Before I start with the next part of my saga, it is important to stress that this is my own personal journey. No two MSA journeys are exactly the same. Some of the symptoms will be the same and the eventual outcome will be the same.
So... I arrived home with my catheter and bag, tired, weary, worried, however with great relief that the intense pain had vanished. Well not exactly vanished as there was still a certain amount of dull pain in my upper legs and inner thighs. This I put down to the trauma that my body had undergone the previous week. Once I am onto something new, in this case BHP, PSA, Prostrate, Catheters etc., and with a very enquiring mind, I cannot let go! The next few days were spent gaining my strength back and devouring all the information I could find on the internet.
The Foley catheter that Livingston Hospital used, was only suitable for one month, so once I had learnt how to tape the tube to my inner thigh and attach the bag to just below my knee on the inner calf, I was ready to face the world. Another hidden angel emerged in the form of a pharmacy assistant who tutored me on the necessary hygiene, disinfecting and everything else that goes with wearing a catheter. One of the challenges I had, was to learn to walk normally again. I looked like a wooden soldier, all stiff and upright. I suppose it was natural having a foreign thing attached to ones body and besides, I was scared that I would inadvertently pull the thing out! Again the pharmacy Angel came to the rescue, saying that I was way too tense and needed to consciously learn to relax. It did the job and I started looking, feeling and walking like a normal human being, although somewhat slower than usual.
Realising that time was moving fast and I needed to see a Urologist, I venture out to the PortElizabeth Provincial Hospital. I was directed to OPD3 (Out Patients Department 3) who attended to all urological matters, where I asked to see a doctor. This is when I realised I had entered a minefield! I was told that I needed to make an appointment and before I could do that I needed a referral letter from a doctor. The orderly at Livingston had omitted telling me about this and anyway I had not seen a doctor there. Immediately I made an appointment with a general practitioner that I knew. I explained everything to Russ and asked him to make an appointment for me. After a week and umpteen telephone calls, he came back to me saying he could not get through to the Urology Department and best he write a letter for me to take directly to them. Off I went back to OPD3 and presented the letter. A file was opened and I was told to take it to the "booking office" to make an appointment. The earliest I could get was two months down the line! Although I explained to them that I had to have the catheter changed within a week, they would not budge. Back to Russ and he changed the catheter for me, this time using one that could stay in for three months. He also prescribed a months treatment of disinfecting tablets and a course of antibiotics. During this time I became an expert in changing bags, keeping everything germ free and generally learning how to live with a bag.
Finally the day arrived for my appointment. I had been warned to arrive early as it was first come first served. 6am in the morning and I was around 30th in the line! By the time I was ushered to the Urology department, around 8am, the line had increased to well over 50 people. While waiting for the doctors to arrive (they were busy with ward rounds), the line grew and grew to over 100 patients by 10am. I was shocked. So many people with urological problems on one day. I was told this was the case for four days every week! One of the saddest moments was when I realised just how many babies, toddlers, teenagers and young adults there were in the line. One can easily accept the fact that us oldies have "waterworks" problems, but the babies and youngsters... it was heartbreaking. I had been living in a bubble. This was real life playing out before my own eyes!
Eventually I was called at about 11am to see the urologist. A young man, Dr. M who turned out to be my favorite doctor over the years. After a thorough examination and a barrage of questions, he diagnosed BPH (Benign prostatic hyperplasia - enlarged prostate) and decided to get blood tests done to check my PSA and for any hidden infections. He prescribed Cardura (Doxazosin) that relaxed muscles and helps the urine to flow freely. The catheter was to remain for another month until my next appointment. It was easier to get a relatively early appointment once in the system.
When I arrived for the next appointment, the catheter was removed and I drank about two litres of water to check if normal flow had returned. Yay! all appeared well although not a forceful flow, there was no need to catheterise! The Cardura worked a treat and I will be taking the drug for the rest of my life. The result of the PSA was 13.8 (normal PSA for my age is around 4 to 4.2) and I was booked in for the following month, to undergo my first biopsy, mainly to check for the possibility of cancer. The result was fortunately negative and I was booked for a normal check up in six months time. Life started to return back to a semblance of normality.
Over a period of three years I have seen various Urologists, Specialists, Consultants and the Head of department. Blood tests were done before each appointment and at one stage my PSA shot up to 31.8 and caused panic.The HOD Urology was convinced there was cancer and all in all I underwent a further two biopsies. The jury is still out on the matter of cancer. I had two further catheterizations and even did one myself at home in an emergency and feel somewhat of an expert when it comes to this procedure. I carry a spare catheter and the paraphernalia needed at all times.
Another upset was when one of my testicles blew up to the size of a tennis ball and I had to go back to Livingston Hospital for a sonar scan ( PE Provincial Hospital has a perfectly good, new sonar scanner, however the operator had passed away and has never been replace. It sits in its own room gathering dust!). All was well and it was an accumulation of fluid that would eventually be reabsorbed by my body. The doctors could not account for or explain the exact reason for the swelling or build up of fluid. I was also constantly aware of a dull nagging pain in my upper legs and pelvic area and a certain stiffness to my legs that the doctors said was caused by the biopsies. I was not convinced. Another development was the sudden and sporadic heating up of my feet and lower legs. Although only for a minute or so, they really get very, very hot to the touch and I put it all down to prostate problems. (As I sit here typing, my lower legs and feet have just heated up! I mentally think "My heater has just been switched on.")
I need to talk a little about the urology doctors and staff at the Provincial Hospital. They come and go and some have been there since I started my visits. Mostly, all are great people who work under simply appalling conditions. I have great admiration and praise for them. Understaffing and pressure is very evident. The maintenance of the buildings and equipment is shocking. It affects them and of course the patients. The heads of the provincial department of health all need to be sacked! The budget is there but not visible. No doubt corruption exists and many pockets are being lined. I also have a soft spot for Sister E. She has the disposition of a sergeant major but is empathetic, kind and keeps the department running as best as she can under the circumstances. She also manages to calm down 100 moaning and disgruntled patients. Over the years I learnt to be there at 4am in the morning to be 1st or 2nd in line. It usually helps, to get out as early as possible. Not only was there the doctor to visit, but also a visit to the pharmacist to collect the prescribed drugs. That is usually a two hour wait, again understaffing. Sometimes we get out at 4pm and if we are very lucky, around lunch time. An eight to twelve hour visit to see a doctor and collect ones drugs can be tiring and frustrating, however as pensioners and state patients, we do not pay a penny and are more than grateful.
On a routine checkup just over a year ago, Dr. M (my favorite urologist) asked me what was wrong! I laughed and said if anybody, he was the one who knew exactly what was wrong. He insisted and said to look at myself and repeated what was wrong. I looked down at myself, thinking perhaps my fly was open and I was playing "Flasher". I said I could see nothing!
He then asked, why was my hand shaking? I looked down and my right hand, resting on my knee, was shaking. Laughing I said, Oh that.. I have been shaking on and off for a couple of years and I cannot use my right hand to brush my teeth as the brush keeps on ending up my nose. Being right handed, I have been training my left hand to both brush my teeth and to shave. I considered the tremors as an old age thing.
Immediately, he picked up the telephone and called the Neurology department to make an appointment for me. He thought there was a possibility of PD (Parkinson's Disease). Dark Clouds were looming.
Advice: Please, all males, when you reach 40, have your PSA tested every year. All it takes is a prick and a few cc's of blood.
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(Next post... Dark clouds are looming - Diagnosing MSA)
Keep safe,
Neill
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Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, breathing, bladder function and muscle control. MSA shares many Parkinson's disease-like symptoms, such as slow movement, rigid muscles and poor balance. Treatment includes medications and lifestyle changes to help manage symptoms, but there is no cure. The condition progresses and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com
