Karen Rachal
Forum Replies Created
-
I had parrots for 30 years. In 2011 after a car accident, I had a chest X-ray. No problem. In 2016, I had another chest X-ray in the emergency room. No one told me about the fibrosis. Not the er doctor or my pcp. It was Christmas Eve and I should have read the discharge paperwork. At my follow up with my pcp, he didn’t mention it. I was diagnosed with IPF in 2018. My pulmonologist prescribed Esbriet. He also said that I wasn’t a transplant candidate. Two years later I was trying to get into a clinical trial. I changed pulmonologists and this one sent me to be evaluated for transplant. He also said I had to get rid of my parrots. It was such a hard decision. They were family members. They talked in both our voices. I wasn’t accepted for transplant and if I had known I would be turned down, I never would have let them go. The second pulmonologist diagnosed me with chronic fibrosing hypersensitivity pneumonitis due to bird exposure. The damage to my lungs is extensive.
-
My pulmonologist tells me my progression is minimal so I try to keep up my routine. Unfortunately my routine is now walking 1 1/2 miles a day followed my a pulmonary rehab video, followed by a two hour nap. Two other days it is a workout at the gym on resistance machines, followed by the rehab video, followed by a two hour nap. I still cook dinner and do laundry, but that is about it. I wish they would let us try some of the drugs they use for other diseases that they are testing pulmonary fibrosis. I would rather die trying than die waiting. I have been turned down for transplant and all the clinical trials that I have tried to get into.
-
I don’t talk about my appointments unless I’m asked. I don’t usually tell anyone but my husband thatI have an appointment. I quit because if I said I had a good appointment, everyone thought that I was getting better. I’ve told everyone that I won’t be getting better, I’m just trying not to get worse. I am not a candidate for transplant.
-
I turned over the vacuuming to my husband when I kept getting tangled in my tubing. I finally remembered the backpack I got for my OxygoNext. I had to sideline it when I broke 5 ribs. I drug it out today and managed to vacuum 3 rooms. So nice not to get tangled in the tubing.
-
I was diagnosed in Oct. 2018. I had a pulmonologist who told me that I was not a candidate for a transplant. I asked him about clinical trials but never got an answer. He did help me get on Esbriet. After two years, I found a clinical trial at Shands in Gainesville, Florida. I changed pulmonologists and he sent me for evaluation with a transplant team. At that time I was 74 years old. I met wit the team and was told I would be evaluated. That was the end of January. I heard in October of 2021 that they wanted me to do a 24 creatinine clearance test. Unfortunately the morning I was supposed to turn in my sample, I fell and broke 5 ribs before the 24 hours was up. Also my husband started to have medical issues. Since he would be my primary caregiver, I have decided not to pursue a transplant. I am now 75 years old and he is 77. I was enthusiastic at first because my oldest granddaughter got married and I so wanted to be a great grandmother. But when the evaluation never happened, I realized that it wasn’t going to happen. Also I was evaluated for 3 clinical trials, but was told that I didn’t meet the criteria they were looking for.
-
I have a 7 day pill box. I just count out 9 per day. That solved the problem for me.
-
Nothing has worked for me, so I keep a supply of alcohol wipes on hand.