Clinic Today

Today was clinic. It was bittersweet to say the least. My weight is up to 119, I’m a heifer lol), but my lung function went down. My FEV1 is 38% and my FVC is 66%. I was 45% FEV1 on October 28^th. That’s down 7% in less than 2 months. Not good especially when the numbers are low to begin with.

This is where the bittersweetness comes in to play. Because of this my doctor thinks it is a good idea to not work anymore. I told him I want to stop work and go on short term then long term while I wait for SSDI to kick in. I had thought maybe he would have to exaggerate a little to get me on it; turns out no exaggeration needed. If I were to continue on as is I would be back on IVs in a month most likely. If not sooner. Though I do get to attempt Colistin again after Christmas. He said to start it when I feel I can and to monitor myself. At any point if I feel tight I should call in.

I told him about Boston and he gave me the name of a doctor that he is very close with at Mass General. So I will be looking into getting my records sent to him in January. I have one more appointment with Dr H on January 20^th. The Dr he recommended is Dr Lapey. He is exactly like Dr H. Therefore, I will be able to have a smooth transition and it will be like I didn’t move. Dr Lapey is older like Dr H so I would need to look for a new dr in a few years but who knows if I will need a CF dr then. I might be at B&W for transplant by then who knows.

All in all it was a good visit. I got my H1N1 shot and a prescription for 7% saline and regular .9% saline since THEY DISCONTINUED 3%!!!!!!!!!!!!!!!!! I can not by any means tolerate 7%. My airways spasm like a madman on 7%. So I will have to mix the 7% and .9% to make 4% roughly.

I was going to talk to him about getting the glucose tolerance test but I am going to wait until I move to do that. No point in me spending up to $1500 (deductible) on the test when I can get it much much cheaper when I move. So that is on my to do list. Now all I need to do is start packing and get moving haha!!!

December 23^rd will be my last day of work. I know its soon but I was planning on being up in Boston right after Christmas and it makes no sense to come back for a week ya know. So I will just start my holiday vacation on a good, free start.

That’s all I have for now. Happy Holidays to everyone!!!!!!!!!!!!!!!