I was wiped out yesterday. Still am today.  I don’t know why it takes an act of God to get anything done while a doctor is on maternity leave.

I know it’s no one’s fault. It’s just one of those stupid bureaucratic wrinkles that’s a bitch to get past when it happens. 

Recently my oxygen needs went up for exercising. (I know I mentioned that).

I also need to upgrade my equipment for sleep because I only have about a liter buffer on my present machine & I don’t feel that’s enough.  My needs rise there, before too long I’ll be topping that out. I don’t like not having adequate cushions on my equipment.

I also need to make arrangements with another company to have a home machine delivered to a transplant house in Philadelphia if I have a dry run.  I have that company on standby who has what I need but I can’t coordinate anything yet because I don’t have the most updated order to send them.

Nothing without an updated prescription/doctor’s order, which I understand. It’s the hoops I’m having to go through to get that updated that is putting me through hell.

My current prescription is too old.  It couldn’t just be updated either, because that would be way too simple.

I refuse to wait almost a month for my regular appointment with my lung doctor to come back from leave.

At that point, I might even need another update since I seem to be going up a liter a month.

I understand the rules, but my local doctor’s office was refusing to book any re-tests or visits with the lung doctor covering mine without the results of my last 6 minute walk from February down at my transplant center.

Unfortunately, I couldn’t pull these tests up in the transplant center portal.  I asked for a copy last visit, but no one could pull them for me to give me a copy then.

I knew it would come back to bite me & for sure it did.

I spent the better part of 3 days trying to play phone tag to get these results sent to me. I even mailed my transplant doctor directly even though I know he is only in on certain days because I can’t delay too long on this.

It was only when my transplant social worker stepped in that I was able to finally get the results & push my local doctor’s office to schedule me an appointment with the covering doctor to get an order for a retesting or update.

Then the local office calls me back to say I need to come in for an appointment because it’s too complex.  Well, duh.   I know in the end they’d tell me that.

I don’t fault the covering doctor, they don’t really know me.

I stayed in yesterday after my appointments & errands because I was so exhausted from dealing with this for the past few days. Part of it was relief that I was finally getting somewhere.

I did a few arm exercises with 3 lb weights on my home machine to get something done, but one set of them exerted me too much because I guess my arm swing went too high.

I guess it’s just seated exercises until this gets straightened out because any sudden movement is sending my oxygen levels way too batty (even on my home machine with my mask).  I guess it won’t be the end of the world if I only get in 3 days this week versus 4.

It’s really frustrating & annoying.  I know it’s no one’s fault in the end, but I get tired of being the constant go-between & my own medical record system because offices can’t seem to communicate with each other or tell me what they need without 2-3 calls each time.

Without that updated prescription I can’t get another supplier to take over to get me a Niov system or a higher flow home oxygen machine.

I’m just stuck in a holding pattern.

I’m screwed if I get a dry run transplant call because I can’t get a concentrator delivered to the transplant house without a current prescription either.

So this makes sense why I’m so nervous about this all the way around.

I’m hoping with the appointment this can be done & over with or I get what tests I need ordered to get it taken care of finally & put my energy into something else other than continually having to raise hell.

[When this posts, I’ll be on my way to that appointment.]

I don’t complain about much but this kind of red tape b.s. just annoys me because it’s coordination I shouldn’t have to be doing.

But if I don’t do it then nothing ever gets done on the doctor end since I’m dealing with 2 different health systems that don’t talk to one another.

At least going forward I know I can tag team with my transplant social worker for some relief.

Since I’m the patient too technically I’m really the only one right now that can light a fire under anyone’s ass…which I have been doing…for days.