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...
Hi Leez,
ReplyDeleteSince finding your blog, every now and then I check in to read about the progress of your father in law. I hoped that all the optimistic and positive thoughts since April could materialize into a visible improvement in his health. Today, when the page loaded and I read the title of your latest post, my heart just sank. I am truly sorry for your lost – through your blog posts, I could sense that your father in law was someone very dear to your family.
I was rooting for your father in law. I thought that if he could get progressively better each day, that means there was a chance that the treatments were working. A chance that Dad and everyone else who has been diagnosed with PF could be cured one day. I didn’t realise how hard I was praying.
Take comfort in the fact that your father in law is no longer suffering and battling this disease. I hope you and your family are well and living each day to the fullest.
Happylungs.
Hi Happylungs,
DeleteThank you from the bottom of my heart. How I hope you need not go through what we did and I pray for you that things are much better for your family. Stay positive. :)
Hi Leez,
ReplyDeleteHope this message finds you well. And I hope that you don't mind me contacting you via your blog as i couldn't locate your email address. Dad's condition has worsened slightly since my last response to your post and we are now researching oxygen concentrator options. Can you share which oxygen concentrator your father in law was using and where the shop is located? Did you purchase this second hand?
Many thanks in advance for your help,
Happylungs
Hi there,
ReplyDeleteI got most of his equipment from Ecolife in Puchong. It is run by 2sisters who are very very helpful. We bought one concentrator and rented one. Yes, we needed 2 just in case one breaks down. In the beginning when my Fil was much better, he bought from a supplier we don't know and the service wasn't very good so I might suggest you give Ecolife a try. Sylvia or Boo will be better able to let u know which model is good and suitable to your budget. You might want to consider an oxy meter later on. It is what the hospital clips on the patients index finger to check the oxygen level in his blood. Meanwhile, stay positive and ask your dad to stay active.
http://www.ecolife.com.my/
Hi Leez,
DeleteThank you so very much for your response. I will definitely look into Ecolife. You mentioned in your blog that info/knowledge on IPF is very limited in Msia and I couldn't agree more. Doctors here are not agressive and open to alternative solutions compared to the US.
I'm trying to stay as positive as I can, and I know Dad is too. We are doing the best we can at the moment with the prescribed medication, but looking into other options.
Thank you for allowing me to contact you via your blog. If you would like to reply me privately, my email address is chex18@lycos.com.
Best regards,
Happylungs