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Saturday, April 20, 2013

The Futility of Doctors and Their Staff & The Clogged Peg Tube

I've been trying to get Bob's peg tube replaced since January. That's right. January.

This because I am being smart, or so I thought, by staying ahead of the game. Nipping a problem in the bud, before it blooms. Because I know Bob's peg tube is on it's last legs. And would need to be replaced. About right now.

So back in January, I get a referral for a new GI doc from Bob's primary care doctor. Because I don't want to go back to the old GI doc. As he is pretty useless. Not to mention he works out of The Hospital. And we don't want to go back there. For obvious reasons.

In January, I called the new GI doc's office to set up an appointment and am told immediately that they don't take Bob's insurance. Which is weird. Because they are on the insurance company's website. At least I think. So I hang up the phone and go on the insurance company's website and sure enough, they are listed as a provider. So I call the office back up and the receptionist, first, argues with me that my information is wrong. Then finally connects me to someone else, who tells me they do in fact take his insurance. I ask if I can set up an appointment, please. But she wants to know what the purpose of this appointment would be. So I tell her that my husband has a peg tube and it will need to be replaced soon. Then she tells me that this particular GI doctor will not work on a peg tube that he did not put in and I need to go back to the GI doctor who put the peg tube in.


So after another argument, finally, she tells me to have all of Bob's medical records transferred over to their office at which time the GI doc will review them and decide if he wants to take Bob as a patient. And if he decides it's OK, they will contact me for an appointment.

Okey dokey. Though I'm thinking this is really weird. I didn't know that doctors could "pick and choose" which patients they wanted to see.

But I do this, call to have all the records transferred over. And I wait. And I don't hear from them. So, in February, I call the GI doctor's office again, this time I just schedule an appointment. I figure if the doctor doesn't want to see us, well, he can throw us out of the office when we get there.

We went to see the new GI doctor on March 4th. I tell him that Bob's peg tube will need to be replaced soon and I'd like to get it done now, before it starts causing all sorts of problems and the whole thing turns into an emergency. Think: Kaboom! Like his first peg tube did when it burst and split down the side...

The doc looks at Bob's peg tube and agrees that it probably only has a month of life left in it. Then he tells me that Bob will need to stop taking his warfarin five days before the procedure. And I tell him that he cannot go off the warfarin because he has hyper-coagulating blood and is a high stroke risk. And that this is Bob's third tube and both times it was replaced before, the procedure was done while on warfarin. And he tells me that this is too risky and the other doctors were wrong to do the procedure while on the warfarin. We go round for round on this for a bit, then the doctor says he could switch Bob from warfarin to lovenox which is a fast-acting blood thinner, then stop of the lovenox for a "small window of time" during the procedure, then put him back on the warfarin, but he will have to talk to Bob's neuro doctor and discuss how to do this first.

We leave the doctor's office with the promise that once he talks with the neuro doc someone will call me and set up an appointment for Bob's peg tube replacement. And also, he will order a home health nurse to come to our house to administer the lovenox. Which is an injection.

All righty.

Once again I wait. Two weeks pass and no one calls me. So I call the GI doctor's office and after leaving a billion messages, finally, a week later, the nurse calls me back and tells me they are still waiting for a response from the neuro doc to the fax that they sent. So, I call the neuro doc and talk to his assistant who tells me they never received a fax. So I call the GI doctor's office back and leave another billion messages and finally, a week later, the nurse returns my calls and says she will re-fax the request.


And I wait. Again. And no one contacts me.

Meanwhile, Bob's peg tube is getting wonky. That's a technical medical term. Wonky. Meaning, it's clogging every darn morning. It's ballooning up. It's kinking. It doesn't look good.

Now add this to my ever-growing resume: Master of the Clogged Peg Tube. Because after two plus years, I have become an expert on this matter. And you can forget about using Coca Cola, or Adolf's Meat Tenderizer or Hot Coffee or all the other strange old wives tales out there, because the best and fail-safe way to unclog a peg tube is with warm tap water and a cannula brush. First, you run the brush through the tube like a roto-rooter, then flush with warm tap water. This never fails.

Until yesterday....

But I am jumping ahead of myself. Because before yesterday, I once again called the GI doc's office and left two billion more messages and finally, a week later, the nurse calls me back and tells me they are still waiting for a response from the neuro doctor... So I tell her that this is getting pretty ridiculous and Bob's tube is going, I mean, really going. And if it goes, we will end up over at ER and the reason I contacted their office way back in January was to prevent this from happening.... and she asks me if there is another doctor that could respond to their request, so I give her the name of Bob's primary care doctor. She says she will fax the neuro doc again and also fax a request to the primary care doctor.

All right.

And I wait. Again....

Earlier this week, I call the GI doctor's office and leave another billion messages for the nurse, who does not call me back. On Thursday, Bob had an appointment with his primary care doc. So I ask him, if he got a fax, and he did not. So I explain the whole problem and show him how wonky Bob's tube is getting and he tells me that he does not want to get involved with this and I need to make an appointment to see the neuro doc ASAP and discuss this matter with him. Then I tell him that I don't think this GI doctor knows what he's doing and can he refer us to someone else? And he tells me that I should not go hopping from one doctor to another!


Well, I am not about to make an appointment to see the neuro doc because it will take weeks to get in, plus it will cost $35.00 plus the cost of wheelchair transport and I am not spending that kind of money to ask a doctor if he got a fax.

So we get home from the primary doc's office and I call the neuro doc's office and talk to the medical assistant again and she says they still have not gotten a fax from the GI doctor. So I call the GI doctor's office and, miraculously, the nurse answers the phone! I tell you, I nearly fell over dead. And she promises me, promises me that she will walk to the fax machine as soon as she hangs up the phone and fax another request.

That was Thursday.

Which brings me back to yesterday morning.

When for the life of me, I could not unclog Bob's peg tube. I mean, I spent forty-five freaking minutes trying to unclog that tube. Nothing was working. My cannula brush was hitting what seemed to be concrete. The wire end of the brush bending instead of going through. Then tube itself was rock hard in parts and the thing was ballooning, like a long sausage shaped water balloon. I was afraid it might burst. I tried warm water, then HOT water. And I pushed that syringe as hard as I could, and the darn water would burst out through the Y-port and drench both me and Bob. And still the tube was clogged. And I attempted to roto-rooter the tube every which way. I was to the point of meltdown. Furious. The kind of furious where you want to stamp your feet and throw things across the room and GAAAA! scream your head off. And of course I was furious at the doctor's office and the nurse who won't return calls and the faxes which disappear into a black hole. And then I just wanted to sit down in the middle of the floor and cry my eyes out. Because I would have to take Bob to ER if I didn't get the darn thing unclogged, then they would admit him to the hospital to wean him off warfarin, which could take like five freaking days. And oh lord. I needed to get creative here.

I knew the trick was to warm the tube up. So I got a bright idea. I got a big soup bowl out and filled it with hot water. I draped Bob with a big bath towel. Then I took that tube and coiled it like a snake and submerged it in the hot water. Thinking that I could warm it up from the outside. And it seemed to be working because the concrete blockage was no longer rock hard. The tube was growing flexible again. But the problem was that I couldn't get the whole tube into the soup bowl, I mean, especially the part that goes into Bob. So I got another bright idea. I took some wet towels and nuked them in the microwave and then wrapped Bob's tube in them and let it sit for a few minutes. After that, I massaged his tube with my fingers trying to break up the clog.

Then I took the cannula brush and whoo hoo! It went through! But when I tried to syringe water through the tube, all I got was that damnable long sausage shaped water balloon. And nothing else. Except water spewing back out of the Y-port all over me and Bob and the sofa next to Bob's bed.


I was desperate. When your desperate, you resort to desperate measures. So I got out the scissors and I syringed water into the tube until the big sausage shaped water balloon appeared. I pinched the place where the balloon started with my fingers, withdrew the water back into the syringe, then I snipped the tube, cut off the part of the tube where the sausage balloon had appeared, and it was a good six inches, I swear. But now I could see into the tube, see what was blocking it, and weirdly enough, there was nothing there. I ran the brush through Bob's now foreshortened tube, and it went through. So I reattached the Y-port and, lo and behold, was able to syringe in the water. Able to get his morning meds into him.

Easy as that.

That afternoon, I called the neuro doctor's office and talked with medical assistant again because I wanted to make sure she got the fax that was supposedly sent out yesterday. She said that she gotten it. Then she said that they had gotten this same fax three times before and had just filed it, thinking it was for "information purposes only".


You can bet, I will be on the phone again next week. Because I can't keep chopping bits off Bob's tube or soon he'll have nothing left!

Things should not be this hard.


J.L. Murphey said...

Diane, Do you have someone to sit with Bob for an hour or so? If so hand carry the request to the neuro and back to the GI. This is ridiculous! The electronic and phone tag needs to stop. You shouldn't have to do all of this.

First off, doctors have the right to refuse any patient care when referred by another doctor to accept the patient. I know it sounds wrong but it is the truth. I've quit doctors and had doctors quit me and yes, even refuse to see me.

The next time it gets clogged have him transported to the ER. I guarantee somebody will fix the problem especially when you tell them the stuff you've been going through since January.

I know you hate going to the hospital because of the suit BUT the doctors are being unreasonable and you've got to have help. It's not like you have a choice of five or six different hospitals to choose from. We are in the same boat here. They have to care for us no matter what.

Susan said...

Holy Cow Diane, I was exhausted and furious at these doctors after I read your blog!
I called Dahn's primary doctor last Wednesday, never got a call back, then I called last Friday, and I am still waiting for a call back!! The anxiety this causes is horrible and unecessary!

Right now I am stomping my foot and letting out a!

Joyce said...

Diane !
The run around you are getting is crap!!! I don't know what to tell you , but sounds like you are dealing with it and keeping your sanity too. I don't think I could do that and remain sane.
I am so impressed with your resourcefulness in working with his tube. I feel so fortunate , as have not had any major problems with garys tube. His is a different kind though, as it snaps in place when I feed him and then come off so I can wash it. The first one he had was like Bobs.. I like this one much better.
I wish you luck :)