My leukemia's back.

[getaclue]

I have a renal ultrasound and renal Doppler next Monday. Should I maybe draw a dotted line around where my kidneys are so they get it right? We’re supposed to be able to trust these people!

If you're using the testing facility that Cynthia's husband used, tape pictures of kidneys to yourself, AND draw a dotted line around them. Sheesh!

 

[CindyinSD]

I have a renal ultrasound and renal Doppler next Monday. Should I maybe draw a dotted line around where my kidneys are so they get it right? We’re supposed to be able to trust these people!

Never trust without verifying. Seriously you HAVE to take charge of your care or you won't get any worth having.

 

[CindyinSD]

My first thought is that someone in the doctor's office accidentally ordered, or scheduled the wrong test. I'm not saying it could not have been a mistake on the part of the testing facility, but it may not have been their fault.

It most probably ISN'T the testing facility (not that test givers don't make their own mistakes--just not likely this kind) This kind of thing frequently happens with my hubby when he has tests done here. You have to know what your doc wants done (write it down) and make sure that's what's getting done.

Especially with blood work. They often fail to draw enough because they're either not paying attention or haven't been given the full list of tests required.

Anything you don't understand, ask. It's your treatment and you need and have the right to know what's going on & why. You shouldn't have to, but you really do need to keep on top of these things or mistakes absolutely will be made--and they could easily be very substantial mistakes.

 

[Blooie]

If it wasn’t for me noticing the words ‘renal insufficiency” in the report of my angiogram and investigating it, I could well be in much deeper trouble than I am now. My GFR has been dropping since 2017, and not one doctor thought it was worth mentioning. I went from a GFR of 90 to a GFR of 29, and not until I printed out that report and every lab I’d had done during those years, (getting them from the patient portal services), and dropped them on my doctor‘s desk demanding to know what it meant did anyone even raise an eyebrow at those numbers. By the time I saw the nephrologist, that GFR was down to 27 and my Creatinine was rising with every lab. Not one doctor thought that I should know. So instead of catching my kidney disease at Stage 1 or 2 when we could have done something, I didn’t find out until I was at Stage 4. And if I hadn’t pushed, would I have continued that steady drop until I hit that horrible GFR of 15, where the usual treatment becomes dialysis or transplant? It feels awful to believe that just because I’m old, I’m unimportant and disposable.

I’m a pretty savvy patient as a rule. I’ve become even more so since Kendra was born with all her medically complex issues. But it’s not my job to interpret lab results. I can ask what is being ordered and why, and I do. But interpretation of stuff like that should not be left to Dr. Google.

 

[Cynthia12]

My first thought is that someone in the doctor's office accidentally ordered, or scheduled the wrong test. I'm not saying it could not have been a mistake on the part of the testing facility, but it may not have been their fault.

I thought the same.

 

[CindyinSD]

What can I say? Some doctors just aren't very good at what they do. They get complacent and they don't pay attention and for the most part, they never suffer any consequences for their mediocrity. You're right--it isn't your job, but someone needs to do it and the patient is the one with the most to lose.

 

[Cynthia12]

Never trust without verifying. Seriously you HAVE to take charge of your care or you won't get any worth having.

You have no idea how many times I've thought this through...why didn't I ask this..why didn't I ask that...I'm usually better at these things. To be honest, this was a very new..ahem...subject for me. Still, I usually look up how procedures are done. Didn't this time. .

 

[Cynthia12]

If you're using the testing facility that Cynthia's husband used, tape pictures of kidneys to yourself, AND draw a dotted line around them. Sheesh!

Yep..

 

[Cynthia12]

If it wasn’t for me noticing the words ‘renal insufficiency” in the report of my angiogram and investigating it, I could well be in much deeper trouble than I am now. My GFR has been dropping since 2017, and not one doctor thought it was worth mentioning. I went from a GFR of 90 to a GFR of 29, and not until I printed out that report and every lab I’d had done during those years, (getting them from the patient portal services), and dropped them on my doctor‘s desk demanding to know what it meant did anyone even raise an eyebrow at those numbers. By the time I saw the nephrologist, that GFR was down to 27 and my Creatinine was rising with every lab. Not one doctor thought that I should know. So instead of catching my kidney disease at Stage 1 or 2 when we could have done something, I didn’t find out until I was at Stage 4. And if I hadn’t pushed, would I have continued that steady drop until I hit that horrible GFR of 15, where the usual treatment becomes dialysis or transplant? It feels awful to believe that just because I’m old, I’m unimportant and disposable.

I’m a pretty savvy patient as a rule. I’ve become even more so since Kendra was born with all her medically complex issues. But it’s not my job to interpret lab results. I can ask what is being ordered and why, and I do. But interpretation of stuff like that should not be left to Dr. Google.

My husband is now in stage 3 kidney failure. The Dr is keeping watch. He's had blood drawn twice within the year for it. Now my sister..is a different story! She is my mentally handicapped sis. Her GFR was down to a 7! She was so sick. I hadn't been able to make it to her appts. But when I did, and when during the second time I went, he was still saying..see you next appt. Well, I'd had it. I literally slammed my hand down on the bed with that paper on it. It made everyone jump...including my daughter in law that had driven me to her appt. Later she told our son that she saw the mama bear come out! I went on to ask him...why he doesn't think she's ready for dialysis. She couldn't be more sick. She was throwing up..what little would come up..in his office. I had to tell this..so called... specialist what was going on. Couldn't eat or drink without it coming back up immediately. Staying in bed all day because she couldn't breath right or walk far. Oh, I went on. He says, well...I guess we can start her on dialysis. She got a port in first. Went to a different home where there are CNA'S and nurses. Also a Dr. comes to see her weekly. When he read her report he right out and told her that she probably only had a week to live! She's closer to me now...two towns over. I can keep an eye on her now. She's had to have so much done.. revising..and just recently, a graft. Now to wait for that to work. Bless her heart. She's close to being done with it all. She keeps saying she wants to go home...pointing up. I got her through the holidays, then told her that dialysis is her choice. We'll see how it goes now. Poor kid. I call her kid, at age 54.

 

[CindyinSD]

My husband is now in stage 3 kidney failure. The Dr is keeping watch. He's had blood drawn twice within the year for it. Now my sister..is a different story! She is my mentally handicapped sis. Her GFR was down to a 7! She was so sick. I hadn't been able to make it to her appts. But when I did, and when during the second time I went, he was still saying..see you next appt. Well, I'd had it. I literally slammed my hand down on the bed with that paper on it. It made everyone jump...including my daughter in law that had driven me to her appt. Later she told our son that she saw the mama bear come out! I went on to ask him...why he doesn't think she's ready for dialysis. She couldn't be more sick. She was throwing up..what little would come up..in his office. I had to tell this..so called... specialist what was going on. Couldn't eat or drink without it coming back up immediately. Staying in bed all day because she couldn't breath right or walk far. Oh, I went on. He says, well...I guess we can start her on dialysis. She got a port in first. Went to a different home where there are CNA'S and nurses. Also a Dr. comes to see her weekly. When he read her report he right out and told her that she probably only had a week to live! She's closer to me now...two towns over. I can keep an eye on her now. She's had to have so much done.. revising..and just recently, a graft. Now to wait for that to work. Bless her heart. She's close to being done with it all. She keeps saying she wants to go home...pointing up. I got her through the holidays, then told her that dialysis is her choice. We'll see how it goes now. Poor kid. I call her kid, at age 54.

So sad to have this to deal with. My mom went home at the end of January. Even though her mind was completely gone I still miss her even though I'm also happy for her. Parting is so hard. Praying for you both.