PPFE

Hi Cheryl, I have been tested for hypothyroidism and my test came back normal. I must say though that my younger sister was diagnosed with it, but she has had no lung problems to date. She is 5 years younger than me, so I will ask her to watch for it though just in case. On another note my family physician took a blood test yesterday to check for a possibility of mine being possably genetic, as my father passed away from congestive heart failure but never had any test done to see what the cause of his CHF was caused by, it was just assumed it was due to High Blood Pressure in 1996.

Dear Sheryl and other that are direct or indirect affected with PPFE.

My dad passed away last month 22 December 2017. Since there is not much known about his decease I will write down the time line of his events. He worked for more then ten years with asbestos and has work paper and everything from it still the government doesn't take responsibility because of lack of evidence. Maybe someone can help me with this in how that works and if you need to find traces of asbestos to prove this or that that won't be possible.

He got diagnosed with PPFE on February. Without a cause which i thought it should be called IPPFE but I could be wrong. The end of May after a lung infection he ended up in w wheelchair and had to have help for showering and putting on his clothes. We also got a hospital bed for downstairs and got 24/7 oxygen. The end of September he needed a lift for going upstairs. Everything felt like he was doing a Marathon. Always tired. Till December things went worse but in a slow pace. Until 3 days before he left. From this moment he had little energy left. Not enough to even push the button of the lift. He had to stay down stairs. He became delirious and it seemed like his soul was getting ready for departure although he wanted to stay. It can also be lack of oxygen but I like to see it rather this way. He wanted us the be close to him. In hindsight I can see now why. The last day he was to weak even to lean on his own legs and his organs started to fail on him. We tried nr 2 but no result. In the evening his temperature dropped 35 degrees and we called a nurse. She came and put in a catheter straight away and asked if we where all here. My brother still needed to come and changed his flight to the next day. The doctor gave my dad something to sleep. 7,5 mg instead of the normal 15 mg dose. I dint know what and even if it was mg but I remember the numbers. Just so he would make it to the morning. 

Unfortunately he passed away 2 hrs after the injection. He had no energy left to stay any longer. I wish he could but it would only be selfish. It is a great loss. We had a close and good relation. But I can say I'm glad I have had to opportunity to tell him all I wanted already some time before his departure and even on the last day.

I hope I can be of help for you who a are dealing with this by my story. If you have any questions  or remarks please let me know. 

All the best and kind regards,

Oscar Schenk

Netherlands 

 

I have not been active on this forum for several months as my daughter gave birth to my new granddaughter in September. They live with me so things have been extremely busy and I am doing my best to help out but I can tell it has taken a toll on me. I hope all of you are holding up okay.

Hi all, I haven't posted in a while just busy with family and work. I wanted to ask all of you if you are experiencing dizziness or light headedness? For me it has been getting more frequent and I stumbled tonight while walking the dog. I see my Pulmonaogist next week and have already sent an email explaining this new development.