I have been asked by several people, what actually happened around the process of the Catastrophic Antiphospholipid Event that almost killed Derek.
If you read “Our Journey to Addison’s” you will know already that Derek was diagnosed in 2010 with Antiphospholipid Syndrome (Hughes Syndrome).
In 2012 he was diagnosed with Prostate Cancer after having 3 PSA tests that were above normal, and increasing each test (which were 6 months apart).
In May Derek had a biopsy. He had to cease warfarin for 5 days before the biopsy, which was normal process for someone on warfarin due to the risk of bleeding.
This is fine for someone who is on warfarin for “normal” things such as Heart problems etc. Antiphospholipid Syndrome is different. Your blood clots more easily, and sometimes your immune system just “thinks” there is a problem, so clots for no true reason. To prevent this happening you take warfarin. Ceasing Warfarin for 5 days you expose yourself to the risk of clots.
Derek went for his Biopsey on the Wednesday. We both took Thursday and Friday off work. Thursday for Derek to recover, Friday for us to try and relax in the face of waiting for a diagnosis of Cancer. We had not told the children he was going for the Biopsy. We decided not to worry them in case it came back negative.
Thursday Derek woke up not feeling well. We thought it was just his body taking a little time to recover from the shock of the biopsy the previous day. We went to the Post Shop to register the car. While standing in the cue I noticed Derek not looking too good. I told him to sit down while I waited. Once done with that, we headed into the Mall, we had a couple of things that needed doing. I looked at Derek again, and decided we should go for a cup of tea to see if that would make him feel better.
Derek started going down hill. We finished our cup of tea and headed straight home, everything else forgotten. Once home Derek took to the couch. He started shaking, complaining he was cold, but he obviously had a temperature. I wasn’t sure what to do. Derek was all for phoning the Dr’s Surgery. I picked up the information we had been given at the Biopsy about what to do in certain circumstances after biopsy. It stated that if you got a fever, the shakes, or a long list of other symptoms, you should go immediately to Hospital. I pointed this out to Derek and we both decided that he was to get in the car and go immediately to ED.
We arrived at ED and I explained that Derek had had a Biopsy the previous day. They checked his temperature and immediately took him through to a bed.
Within the hour he was being given antibiotics IV. He was then being transferred from the local hospital to the main hospital in the City (which is where he had the biopsy). He was being taken by ambulance as it was suspected he had Sepsis.
They admitted him to Hospital to administer IV antibiotics. 36 hours after admission, he appeared to be looking a lot better. 24 hours after his temperature fell, he was discharged.
We were told that if there were any more problems seek help again. On the Wednesday we took him to the Dr as he was still unwell. He had another temperature, he was feeling unwell again.
The Dr phoned the hospital, gave his name, listened for about 5 mintues (with out saying anything other than Yes or NO) then said that she was just writing a note, and we were to go straight to ED at Wellington Hospital.
Even though it was pre-arranged, we still had to wait in the ED waiting room for almost an hour.
He was taken through to the back, and immediately re-admitted. They still didn’t know what the actual cause of the Sepsis was, but they were convinced that he had it again. He was admitted and given another Antibiotic (this time it was the top of the top shelf. Saved for “special people”.
2 days later he was discharged again, this time with a line still in his arm, as he was to continue receiving the Antibiotics at home via the District Nurse for another 3 days.
The day the antibiotics were stopped we went to the Dr to have him checked. While sitting there discussing the fact that he had Sepsis the Dr said “it doesn’t seem fair that you not only get sepsis but cancer on top”. You could have blown us away. We hadn’t been told until then, that the biopsy was positive.
Over the next month we started investigating our options for treatment. What was available through the public system, what was available privately (and the cost). How successful the varying treatments were etc.
By the time we went to the Urologist to discuss the biopsy results, we had already thought about the options, and which was our preferred option, given side effects, long term results etc.
We had decided to go for a Radical Prostatectomy. Open abdominal surgery. We thought we knew about all the possible outcomes. We knew he would have to stop his warfarin again. We knew there was a risk of another infection, the risk of bleeding during surgery, the risk of another DVT, or Pulminery Embolism, or, if worst came to worst, a stroke.
The chances of these were not that great (or so we thought). We knew the Dr’s were aware of his condition, so would know how to treat him.
We then had the great time of “hurry up and wait” that the public system is. We knew it would be within 6 months, but hoped it would be long enough before Christmas that he would be completely recovered from the surgery, and on his way to recovering from the other issues of a Prostatectomy.
And so we waited………………………………….