Wednesday, December 16, 2009

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 28th. 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 20th. 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 23rd 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!!!!!!!!!!!!!!!


  1. I'm sorry your pfts were down. Praying they come back up soon :)

  2. I saw Dr. Lapey for the gene therapy study. He is very bright and very nice. Good luck with the move to Boston and I hope you PFT go up.

  3. So sorry to hear about the drop in FEV1. :( HOpefully 2010 will bring happier lungs!

    GLad to hear you're going to get your OGTT soon :)

  4. Wishing you the best with this transition!!!

  5. Glad to hear your weight is up and I'll be cheering on your lungs to an improved FEV1 in 2010. Imagine how much time you'll have to workout when you don't have to clock in everyday?!?!?! :)


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