Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Amy , Just wanted you to know I'm thinking of my Amy doll and hoping for the best! Big hugs sugar. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Thanks Rita...I've been trying to keep my mind off things and boy my house has gotten clean over the past three days! I was even out mowing my " yard " today...can you call 2.5 acres a yard? I only got a bit of mowing done though as my lawnmower needs some serious service and the one thing I can't do is fix engines. I was hoping to get a call from the nurse today but alas didn't, guess I have to wait until Friday. I still have pitting type swelling in my legs, enough to be painful if I don't sit down and put my feet up every few hours...thankfully I work from home and can do that. :-) My hubby was pointing out the positives of dialysis to me yesterday...1) no more steroids so I'll finally be able to lose some weight. 2) 5 hours a day 3x a week all to myself! (I barely get 30 minutes now) 3) think of all the reading I'll catch up on 4)with my cross stitch frame I should be able to learn to stitch one handed easy enough so think of all the cross stitch I can finish 5) I'll be on the tx list and hopefully one of my live donors will pan out 6) no more worrying about reaching end stage.... and on and on... my guy can put a good spin on just about anything. :-) Amy G. Re: Amy Amy , Just wanted you to know I'm thinking of my Amy doll and hoping for the best! Big hugs sugar. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Oh Amy, the waiting is the worst part - don't ya think? My turn to be antsy is coming up soon too! My house will be getting a thorough cleaning too! I always try to put things in perspective - things could always be worse. It's my way of reaching acceptance. I'm sending positive thoughts your way and praying for stability on your end. PS Thank goodness for supportive spouses! You've got an absolute gem there. Love ya, Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2008 Report Share Posted August 16, 2008 Amy Time to be done with that Pulmonologist, not with doctors. Find a pulmonologist who responds and makes you feel more comfortable and informed after a visit. Find one you can talk to and get answers that make sense and you understand. A good pulmonologist, in my opinion, doesn't dismiss you with " this is the way it is. " They talk to you about each of the issues, why you should or shouldn't be concerned, whether its normal for someone with the disease and whether there is anything that will help. Just the fact his nurse was so poorly informed tells me they don't have a lot of PF patients. Doctors use to just Asthma and COPD tend not to understand that their role is helping us live with PF. I sure wish I could send you my pulmonologist. He would have talked as much as needed and you wouldn't have left feeling it was such a waste. Yes, coughing is a normal part of the disease, but I'll guarantee you if you search here or ask, you'll see many people who have found ways to make it not as bad. Just getting enough oxygen is step one. I hate changing doctors but I've decided that I'm not going to doctors who I don't feel good about. I have a pulmonologist who listens. I have a great primary and neurologist. I just got a nephrologist who talks a mile a minute but I like. My oncologist sits and talks and explains. My rheumatologist seems thorough and I like from a medical standpoint although if I didn't have my pulmonologist to really talk to I'd want a more personable rheumatologist. I go to a new gastroenterologist this week with regret. I really liked my last one but unfortunately I believe age is affecting his thinking and I no longer have the same confidence. He's a great guy, his nurse is great, but last couple of times he's been confused about my history and his advice has conflicted with itself. My sleep neurologist is fine. My psychiatrist listens but really I don't require much of him. My counselor is a godsend. My physical therapist is the best. Oh, and my regular surgeon I'd go back to anytime while my thoracic surgeon I might consider a change if another required. But my pulmonologist, rheumatologist, and gastroenterologist are not the same ones I started with. Find the doctor who works for you. > > I went to the pul today and as far as I am concerned a wasted trip. Anyway his nurse was wrong he said the same thing as everyone said (thank you) turn it up if you need to. I asked about a breathing test he said I did not need one. I asked about high co2 levels (38) said not to worry part of the disease. I have 40% lung volume. Please help with that one. So you see why I said it was a waste. I feel there is no sense in going to a pulmonologist unless I am having a big problem. The only reason I went is because the nurse said I needed to after I told her I would turn up the O2. He said the chest pain, coughing etc was all part of the disease. He said there is nothing he can do it is a slow suffering disease Wow like I did not know that. I am done with drs. it is like why bother. Thanks for listening. > Amy > Quote Link to comment Share on other sites More sharing options...
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