We pick up the story on Friday. Things were going down-hill ………………………….
The only reason I know what was happening 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 diarrhea 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.
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.
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.
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 14 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 Kidney Failure
- 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……………………………………………………….