High bilirubin & Coma

Update:

My hubby n I went to a TCM doctor that other patients recommended. He told that my hubby needs to correct his Low HB issue and his blood showed abnormalities. I think he meant for the bacteria infection. 

So he prescribed blood promote herbs and we went back to hospital. The trip was taking us great effort as my hubby had weakened so much. 

Good that my hubby’s swollen leg started to subside after several days on Chinese Herb. 

However, blood test showed that his liver is deteriorating very fast. Kidney also under great stress with higher creatinine.

But most worried matter is my hubby starts to sleep a lots. He could hardly moved and bedridden. He could not talk for like 10mins with me.

Doc told that the high bilirubin will eventually causes his brain damage as bilirubin is a toxin to body. He will likely lost his consciousness and fall into coma.

Having heard of that, I felt very much relieved. If my hubby could just pass on with coma, no pain no fever no nausea no vomiting no diarrhea, it is really good for me to accept for his death. 

We both witnessed the cancer patients who suffered the great pain by their death time, was indeed a traumatic one.

This early afternoon, I went back to the TCM doc for my hubby’s liver failure issue. He prescribed herbs and I quickly gave him 2packs as his absorption has compromised with the PEG.

He showed some improvement but I will need to monitor again.

Next mon will be critical for his blood test whether his body improves or further deterioration. I will then decide to bring him back home with or without TPN.

Sepsis No joke

I have been complaining to the ward person in charge. We thought that the Nurses here are undertrained in dealing with PICC line as they blocked both my hubby’s PICC line AND the port a cap!!!

After troubleshooting they only managed to salvage one lumen of PICC which for TPN and now my hubby has to be poked in every 3days to do the Antibiotics infusion.

And what’s next?

My hubby blood culture showed positive!! Another nightmare that will bury him soon!!

The bacteria will not likely to be killed by current antibiotics which is already a strong one.

What the hell is going in this ward?!!

I am now doing the TPN termination by myself.

They just took too long to terminate the line and the fluid within the line will no longer be patent!

That’s how they blocked each and every line. 

However, my hubby’s high fever episode lasted for few days continuously but stable for now.

So all doctor came one by one again telling us to give up and go home to wait for his time.

TPN doctor is the one who wanted to stop the TPN and they think that now giving anything won’t help but toxin to his body system. They think that he won’t be able to survive from the sepsis. 

I think TPN will be kinda palliative to my hubby’s condition. He might get hypothermia sometimes but everything went normal when TPN infused. 

If it is toxin, so are the morphine & fentanyl and why Doctors still giving to patient? 

We wanted to fight for the last fight and die from it rather surrender.

So the TPN nurse visited my hubby and shocked to see my hubby is picking up again. 

His condition is truly up and down. But that’s the typical condition of patient. If we were all good, we won’t be back to hospital!

If we were to heed their advice like January, my hubby won’t be alive now.

I really hope we could go home and never come back again. 

I must pray harder!

Fever bleeding fever bleeding

So for the past few days, we have been dealing with my hubby internal bleeding and fever.

Remember he had bleeding from the PEG? It stopped as we pumped in more propolis but the other abscess tube started to drain bloody fluid.

It is not excessive or technically called bleeding which I newly learnt from Doctors. It is a slowly bleeding internally. 

I suspected that the propolis did some killing on the tumour cells that caused it die off and thus fever induced. The protruding part on his tummy which is disease Mr C that slowly growing in size is actually soften up and the size is changing to a rounder one. I wonder Mr C is really dying off, but it is actually one of the body “part”, making it dying might cause problem too. I am bit lost and telling doc they won’t really believe. They can only convinced via results. So we need to prove them wrong by mon test results. 

As I noticed if I don’t give propolis, he won’t really have fever but the high bilirubin is now 3times more from the normal range and it won’t settle due to the blockage. The blockage is not within organ but outside that pressed on the tip of the tube towards pancreas and thus caused the swelling below the liver. The time when I pumped propolis in, the bilirubin was stopped from increasing. Haha, I am actually kinda enjoy on the experimental results I gotten from hospital blood test in 3days interval.

I am pumping in more propolis.

No more treatment from doc and in fact they are giving him up with no more medication for any symptoms.

Yesterday he had fever 39.5-40 degree C over 6hours time that causing the heart rate to shoot up to 180 whereby his usual heart rate at 100. Doctor was not giving any advise and I told the nurse to give IV saline to hydrate him. If doc won’t approve I will do it myself. Then only they gave and the heart rate slowly settled. But my hubby had been quite alert and he himself don’t really feel of the heat.

Fever n bleeding are both the indicator for final days.

His BP also up and down.

We started to prepare for the worst and try to keep him comfortable.

Daytime he could be very normal and stable but problematic at night.

I am counting on Chinese herbs and supplement to make him less symptomatic.

I am thankful to Buddha for having my hubby alive at this moment. 

I wish the good health for everyone.

Stay “alert”. Cheers

Back to Jan dilemma 

Hey so we had a great celebration for my boys and they both were having lots of fun throughout the party.

Well doc did not release my hubby reason his BP was recorded Low.

Last Friday my hubby Oncology doc visited with ultimate purpose just like Jan time.

She shared how the bile duct had blocked and caused high bilirubin. This issue is likely not going to get better but slowly causing liver failure. 

However Septic is still the main problem that my hubby would be dead from. My hubby has lots of source for infection and he has getting very weak. The tumour itself carries fungal and bacteria. 

Again she mentioned that how the team supported for home TPN despite his terminal condition and they had reached this far for my hubby.

I guessed that she will probably wanted to stop the TPN just like last Feb when surgery failed.

Well I told her we would need to monitor again as we couldn’t make any decision right now.

But in my mind I started to have thought of what she mentioned about tumour carries bacteria too. Then I googled about propolis and cancer. In fact there are studies for propolis that killed cancer cells and one if the Japanese medical oncology who recommends his patients to do treatment complement with propolis 30% purity for 30ml per day to improve the prognosis and treatment efficacy. I like the last sentence of his presentation goes “We have to live with hope”. 

So for the past 3days I had been injecting propolis into my hubby stomach via PEG even in his sleeps. His fever has been progressed from 38 to 39 deg C. There was once his heart rate went up high 170 and he started to be breathless. Doc called me at 12 midnight to inform that he might get cardiac failure and thus organ failure. I asked my helper to infuse lots essential oil to my hubby and asked him to keep breathing. Luckily everything settled after an hour. 

My helper told me afterward that my hubby actually asked the doctor why there was so many people and animal around them? They were shocked and they thought it was the hallucinations. Then my hubby forgot about everything the next day just he recalled he like flew to someplace, like a scientific places. We thought that he actually went afterlife and sent back because Buddha had called. 

Death in Buddhist is very important that we must not follow the wrong path for reincarnation. I did many ritual kind of stuff to hold on my hubby for not to follow the wrong path. We chant every night for his protection. I hope that he could follow only Buddha’s calling. 

We realised that after fever, my hubby is actually feeling much better. He has less pain, lethargic and sleep better. He has off the IV fentanyl and his vital has been improving. He could even watch his Favourite football game now! 

He himself felt that injecting the propolis has improved a lot. Just he complained for the sharp taste. 

He used to drink propolis drink (2ml a day) ever since Jan for fighting the infection and it does help with the prove of WBC count and CRP unit. But now we are injecting 10ml a day and I hope we could inject more. 

So hopefully mon blood results could surprise the Doctors and so they could continue to support us!

Waiting for 3 June

Well we will be having the birthday party for my boys who will turn 6 & 2 yrs old this year.

3 June 2017 would be the day which the boys would enjoy at their most with magic show & puppet show, balloon twisting, games and so on. 

I am making this party a grant & expensive one for letting them to remember that their daddy celebrated for them. 

I shouldn’t spend the money & effort as per what most of the people would say. But why not? We have loved one who sick, but that doesn’t mean we should stop celebrating of life event. I want the kids to know they have a daddy who is willingly to spend for them as long as they like it. They have a daddy who really love them lots.

So while we hoping for the red blood cell test to find active bleeding place in my hubby’s stomach, he got sign of infection. The liver test results shot up to the sky. We worry for the bacteria had attacked the liver to cause the damage. Or it might be the paracetamol that given too much.

I asked the nurse to stop the paracetamol last night before any doctor does. 

My hubby too starts to have Low blood sugar and some other electrolyte to correct. Everything seems to giving more problem. But ironically he looks more energetic compared to the admission time. He is sleeping better than before too. 

Well I think the blood work tells something like his body is having lots of stress and I afraid that the damage has done.

I could only hope for his recovery after the infection has been controlled. He just did a X ray and CT scan non contrast one.

I hope for good news in next few more day to welcoming our celebration.

Cheers!

RT (radiotherapy)

Phew!It was Super tensed to myself for stayed Day & night over these few days, seeing my hubby’s bleeding and vomiting.

I started to troubleshooting again. The vomiting disturbed his sleep lots and he vomited all bloody discharge from mouth and sometimes nasal way too.

So the culprit will be the PEG tube that came out causing the poor ventilation of the gastric juice and gas. I told doc but none of them could help and the specialty nurse was on leave. I texted her. She guided me and I pushed the tube in back to the marking level. 

Then, vomiting stopped! As usual, Doctors thought that Haloperidone works. It is never worked if the tube is not set correctly. We tried and had many episode on this already.

So my hubby started to sleep deeply and I gave him lots Lavendar + frankincense oil to calm him down. Few hours later, the bleeding stopped! 

So next 1-2days, he had no bleeding and he seemed more alert to recall for what happened for last few days but not that several time he was telling me that he is going off (dying) already.

Well doctor referred a Radiologist doctor to us for accessing his condition whether the radiotherapy could stop the bleeding side. 

I could finally rest my body and mind for at least few days.

Thinking back, my hubby has been quite lucky for living terminally without much pain and suffering like people who undergo chemotherapy and radiotherapy. I am following few stage IV cancer patient who also had HIPEC like my hubby. One of them had passed away 8mths aft surgery and she did 12 chemotherapy prior to the surgery. Another one just had the HIPEC this year Jan and her disease progressed to terminal in just 3mths time. Well the last strongest lady is still doing chemotherapy for repeated cycles. 

So my hubby has only ONE chemo, that’s all. I think that’s why his liver and kidney function had yet fallen with Long term antibiotics and TPN.

I am again feel gratitude and thank for the fact that he has lots of love and support from friends and families with minimum suffering. 

So friends, let’s stay strong. 

Challenging now

Opps, my hubby condition suddenly worsened by very Low blood pressure and high heart beat at 145-150. It indicates many things like dehydration or bleeding.

He got too weakened and we called ambulance.

So went back to hospital after discharge for 4 days.

After 1-2hrs in A&E, doctor called upon me as usual and she brought me to my hubby and to my shocked and horror, I saw my hubby PEG had lots lots of blood. The whole bag was filled with fresh blood!

Surgeon offered endoscopy to check the source of bleeding but with very high risk as his condition was unstable. It might be gastric ulcer or progression of tumour that penetrates the stomach lining. Both could be possibly exist at the same times and procedure is not going to do the life saving but just to drag on. As internal bleeding may come and go from time to time.

My hubby devastatedly told the surgeon he wanted to move on without anymore procedure. I was in deep sadness but I had to agree for his decision.

So doc will use only medicine and blood transfusion at most to stabilise his condition while got me prepared for the worst.

I talked to my hubby in tears that we are ready at all times and everything has settled for the kids and the families. We should face it bravely.

I kissed him for like million times. 

Then I called all families to get ready and each of them met him individually at the A&E. Until midnight, doc warded my hubby and gave the blood transfusion the next morning.

My hubby now is suffering lots blood loss symptoms and he felt better after blood transfusion. But he has more delusion and could not response at times while talking by himself.

I am wondering is he on his way?

Can the medicine stop the bleeding? The Doctors as usual spoken about how terminal his condition is and how amazed they are to see my hubby actually is still alive with very minimal procedures and medication.

I felt awful when he could not even talk properly with me. I felt like losing him and there is no way I could continue to keeping him.

I told Buddha please guide us and lead him through. 

We continue to chant but welcoming the day to come.