In PAIN, hospital NOT helping

[setLOVEfree]

So I had a port placed in January, the dr collapsed my lung and I needed 2 chest tubes. The last chest tube hit a nerve. I've been in pain everyday since.

The cf clinic said it was a surgical problem. The surgical team says its a cf problem. Surgical team referred me to a pain clinic, which hasn't done much.

Im in so much pain I can hardly breathe bc it takes my breath away. I cannot bear down to blow my nose. And I cry when I have to cough. It's beyond awful, I can't express the pain in words.

Today I coughed and felt a pop, then such intense pain I broke down crying. I called my hospital and after 2 calls back, they said one in for an X-ray and go home. They won't even see me!! So I have a 2 hour round trip for a 5 min X-ray and NO appointment.

I cannot get into the pain clinic till Thursday!!!! I'm beyond frustrated, I feel like everyone is blowing me off, giving me the run around.

im half tempted to just go to the er there and demand I get help with this pain. I'm seriously looking into going to a different cf hospital. I've had so much pain, I can no longer work and have very little quality of life.

has anyone been through an experience like this? Or have had these feelings.

im so frustrated I could cry!!!
kelli

 

[Iamqueenofeverything]

never been there but keep addressing the issue. the only one who can be your advocate is you. the er sounds like a good option. no one should be in pain. sounds like the two teams are not being responsible and doing nothing. when you get a chance, you may need to address this issue and your concerns with the head of each team because they are hear to help you with your health. if they aren't helping with you, then they aren't helping others.

 

[Craige Leeder]

Definitely keep pressing this issue. The surgical team sounds like they won't own up to their mistake. I can't fathom any reason this would be CF related; they're on drugs.

Your CF team should be helping your press this issue, NOW. They're supposed to be there for you, especially in a case like this. My CF team has always been great and are helpful even with the most trivial problems. If your CF team isn't there for you when you're in excruciating daily pain, they're not doing their job. Granted, they can't just snap their fingers and make the pain go away, but they should be coming up with a plan to resolve this.

 

[azdesertrat]

I can honestly say I know how you feel.
In all, I've had 7 chest tubes. I have nerve damage from 2 thoracotomy surgeries.
These surgeries have caused chronic pain.
I think you should go to the ER first. See if they will do something there. I had to do that same thing when I was in ID last Jan.-Feb.
They should give you IV pain killers, at least to stabilize you.
When you go to your pain management clinic, tell them what they're doing isn't working.
If they don't want to address the problem, find another pain mgt. team.
There is no reason you should have to live in debilitating pain.
My pain is at least at a level I can function to a degree, there's no reason why yours shouldn't be.
You need to be firm & don't accept 'no' for an answer with this.
Best of luck to you, you're in my prayers.

 

[JustDucky]

Agree with Pat....go to the ER and get your pain addressed now, at least get comfortable. Then I would press the issue, someone has got to take responsibility for you...you should be comfortable. It's awful that you have been suffering for so long....and to have to drive 2 hrs round trip for a xray and no appt...well, that's lousy on the CF team's part. If they can't help advocate for you, it is time to switch to a center that will be there for you and make some waves when necessary.
I hope everything works out for you in the end....will be thinking of you

Jenn 41 wCF

 

[CFkitty]

You don't have to go to a CF center to get an x-ray. Any hospital ER or outpatient Radiology department (if it's not an emergency, I'd suggest just going to your local hospital's radiology dept) can do it and send the results to your doctor.

 

[setLOVEfree]

I've had over 10 X-rays. All that does is rule out a collapse. So I'm stuck with my crappy pain clinic for now. . Going back to the hospital for a check up today.

 

[jamest]

Sounds like a lot of buck passing going on. Try writing directly to hospital management, describe your situation, and insinuate (but don't outright state) that you believe that malpractice may be at hand. Hopefully management will make your case a priority.

In the immediate term, I suggest going to the emergency room. Describe your symptoms, say it is a 10 on that moronic pain-chart, and indicate that you are having trouble coughing, and this is a huge issue because you have CF. The goal is to circumvent your surgical and CF teams, and get you help from another team that will take a look at the problem fresh and maybe generate a solution.

Good luck!

 

[MsPeliAmour]

Oh my gosh, Kelli! I'm so sorry for you and all they're putting you through. Where is the CF center that you go to? As for an X-ray ruling out a collapse, that's actually not true. I've been having lung pain for a couple weeks and had a chest X-ray which showed nothing. So my doctor decided to do a CT scan of my lungs and actually discovered that my lung may in fact be collapsed. I'm still waiting for more info, but I just wanted to let you know that my doctor told me that a partial collapsed lung may not show up on a chest X-ray. I agree that if you are having trouble breathing and your doctor is being negligent, you should go to the E.R. I hope you find some resolution soon!

 

[LittleLab4CF]

As tempting as your ideas are, you need to add a new doctor to your team. I have been through this routine a few times. Every so often either prescription drug overdose statistics make the news or new MDR pathogens emerge and narcotics or antibiotics get relegated to the eye dropper.

When political winds blow this way, I engage a pain management specialist. These are usually anesthesiologists or neurologists. Either will do but my experience is anesthesiologists work well for CF as their specialty leans toward narcotic analgesics, which are about all you can use. Trigger point injections aren’t going to alleviate your kind of pain.

I know you are desperately ill and probably need an advocate to go about finding this doctor. Speak plainly with this doctor. You have no guilt, no drug seeking behavior you have intractable pain that has reduced your quality of life to a point where you don’t know how much longer you can keep from going flat crazy.
I suggest fentanyl as a preferred drug. It has a short half life and a little goes a long way. Both qualities are good for CFers. Fentanyl comes in transdermal patches ranging from 25, 50, and 100mcg/hr strengths. There are also sub-lingual tabs that deliver a fast dose.

Although the doctor could order adequate narcotics in your brand new painful port, your pain may not stop when you leave the tether of an IV and hence my suggestions for transdermal delivery of the drug. The “potency” of narcotics is often compared to a 10mg dose of morphine. Morphine is an ER narcotic so common it comes pre-loaded. It is sort of the maximum pain dosage for a narcotically naive person. Fentanyl dose equivalent is about 1/1000 that of morphine so if my math is right (Morphine 10mg = Fentanyl 100mcg). One interpretation of potency means the liver has to metabolize a thousandth of the amount comparatively speaking. This is good for CFers since we put our compromised liver through the works with antibiotics and the dead bacterial toxins and whatever. In short your medical team needs a new member.

Demand quality of life,

LL

 

[megan420]

My hospital is crap too! Its an hour away from me to and they are completely useless!!!! I started crying when I read you post because all the words you were saying I say on a daily basis. This is not right and I so very much want to expose people to the harshness that we get from doctors. Not all docs, but Ive had my share. You are not alone. I try to brainstorm everyday how i could get the word out or make people realize the crap we have to put up with. We shouldnt have this much troubles. I bet a Cancer patient gets all the best care and thing he/she needs but noooooooooo not the CFers!