A Catastrophic Event Part 1-4.

A Catastrophic Event – Part 1

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 2011 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 each 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.

Since writing this in 2013 we have found out that when Dere had his warfarin stopped for his Biopsy in May 2012 the hospital failed Derek seriously by not ever giving him clexane to bridge him.
He was admitted twice to hospital, once the day after biopsy, and once the day after he started back on warfari It is now believed by some medical professionals that the admissions were not for Sepsis (which was suspected but never proven) but most probably a lesser CAPS event.
The symptoms for CAPS and sepsis are very similar. The main difference is that Sepsis takes 48-72 hours to manifest. Derek became ill 2 hours after the biopsy and presented to hospital less than 24 hours after. He had been of warfarin without bridging for 5 days at that point with no testing of his INR until the morning of the biopsy, at which point it was dangerous at 1.2. He should ALWAYS be on clexane when it hits 1.8 (preferably before it drops below 2).
The hospital also believe Derek should have known about the clexane at the time of surgery. I call Bull s#$t on this. When they didnt give it and almost killed him in May, why would he know about it in September, especially when we had to ask what it meant that Southern Cross cancelled his surgery because the couldnt do the heaprin infusion during surgery and we had no idea what they were taking about. When we asked even the Anesthesiologist knew nothing about the need and went to investigate. If the Drs dont know, why the hell should then patient?
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………………………………….

A Catastrophic Event – Part 2

When I last posted, I was talking about the lead up to Surgery.

While we waited for a date for surgery Derek got prepared by getting his fitness levels back to where they were pre-Sepsis.  He had lost a lot of fitness while ill, so it took a while, but he managed it.  He was fit, well, feeling good, and keen to get the surgery out of the way.

We finally got word while I was at work one day.  I received a phone call from Southern Cross Hospital, to say that Derek’s notes had been sent to them to perform the surgery.

I thought it would be great going through a Private Hospital for the surgery and paid for by the Public system.  They gave us a date for Derek to go in for a Pre-Op appointment, where everything would be discussed, including what to expect pre-surgery, and post-surgery.

The following Monday I received a call from Derek.  Southern Cross had phoned him to cancel his appointment.  They were no longer doing the surgery, and had handed his file back to the Public Hospital.

When I asked him what their excuse was, it was because he was on Warfarin and the hematologist wanted him to have a Hepron Infusion during surgery, and they didn’t have the equipment, or the drugs to do it.

I admit, I was upset.  We had waited since June for a date, now it was cancelled.

Later that week we got a call from the Public Hospital.  They were scheduling the surgery, and he was to go to a pre-op appointment for surgery in about with them in three weeks.  Great, it was still happening.

We went to the Appointment the following week.  We were actually excited about the surgery.  We wanted the cancer gone.  The sooner he had surgery, the sooner he would be able to recover, and get on with his life.

At the appointment we discussed his antiphospholipid syndrome what was going to happen as far as Warfarin management was concerned.

There wasn’t a decision on exactly when they would start the Hepron infusion, whether the morning of surgery, or the day before so we were told to wait, and we would be contacted.

Derek was to take his last dose of Warfarin on Sunday evening, then just sit and wait.

The Monday before Surgery Derek received a call from the Hospital confirming he would be admitted on the Thursday afternoon, to be put on a Hepron infusion and monitored before surgery.  He also had to have an INR test to ensure his INR was <1.5 as this was considered the safe margin for surgery.

We took the Thursday and Friday off work, along with 4 more weeks.  We both took 2 weeks sick leave (so he could recover) and 2 weeks Annual Leave, so we could start the slow process of getting our lives back to normal.

Thursday 27 Sep 2012, just after lunch, we packed the car with his hospital bag and drove to the Hospital.  A little apprehensive, and little excited.  Talking the whole way about his recovery, planning what we would do to get him back to fitness.  Planning his walking around the house, progressing to walking to the end of the street, to walking to the Supermarket (15 mins walk there and back).  We worked on him being able to do that walk by the end of the second week at the latest.  Remembering that this was open abdominal surgery.

We were also a little apprehensive because he had Sepsis last time, so I was acutely aware I had to keep an eye on him when he left Hospital.

We arrived at the Hospital, and they admitted him to a room.  They put him in a 2 man pod, but both beds were vacant.  I asked if he could have the bed by the window as he would then have something to look at while he was stuck in bed.  They were more than happy to oblige.

A nurse took bloods, and gave him an IV line.  They didn’t want to start the Hepron until they had taken his INR.  An hour later the results were through, it was 1.2.  Definitely low enough to have surgery without a risk of bleeding (which was their main concern).

A nurse came in with an Infusion drip, and connected him to his first Hepron pump.  They would be checking his blood every few hours to make sure they weren’t giving him too much.

Late in the afternoon one of the Dr’s performing the surgery came around.  He had a group of trainee Dr’s with him.  We discussed the surgery, and the fact that he would be performing it along with the specialist.  I asked him how many of these surgery’s he had done.  He told me that they did  this surgery every week at the Hospital.  I then asked him again how many HE had done.  One of the junior trainees also emphasized my desire to know HIS track record, not the Hospitals.  He seemed to take offence at the question.  It turned out he had only performed this surgery 40 times and he had only just passed his Boards in the last 6 months.  He wasn’t happy with being challenged on his skill level by a simple spouse.  Tough luck.

Once he was settled in, and I was happy, I left him to go home.  He was safe in Hospital and we both needed a good nights sleep, to be fresh and fit for surgery tomorrow.

Friday 28 Sep.  In the morning I woke bright and early.  I txt Derek to see how his night went.  He had been woken regularly for blood tests but was ok.

I was nervous.  I wanted to get the kids off to school so I could get into the Hospital.

I got in the car to drive with the morning Peak traffic (can’t call it rush hour because it is the slowest time of day).  Every little thing annoyed me.  I ended up behind every slow driver around.

I made it to the Hospital in good time and spent the morning with Derek.  He hadn’t had breakfast, and wasn’t allowed Lunch.  That was fine.  I would go for lunch once he had gone for surgery.

1 pm a nurse came in.  She was stressed as they had phoned for Derek to go down to surgery, but nobody had taken a blood test to check his Hepron levels.  They took the blood, and the orderly came to take Derek to surgery.  I walked with him to the lift, said goodbye and left the hospital.

I went and bought coffee and cake and went to work to kill some time.  I then left there and went to kill more time with another friend.

4.00 pm I was back at the Hospital.  I hadn’t heard anything so I went to the Surgical floor and asked what was happening.  I was told that he had been in recovery for a while and would be up in the ward within an hour.

I sat in the waiting area reading for another hour then went up to the ward.  I was only there for 10 minutes when a nurse came in to say he was on his way up.

As he came in to his room in his bed I greeted him.  He looked very groggy.  He could hardly open his eyes.  I spent a couple of hours just sitting there keeping him company.  He woke for short periods, then slept again.  He didn’t feel like eating.

I finally went home, safe in the knowledge that he came through surgery well, and recovery would now begin.

Saturday morning I drove back into the Hospital, hoping to catch the Dr on his rounds to find out how the actual surgery went.

I managed it, and was there when the Dr came in.  It was the same Dr that I had upset the previous day.  I asked him about the surgery, whether the margins appeared clear, what they thought the long term prognosis would be. I also asked him about Rehab, to make sure I had a fully functioning husband some time in the future.  He was very uncomfortable answering any of my questions on that.  He gave a few very short answers, told us Derek would be discharged the next day and then left.

That day he was given his first Clexane injection since he had the DVT in 2010.  We assumed this was normal.  The nurse made sure he knew how to give himself the injection.  Derek let her know that he had given himself them for 2 -3 weeks when he had the DVT and he would be fine.

We were then educated on looking after the catheter bag and making sure we knew about getting him out of bed, to recover properly.

Saturday evening Derek had his first walk around.  We walked him to the Nurses station and back.  He felt good.  Not too much pain, not too uncomfortable.

A couple of hours later he took another walk.  He was doing well.  He was eating, he was drinking.  Things were going well.

I stayed later that night, until Derek was ready to go to sleep.  I then went home, safe in the knowledge I would be taking him home the next day.

Sunday morning I arrived at the hospital prepared to take Derek home.  He felt a little wobbly on his feet.  Tired, not great, but he had had surgery, so it wasn’t surprising.   I helped him have a shower and get dressed ready for discharge.

The Dr came in, and gave us his discharge notes, and a script for various items.  I had his clexane and made sure we have plenty of things on hand.  The Continance Nurse came in to discuss what was to happen with his cathater bag when he got home, and that he had contacted the Hutt Valley District Health Nurse as they were required to visit him on Tuesday to check on his progress.

I walked Derek slowly to the lifts, and we went to the car.  I put him on a seat in the reception area and went to get the car.  He wasn’t walking as I had expected, but again, it was only 44 hours after open abdominal surgery.

Monday 1 Oct
Derek got out of bed, walked around the house for a minute and then sat back in his chair.  He wasn’t feeling very well.  He was feeling worse than Sunday.  We took the day very quietly.  Recovery appeared slow, but it was only 3 days since surgery.  We would try another walk on the Tuesday.

Tuesday 2 Oct
Derek woke up with a temperature.  He was feeling ill.  He had gastric pains.  Not bad, but definitely uncomfortable.  We decided that, given his last experience with Sepsis, I would take him  to Hospital to be check out.  I was scared that he had Sepsis again, and he shouldn’t have a temperature.
They gave him Ciprofloxin and sent him home.  It was explained to him that recovery had it’s ups and downs.

Wednesday 3 Oct
Still had a temperature.  He had more gastric pain.  We went for a walk to the end of the street to see if movement would make him feel better.  He hardly made it.  It was very slow, he was very weak, and almost collapsed when we got him back to the chair in the Lounge

Thursday 4 Oct
Derek woke with the temperature again.  The gastric pain was worse.  He went for a shower and I noticed he had quite a bad rash on his back.  It wasn’t on his chest, but was everywhere that he had pressure from laying down.  He felt worse than the previous day.  I decided it was time to take him to the Dr.
I phoned for an urgent appointment with our Dr who thought he might have had a UTI.  He took a sample from the rash which was red, with small white tops.  It looked almost like chicken pox, but it wasn’t.

Things were going down-hill.  Who knew it could, and would, get worse………………………………………

A Catastrophic Event – Part 3

We pick up the story on Friday.  Things were going down-hill ………………………….

The only reason I know what was happening at this point was because I was told by some wonderful people on a Ladies Prostate Cancer forum, that I should record everything that happened with his treatment, and after care, for future reference.  I didn’t realise then, how important it would be in saving his life.

 Friday 5th October
Derek had an appointment at Urology at the Hospital.
His catheter was removed.  He had had diarrhoea for 24 hours.

We asked the Surgeon about the rash on his back. He told rash he didn’t know about rashes and just left it at that.  We then mentioned the bad gastric wind, pain, being unable to do anything.  He said that recovery from surgery was sometimes very slow with 2 steps forward, 1 step back.  We couldn’t make him understand that there were no forward steps, each day was a step backwards.
He told Derek to stop all meds.

 Saturday, 6th

Derek woke to a lot stronger pain in abdomen. He still had very loose bowels.
I gave him Panadine twice during the day for the pain. His stomach was becoming very tight and swollen.

 Sunday 7th:

I forced Derek to walk to end of street hoping that his wind would ease.  Each time he got up to walk around he would burp.  It was relentless.  But it didn’t ease the pain.  The ball of wind was under his ribs. He felt weak and dizzy when he stood up, he would have to sit down again.  He couldn’t stand for more than a minute or two.

The pain and swelling was so intense that I phoned a medical help line to see what I should do.  They told me to take him to an out of hours medical clinic for assessment.

His stomach was distended and painful to the touch on the right side.

He was given Omeprazol 20 mg 1 bd to reduce gas and told to go on a liquid diet for 2 days.  By this time he wasn’t eating, and was starting to lose weight.  He was also told to increase fluids and take panadole.  He also had indications of a throat infection (red and swollen, similar to the rash he had on his back.

 Monday 8

Derek would only get up to try and reduce the wind.  The omeprazole would work for a short time, but not completely.  The pain was worse.  He could not stand apart from getting himself to the toilet. He was now in bed most of the time.  He wasn’t even able to sit/lay in his chair in the Lounge.

 Tuesday and Wednesday were pretty much just a worsening of previous days.

 Thursday 11 Oct

Derek started complaining of Groin pain (described as “Like a stick being shoved between his scrotem and anus.”   It was bad enough to get him taking a lot more Panadine.  He could not get comfortable, he still had a temperature.

He had now developed a strange rash around his neck.  It was very red, raised and blotchy.  It stayed for several days.

He had an INR in the morning which came in at 6.5.  He was ordered to stop Warfarin.

 Friday 12 Oct

I took Derek to the Dr again.

We were sent for blood tests.   His temperature at the Dr’s was  37.8.  We kept giving Panadol, but it would not come down.  It rose to 37.9 an hour after taking Panadol.

His INR was down to 4.5

 Saturday 13 Oct

Derek went for another INR.  We left the lab and took the lift to the ground floor, walked outside to the car, which I parked right outside the doors.  Derek stopped before he got in the car.  He noticed a strange sensation.  He lifted his sleeve to see blood streaming down his arm.  This had never happened before.  Normally when he had an INR test, he would have a couple of drops on his arm and that was it.

Derek’s temperature continued to go up and down all weekend.

His Stomach was very tight, swollen, and painful.  The pain kept increasing.  He was completely bed ridden.

 Monday 15 Oct

The pain was at 8/10.  He Vomited at 3.30pm.   He hadn’t had any sleep Sunday night due to pain, high temp etc.

 Tuesday 16 Oct

He vomited at 3.30am.  Later in the morning he vomited again twice.

He described the pain now as 9/10.  I phoned the Dr for an urgent appointment.

I managed to get him to the car but it was not a good trip to the Dr’s surgery.  Every corner I went round caused major pain.  He could barely stay conscious.  He could not hold his head up.

The Dr examined him and said it was time he went to Hospital (finally).  I told him there was no way I was driving him there.  It had been bad enough just driving him to the Surgery.

The Dr agreed and phoned for an ambulance.

He was given Morphine and fluids during ambulance journey to Hospital.  By the time he arrived at the Emergency Department he described the pain as down to 5-6/10 (on morphine).

His stomach was very swollen by now, he had dry cough, and was barely conscious.  His blood pressure was very low, but his pulse rate was up.

They took a chest xray to see if he was bleeding into the abdomen and admitted him to the Urology ward thinking that it was all to do with the surgery.  He had a partially collapsed lung and possibly pneumonia.

I left late that night as I didn’t know what was wrong, and I was very concerned.  Derek looked very unwell.  He was in a lot of pain, he wasn’t drinking.  They put him on a drip for fluids, a drip for antibiotics and were trying to settle him in for the night.

 Wednesday 17 Oct

I got to the hospital in the morning and Derek looked worse.  His blood pressure was way down, his heart rate was up, he was now on oxygen and there were people coming and going constantly.

They decided to do a CT scan.  They couldn’t find any fluid in abdominal cavity.

What they did find was a Small amount of fluid on the lungs (plural effusion) and something in the lungs, which they thought was probably from the fluids being given.

Urology couldn’t find anything wrong on that side of things so they decided to call in some other people.

The case was being referred to General Medical for consultation.

I walked past the Nurses station at one point to see a group of Dr’s talking.  Apparently they were all there discussing Derek.  The list of Dr’s were:  Urology, Heamotology, General Medical, Infectious Diseases and Cardiology.

I heard a comment from someone who asked “Where was he diagnosed with Antiphospholipid Syndrome”.  I knew immediately that this was a problem, because it meant they didn’t know anything about his blood counts for IgG or Lupus Anticoagulant.

A female Dr came into the room and I immediately recognized her voice.  I asked her if she was the one querying his diagnosis and she said yes.  I told her exactly when and where he was diagnosed.  She admitted there was nothing on his notes (which there should have been because of his surgery), and she went off to check on the diagnosis.  We never saw her again.

 Thursday 18 Oct

Derek was deteriorating.  A General Surgeon Registrar came around at 11.30 Wednesday evening.  Derek doesn’t remember much of the visit.  All he remembers is something about a Heart Murmor and being rushed off to have something done.  He couldn’t remember what.  He is now to be seen by a Cardiologists as he didn’t have a heart murmer when he was admitted on Tuesday.  His Treponin T ‘s were elevated.  He had an Echo for Heart Issues.

He was moved to CCU due to concerns with his heart and his increasing TT’s.  They removed fluid from his plural sack for testing.  They were also considering pancreatitis as a possibility.  He now had Kidney issues as well.  They were failing.

They had noticed in one of his CT’s that his adrenal glands weren’t quite right, but they dismissed them as not crucial because he had:

• Heart Failure
• Partial collapse of one Lung
• Plural Effusion
• Worsening Acute Kidney Injury
• High readings of his Liver enzimes
• Splinter hemorrhages in his fingertips,

All Fluids were stopped as he was not processing them properly and he was begining to swell.

They changed his Antibiotic to vancomycin IV.  He was was taken for another scan of his heart, and an internal probe to see what they could find.

By this time he was barely conscious, not able to wake up.  If he paused to think about an answer to a question, he would lose consciousness and not know what he was trying to say when he came too again.

I was offered a chair to sleep in beside his bed in CCU.

 It was at this point that our GP phoned me to make sure I realized that he was probably not going to survive and I should be prepared for the worst.  Nobody else was willing to say it, but I knew the truth.

 Friday 19 Oct

Friday was a further few steps downhill.  He didn’t know me all the time.  He was taken for a Transesophageal echocardiogram (TOE) to see if there was an infection in the heart valves.  This came back clear so they couldn’t explain the heart failure.

When he came back from the TOE he didn’t know where he was. Disoriented. He tried to remove his IV lines as he thought he was home.  He thought he was in England, then at University.  When asked how he was feeling by one of his Drs his only answer was “I don’t have enough data for that” and he lost consciousness again.

GENERAL MEDICAL had taken over the case, but he remained on CCU.  He was also give a PARS nurse (Patient’s at Risk).  They are the ones that make the call to take people to ICU.  CCU wanted to keep him there because of his heart so the PARS nurse came in every two hours to monitor him.

They did a blood test and found that his Cortisol levels were dangerously low.  He was given IV hydrocortisone.

He showed some improvement within a couple of hours.  I was happy going home for the first time all week.

 Saturday 20 Oct

I arrived in the morning to find him slumped over in bed.  He looked terrible.  His temp hit 40 during the night.  His BP at 7.00 am was BP 84/56.

By 9.30 am it was 91/59.

He was very confused, could not sit up, going down-hill again.  He was given more HC.

 Sunday 21 Oct

I arrived to see a slight improvement. He was able to retain information

He continued to improve over the week, and was still receiving Hydrocortisone.

He was taken off the heart monitor, oxygen etc and moved from CCU to a general Cardiothoracic ward on Tuesday.

 Thursday 25 Oct

Derek was given a ACTH Stress Test on the Thursday morning.  This involved stopping the HC the night before.  They took a blood test at 8 am, then gave him some ACTH.  He started to go down-hill again.  40 minutes later they took more blood, then gave him some Hydrocortisone IV.  He improved almost immediately.

The results came back later that day confirmed Diagnosis of adrenal insufficiency.

We were also told that it looked like he had had a Catastrophic Antiphospholipid event.  He was visited by a Rhumatologist who ran some tests to see if he had Lupus.  She confirmed that he didn’t, and was referring him to another Rhumatologist at our Local Hospital.

 Friday 26 Oct

We were finally told that Derek could go home.  He would be on Hydrocortisone for the rest of his life, he had to be very careful of his APS, and he was to be moved to another ward for the weekend.  It was planned that he would have one last CT of his Adrenal Glands on the Monday morning, then discharged.  2 weeks after being admitted.

He was even allowed to go home for a couple of hours on the Sunday.

He still wasn’t well, his heart rate would not come down under 100 but they were sure it was just the damage from the CAPS event, and it would improve.

We waited for Monday’s CT……………………………………………………….

A Catastrophic Event – Part 4

When we left Derek, he was sitting in a new room, having been moved to a “transit” area awaiting release on the Monday after 1 final CT of his Adrenal Glands.

The ward was mainly for neurological patients (strokes etc), so there were no TV sets.  To save him from boredom, I took Derek’s Laptop in for him to use, along with some DVD’s to watch.

He spent Friday night in the room.

Saturday was quiet.  He still didn’t feel like doing much, so just sat around, watching DVD’s, playing card games etc.

Sunday morning, I drove in quite excited.  He was coming home for lunch, and then heading back in in time for dinner on the ward.  I took some clothes in for him to put on.

I got to his room, and he was having a shower.  He came out looking tired, but happy to be getting day release (he had obviously been behaving himself).

I drove him home, watching him very carefully.  I was nervous.  He still didn’t look great and had almost died on me.  I wasn’t taking any chances.  I made sure I had his emergency kit that we were told to put together.

We had a quiet time at home.  Derek sat on his chair in the corner with his legs up.  He tired easily, but that was to be expected.

After watching TV for a while, I decided it was time to get him back to hospital.  Once we got there  I tucked him in for the  night and left, knowing I would be taking him home the next day.

Monday 29 Oct

I arrived at the hospital that morning by 9.00 am.  Derek was taken down by wheelchair for his CT scan.  He was away for about half an hour.  While he was gone, I packed up all his stuff, got out his going home clothes, and prepared for a quick exit.

All we had to do (after 2 weeks of sitting by his bed) was wait for the Dr to come in and say “yes, you can go home”.

We waited…..

And we waited……

An hour went by, and we still waited.

Finally the Dr arrived.  He pulled the curtains around the bed for privacy (as they always do).

“Right” he looked at us both.  “As you know we were looking to see what state your Adrenal Glands were in”.

He went on to tell us about the fact they showed bilateral bulky adrenal glands.  Much as we expected.  So it meant he would probably have permanent Adrenal Insufficiency.

“So we can go home now?” I asked.

“We need to refer you to the Hutt Hospital to be monitored, and managed”

“So we can go home now?”  again I asked.

“We also had a quick look at some other things while doing the CT.”

“What about going home?” I am beginning to get a bit concerned at this point.

“I’m really sorry”

I looked at Derek, then at the Dr.

“There seems to be a problem with your heart”

“Oh, for f…. sake” was all I could say.  Derek just sat there, quiet.  We both knew what was coming.

“We need to do another echocardiogram.  It looks like fluid around your heart, which explains the high heart rate.”

We were told he didn’t know when Derek would have the echo, but he was to remain on the bed while he waited, it depended on how busy the bedside echo tech would be.

An hour later the Dr comes back in.  There is a significant amount of fluid around the heart (a dangerous amount).  He is also developing fluid around the lungs again because of the pressure on the heart.

Complete bed rest!  2 hourly ops, peeing in a bottle, not allowed out of bed.  He isn’t even allowed to use the laptop.

He was to be moved back to cardio as soon as they could find space for him.

The put him down to have the fluid removed from his heart on the Tuesday, but (and with Derek there is always a but) they have worked for 4 days to get his INR to a therapeutic level and they now have to take him off warfarin, give him a vitamin K mixture and use hepron to reverse their hard work they have done BEFORE they remove the fluid.

He also showed signs of tempanade on repeat transthoracic echocardiogram (TTE).

3 hours later a nurse and an orderly from Cardio arrived on the ward to escort him down to the Cardio monitoring ward.  They wouldn’t let him go on his own, with just an orderly as he was not in a good state.

They also had him back on a heart monitor.

Tuesday 30 Oct

They took Derek into a treatment room of the Cardiothoracic ward to put the drain in his Pericardial sack.  It is a procedure that is not often done in a calm, quiet way, so being a teaching hospital, there were a number of requests to observe them doing the procedure.

Once the drain was in place, they bought him back to the room.  He was conscious throughout the whole procedure.  The fluid began draining from his heart.

Now he had to wait.  They were draining it for 24-36 hours, to see how much fluid would drain.

Wednesday I arrived at the Hospital to see about a litre of bloody fluid in the drain bag.  There should be around 15-50 mls.  A litre was a lot more.

Thursday 1 Nov

The drain was taken out on the Thursday.  It was a very long tube, and they simply cut the stitch holding it in place, and then started pulling.

They moved him into a side room with less monitoring, and informed him he  would be in over the weekend because they wanted him on a Hepron infusion for 2 days while they put him back on warfarin.  All things being equal he would be home on the Monday.  Hmmmm. We had heard that before.

Saturday 3 Nov

I arrived at the hospital to have Derek tell me that his heamoglobin was low, so he needed a platelet transfusion.  Just after he told me about it, two nurses came in with a bag of platelets.   He still had the Hepron infusion in his left arm, so they put the blood in his right arm.  He lay there with an arm stretched out on both sides of the bed, stuck, while they pumped both products into him.

Tuesday 6 Nov

They decided to wait until Tuesday to do another TTE.

Thankfully there was no more buildup of the pericardia effusion.  All being well he was finally going to be released from hospital the next day.

And so the worst is over.   He was released on 7 Nov.

 Now for a new path.  That of the Addisonian.