Funk

Went to the hematologist today. He said he definitely does not think their is a hereditary clotting disorder going on. Said it is localized to my lungs only. Wants to send me to a rheumatologist to check the auto-immune route.. thought we'd already been there. So we'll see. Beginning to feel like chasing a rabbit. Waiting on Dr. in Ohio to determine which would be the best Mayo Clinic to go to. Talked to a friend today who mentioned how they went to a Mayo Clinic and how they wish they had done that 5 years ago. They were able to find out about a certain issue in a short amount of time, that they had spent years/dollars trying to find answers at a local hospital. Kind of got me thinking-not to waste time and get to the Mayo Clinic and to NIH for testing/eval/studies. I do not feel like I have much time to waste. I have SO realized the importance of staying on top of your health information and following through on things. For example- today I went to the hematologist. They draw the WBC (white blood cell) count and then wait for that, then take you back to the Dr. He came in and we were talking and he had a bunch of "old info." He did not have the Mayo report of the biopsy. Apparently the referring Dr did not send it. This Dr. works off another system so they had no way to get it. They called the pathology department to no avail. So, ME THE PATIENT, calls the referring Dr. whose secretary states they gave me the original report and did not keep a copy? SERIOUSLY?? What Dr. office does that? She acted like I was in the wrong? Crazy. So then I call Ohio Dr. thinking okay, they have a copy they can fax me one. Had to leave v/m. So I called pathology dept. (yes the same people who lost the original report from Mayo for 3 weeks before I called up there twice to get it!) She had not sent it to be scanned into the computer system so no one could find it- she HAPPENED to have a hard copy of it there so going to fax it to the Dr. right then. So about 10 minutes, then 15 go by and NO fax. Dr. comes back to tell me they are still waiting on it. SO ME- THE PATIENT, calls back to this gal again. "Oh, it didn't go through." Seriously?? That is your job to check and make sure it goes through at the time of faxing it!!!! Aaaaaaaargh. Thanks for letting me vent. I just can not believe how this all happens.. and if it happens to me- you know very well it happens a lot and to others. What if they were old and didn't follow through or were too sick to put out the effort, or just didn't know how to get involved in their own health care. It really bothers me. Helps me to realize how to be a better nurse in general. So after all that, this Dr. says it may be idiopathic- meaning we may never know the cause of why this has occurred. I think I am okay with that. I'd just like to get through it :) I have been getting short of breath a lot lately- again, still trying to sort out what is psychological and what is real. I get dizzy and feel like I am just going to drop because I am not getting enough oxygen to my brain. I have been saying this for a few years now. It's not a fun feeling.. Kind of worries me. Still have to get some paperwork/CD's of MRI's/CT's to the NIH, National Institute of Health so I can go there and get evaluated and tested to try to see what is going on/get in a study. I may not qualify did I tell you? At least for the LAM study because of my other issues. Sounds like they still want to see me. Something weird too- this Dr. today said the only real thing to do with my lungs is to treat the symptoms, which really goes against all the studying/research I have read on CTEPH. Such lesson for the day is remember your Dr's are human and although they try, NO ONE is concerned with following through on your own medical case as much as you are- so stay in the game and do not take no for an answer. Follow through on all aspects and get the care you want and need. On another note, picking up some more hours at work, not only to pay these bills, but the kids are pretty much begging to go to Florida and of course I am not fighting them on that since I love the ocean/beach so much. I told them this time they would have to help out and put some of the money they are earning this summer towards that. So MOST have agreed. Will be interesting to see how it all pans out. Lastly, I can not at this time go into detail- but really need some serious prayer that the neighbors move and quickly. Soon enough I will fill you in- until then please ask the Lord to have them move. Thank you. Random observations - The very best days are these- when you make a difference in someone's day/life and you see the progress your children are making in their walk with the Lord.