It's been a month..

Looking back, his death is still sudden as ever. He entered the hospital fully aware of his surrounding, lucid, and even a little grumpy. Within a few days, he became unconscious and things went downhill very fast. The drama in his last moments is similar to that of movies. The monitor beeping, heart rate flat-lining and going all haywire, BP dropping and everyone in tears calling out to him. Unlike in movies, no medical officer or nurse came. The doctors got one of the sons to sign a document saying we should not resuscitate and it seems it signs away all their responsibility during the last hour. The doctor in charge was called but only reminded us what we signed, nurses steer clear of our room, only to send an MO (Medical officer) who came too late and knew nothing of his condition. It makes me wonder why are we in the hospital in the first place, I'd imagine it was to keep him alive during crucial moments like this where we have no idea what to do. How wrong was I. I looked at my husband and told him, "Never let me die in a hospital".

Funeral is for the living, and not the dead. These words are from my sister and how true. Nonetheless we are amazed by the people my father in law touched, stories we never heard, friends who came from a far and old neighbours who tracked us down after seeing the obituaries. Even though my father in law didn't leave instructions on he wanted things to be but I'm so very proud of him. During his sickness, he dug deep into his savings, making sure he paid us back whatever we helped him purchase. Even when we didn't ask, he wrote us a cheque once in a while to help pay off what he used during this sickness. After his death, we realised he had insurance he didn't utilise, those paid for the funeral in full. We donated the offerings we received during the funeral to his church which he attended for over 40 years. I can't believe in his death he did not burden anyone of us and is still a blessing in his very own way.

As time goes by, we needed to clear the many items that remind my mother in law of the sickness he went through. I went through his medication and managed to get a refund for those that they could sell and the chemist helped me donate the rest he couldn't sell to the hospital. The oxygen tank, concentrator and other medical equipment was given back to the shop who sold it to us so she could help us donate to needy families who come by her shop for equipments. We realised not all charity organisations need the same things. Some only need beds, some only need wheelchairs so we realise the best way was to leave it with someone we could trust to know who needed what and help us give or sell it away. I'm so glad to have met people during this journey who helped us and became sincere friends along the way. The private nurses, the different chemist I got to know so well and the sisters who sold medical equipments. God bless them as they continue to touch families like ours.

After the funeral, the family got closer together and it saddens me to see why it took his death for individuals to realise that nothing is unforgivable, nothing is worth staying angry over and not everything needs to be fair. If only he was around to see everyone at home, sincerely happy to see each other and putting others before themselves for once. I guess it's true, funeral and weddings brings people together. I just hope it last.

Psalm 23:4

King James Version (KJV)

⁴ Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

An end to the sickness..

It is hard writing this.. my father in law passed away 2 weeks ago in the ICU. He had been complaining of headaches and being very weak, so we got him hospitalized. By the second day, he's on the BiPAP machine which gives him oxygen via a pressurized mask. Because of the mask, they put in him a feeding tube and removed his dentures in case he swallows it. What we didn't know was that carbon dioxide is building in his blood. There is no machine or medication to remove it. On the day he passed away, the CO2 in his blood is 3 times that of normal human. That was one of the reason he had been getting headaches. We wanted to bring him home but there is no way to bring the BiPap machine into the ambulance. On the 8th day of hospitalization, he passed away peaceful while unconscious.

If you are going through this, think for yourself if hospitalization is what you want. During the 8 days in ICU was probably the worst. He could not eat, or talk through the mask, we could only visit him 2 person at a time during the 4 visiting hours. There is no TV, no one to talk to for the whole 8 days he was there. We might have gain 8 days more of his life in the ICU, but it was pricey.. difficult (we got chased out of the room many times by the nurses).. grandkids couldn't visit (only 12 years and above) and was generally a terrible experience. I understand the nurses are only doing their job, but I expect their job to include showing empathy. To this day, it haunt us to know his last few days was so hard, and sad. We couldn't move him out of ICU to normal ward or into the ambulance to go home.. because the BiPap machine needs to be plug into an Oxygen supply in the wall. By the 4th day he wants to go home, but there is just no way to bring him home without putting his life at major risk.

Life goes on. I am happy he is no longer suffering but I miss him...

The ending days.. maybe

We had a few scare recently. Some time ago when my FIL was having a sponge bath, his oxygen level dropped to the 40's. This was the lowest we've seen so far. Normal oxygen level in a healthy person is 99, at 92 your cells starved of oxygen starts to die and can cause damage to internal organs. For that few days we finally accepted the fact that he might have less days than we anticipated. We got his bank accounts settled, he spoke about what he wants done to his house, I gave him a haircut and we bought him food he has been craving for. For a few days his oxygen level lingered in the 80's and dropping to the lowest of 40's and 50's. Slowly somehow it stopped dropping so low, remaining in the low 90's and only dropping to 60's when he exert himself slightly. When I mean exert himself slightly, I mean him peeing, coughing, eating, talking and even laughing. He cannot handle the simplest of activity.

Recently he is unable to sleep and is breathless almost 80% of the day. His weight dropped from a very low 41kg to 38kg. We had to employ a night nurse to care for him as it is getting too much for my mother in law who is unable to sleep as well. Mentally he is relatively sharp except that he has moments he seems spaced out and takes a long time to know we are talking to him. He has requested to be moved to a hospital thinking that it would be better for him. We will be meeting his doctor next week to talk about this. I tried reading up on others who had gone through or taken care of family members with IPF and it seems going to a hospital may not be a wise decision. Doctors at the later stage of IPF have nothing else to recommend and patient usually end up being neglected. Many choose to come home to die. This is a wonderful link if you want to hear some IPF stories and be encouraged that you are not alone. Click on People's stories on the left bar.

http://www.pulmonaryfibrosis.org.uk/

Trying to convince my father in law to stay at home is going to be tough. Hopefully we can get a doctor to come and talk to him. We have asked a few and most rejected saying they have done what they can for him. Telling this to my FIL without hurting him is a big challenge. Let's see how the meeting go next week. Meanwhile, trying to stay positive for him.

my hate towards direct selling...

"I'm 100% sure this will help him.. This is an elixir (xian dan)!!" These are just some of the things people tell us. As of now, my mother in law has membership to most direct selling brands. There's vitamins, some new age clothing that is supposed to reverse any illness, chinese medication which came from some forest porcupine, home detergent stuff,  protein shakes and air purifier. I don't blame my mother in law who so easily believes them. That is what you become when you are desperate. Desperate to get hold of anything that might help. This is why I'm angry towards these so called friends. They pounce at this chance where they know you are desperate and will believe and try anything they say. They over promise and under deliver. They hardly talk to the patient or anyone else in the family for that matter, except the person who is paying. They do not even understand the sickness but they are trained to know what to say and make you part with your money. They are not health care professional but they claim they know better. They are professional salesman who undergoes training to sell ice cubes to the Eskimos. Let me say, most of them didn't work and some of them we can't see any positive effect or make no difference to what you can buy from your local market.

Steer clear of friends who say they want to come to your house and tell you about this new product that came on the market. If they don't know what is lung fibrosis and they are not health care professional then don't trust them. If they say they know, ask them who they know with lung fibrosis who got better after taking their elixir. If they are pushy, tell them you need to research it and ask your doctor. If they are truly friends,they will understand. Save the money to spend on healthy, nutritious organic food or even the occasional bak kut teh for the patient.

I never meant this blog to contain so much negativity but bear with me, it has become an outlet for me. There is no rainbow after the rain for us in this, just heavier rain and bigger storms coming ahead.

Tiring for carers...

IPF is tough for the patient but it is just as tough, if not tougher for the carers. I can only say one thing, take good care of your lungs. Now I just cannot understand people who smoke and kill themselves and people around them with their smoke. I just can't. Smokers might sneer at me but if you've seen someone suffer from lung disease and know that your action might lead to it and yet still choose to do it.. that just seems stupid. Our lungs are not made to need to smoke.. so why do it? Just in case you are wondering, my father in law do not smoke.

When you have diabetes, or high blood pressure or heart problems, you bring your medication along and you can do almost anything. Even patient needing kidney dialysis, they get plugged into a machine a few hours a day and you are free. With respiratory problems, and when you need oxygen, you are tied to an oxygen tank and you cannot do much. When you've reached a stage when the concentrator is not generating enough oxygen for you and your only way of maintain enough oxygen in your blood for your internal organs to function is to be tied to an oxygen tank, your quality of life drop so low. We have a huge tank (those people use to fill helium balloons in mall) and you can't carry that without 2 men help, will only last you 7 hours. The medium tank which I struggle to carry myself will last about 3 hours. The portable tank will last 1.5 hour. Imagine having to hook up to either one for at least 18 hours a day (and the rest of the hours on the concentrator). We bring him out for a walks around the garden and this involve the nurse pushing his wheelchair and someone else pulling the medium tank along. We have to be constantly aware at how much oxygen is left in his tank. Any further than the garden, we call the ambulance.

For the patient, it means he is constantly worried, afraid and anxious. He is afraid there is not enough oxygen supply, he calls his carer at the very instant he is slightly uncomfortable or even before he is uncomfortable. Even when there is at least 1 backup tank he calls us furiously to tell he has no oxygen left. When we are late, it makes him anxious. During major holidays where the welding factory we go to to have his tank refilled is closed for a week, he gets a nervous breakdown. If we tell him the factory is closed on Saturday, he insist we drop by just to see if there's anybody working there. There's time when he called to say he needs his tank refilled urgently only to find it is not even empty yet. Can you now imagine the agony of having to rely on an oxygen supply. We understand and he admits mentally he is not the same as before, and I suspect his oxygen starved brain is suffering and contributing to all these behaviors. We try our best to give him what we can but the truth is, it is draining and frustrating for everyone.

Please don't read this blog and judge me for my impatience and complaints. You need to go through it and I've meant this for people going through what we are going through so you can catch a glimpse at what goes on and hopefully be prepared for it.

Bed sore..

First of all, the nurse is almost heaven sent. She is amazing. She is strong, so strong she could lift my FIL with no problem. She is also helping him with his bed sore or pressure sore. He had one in the beginning and it finally got better when we got him a pressure relief cushion but unknown to us, there's new one coming up. The thing is, he is embarrassed to show us his buttocks so I had no idea what's going on there. My mother in law described it to me and I described it to the pharmacist who just gave me some cortisoid cream and camomile lotion. The nurse finally showed me the wound and told me what to buy for him. We managed to buy the DuoDerm CGF pads which you are supposed to cut up and put on the wound. It serves as a barrier to keep the wound dry and a cushion to help with the pain. She is confident it should be healed in a week. No wonder they call them angels.

Not only that, today my father in law went out of the house in months! The only time he leaves the house is to go to the hospital and the last time he left, he was pushed into the ambulance and got driven there. Aside from the hospital, he has not been anywhere open for a long time. Today the nurse pushed him on his wheelchair for a walk around the park and along the streets... she had another Indonesian helper to push the oxygen tank. We've always wanted to bring him out but we had no idea how and whenever we suggested it to my FIL, he is so worried about a trip out that he keep saying another day. I'm happy to see him living a life again. For him, a walk in the park.. is not a walk in the park.

New nurse and new bed

Yesterday we finally managed to get a full time nurse to come in 7 days a week to help with my father in law. This is very assuring for me. Numerous times in a week, we been called to go home immediately because he needed help changing oxygen tank, he is dizzy (occasionally because he didn't realise his tank has ran out) or just because he is out of breathe. The fear I get rushing to his house not knowing what awaits me and how I should handle it. Some time ago, I could still get myself ready to rush him to the hospital nearby, but with his reliance on the the oxygen tank, things gets really complicated. The small tank can only last 3-4 hours max.. and how do I carry him attached to the tank into my car... I have no idea. The only way is to call the ambulance if he needs help.

We've also finally invested in a hospital bed for him. It will be easier to change him and definitely more comfortable for him. We started of buying a sofa bed for him because he spends all his time at the living room and he is self-conscious about using a hospital bed. We thought the sofa bed would be good for him as we can lay it flat for him at night to sleep on and then put it up as a sofa in the day. As time goes by, he stopped using the sofa bed and uses the lazy boy armchair instead. He could press a button and have it recline to the point he was almost flat and can sleep. The problem with the lazyboy armchair was that it was deep and made it hard for him to move to a standing position. Changing his soiled pants was really difficult on the lazy boy and the leather seat makes it too warm for him and not a good choice for sitting the whole day in our hot humid weather. Seeing all the option we've tried, we should have bought the hospital electric bed from the very beginning.

The nurse told me my FIL may not last very long. Even though nobody likes to hear that but I appreciate the frankness and I need to make my own heart preparation. The swelling in his legs is getting worst, his skin is thin and has red patches everywhere, he continues to weaken but what saddens me the most is when I see his glazed eyes when I talk him. Mentally he is getting weaker and speaks constantly of death. I sense hopelessness and it's almost like he is lost.. not knowing what to do.... IPF is an extremely hopeless disease. We have ran out of option and I feel hopeless too.

looking at lung transplant

We sent his recent X rays to some doctors in Taiwan and China. The doctors from Taiwan do not recommend lungs transplant for my FIL, due to old age, his high blood pressure and diabetes. We haven't heard from China, my brother in law might be flying over this few weeks to see what option we can get. The reason why go to China it's due to the high populations. The doctors over there have more experience and practise with lungs transplant thus higher success rate. We met with the lungs transplant doctor in Malaysia but at that point, my father in law is relatively well and risking his life to have lung transplant doesn't seem wise. We were also hoping to manage the IPF rather than going for surgery. Looking back, it would have been a better idea to put him in the waiting list then. This is one of the many mistakes we made.

This is a hard decision. I can only leave this decision to my in laws. My father in law is keen and is willing to take the risk. My mother in law, not so. At this point it is still early as looking for an appropriate lung would be the hardest part. Let see if we have any open doors. Time however is running out.

Lost of bowel control

I believe this is the hardest and most humiliating for my FIL. He needs help with the most personal thing in life.. using the toilet. He has a urinal bottle next to him for peeing.. and a toilet chair for pooing. He needs help just to bring the urinal bottle to his hands so he can use it. One of the problem with IPF is that it weakens your heart and as a result, causes your feet and ankle to swell. To help reduce the water retention, he is given a diuretic medication which makes him pee a lot. This makes it very inconvenient for him. Many times, just being out of breath alone causes him to wet his pants.

Poo is another issue. He either has difficulty controlling his bowel, ending up soiling his pants or he has difficulty getting it out... needing an enema. Similarly, being out of breath can result in accidents. We try to let him go to the toilet chair at the same time everyday, hoping to help him train his bowel to go at the same time everyday. Going to the toilet chair, he needs to be hoist up and move to the toilet chair next to him.

We bought him adult diapers but it is something he has to decide if he wants to use. So far it remains unopened. Even though it takes more time helping him change and clean up (something my mother in law does) but not using the diapers also mean he is making effort to control his bowels and less chances of getting sores on his buttocks.

Being mentally alert and fully aware of the humiliation and the reliance on people around him is something I find it hard to see him go thorough. I keep at a distance whenever he needs to go, just to give him as much personal space and save him from the humiliation. At the end of the day, I'm only his daughter in law and at this point he is not ready for me to help him with this aspect. He lets me know when I need to look away.

Understanding this sickness and seeing how hard things are for my FIL, I have never seen him shed a tear, be angry at God, ask 'why him?', shout at any of us, complain or show his frustration. I truly respect him for this.

Stem cell

From the very beginning, we were told there are no treatments and there is nothing we can do about IPF. We read through all we can from the web and came to know about stem cell treatment.

http://www.adistem.com/idiopathic-pulmonary-fibrosis.html

The centre famous for stem cell treatment is apparently in Greece and even though my father in law (FIL) is fairly mobile then, we didn't think he can take the cold weather. We found they have a branch in Bangkok and went ahead to make arrangements to have it done there. The procedure there involves doing a liposuction to remove whatever fats (which is very little by then) he has at the abdomen and extracting stem cells from it. The stem cells are then put back into his body via IV drips. It took a few weeks of recovery.

We managed to find a doctor in Melaka who would do stem cells procedure from my FIL. This time they had to first extract his bone marrow which is then processed to remove the stem cells and further cultivate it. After a few weeks then it was transferred back into his body. The first time the doctor suggested to somehow input the stem cell through a tube from his thigh all the way up into his lungs. It was difficult, took a long time and caused much discomfort. The next 2 times that we did, we opt for it to be just put into his body via IV drips.

All in all, we did 4 sessions of stem cell treatments. The different methods is not really requested by us but more of what they doctor suggested he can do. The big question is.. did it help? Honestly, we do not know. There is no way of knowing. Along the way we met doctors who told us we've been cheated of our money and there is no prove that stem cells work for IPF patients. All we know is this is a chance and we took it. The only aspect of stem cell treatments that upset me was that it took time to recover. The procedure though not too complicated but it did means he was sitting down a lot resting after each procedure and that means he wasn't exercising. Exercising is very important for IPF patients to keep as much of their existing lung function. With that down time, it got harder and harder for him to stand up and walk and exercise. It was such a good excuse to not exercise. I just had surgery so I cannot exercise. After each stem cell procedure, he said he felt weaker. We asked the doctors and they said the stem cells takes energy to multiply and work so it is natural to feel weaker. My FIL have since requested to stop the stem cell procedure.

The good part is. We still have him. At one point we could see he had very good rosy complexion. He was growing more black hair. His weight goes up and down. He passed the 6 months mark doctors gave him and is still with us. Like I say, there is no way to tell if stem cell treatment worked for him and it is up to each one to decide if you want to go through it. It really depends if you can afford the procedure and what stage the patient it at and of course, what your doctor recommend. Good luck and stay positive.

Idiopathic Pulmonary Fibrosis

When my father in law first told us of his diagnosis, we had no idea what it was. I thought it is too serious a name to give to a persistent cough. We didn't look it up as we had a young family of our own to raise and any remaining time I have was spent studying for my post grad paper. He didn't look sick nor is he suffering, except for the occasional cough which really didn't seem that bad. This was 5 years ago. Today he has lost roughly 20kg, is constantly relying on an oxygen supply and is confined in his arm chair. The slightest movement leaves him panting and gasping for air. We went thorough many treatments, stem cell treatments, chinese medication, acupuncture, Prednisolone tablets to name a few. It is hard to say if any of them worked at all. This is a sickness where you don't know what caused it and there is no known cure except for lungs transplant. In Malaysia, we understand lungs transplant is not commonly carried out and the success rates is not known. (At least not known to us)

These are 2 sites I find some very useful information,
http://www.medicinenet.com/pulmonary_fibrosis/article.htm
http://www.pulmonaryfibrosis.org/

Many things I read on this 2 sites, we are seeing my father in law living it now. One advise I have is NOT to listen to just anybody. Many people are concerned and tried to help and their advise may not be wrong but it can worsen the situation. Listen to your lung specialist and ask as many questions you need to ask. Do not just take the advise that there is no cure and leave the doctor's office empty handed with no medication. Ask about medications even though it is not proven to work on IPF patients and request to try them. Listen to people who took care of IPF patients or those who actually suffered from it. Do not listen to the auntie from the pasar, or the people trying to sell you supplements from some direct selling company. Go to traditional chinese doctors who have knowledge of IPF and western medication and have treated people with similar conditions.

Lastly, this maybe a disease with no cure but it doesn't hurt to keep a very healthy lifestyle. Exercise is very important to keep whatever lung function you have. It is tempting to give in to the breathlessness and limit your movement. This is the last thing you should do. Continue to exercise to what your body can take and keep at it. Learn to relax and eat healthily. After all, we are all living on borrowed time.