I didn’t talk about my last appointment (last Thursday) because I was getting very frustrated. I was also stressed to the max the week & days before.
I think I temporarily just broke after the whole rigamarole with U of Maryland. I was just done. I wasn’t feeling good, in fact I felt so short of breath that morning I really did take my nebulizer medicine even though I usually don’t. I knew it would be out of my system before the breathing test.
I actually did better this breathing test had a rebound, so we didn’t log it. Could have fooled me I felt ragged as all hell too. Could be a fluke, but maybe it’s the pulmonary rehab helping my numbers.
Part of me was depressed because I knew that my score wouldn’t change. I was worried it wasn’t high enough.
I was tired of all of it.
When I told my doctor what happened with U of Maryland he changed his mind & said he was going to send a letter to Johns Hopkins. He didn’t suggest another region entirely like going to Emory or Cleveland Clinic & I didn’t ask. He probably thinks I might have a decent enough shot if I am on the lists of both organ procurement organizations (which I will be if Hopkins accepts me) versus being listed in two separate regions.
He said his main reservation was that they had gotten more conservative with the patients they select. But he still must feel it worth a shot because he told me to call there for an appointment.
This might be doable because I know Hopkins won’t make me supply my own oxygen & it’s still in Baltimore (like U of Maryland was).
I took a week off from scheduling anything.
I had to. I had to clear my head a little. It was just all too much & I needed to forget all of it. This week I had one blood draw and focused on my rehab & then other things totally not healthcare related.
I also feel better after talking last night with another friend with my disease (who is post transplant & has helped me along the way). My score is good enough. I didn’t think it was, but it is. I’m not far off or not competitive like I had thought I was. Maybe for Columbia I would be, not for my center.
The phone just needs to ring. I just need to maintain & keep working on building up (which I have been).
My current oxygen supplier drivers are awesome. They gave me a booklet & it looks like there are some affiliate companies that might service that area of Maryland, so it might be easier to coordinate than I thought.
I’ll talk to them next week before I schedule to find out how much lead time they’d need to make arrangements.
But for the rest of the weekend I’m going back to tuning out.
Nikki, I feel the pain, the frustration and irritation in your words. Hang tough ………. and tune out and rest your mind and body a couple of days, but please leave your phone on. Sending prayers for strength.
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I always keep my phone on. I just am not not stressing over whether it will ring or won’t…but thanks DAP. Wouldn’t be honest if I just showed the easy, fun, & smooth sailing parts of the journey, would it? Somewhere out there, I know there’s someone else in my shoes too, tying their knot and swinging too…
Hi Nikki, I follow your blog and am continuously moved by your strength and bravery. You are one strong lady!!!! I also feel your frustration and pain and am praying for you to get a break!! My God you deserve it. I’ve been a bad asthmatic all my life and can relate to your breathing issues. I also suffer from other chronic illness and applaud your honesty and realism about your journey. Hang in there. I know that’s not easy by any means and keep us posted. That phone will ring soon. Tune out when you can and rest your body and mind. Sending prayers, Cathy from Toronto, Canada
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thank you so much for the kind words Cathy. I sincerely appreciate them. Thanks for sharing parts of your own journey with me. I appreciate that.