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Lightwarrior
09-13-2010, 02:02 PM
I was admitted to the hospital on Thursday afternoon after weeks of spiking fevers in the afternoon and morning with chills every evening. I had two trips to the ED once blood cultures, urine cultures with nothing growing. They admitted me with a dx of sepsis. My PCP has been throwing fits with all my specialists that something is wrong and after two visits last weeks to my Rheumy and my urologist I ended up in the ER after I developed really bad chills at work and a temp of 103.7 F. For a while I still felt strong underneath the fevers but have been weak as a cat for a few days now.

Infectious disease doc thinks that either it is a side effect of the Methotrexate (I took my last dose of Cytoxan on 8/20 and started my first dose of Methotrexate on 7/24). Or..with the mass production of kidney stones I have been having including 2 that obstructed with one requiring a stent and lithrotripsy, that some of the remaining stones are infected, which he says if the infection is inside the stone then it won't show in a blood culture unless the stone releases some of the bacteria at the right time.

Anyway....so here I am on 4.5 grams of Zosyn every 6 hours fluids running to try to flush the stones out. I have had to fight with the hospitalists who know nothing about Wegeners but tried to change all my medications around. The first doc thought it would be a good idea to stop everything and i had to get one of our Intensivists to come up to help him understand that he shouldn't mess with my meds. Then I had one decide to increase my beta blocker from 50 twice a day to 100 twice a day even though my pressure is running 104/60. Thank God the nurses here know me and tell me every change the hospitalists try to make so I can block them if needed.

I hope to be out soon, no appetite, which is not that bad because I have very loose stools if I eat anything (stool samples are negative also). My rheumy actually came to see me and seems to think that I am mass producing stones because of some hidden side effect of the time I was on Cytoxan????

Good news is that all my CT scans show negtive lung, kidney and sinus involvement so rheumy doesn't think Wegs is awake.

I hope all is well with you all.

pberggren1
09-13-2010, 02:31 PM
Oh boy! This sounds very scary Light Warrior. I am very worried for you. I hope they get to the bottom of this soon for you. Some docs are just plain stupid. Like why on earth would he double the beta blocker if your bp is already low? How did he graduate from med school? Good to hear that the CT scan shows no lung, kidney, and sinus involvement. I hope your Rheumy knows what he is doing. Are you confident with your docs?

Lightwarrior
09-13-2010, 02:38 PM
I hope your Rheumy knows what he is doing. Are you confident with your docs?

Not really, I am living proof of why Sangye, elephant, Jack and others nag about the need for a Wegs specialist. I hear that Cedear Sanai is supposed to be developing a Weg center....I can't wait that is only 4 hours from my driveway.

I think my rheumy is learning, my PCP is mad because no one would take my fevers seriously, just a lets wait and see what grows approach. How are you doing?

DEE
09-13-2010, 02:41 PM
Sorry to hear your having a tuff time hope they get things sorted soon take care DEE x:hug2:

pberggren1
09-13-2010, 02:43 PM
Not really, I am living proof of why Sangye, elephant, Jack and others nag about the need for a Wegs specialist. I hear that Cedear Sanai is supposed to be developing a Weg center....I can't wait that is only 4 hours from my driveway.

I think my rheumy is learning, my PCP is mad because no one would take my fevers seriously, just a lets wait and see what grows approach. How are you doing?

That can be so frustrating.

4 hours is still a long way to travel, though I used to travel 3 and sometimes still do.

It is so tough to get to see a Wegs Specialist. Has your Rheumy ever consulted with one of the VF docs?

Lightwarrior
09-13-2010, 02:44 PM
Sorry to hear your having a tuff time hope they get things sorted soon take care DEE x:hug2:


Thanks for the hug Dee :hug1:

Jack
09-13-2010, 07:04 PM
Sorry to hear you are still having such a tough time of it, hope they can get you sorted out soon.

It is scary to hear all the stories on these pages (and my own experience) about us patients having to take control of the drugs prescribed to us. It makes you wonder how many of the less well informed are suffering due to poor standards of care and doctor's mistakes.

elephant
09-13-2010, 08:30 PM
LIghtwarrior, you have been going through a rough time with those kidney stones. When I had my drug reaction to Imuran ...I had fevers of 101-103, flu like symptoms, nausea and vomite a couple of times, chest/back pain. I too can't believe that doctor who wanted to double your beta blocker?!? Here's a big hug from a yellow friend.:hug2::hug3:

Jack
09-13-2010, 08:40 PM
They halved my dose of Beta Blocker while in hospital which I went along with because my pressure was so low. I then had slight heart palpitations and a-rhythm which I mentioned to the doc and said I was OK with it because I knew it was due to the dose change. But the doctor was having none of it and said that the only effect it could have was on blood pressure.

The government website on drugs says in a red box -

"Suddenly stopping atenolol may cause chest pain, heart attack, or irregular heartbeat."

I really don't think it is right that I know more about it than the doctor!

Sangye
09-13-2010, 10:27 PM
Oh Lightwarrior, I'm so sorry to hear about your condition. I hope they can figure it out quickly. The infected kidney stone or mtx reaction ideas sound likely. Have they taken a chest x-ray? Mtx loves to cause pneumonitis.

I'm also wondering if they should test you for Valley Fever and things like Rocky Mountain Spotted Fever. You don't have the typical symptoms, but any cyclical fever makes me think of fungal and rickettsial infections. The pred can easily mask the other symptoms. Also, they often progress slowly, so classic symptoms could be weeks away. I know you have ID on your case, but they might be so focused on the other things that they don't test for things they normally would.

So glad you have the background to advocate for yourself. Hang in there, friend. :hug1:

Sangye
09-13-2010, 10:40 PM
It is scary to hear all the stories on these pages (and my own experience) about us patients having to take control of the drugs prescribed to us. It makes you wonder how many of the less well informed are suffering due to poor standards of care and doctor's mistakes.
In 2004 a study of 37 million patients records was done. It concluded, "An average of 195,000 people in the USA died due to potentially preventable, in-hospital medical errors in each of the years 2000, 2001 and 2002."

"The equivalent of 390 jumbo jets full of people are dying each year due to likely preventable, in-hospital medical errors, making this one of the leading killers in the U.S."

These were only deaths that occurred in the hospital. So if they sent a patient home on the wrong meds and they died at home, it wasn't counted.

I have to add that holistic medicine gets all the negative press-- from the "safety" of supplements and herbs to the efficacy of holistic treatments. But if we were causing anywhere near this kind of damage, you can bet holistic medicine would be driven out of existence.

pberggren1
09-14-2010, 12:25 AM
In 2004 a study of 37 million patients records was done. It concluded, "An average of 195,000 people in the USA died due to potentially preventable, in-hospital medical errors in each of the years 2000, 2001 and 2002."

"The equivalent of 390 jumbo jets full of people are dying each year due to likely preventable, in-hospital medical errors, making this one of the leading killers in the U.S."

These were only deaths that occurred in the hospital. So if they sent a patient home on the wrong meds and they died at home, it wasn't counted.

I have to add that holistic medicine gets all the negative press-- from the "safety" of supplements and herbs to the efficacy of holistic treatments. But if we were causing anywhere near this kind of damage, you can bet holistic medicine would be driven out of existence.

Some day holistic medicine will be the only medicine available and most people will not be sick any more. Obesity will be a thing of the past and our diets will revert back to that of our ancesters. Modern medicine will be obliterated.

Sangye
09-14-2010, 02:00 AM
That's not our goal.... There's a need for allopathic medicine. If I broke my leg or my appendix burst, there's nothing holistic medicine can do. But you are correct in your general idea that the scales are tipped in the wrong direction. Most conditions can be prevented and treated using holistic medicine without causing the cascade of side effects and damage that allopathic medicine invariably causes.

Lightwarrior
09-14-2010, 04:56 AM
Oh Lightwarrior, I'm so sorry to hear about your condition. I hope they can figure it out quickly. The infected kidney stone or mtx reaction ideas sound likely. Have they taken a chest x-ray? Mtx loves to cause pneumonitis.

I'm also wondering if they should test you for Valley Fever and things like Rocky Mountain Spotted Fever. You don't have the typical symptoms, but any cyclical fever makes me think of fungal and rickettsial infections. The pred can easily mask the other symptoms. Also, they often progress slowly, so classic symptoms could be weeks away. I know you have ID on your case, but they might be so focused on the other things that they don't test for things they normally would.

So glad you have the background to advocate for yourself. Hang in there, friend. :hug1:

I've had chest xray and ct this visit and lungs are clear. Valley Fever is common in this area and is one of the things they tested me for early on before they diagnosed Wegs. I'm a nurse or I would be dead by now....i so worry about those who have to depend on the system. My platlets dropped to 79 today and I find out that one of the hospitalists had put me on asprin since I got here......Now I'm making them open every medication in front of me.

Just saw the ID doc, he is convinced that it is infection hiding in the kidney stones, he is putting in a PICC line so I can go home tomorrow and get IV antibiotics every 24 hours until this is cleared up. I should be able to be back to work by Thursday.

Lightwarrior
09-14-2010, 05:06 AM
That's not our goal.... There's a need for allopathic medicine. If I broke my leg or my appendix burst, there's nothing holistic medicine can do. But you are correct in your general idea that the scales are tipped in the wrong direction. Most conditions can be prevented and treated using holistic medicine without causing the cascade of side effects and damage that allopathic medicine invariably causes.

I agree, it is not our goal, but we now have the ability to blend the best of both worlds...doing so succesfully is our next frontier. I remember when I was a young skinny (lol, yeah I know hard to believe my memory can reach back that far) white girl learning from an amazing great aunt (by marriage) who was a cuarandera and picked me of all the family to teach, anyway I remember asking her things like what do you do for this and she would teach me the remedy, one of the days we laughed the hardest together was when I asked her something and she said...Go to the doctor, she knew how to blend the old and the new and when to blend.

Jack and Phil....I have heard those numbers before, can you imagine if 390 jetliners dropped from the sky?? The entire world would go nuts.. Yet most hospitals are still barely over 50% compliant with hand washing.

Marta, maybe our book with collective stories can put a strong emphasis on patient safety and how to advocate for yourself and loved ones.

marta
09-14-2010, 04:43 PM
Light Warrior, I am getting goosebumps reading about what you're going through. I'm blown away and scared of what could happen to someone who's a rookie in this game of Wegener's without a background in medicine.... someone like, say, myself, if this happened. I have this trust in the medical system that I need to shed and be more educated as to what can cause damage and what can help, and it's quite overwhealming. You're a strong woman, and I'm glad to hear that you're on top of it and vigilant with what's being brought your way in the form of little white pills. That stat of iatrogenic fatalities is also quite mind-blowing.

The book, yes, I've been thinking about a couple of different Appendices, including symptoms we've experienced and their possible triggers, what constitutes a flare, common treatments we've had for flares and other symptoms, and now YES, patient safety and how to advocate for yourself and loved ones is a very good one to stick in there... a life saver actually.

The book keeps getting bigger and bigger - this is a good thing. The more out there, the better.

Take care Lightwarrior, be strong, and be healthy as soon as possible. My heart is with you.

Sangye
09-14-2010, 10:37 PM
Marta, I can't tell you how many major mistakes have been made with my care during my hospitalizations. Each hospital stay has had at least one, regardless of the length or the hospital.

Since the first admission, I've always checked the meds they hand me. I have them tell me what every single pill is. If it looks different from my usual (sometimes their brand is a different color or size) I ask to see the pack with the label on it. If it's a drug I didn't know about, I don't take it until speaking with my doctor. That happens a lot-- a doctor will write an order for something without discussing it with me. Nothing gets me riled up like that!

You also have to check for which pills are missing. They often forget to give me one of my usual meds.

The other thing they mess up is when they give the meds. A doc might order it twice a day, so they'll automatically bring it in the early morning and night. But some should be taken with food, which is hours away. I took an antibiotic once without food and had horrific abdominal pain for the next few days. They thought it damaged my small intestine.

Most of the nurses are very happy to go over the meds with you. They feel better knowing there aren't mistakes. But every so often I've had a bad nurse who thought I was being too picky or controlling. They're usually the ones who make mistakes. If they're nasty about it I ask if I can just hand them a bunch of pills to swallow. :glare:

Jack
09-14-2010, 11:40 PM
Agreed.
I am lucky enough to be able to self medicate when in hospital, but some doctors still try to mess with my drugs without consulting me. I never take anything that I don't recognise or have not researched for myself.

marta
09-15-2010, 02:14 AM
I find this is the way it is with life too Sangye, people get the most offended when you call them on a shortcoming they are already aware of - even if only subconsciously.
I love the idea of offering them a bunch of pills to swallow, a forced empathy card.:wink1:

elephant
09-15-2010, 02:17 AM
I am like Sangye in the hospital too. I don't apoligize for it either.

Sangye
09-28-2010, 10:19 AM
Lightwarrior, haven't heard from you recently-- how are you doing? Please check in and let us know! :unsure:

elephant
09-28-2010, 11:20 AM
I was thinking the same thing. Hope your alright Lightwarrior!