PDA

View Full Version : Reality Check



Sangye
11-19-2009, 12:55 PM
I spent all day yesterday organizing piles of paperwork that had accumulated over the past couple months. I was too sick to deal with it until now. Most of it involved medical care, the majority being insurance papers and medical bills. It was so time-consuming that by the end of the day I was grumbling to myself (even more) about the state of health care in the US.

I hear stories from some of you in other countries with nationalized health care-- no bills, no insurance denials and appeals, no entire day spent just on filing the paperwork....

But close to the end I came across a VF newsletter from a few months ago. I read about a man with Wegs who said that even though he was in awful pain, his blood work always looked great and his doctors thought he must be nuts. He asked if anyone had experienced the same thing. Since that pretty much described me, I emailed him and encouraged him to find a Wegs specialist, that they would know what to do. I also gave him the link to our group.

Today I got an email from his wife. She said he died 3 weeks ago from complications of repeated "pneumonia" and diabetic ketoacidosis. He was too weak to take his insulin, and he was coughing up blood. She said he'd had a continual flare for 6 years. So clearly, he died from Wegs.

I was so saddened by this. He and I had such similar cases. I've never been in remission. I've been misdiagnosed the same way several times by non-Wegs doctors--treated for pneumonia for weeks at a time while I slowly went downhill. He died the week I received my last Rituxan infusion. Maybe if he'd had a Wegs specialist, he might still be alive.

It's a reminder of how vital it is to get the very best and most specialized care we can.

Doug
11-19-2009, 03:20 PM
Gives pause, doesn't it? What a tragedy.

andrew
11-19-2009, 04:46 PM
Damn. That's so sad. Wouldn't the doc think that something must have been wrong? The guy must have been obviously sick. I guess we'll never know. Despite the tragic circumstances Sangye, thanks for posting. It is indeed a highlight to all of us, newly diagnosed or 'experienced', to get and keep specialised care.

Sangye
11-20-2009, 02:44 AM
I was that sick in June when I was hospitalized for the 2nd round of pneumonia in 2 months (or a continuing infection). The non-Wegs rheumys and pulmys said it wasn't a Wegs flare, even though I was coughing up blood and weak as can be.

They said I "looked too good to be flaring," that my blood work was fine (ie no inflammation), and that even though the bronchoscopy showed alveolar hemorrhage, there wasn't enough blood to call it Wegs. They decided I didn't even have pneumonia, and sent me home with a dx of "minor viral infection." One of them actually belittled me (seriously) for taking up a bed in the Pulmonary ICU for something so minor.

When my Wegs doc found out the next morning, he was livid. It was obviously a flare. So it could have happened to me, too.

coffeelover
11-20-2009, 05:58 AM
I hate to hear that story. I too have relatively good numbers in most of my blood work, but my rhuemy is concerned about one particular number and that is why she is sending me to a WEGS specialist. I am thankful for that, especially after hearing this story.
coffeelover

elephant
11-20-2009, 06:01 AM
That just makes me sick to my stomach to hear that. Can't believe the pulmonary doctors not thinking it's WG, considering your history?!?!
That is so awful about that man losing his life because of WG. That is a darn shame.:(

Sangye
11-20-2009, 07:04 AM
They were great doctors (except for the guy who belittled me-- he was a lousy doc all round), they just didn't know Wegs all its disguises. They don't understand that Weggies can look fine and be gravely ill. (Not that I looked at all fine. But because I maintain my sense of humor, it gives the impression that I'm in better shape than I am. Gravely ill people don't usually laugh)

Even my Wegs doc said that unless a doc sees Wegs every day, they would have missed my flare.

elephant
11-20-2009, 08:04 AM
Sangye, you have a great sense of humor. You keep me laughing!:D

Sangye
11-20-2009, 08:15 AM
When I was in the hospital for all that, the pulmy was very serious. During the bronchoscopy, I woke up while they were filling my lungs with saline and vacuuming it out to get a sample ("lavage'). I was choking and choking. It was terrifying, like being drowned. Finally they knocked me out all the way.

When the doc came by later, I told him I was awake during that part and I remembered the whole thing. He said they knew I needed more anesthesia, but no way did I remember it (they give you some kind of amnesia drug). I said "You did the lavage 4 times, right?" He turned a little pale. I said, "It's okay, I'm still here. But thanks for the water-boarding. Do you moonlight as the attending physician at Guantanomo?" I thought that was pretty funny, but he barely cracked a smile.

Jack
11-20-2009, 08:42 AM
I've learned that they don't have much sense of humour when they are caught making a **** up. Perhaps they are afraid of litigation?

elephant
11-20-2009, 09:08 AM
He was probably thinking," OH CRAP!" Crap, crap and more crap!!:eek:

Sangye
11-20-2009, 10:20 AM
I'm sure! I figured he'd be worried so I reassured him that wasn't my plan. But you know, he didn't have a sense of humor before all that, either. For days I'd been trying to get a laugh out of him--nothing. I think he had a chronic deficiency of joy. That's worse than Wegs!

Anyway, I don't want to hijack this thread topic more with my joking around. It's too important....

jola57
11-22-2009, 06:06 PM
Being awake happens, I think I told everone about my nose surgery and being awake for part of it. No mystery there unfortunate miscalculation of how much drug to give and voila we have an aware patient. I am sorry you experienced the drowning effect, after my thyroidectomy they extubated me to quickly and had to bag me for over 30 minutes, my saving grace is that I don't remember any of this.

Mike
11-28-2009, 10:09 AM
Universal health care is so important. My daughter and her family, who is now in remission, would have lost her home and all her savings if not for our Canadian health care system. General GP's often miss WG and if in doubt call it pneumonia. By the time it is discovered, it might be to late or damage already done.

Traceys Dad (Mike

Cindy
11-29-2009, 04:06 PM
The worse thing that can happen in the US the a giant HMO called the federal health care program!!!!!! I have the best PPO money can buy (and it takes up a lot of our money) BUT I can control my life!!! No administrator can make MY medical decisions!!! Only my doctors! I have a VERY strong opinion in this area - personal experience!!!!!

elephant
11-30-2009, 12:06 AM
If most Americans were without health insurance, there would be riots and demands to get National Health care now! There were patients that I took care of who were without insurance. Many of them homeless, I tried to find a safe place for them. Many would have to stay in the hospital till we found a place for them. Another reason our health care cost are high is that we pay for foreigners without insurance. If the women are pregnant then they get medicaid. I'm all for foreigners getting health care and immunizations shot's free. If they didn't they would be spreading diseases. Some parents are afraid to immunize their children because they think their child will get Autism. The CDC is seeing an increase in Measles because of that. I'm going off topic, but my main point is that everyone needs insurance!

Jack
11-30-2009, 12:18 AM
I've voiced my thoughts on the British NHS system many times on these pages and can't understand why anyone would be against it. Basically, I've received all the treatment I've ever required regardless of cost, quickly and virtualy free on the word of whatever doctor I have chosen to see with no intervention from anyone. I understand from web research that the cost per patient is half that spent in the US and the outcomes on average more favourable.

Sangye
11-30-2009, 01:47 AM
I have known 2 Weggies who died either because they lacked insurance--and therefore couldn't afford proper care-- or because they lacked adequate insurance-- and therefore couldn't afford proper care.

We have one member in this group who is losing facial bone at an alarming rate, but can't stop working long enough to get proper medical care-- for fear of losing her job and therefore her insurance.

Even though I have my own private insurance (and it has excellent coverage), maintaining it while I've been unable to work has been financially disastrous. Just the premiums alone eat up 84% of my Disability income-- my only income. Add an annual deductible of $3,000 to that. And when I went to Mayo AZ, they didn't take my insurance, so I had to pay the difference every time. A single follow-up appointment would cost me at least $300.

If that isn't rationing of care then what is? I would have died without Mayo. My local docs had just about killed me several times.

The US government already has a "giant HMO" called Medicare-- universally loved. Look at the uproar that happens when someone even hints at "Medicare cuts." I have Medicare also, since I've been on Disability for over 2 yrs. I love it. Wish I could keep it. But when I go back to work at some point, I'll lose Medicare and will have to rely on the insurance I have.

So I choose between paying rent or paying my health insurance premium every month. Every month! I can't even begin to describe the intense, relentless stress this has caused me. I don't deserve that. No one does.

Cindy
11-30-2009, 02:26 AM
You are correct: Medicare and Disability are great. And yes I believe everyone should be able to get health care. This Reform the government is talking about has some good things and some very bad things. I have had some terrible experiences with HMOs which are companies (a business to make money) who control the medical decisions: the doctors are their employees! The Federal Plan would be the government trying to save money and provide everyone with health care. Conceptually - this sounds great, but the devil is in the details. In a nut-shell: some would benefit and some would would not (me being in the second group).

If I would have had my PPO and not Kaiser HMO: I would have gotten diagnosed years - years earlier and not have experienced some of the damage which is now permanent. I pay $1600/mo for my PPO and that takes almost my whole salary (lucky we are a two income family), but just one of my medications costs over $1800/month (and I pay $20 for it).

OK, I going to stop now because it scares me to death when anyone tries to mess will my ability to control my medical care. Right now I can control my treatment and I am so AFRAID of loosing that ability.

I do agree that something needs to be done - costs are too high. Why does one medication cost $1800!!! Is it made with gold. I know about all of the costs of research, FDA trails, etc... but the drug companies should not be getting rich while the people who need these drugs cannot afford them.

Hey, has anyone in the US found a condensed version of the current health care reform bill? If yes, could you post a link to it.

Sangye, You are great! "For days I'd been trying to get a laugh out of him--nothing. I think he had a chronic deficiency of joy. That's worse than Wegs!" With all that you have been through, you have a great attitude - you inspire me :)

Sangye
11-30-2009, 03:11 AM
Oh yeah, Kaiser HMO is very famous for being the worst. (For a LONG time, too!) Glad you survived them!

crackers
11-30-2009, 09:14 AM
i am so glad i was born in the uk where all these problems don't exist.i know it's not perfect but a health care system that is profit and not patient driven is just not right.
john.

AnnaG
02-10-2010, 08:56 AM
Egads, Sangye, that waterboarding had to totally suck, But man you gave me a much needed laugh. ^^
I had a colonoscopy 2 years ago and had polyps removed and I woke up during it. Man, with a spastic gutt, all that air they pumped in me was pure torure. The nurse was pushing on my gutss and I gave her a good smack. Then they pushed more meds but I still didn't go out. I was screaming for them to stop. It took a good 10 minutes for them to get done. Well, they figured I wouldn't remember it. WRONG! I told them the whole story and that GI was stunned. He said that from then on to make sure to tell any dr about it and that I needed general for procedures as twilight doesn't work on me anymore. He said he'd never seen gutt spasms like that in his life. Well, in a way I'm glad it happened as they then believed the amount of pain I have in my gutts. On Bentyl for that now. It helps but makes me so tired.
Wow, I'm running on. But it's nice to vent about this stuff.
I've had several procedures gone wrong, but I'll save those for later... one is kinda funny...involves a gyno and a speculum hehehe.

gwenllian111
02-19-2010, 12:09 AM
They said I "looked too good to be flaring," .
.

I get this A LOT, even when I feel really unwell. It's quite a hidden disease in that sense.

What a sad story. I hope his wife takes legal action over the awful care her late husband received.

My WG was undiagnosed / left untreated for nearly 8 years, by my Thoracic consultant. I kept telling him that I couldn't breathe properly, and didn't feel well, but for 8 years, he ignored me completely until I nearly died, and other doctors took over to save my life. It left me with a permenantly scarred trachea, countless surgeries, and loss of vision in my left eye which wouldn't have happened had I been immuno suppressed. Very frustrating.

I'm glad I took legal action against him, (the hospital), if nothing else, to raise awareness about WG.

Sangye
02-19-2010, 01:09 AM
I'm glad you did, too Gwen. Eight years of ignoring symptoms like you had is totally inexcusable.

Nancy
04-30-2010, 03:10 AM
Sangye - your current position is one that I am worried about being placed in... In fact - I closed one of my IRA's to support my current time off/COBRA insurance costs...i argued with myself that retirement money would do me no good if I was not there to "enjoy" it... The idea of not having WEGS treatment coverage - whew...
I also was awake for my initial Bronch....I remember trying to figure out how to move my fingers to communicate and tell them I was awake. All they did was hold my hands harder... I told them after I was awake and same result from the Pulmonologist... Medical people have to remember everyone is different - all drugs do not work for all people!!

Sangye
04-30-2010, 03:33 AM
I'm grateful that I was choking so much that I knew they were aware I was too awake. I didn't have any fear like "They don't know I can feel this" which has got to be the worst nightmare. I guess enough of the drug was working to keep me from panicking too much.

LisaMarie
07-01-2010, 01:05 AM
Ok I will have to tell my bronch story...after a mis diagnosis of vocal fold disfunction....i finally was able to have a bronch done by a very reluctant pulmo...the one I wanted was out of town...she is great but was not available...she suspected WG from the start.....any way...I was awake for all of it and you could've heard a pin drop when she saw the stenosis and pushed thru it any way to look farther down...she could only do a wash to sample my bronch and I started having difficulty so she could not go further...turns out she totally occluded me when she shoved it thru....she allowed my mother (also a nurse ) to remain in the room during the proceedure.....the doc honestly did not think she would find anything unusually....needless to say my mom took 45 minutes to recover before she could come back to see me....I was terrified and can only image what my mom went thru..I WILL NEVER SEE THE PULM DOC AGAIN....so yes I am going to fight to see the best doc to treat me....I am concerned otherwise things will be missed....my right jaw bone still hurts but is not a swollen as before the methrotrexate and pred......Thanks for letting me vent

Sangye
07-01-2010, 01:38 AM
Wow, that's horrible! I can't believe a doc would proceed, knowing it would completely block your airway. Once she saw that she should have backed out and said there's no way to do a bronch until the stenosis is addressed. Didn't she take CPR 101-- "Maintain Airway first"

elephant
07-01-2010, 01:46 AM
That was scarey! So glad you are going to the best, I agree with you...we all need to see the best when dealing with our ( WG) issues!

Sangye
07-01-2010, 01:49 AM
Elephant, how are you feeling? Are you having fun on your vacation? Vacation and remission-- two things you very much deserve. :)

elephant
07-01-2010, 01:55 AM
I am enjoying my vacation with my kids...visiting my siblings. I was put on antibiotic ( Bactrim) for two weeks and it caused severe insomia...only getting 3-4 hours of sleep. I am off it starting today, but I take Bactrim one pill DS every other day. I still have post nasal drip, so I will keep an eye on that.
How is the prednisone going? Are you feeling better every day?

Sangye
07-01-2010, 02:00 AM
Take it easy! I hope the sinus bug clears up quickly.

I'm doing okay with the pred. Still a little unsure if 2.25mg is enough or if I need to bump it up to 2.5mg. Today should be more clear. :)

Lightwarrior
07-01-2010, 03:21 AM
I've learned that they don't have much sense of humour when they are caught making a **** up. Perhaps they are afraid of litigation?
Perhaps they should be, I am so sick of Doctors not putting the patient first, afraid of stepping on toes of other doctors. I've been doing a little toe stepping lately and I'm not done, best they put on steel tipped boots.

Sangye
07-01-2010, 03:26 AM
I have a personal Zero Tolerance Policy for docs not putting my care ahead of their egos. Thankfully, I rarely have to enforce it anymore.

elephant
07-01-2010, 04:37 AM
I learned to be persistant and if that doctor does not listen I will tell another and then dump that doctor. If I am super pissed the doctors will hear an earful...I don't swear...but the questions that I ask them...they are usually unable to answer and that is my point....meaning " I need this check out...blah, blah." Then of course they have too check it out, if they don't then they are in big doooo......dooooo.

coffeelover
07-04-2010, 05:34 AM
[QUOTE=LisaMarie;18448]y do a wash to sample my bronch and I started having difficulty so she could not go further...turns out she totally occluded me when she shoved it thru...

When I was first going through all the testing procedures prior to my trach surgery. ONe of the doctors I had to work with was a pulminologist (young and cocky) and he did a bronchoscopy on me. I too was awake through the procedure and he too "shoved" it through so I could not breath at all. Although it was temprary and I was sorta out of it...THAT I do remember! He is no longer with the hospital I am working with. I wonder if there was a reason??? (sarcasm)

freakyschizogirl
09-24-2010, 04:47 AM
It really is shocking the lack of care some Doctors have to Patients. Reading the original post Sangye i was shaking my head the whole way through. Its so typical of Healthcare in general, despite what country you're in.
So sad he didnt get the diagnosis that would've saved his life. Is thre no Doctor out there who goes outta their way for Patients?? Or just to think what if? And do a bit of research.

Sangye
10-27-2010, 01:56 AM
Since this thread is a Sticky, I want to return to the original topic. We've now lost another member of our group (CindyR's mom) to Wegs and/or its complications. She was being treated in the ICU by non-Wegs docs. CindyR contacted the Wegs doc's office for his input, only to be told the hospital docs had to request it.

When I was hospitalized at a local hospital with severe vertigo and hearing loss in July, the docs ignored my demands to call my Wegs docs. I finally called my Wegs ENT myself, who was horrified that they weren't treating the sudden hearing loss. He told me what treatment was required. I called the hospital doc in and demanded she call him immediately, that we were going to begin his treatment plan immediately. She was wishy-washy. I actually shouted at her.

I was in for several days and every single day this doctor was wishy-washy about my care. Every single day I had to demand that she call my Wegs doc to check in, and I called him myself to make sure she did. They messed up the treatment one day (gave me half as much pred as I needed) and when I found out the next day my Wegs doc was livid. I raised holy hell in that hospital for 6 straight days to make sure I got proper care. The result is that I preserved my hearing. I'd be completely deaf in one ear if I hadn't.

I write this because we have to take matters into our own hands with Wegs. If you want a Wegs doc to consult, you must demand it. Don't worry more about their feelings than about your health. Make sure your friends and family know to be demanding if you're unable to do it yourself.

elephant
10-27-2010, 02:56 AM
Sangye, I don't understand why so many doctors are so reluctant to call the specialist! That is good advice Sangye.

Jack
10-27-2010, 05:21 AM
I think it is because they don't understand what they are dealing with so don't see the need. They have probably managed to treat most other patients that came their way without loosing too many.

eileenv
10-27-2010, 08:44 AM
Sangye, I know i have moaned about the nhs here but it just makes you realise how fortunate we are. It is bad enough to get a diagnoses of wegs, let alone have to worry if you have the right cover. The things that have happened to people while undergoing procedures is truly horendous.

drz
10-29-2010, 10:58 AM
Since this thread is a Sticky, I want to return to the original topic. We've now lost another member of our group (CindyR's mom) to Wegs and/or its complications. She was being treated in the ICU by non-Wegs docs. CindyR contacted the Wegs doc's office for his input, only to be told the hospital docs had to request it.

When I was hospitalized at a local hospital with severe vertigo and hearing loss in July, the docs ignored my demands to call my Wegs docs. I finally called my Wegs ENT myself, who was horrified that they weren't treating the sudden hearing loss. He told me what treatment was required. I called the hospital doc in and demanded she call him immediately, that we were going to begin his treatment plan immediately. She was wishy-washy. I actually shouted at her.

I was in for several days and every single day this doctor was wishy-washy about my care. Every single day I had to demand that she call my Wegs doc to check in, and I called him myself to make sure she did. They messed up the treatment one day (gave me half as much pred as I needed) and when I found out the next day my Wegs doc was livid. I raised holy hell in that hospital for 6 straight days to make sure I got proper care. The result is that I preserved my hearing. I'd be completely deaf in one ear if I hadn't.

I write this because we have to take matters into our own hands with Wegs. If you want a Wegs doc to consult, you must demand it. Don't worry more about their feelings than about your health. Make sure your friends and family know to be demanding if you're unable to do it yourself.

Good advice and scary when you think about the potential consequences. When I was in a nursing home for rehab work I had to have a local doctor to over see my care. One time when I developed some new symptoms the nurses wanted me to go to local emergency room for evaluation. He vetoed it and later came to see me and told me there was nothing wrong with me even though the nurses and my family could see some of the symptoms like my sudden hearing loss and trouble swallowing. Fortunately my rheumatologist who treated me at a hosptial a few hours away was aware of my symptoms and told the nursing home staff to transfer me down to his hospital ASAP since I appeared to be having symptoms suggesting a flare up of Wegener's. Until then the local doctor had done fairly well in treating me even though he knew nothing about Wegener's. None of the other doctors I saw in emergency rooms did either but they were open to admitting their ignorance and getting advice from those who had more experience in this area.

I wonder how many people die from incorrect care due to lack of expertise in treatment or incorrect diagnosis. I think most of us with significant damage from the Wegener's might have been spared the hearing loss, lung damage, kidney damage etc if we had been correctly diagnosed and treated earlier. One of my doctors (a podiatrist I saw for my pain in feet and legs before my diagnosis) apologized the other day for not recognizing the cause of my symptoms and refering me to a rheumatologist instead of a pain specialist who evaluated me for spinal stenosis and neuropathy.

If I had known my diagnosis during initial hospital admission and been as wise as Sangye I might have been able to save my hearing too and balance on right side. I had to have BAHA surgery two years later to restore it partially. Poor treatment from incorrect diagnosis and lack of expertise can be a killer.

Sangye
10-29-2010, 11:44 PM
I wonder how many people die from incorrect care due to lack of expertise in treatment or incorrect diagnosis. .
So far, the deaths of every person we've lost in our group can be attributed to inadequate care and/or lack of expertise. Even the gentleman who inspired this thread--while not a member of our group-- died because of it. My guess is that the numbers are quite high. The numbers of Weggies incurring damage unnecessarily are probably staggering.

Palmyra
10-30-2010, 02:28 PM
How awful for you to remember that experience. I think the good one's (docs) put themselves in your shoes, and live each moment with you. I am grateful you have been so careful with your providers Sangye. May your experience teach many others, so thank you for sharing.

Sangye
10-31-2010, 01:09 AM
I'm glad to do it, Palmyra. If suffering can't be used to benefit others, it's wasted.

Jack
11-23-2010, 08:37 AM
A friend's partner is in his 40s and has just been diagnosed with a condition called PSP that I have never heard of before. I just Googled it and it makes Wegener's sound like the easy option! Progressive Supranuclear Palsy (http://www.emedicinehealth.com/progressive_supranuclear_palsy/article_em.htm)
There is some bad stuff out there. :(

Sangye
11-23-2010, 09:27 AM
How horrible... No matter how bad off we are, we don't have to look very far to find others worse off. :sad:

renidrag
11-23-2010, 10:40 AM
If I can go back to the bronchoscopy for a moment, I was told before the procedure (twice) that I would be in and out of conciousness because they needed me to react to some of their orders. I must admit I found it pretty ugly but knowing before hand eased the anxiety. I am going to Google PSP now.
Dale

wgrebel
12-21-2010, 06:22 AM
I was hospitalized in October 2010 with "pneumonia" after going though all the classic sinus misteps, surgery and a week in the HP a month earlier to treat a "sinus infection" that would not go away. The only thing that saved me was a doctor who had worked in larger hospitals than my local smalltown HP saw the splinter hemmorages in my fingers and the purple toes from the vasculitis and contacted doctors and a larger HP in Memphis to inform them she though I had Wegs. If I had listened to local doctors I, as I was told in Memphis, would have lost my feet and been on dialysis. This is what makes Wegs so scary.

gunnyl
12-30-2011, 01:42 PM
My first time in they misdiagnosed me with West Nile Virus and sent me home. When my wife called to bring me back in to the ER, the Dr told her not to bring me back in that there was nothing they could do and I should just stay home and ride out the symptoms. She didn't listen and took me back in. Luckily the right Doctors were in place the second time around. My Pulmonary Dr diagnosed me while I was still in the ER after looking at the tests that were run the first time I was in and consulting with my rheumatologist who ran them.

skipper
07-15-2012, 04:56 AM
Is there anyone in the Toronto Ontario Canada area that knows of a Wegs specialist? I am in a small city and there are no rheumatologists and I get most of my information from you. That is very helpful and it has given me great direction but I would like to sit down with a specialist and ask a lot more. Any advice would be helpful.

pberggren1
07-15-2012, 07:15 AM
Dr. Simon Carette at Mount Sinai in Toronto is the best in eastern Canada.

skipper
07-15-2012, 07:20 AM
Thank you Phil, I can always count on this forum and you. Skipper

pberggren1
07-15-2012, 10:16 AM
You are most welcome. It is my duty. I had an appointment to see Dr. Carette a week before I found my Wegs doc right in my city.

KathyB
07-22-2012, 03:24 AM
...chronic deficiency of joy

I'm going to remember that quote! Seems to fit too many people these days! Thanks for the smile, Sangye!

KB:cool:

Dan27
11-13-2012, 09:39 AM
It took almost a year to diagnose my WG. The only reason that it was finally found was that my brother-in-law is a Dr. at Henry Ford Hospital in Detroit. He talked to my wife and told her that I looked sicker than most people in the hospital. When I got there there were 5 Docs in the room from different specialties and it took them about 36 hours to figure what I had. They verified the diagnosis by doing a lung biopsy. I am being treated at Cleveland Clinic where they see anywhere from 5 to 15 WG patients a week.
I feel so bad for the gentleman that died. He must have suffered so much.

Debbie C
11-13-2012, 01:59 PM
Hey Dan,I'm glad someone finally found out what was wrong with u, sorry it had to be wg though. I also go to the Cleveland Clinic and was wondering what dr. u are seeing there. I have been wondering about my dr. on the last couple of visits. They say I am in remission and I am only taking 5 mg. pred. but he wanted me to take cellcept and when I came home and saw my kidney dr. a week later,he told me that was nasty stuff and it will rut yr gut out and not to take it if I don't have to. This last visit he put me on bactrim and I had to go get blood work done for my kdney dr, and my GFR dropped to 57 and my creatine and other things were elevated. I saw my kidney dr. today ( who is also very knowledgable in wg ) and he said it was from the bactrim and told me to stay off it and go get my bloodwork done again tomorrow.So I was thinking about finding a different dr. there or just listen to my kidney dr and not make the trip there.I was just wondering if it is the same doc.

Barbara N
07-29-2013, 01:06 AM
I spent all day yesterday organizing piles of paperwork that had accumulated over the past couple months. I was too sick to deal with it until now. Most of it involved medical care, the majority being insurance papers and medical bills. It was so time-consuming that by the end of the day I was grumbling to myself (even more) about the state of health care in the US.

I hear stories from some of you in other countries with nationalized health care-- no bills, no insurance denials and appeals, no entire day spent just on filing the paperwork....

But close to the end I came across a VF newsletter from a few months ago. I read about a man with Wegs who said that even though he was in awful pain, his blood work always looked great and his doctors thought he must be nuts. He asked if anyone had experienced the same thing. Since that pretty much described me, I emailed him and encouraged him to find a Wegs specialist, that they would know what to do. I also gave him the link to our group.

Today I got an email from his wife. She said he died 3 weeks ago from complications of repeated "pneumonia" and diabetic ketoacidosis. He was too weak to take his insulin, and he was coughing up blood. She said he'd had a continual flare for 6 years. So clearly, he died from Wegs.

I was so saddened by this. He and I had such similar cases. I've never been in remission. I've been misdiagnosed the same way several times by non-Wegs doctors--treated for pneumonia for weeks at a time while I slowly went downhill. He died the week I received my last Rituxan infusion. Maybe if he'd had a Wegs specialist, he might still be alive.

It's a reminder of how vital it is to get the very best and most specialized care we can.

Don't ever put off what you can do today and save it for another day. You never know when of if the other day is coming.My husband bought me a helmmet. I have never worn one in 55 years and I had an accident. I did bumb my head but not hard but you can see the mark where the helmet hit the dirt. Better to be safe that sorry or stykish.

gunnyl
07-29-2013, 02:09 AM
My labs look clean across the board. But I recently came off Prednisone and within two weeks I couldn't make a fist in the morning, all of my joints were painful and swollen and I started getting purpura on my arms and feet. My Doctors are very smart and they know that labs are not always an indication of what's going on inside of us. My Doctors are smart enough to look at the symptoms and realize that sometimes it takes the problem to get systemic before it shows on blood work. My Doctors are not willing to let it get to that point and are very proactive and take my input very seriously because I know what's going on with my body better than anybody. I had a scheduled appointment with my nefrologist and he sent me immediately over to my Rheumatologist who put my back on Prednisone at higher doses with a step down schedule My Rheumatologist squeezed me in when I showed up at her office. Bottom line, we have to be our own advocates. We have to choose Doctors who understand our disease and are capable of thinking in terms that sometimes defy reason. I am fortunate to have such Doctors.
My Doctors showed me the purpura on my feet and arms when I was in the hospital during diagnosis two years ago. They told me to be very cognizant of them and to check myself every day; even on the days when I feel good. They told me that the purpura are a warning sign to me that the disease is active and that bad things are around the corner if I don't do something quickly. I have my Rheumy's cell phone number and I can text her if I show signs and she will call me and make dosage changes over the phone to keep me in check, If I have an Emergency that requires an ER Visit Wegeners related or not she calls the ER and has them isolate me from other patients even while I am waiting. While the health care system is not perfect in any Country, I feel blessed to be living in this one and I am blessed to have been able to choose Doctors who take my care seriously and are proactive rather than reactive. I don't live in a big city or in proximity to a Wegeners Specialty Center like the Cleveland Clinic or the others. I live in a small town Northwest of Dallas. So the doctors are out there, we need to find them and we need to work to educate the ones we have. My wife has emailed specialists in Wegeners around the Country and they have freely provided their information for my Doctors to contact them and my Doctors have used that information to Educate themselves. Bottom line, you know your body better than anyone; be your own advocate and don't take No for an answer when you know that No is not the right answer. Doctors are not G-d's, they are people who 'should' be educated about their specialty. They make mistakes just like anybody else. We need to be proactive in our own care and advance the research of our own doctors by giving them information and links to things that 'we' have found.

gilders
09-10-2013, 06:26 PM
[QUOTE=Sangye;7197] It was so time-consuming that by the end of the day I was grumbling to myself (even more) about the state of health care in the US.

I hear stories from some of you in other countries with nationalized health care-- no bills, no insurance denials and appeals, no entire day spent just on filing the paperwork....

Hi Sangye. I'm from England so we do have a nationalized health care system (NHS). As far as true emergency care it is a brilliant system. But the rest of the care is not always that good. I feel that in the area where I live, the service has become much worse in the last 18 months.
I had a seizure last year and I found it terrifying. There was a concern that my WG had started to attack my brain as the last time I had seizures, which were so severe I was in a vegetive state, was when I first started with WG 19 years prior.
My GP put an urgent request for me to see a specialist. After a week I phoned up to see no appointment had come throught yet. To cut a long story short after a few weeks of waiting I phoned up again explaining how I could see how there might be a long waiting list, but why does it take weeks to just look at a diary/computer and book me an appointment. At this point they explained that there was about another month's wait. For all I knew vasculitis was running riot through my brain. I ended up paying to go private. After the initial consultation I found out the costs for the required MRI scans. There was no way I could afford so returned back to the NHS. I was lucky enough to be put in touch with a specialist nurse and through email, he rushed through the MRI. It was pure luck that I got to speak to this nurse and he was brilliant, but if not for him I could have been waiting a LONG time.
My WG damaged my hearing when I was 17. 19 years later and I eventually got my NHS hearing aid 2 months ago.
There are many stories of how NHS specialist say that there is nothing that can be done, only for the patient to get a second opinion privately and they find out there is other options available. The crazy thing is, is that many of these people (including me) see the same specialist on the NHS as the private hospital, but not all the treatments are available on the NHS. Each geographical area has it's own budget, so there is instances where one post code can mean the NHS will pay for a certain treatment and the next post code (could literally be a few meters down the road) could mean the NHS won't pay for treatment. The "N" in NHS stands for national, but sometimes it doesn't seem that way.

I have always trusted the NHS with my care and truly believed it was the best in the world, but the last 18 months has totally changed my mind. I think the whole system is falling apart. There's been too many cuts and with a huge influx of immigrants, it's at breaking point.

It really is hit and miss, with some great Drs and some terrible ones. I went to see the Ear, Nose and Throat specialist 3 months ago. He had a quick look in the one ear I have most trouble with and said nothing could be done, I'd have to put up with my problems. Another specialist re-refered me to another ENT specailist that I saw last Saturday. He did a thorough examination which showed suspected activity of WG in my nasal passage. He went on to do an endoscopy and a biopsy. Totally different care!

The NHS is only "free" to people who haven't paid their National Insurance, i.e. foreigners and people who have never worked. So although we don't have to reclaim expenses from an insurance policy, we do pay for an insurance policy (National Insurance).

Wegetarian
09-11-2013, 05:40 AM
In my country its a bit similar in the way that if you have a smaller illness it can be difficult to get an appointment. Like I lived in the capital and tried to get a doctors appointment for insomnia but the local hospital told me they only see the available times for 6 weeks and none are available. It was the only time I tried to get an appointment there, since I was generally very healthy.

Then we moved to a suburb to the next city, about 25 minute drive away. Here I've had zero problems getting appointments. What we need to do is call to the health centre between 8am and 10am and they'll call back before noon and either ask me to go talk to the nurse (maybe an hours wait) or then they give me a time to the doctor which is usually for the following day.

With wegs its a bit different, when I was released from the hospital they wanted to send me to some rheumy clinic. The following week after I got from the hospital they checked the situation again and found out they were unable to accept new patients, so I was asked back to the nose-ear-throat hospital where I'm treated and won't see a rheumy. They do the best they can, and my doctor is very nice and she seems smart. Of course its sad that wegs isn't one of her specialities though, but she does consult specialists. Dunno if there is anything I can do, or should try. I only have phone times for her, saw her in Aug and next appointment is in October but they monitor my blood every two weeks and call me with the results.

Spud
10-09-2013, 09:10 PM
Hi Sanye, this damn illness has some very sad stories, always deal with your wegs doc as my doc has never seen it before till i came along and you will find some docs will never see it. I have had 2 flares and the second one looked like it was with me forever as well, but we did get on top of it. For what its worth i do feel for you, love from us all.

lag713
03-22-2014, 10:21 AM
In reply to Sangye -

I was very fortunate to fall in the right hands and receive a diagnosis. Many other docs have said that I look healthy and they were shocked that I had a diagnosis. It is amazing how callous some healthcare professionals can be. This is a reminder of how you need to be your own advocate or have someone close advocate on your behalf.

MikeG-2012
03-22-2014, 01:50 PM
In reply to Sangye -

I was very fortunate to fall in the right hands and receive a diagnosis. Many other docs have said that I look healthy and they were shocked that I had a diagnosis. It is amazing how callous some healthcare professionals can be. This is a reminder of how you need to be your own advocate or have someone close advocate on your behalf.

I had similar results. Five docs all telling me I wasn't sick enough to have Wegeners. Believed them for two years, until I wound up in the hospital coughing up bloody flecks, with major lung involvement with Granulomas and lesions/nodules. I should have pushed more and went to the health system I am using now for a second opinion. But when 5 docs are all telling you, they know better right? Wrong!!!

gwenllian111
03-22-2014, 06:15 PM
I had similar results. Five docs all telling me I wasn't sick enough to have Wegeners. Believed them for two years, until I wound up in the hospital coughing up bloody flecks, with major lung involvement with Granulomas and lesions/nodules. I should have pushed more and went to the health system I am using now for a second opinion. But when 5 docs are all telling you, they know better right? Wrong!!!


At the end of the day, you KNOW your body better than anyone else. It's so hard to be strong with doctors when you feel unwell anyway, it's so hard. :thumbdn:

I find it hard to explain to my doctors that although my blood work is okay, I feel so ill that most days I think i'm dying.

mishb
03-22-2014, 08:40 PM
Great to see you Gwen but I'm sorry that you are still feeling so unwell. :crying:

The wonder drug on here, so all say, is RTX - is this an option for you at all ??

gwenllian111
03-22-2014, 11:16 PM
Great to see you Gwen but I'm sorry that you are still feeling so unwell. :crying:

The wonder drug on here, so all say, is RTX - is this an option for you at all ??

Yeah, i've tried Ritix but I am allergic to it. What are the chances of that happening! :rolleyes1:

X

renidrag
03-23-2014, 12:53 AM
Also good to see you Gwen, hang in there. OK stupid question, what about CTX or MTX or Imuran? Imuran I couldn't take due to allergy but was taken to remission with CTX.
Dale

mishb
03-24-2014, 11:04 PM
Yeah, i've tried Ritix but I am allergic to it. What are the chances of that happening! :rolleyes1:

X


Gwen, that sucks :crying:

So not such a wonder drug for some people then :sad:

Alysia
03-25-2014, 02:22 AM
Yeah, i've tried Ritix but I am allergic to it. What are the chances of that happening! :rolleyes1:

X

I am sorry Gwen. what is your reaction to it ?

Victoriaitsnosecret
03-30-2014, 01:59 PM
Hi everybody- I haven't been here in a long time. Besides my own stuff I also have a child that's going through some tough times. I was diagnosed a little over a year ago. I went to the ER for a pain in my left arm and thought it was maybe cardiac related. As part of routine procedure they did a chest x-Ray and came back and told me I had TB because I had some large cavities in my lung and one was a pretty good a size. I was quarantined immediately. I told them there was no way I had TB. I work with homeless families so we get tested every year and I had just had a negative TB test a month or 2 ago. Nothing was coming up in the blood work. There was talk of parasites, viruses, etcetera. Long story short it took about 3 months and three biopsies later to get a diagnosis. Wegeners but still the ANCA test was negative. I started treatment. Prednisone and methotrexate. Besides fatigue I felt fine. The Doctors said I should have been really sick given the holes in my lungs. Fast forward no change in the holes. No new symptoms, just fatigue which is making it really hard for me to go to work. Blood work is fine. Fast forward a little more and I'm off prednisone for a few months now. I'm having stiffness in my hands and knees and pain along the side of my legs. My finger tips are tingly and numb. I tell my doctor he says I have Carpal Tunnel in both my hands and he gives me braces to wear at night. He sends me to have blood work and I have a Vitamin D deficiency. Lhasa anyone had this happen or experience the same symptoms? I stopped working last June, the fatigue was too bad. Anyway. I just wanted to hear some of your experiences. Thanks- victoria


Sent from my iPhone using Tapatalk

windchime
03-30-2014, 02:20 PM
Hi Victoria, Sorry your son is going through some tough times. That certainly makes things rough for you also.

Are you still on the MTX? Have you had a CT of your lungs and are they stabilized? The tingling in your hands could very well be carpal tunnel and there are tests that neurologist can to do to make that determination for sure. The stiffness and pain in your knee and leg sound like it could be a flare. Have a doc evaluate the leg pain as we are prone to blood clots more than the average Joe. Fatigue is definitely a symptom of this disease.

Are you seeing a good Rheumy that has experience with wegs? And a good Pulmonologist for the lungs?

Some observations: If your lungs had holes as big as the docs say then I'm surprised they didn't go with a stronger drug regimen like Rituxan or Cytoxan. They are both much stronger than Methotrexate. There is probably no change in the holes because they have cavitated or the sides have collapsed in toward the center and they may no longer be active which would also explain why they went with the MTX instead of the big guns.

Hope this helps in some small way and if you have any questions please feel free to ask. You might want to start your own thread under "general weg chat".

Victoriaitsnosecret
03-31-2014, 11:05 AM
Thank you. I've had a few scans and have another scheduled for April 8. The holes haven't changed. When I was diagnosed I was feeling fine except for the fatigue. That's why they went with Methotrexate. But they didn't tell me I should be taking Vitamin D and a daily calcium supplement. I did take your advice and start my own thread. I think maybe it's time for a second opinion. Thank you!


Sent from my iPhone using Tapatalk

Victoriaitsnosecret
03-31-2014, 11:08 AM
If I'm having symptoms while still taking methotrexate would that be considered a flare? Or more like treatment might need to change?


Sent from my iPhone using Tapatalk

Dirty Don
03-31-2014, 11:56 AM
If I'm having symptoms while still taking methotrexate would that be considered a flare? Or more like treatment might need to change?

Yes, on both counts. Maybe more than a flare if the mtx isn't working well or at all. Do you take pred? That can help with the symptoms. Best to you.

Victoriaitsnosecret
03-31-2014, 01:15 PM
Thanks! I was taking pred but stopped maybe 3 months ago? At least I feel more prepared I talk to my doc.


Sent from my iPhone using Tapatalk

Velma
10-06-2014, 11:57 AM
amen! I totally agree.

drz
10-06-2014, 02:01 PM
Yes, on both counts. Maybe more than a flare if the mtx isn't working well or at all. Do you take pred? That can help with the symptoms. Best to you.

If you haven't been in a stable remission for some period of time the doctors may just view it as a relapse and think that you just need a longer period of treatment. If you were in a long term remission my doctors would consider it a flare requiring a treatment change.

daystarr8
10-10-2014, 01:27 PM
Hi Victoria. Yes I've had weird pains on the sides of my legs too. Like a burn/ tingle/soar spot. We named them traveling soar spots because they seemed to move from leg to arm to wherever and stay for a few days then disappear. They occurred mostly when I was in relapse

crowneagle
12-20-2015, 07:31 PM
They were great doctors (except for the guy who belittled me-- he was a lousy doc all round), they just didn't know Wegs all its disguises. They don't understand that Weggies can look fine and be gravely ill. (Not that I looked at all fine. But because I maintain my sense of humor, it gives the impression that I'm in better shape than I am. Gravely ill people don't usually laugh)

Even my Wegs doc said that unless a doc sees Wegs every day, they would have missed my flare.

"They don't understand that Weggies can look fine and be gravely ill." I wholeheartedly agree. That'swhy we get very little understanding from the public at large.