My leukemia's back.

[LittleLakePhil]

I'm sorry Rachel...I always had real good doctors....never had to deal with so much B.S.

 

[sourland]

I'm sorry Rachel...I always had real good doctors....never had to deal with so much B.S.

It does sound like people just don't give a scat! Would they treat their loved ones like that?

 

[Blooie]

I'm sorry this is happening to you, especially after the excellent news about the biopsy. You go ahead and vent any time you need to - we are your vent-ilation system! Hugs and prayers!

 

[3goodeggs]

- we are your vent-ilation system! Hugs and prayers!

Excellent!

 

[lazy gardener]

So, I've just decided I've been dealing with Doctor's offices too long

. I so wish I could "get better" and move on and not have this frustration!

Little rant, feel free to skip over this but I'll feel better venting......

I'm on this immune suppressant cyclosporine. It's a Big Deal, according to the folks at the University. When you're on it, you have your levels checked cause too much is a Bad Thing for your poor body, and too little means your new immune system will have free rein to kill you. So, up there I'd go in and get my level drawn in the morning, they'd run the test and call me that afternoon with my level and any dose changes. All tightly managed. So, down here I was tapering off until the graft vs host flared, then I was put back on therapeutic levels. Here, the office has to send the test out, they don't run it local. Okay, I can see that. It takes 2-3 days to get results. I can live with that. But last month, my level came back at 500+. Normal is right around 100. Did anyone call me? Nope. I called them eventually about something else and happened to ask. Then they asked the doctor and had me reduce my dose and recheck. Had a normal value. Then yesterday, I called cause I'd had it checked a week ago and no updates. Level is 63. Uhh, was anyone going to call me to increase my dose? "Well, you have an appointment with the doctor on Friday and he'll adjust your dose then". Seriously? Ten days after the level was drawn?

I'm just so, so tired of this frustration. I may ask the University team if my PCP can manage me from here on out instead of this local hematology office. I'm not sure what else to do to feel they're paying attention. I wish I could just get off this medication and get on with my life and not have all these doctors running my life.

And they wonder why my blood pressure has been so high

Okay, rant over.......

Reserved 5 Cornish Cross chicks for the 31st

. I should probably tell Honey about those. Or just lock the barn so he can't see the brooder......

Rachel, here's what I think you should do. Oh, I'm sorry... you didn't ask for my opinion, but I

, so gonna offer it anyways! You should have all lab results sent or called directly to you as well as to the Dr. office. I do that with all of my diagnostics since the time I got a letter from my Dr. office notifying me that my Mammogram was normal, when I hadn't even had it yet. It's helpful to keep your own chart.

 

[sourland]

Ventilation and support that is what this 'coop' is all about.

 

[ronott1]

Rachel, here's what I think you should do. Oh, I'm sorry... you didn't ask for my opinion, but I

, so gonna offer it anyways! You should have all lab results sent or called directly to you as well as to the Dr. office. I do that with all of my diagnostics since the time I got a letter from my Dr. office notifying me that my Mammogram was normal, when I hadn't even had it yet. It's helpful to keep your own chart.

We have an account that we log on to to see the lab results. It is very important to see the labs yourself.

 

[donrae]

The office has one of those on-line portals where you can log on and see your results. But, the doctor has to release them first. Yesterday my labs from 3/2 were released

. It's a good system in theory, but they won't release labs until they've been reviewed by the provider. So I guess I just get to be a nag.

good news, I'm going back to labs every 2 weeks and only seeing the doctor every other month. Things are really going well overall. They're scheduling another pulmonary function test. if it's stable or improved, I can try tapering off the immune suppressants again. That will ease a lot of this frustration!

We've got another house on our radar. It's at the top end of our price range, and just about perfect except it's only 1.2 acres. It's all flat and usable pasture, a really pretty piece of property, it's just smallish. but we keep reminding each other this isn't our forever place, it's a 5 year place. So maybe small is okay, we'll see.

 

[lazy gardener]

Not to mention, that if it's a 5 year place, in 5 years, you won't need a house as big, will you? Now, the yard and surrounding property... those needs are not likely to decrease.

 

[Blooie]

Praying that things finally head your way a little bit more, Rachel. I remember when Ma and Dad bought their first house...it only had 2 bedrooms because "in a few more years the kids will be gone and it'll be just us." Yeah, well, in the meantime they had 5 kids (1 boy and 4 girls) sharing the same room! My sister Linda said the night Ken and I got married and I wasn't in the "inner sanctum" anymore the room still didn't seem to grow any - they were still sleeping nose to nose but now there was only 3 noses in that double bed! There was an old couch in there and that's what Ron slept on. But as soon as the last of us left home, Ma and Dad ended up buying a bigger house - because now we were coming home with our spouses and our kids!