pain management after the exploratory laparotomy and then tried to convince me that the pain was all in my head. The PMC does exactly what its name implies, it manages your pain and unfortunately was again more of the same. Every month I went for a check-up and then they looked at the medication and adjusted it as necessary. At this point I was taking about 14 different tablets and mist morphine: 10ml, 6 times a day. This was the management of my pain. GSH serves too many people to place any individual care on someone, you need to spend days waiting and have serious patience. I didn't feel this is where my story ended.

I needed to get back onto medical aid and back to my own doctors so that I could get some sort of clarity as to what on earth is going on with me. So we looked at our finances and decided to cut some things so that I could get back onto medical aid. GSH emergency room was still my go to place as having pre-existing conditions requires one to wait for specified periods of time with any medical aid, with Discovery it was a year with the condition that I have. It didn't take too long and while being back on medical aid gave me peace of mind, it did not change the pain I was in and I still had to make periodic trips to the ER when the meds were just not enough. These trips always ended up in 2 to 3 weeks stays and completely stressed out my family.

Dr Hewat came around at one point during one of my stays. I had been doing some research on pain specialists in South Africa and I came across a Doctor Milton Raff. I asked Dr Hewat to do some due diligence. He obliged and informed me that he is the real deal. When I was discharged I made an appointment and after consulting with Dr. Raff, we decided to try one of his procedures called a Celiac Plexus Block which deadens the nerves and pain receptors in the body. He did say that it is not always successful. I was to have the procedure but before I could actually get there I was once again in the emergency room and booked into Constantiaberg MediClinic. I decided then to still go ahead with the procedure, I would just be transferred from one hospital to another and back. Even though Dr. Raff had said the procedure does not always work I was still hopeful because there was at least something that was being done and my pain was not just being managed. Unfortunately it did not work and we were back at square one.

This brings us to exactly where I am now and have been ever since. Dr. Raff has another procedure where an intrathecal pump is placed in your body, a catheter is then run into your spine and the machine pumps morphine into your spines intrathecal space permanently. While this is not a solution it would definitely prevent me experiencing all the side effects of the copious amounts of morphine that I take for the pain. The issue is that this procedure and equipment used in this procedure cost an arm and leg. Dr Raff is also a leading pain specialist in South Africa so his rates are astronomical and the medical aid doesn't come close to paying for it. In addition he also only accepts cash up front. At my last appointment with Dr. Raff he said that my case is discussed quite often in and around the medical boardrooms.

This has been the situation for the last three years, I have attempted to raise funds by other means to no avail. I have attempted to live with the medication that I'm on; unfortunately it renders me useless in today's life. I have tried going cold turkey to see if by some chance the pain has gone for good, but I just ended up back in the ER. Over the last 10 years I have dug a bottomless financial hole due to my medical condition and expenses. It's not only the money for the operation, its all the medication that the medical aid wouldn't pay for as they don't see pain medication as a chronic benefit because they don't see the pain as chronic, even though several of my doctors submitted chronic forms to them for pain medication explaining why I need to be on them. When you spend the amount of time that I have in and out of hospitals, the medical bills pile up and they don't stop! Along with all this I was losing the ability to earn an income as my various high doses of schedule 7 medication keeps me bedridden for most of the time and nauseous for the rest. I have had to relinquish all my business interests as I am barely hanging on.

I got engaged in 2013, to the love of my life, when things were looking okay for me. We had made so many plans about our lives together and would have been married by now however, currently I cannot provide a home and a life for her or get married. I spend very little time with my son Seth as his father is always sick, and even when we do spend time together he worries more about me and this is so unfair to him. The last 10 years for the most part have been completely draining, depressing and filled with pain. If it was not for my Fiancee and partner in life and my son, I don't think I would be here anymore.

I would like to take this opportunity to reach out and thank you in advance for any amount of donation, that would assist me in getting this operation and getting myself dug out of this, so far, bottomless financial hole.

Thank You

Regards

Shane