Guess where I went today? If you guessed to the doctors then you're riiiiiiiight! I'll give you 2 gold stars for it and a cookie as a bonus.
So let's begin: I got 2 new prescriptions for Ventolin and Advair since I had 0 repeats for Ventolin and I’ve got 1 for Advair. She also wrote me a prescription for something called Zithromax which should help with the tightness I experience. It’s also an antibiotic. She wants me to just try it and see if it helps or not. If not, there’s no problem in discontinuing it.
I asked if there were smaller oxygen tanks available and she said most likely not, but it’s better for me to ask ProResp since they would have a better idea than she would. She said it’s not going to harm me if I don’t use O2 to exercise or anything, but it won’t benefit my either. It will take me that much longer to get things accomplished if i don't use O2 though...
She asked how my weight was and I mentioned I think I lost a bit this week but that it was most likely attributed to feeling nervous about the sleep lab, and that my appetite it back. She told me that when I go to my regular hospital this Thurs she may have one of the CPT nurses (chest physiotherapy) from the CF clinic to come down and try a Vest on me. A Vest is another mechanism that’s used in the States as opposed to a PEP mask. It’s literally a vest you put on and it vibrates and shakes so the mucus loosens up. If you ever got shot wearing that thing you wouldn't need to worry about it penetrating your skin. It takes the stress of forcing urself to cough everything up, away, thus decreasing the chance that you’ll vomit. I told her it’s only really an issue if I eat before physio or afterwards, b/c even after it’s done you cough for a good hour. She said that was ok then, but she’ll still send the woman down to see me. I said the PEP and hypertonic saline worked fine. Honestly, I know those Vests are really expensive and see no point in investing in one if I wouldn’t be using it for that long anyway. It's bad to say that but it's the truth!
Then I asked about setting up transplant evaluation. Before you can set up an evaluation you have to have a transplant assessment, where you meet with all the doctors who would be following you for the rest of your life. It’s pretty much like an interview that’s a couple of hours long, and you get a lot more information about transplant than you would anywhere else. She said it’s helpful to the patient and their family’s b/c it will help with the decision about whether to go through with it or not. I know I’ve already decided to go through it but I also know it will help ease my mind about things. The assessment is held so the doctors can determine whether or not you’d be a good candidate for a transplant. She said they would accept me. The assessment will help the docs lead to a decision about whether I need to be evaluated then, or to wait a bit longer. She said that they could feel that I’m currently too healthy and to come back in 6 months to see if things have progressed. Fair enough – that makes me feel better b/c it doesn’t make me feel like I’m racing against the clock. In the event that they do feel I need it, I will then be scheduled for transplant evaluation, and even then I could be considered too healthy and may be listed, but as inactive. Transplant evaluation is done at Toronto General and I would be an inpatient b/c it takes 5 days. She told me the assessment can be done at either Toronto General or via conference at the regular hospital i go to. I’d personally prefer to do it face to face so I can meet the people. So anywho, she will be sending a referral to TGH and I should hear back from them at some point.
So really, YES I DO NEED A TRANSPLANT but it’s not urgent, urgent, which makes me feel a lot better! I told her I would rather get the assessment and evaluation done sooner rather than later, and that I feel if I have gotten this worse since January w/o any infections, I don’t want to wait b/c who knows what, if anything, could happen. She actually smiled and said, “Completely understandable.” I think she likes me - finally!
As well, she gave me two things to give sputum samples in so the lab can see what, if any, gems i'm culturing. Yummy. I can take them to my regular doctor’s lab. She just wants updated samples since it’s been a couple of years since I’ve given her one, and it will also allow her to see if I’m culturing anything. It will also come in handy for the transplant evaluation. I’m glad this is under way b/c it will take a long time - blah.
So needless to say i left the appt quiet happy and not feeling nearly as desperate as I've felt the past couple of months. I rewarded myself with McDonalds. I was so preoccupied with my happy thoughts that I drove 7 streets passed the intersection I was supposed to turn at to get back to work, and when I finally got to work I sped into the parking lot, at the same time my boss sped out of her parking spot. We nearly drove into eachother. Luckily we didn't, and we just smiled at eachother and realized we were both equally at fault. Thank god for that!
That's it for the day my people. I hope this was informitive and that you generally understood what i was talking about!!
Over and out,