I finally had a chance to talk with Doctor today!!!
Fill you in on that conversation in a bit....Have I mentioned that I hate insurance companies??? Well I do. I take a medication that does a lot of damage so every once in a while the doc orders a blood test to check the levels....you guessed it...insurance company denies.....I call they say the need a diagnosis code...Long term use of medicine....10 years does equal long term....deny!!! The lab sends it to collection agency.....I heard nothing from them or insurance company so I assumed it was OK!! NOT...Called today they need doc to send a letter being more specific as to why he wanted the test. That will be done on Monday.
I am now using O2 at night....so I call the med supply company and ask if they have portable concentrators...easier to deal with then the tanks.....since I only use at night if I am away overnight I would need to take at least 2 tanks and then wake up in the middle of the night to change them out since they only last 4 hours.....we have concentrators...we will get back to you soon. Today they call....we can get you a smaller version of the one you have it only weighs 30 lbs....WTF!!!! I don't want to drag something that heavy with me when I travel....I want a small shoulder one like they show on tv.....we only give those to patients who travel and they are on loan only.....I explained again what I was looking for and they said...can you guess...we'll get back to you sometime next week.....So I am going to Harrisburg for 2 nights with no O2...I will survive but then will be ready to fight next week if they tell me the same BS!
OK....Spoke to Dr. A. today....we are going to increase the one pill from 40mg in the morning and 20mg at night to 40 and 40. Let him know if I get dizzy!!! Still am going to go get all test that would be necessary for transplant as we know that we are heading in that direction....who knows how long but I will meet with transplant team in near future after they review everything.... So I go to see a Pulmonary Doc next week. Doc A wants me to try and loose a few pounds...I am working on that...and must be doing OK cause when retaining fluid I only go up to about 224 lbs and instead of 228-230. I am doing some activity with our wii game system...things like bowling and golfing that I know I could not do in the real world...it gets me moving and if I tire I can turn it off and not feel bad like I would if I was paying $$$$ for a real games of bowling or around of golf. Steps and walking still are a little hard...but we are going to try a walk around twin lakes tomorrow.....I'll let you know how that goes. Next get sugar under control....been doing that and have been fairly level......liver function test....blood work so will get that done....also they saw some gall stones during heart cath so would like me to follow up with family doc on that...I have known for years that I have them and as long as they are not bothering me we will do nothing about them.
The biggest issues are to make sure the lungs are in good shape and over all health is good...which for a sick person I am relatively healthy.
So there you go... I will post after our outing tomorrow and let you know how I did....until then Enjoy your weekend.