[Penny Spano]

@anne-tarantino, @reglois @kayelmcv

Heck I can’t even get a couple of doctors to try and work together to help me figure all this out. My heart races just sitting in a chair. My blood pressure is all over the place from real high to all of a sudden it drops. If I start feeling hot when all this happens I just pass out it all happens so fast I really don’t have much warning. I can’t even get drs to see me because all my problems were caused by Covid. The drs that did take a test would come back tell me they aren’t sure what to do. I finally fought and fought to see some of  my medical records and I now have several autoimmune issues, rheumatoid arthritis, IPF, now I’m having heart problems. I started ofev to try and slow things down. I had nothing show up in January with my physical. This Covid has like activated every negative thing in my body and it’s all happening since August. I can’t keep up with it all. My drs won’t even tell me what’s happening I had to go hunt down my medical files to find out well I mean my son had to do it. Now it’s starting to effect my mind and eye site. I’m not sure what to do I have been turned away from most of the drs around here. The drs I do have don’t seem to care about telling me the truth or who to see for what. They have me referred to another then they say can’t help and refer me on. Finally I have the Mayo Clinic in Florida to take a look at my files and none of the drs or hospitals will send them to Mayo. I have been fighting for everything with this crap and in January I was hard at work now I can barely get out of bed to go to the bathroom. If I feel kinda ok my exercise is just trying to walk to the kitchen with oxygen and I still have trouble it takes me hours to try to get dressed get to a car to go to a dr. I’m trying to remember everything I might need on a road trip to Florida so anyone that has left town with these problems what should I take. My luck has been so bad I’m afraid to leave my house. Any suggestions would help really new to all this and not getting much help. Thanks everyone

[Penny Spano]

I am new to IPF. I got it after getting Covid. I also got a lot of other stuff my heart is now acting out. I’m losing my brain. I’m in a lot of pain and high anxiety. I just started ofev 100 mg twice a day. I’ve already be taken off one of the pills a day because I got a metallic poisoning taste and can’t keep anything down. What I kept down I can’t get out I haven’t been able to use the bathroom since I started the pill. I’m also experiencing vision problems. Did anyone go through all this? Or is it more Covid side effects. I’m very confused because I just had my yearly physical and I had no problems at all right before I caught Covid. Now I find out this disease is going to kill me quick if we can’t slow it down. It’s in like a maximum overdrive at the moment. What do you eat and drink? Everything I try isn’t working and if I can’t start keeping water down I’m headed back to the hospital. All the doctors I had except the pulmonary doctor quit on me. I’m having a heck of a time getting doctors to work together how are you doing it. I’m sorry so many questions I just can’t find any help. I got the ofev but I can’t find anyone to take my case to give me other medication I need. Any information would be greatly appreciated.