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JohnBearcat
09-27-2008, 01:33 AM
My only family my son Bobby died on 24th July 2008, he had WG it started to kill him in October 2000, he was being treated for migraine headaches and colds in chest from age of 16 till he was 26, Doctors have no idea they just seem to do as whoever treated him before, typical do as Simon does,

I wonder now do Doctors try and heal people or just prolong illness by not finding out why people are really in pain its obvious he didnt have migraines or cold

Dr France in Ninewells Dundee Scotland told me my son had a slight lesion in his lung. and not to worry yet three month later arrived in USA ,2 days later collapsed, and surgeon in USA said after examination, my son had a hole in his lung size of a golf ball and had been suffering from a lung top being dead for a long time,,

Yet Dr France in Dundee assured me my son had 4 X rays and his lung was ok and must have burst in plane to states, what a quack excuse,If I was a Witch Id hex him till he suffers the pains my son suffered,

So if you get sick in Scotland dont get signed into Ninewells Hospital,which now Im told is where they train more butchers

This Doctor in Dundee was like many others they hadnt heard of WG

Terri
09-27-2008, 10:24 AM
To read your story just breaks my heart.
I was so fortunate that my Dr's figured out my disease within 3 weeks and probably saved me from more problems. I was diagnosed in Aug 07. My worst thing today is the hole in my leg from the necrosis.
I had spent 2 weeks in a smaller hospital and they kept debriding my leg because it was dying off and they actually thought I had a flesh eating disease or a bite from a brown recluse spider. I was starting to get short of breath and wasn't responding to antibiotics so I asked to be sent to a better hospital and within 3 days after different tests and a lung biopsy, they told me I had Wegener's.
I can't really say that I've had many good days since then but I still have both legs and my life.
Again, my thoughts are with you and please get support from somewhere.The Vasculitis Foundation is a good place and this site is wonderful. Please check back and let us know how you are doing.
Sincerely, Terri

Jack
09-27-2008, 04:42 PM
I can't say how sorry I feel for your loss and fully understand the anger you must be feeling. Unfortunately, you story is all too common, although the level of knowledge amongst doctors is growing all the time.
I was diagnosed 20 years ago when little was known of the disease, so I allow them this as an excuse for not spotting the symptoms. It took nearly two years to work it out. During this time I had several operations and had developed almost every symptom in the Wegener's list. Looking back with my present knowledge, it should have been obvious what course to take. Instead, I lost my kidneys and suffered other damage.
Try to remember that the doctors are only human and are doing their best, but they do sometimes make tragic mistakes. Try to remember the good times you had with your son. I'm sure you would not have missed them, even if you had known that he would be taken from you.

JohnBearcat
09-27-2008, 08:40 PM
I have attended the local hospital in Fife, Scotland where I stay for 8 year ,2 days a week, the first time I went I had a leg ulcer, and one week while they were dressing it I had a water blister on my toe caused by new shows to tight, so this nurse said we will treat that also I said no it doesnt matter it will heal fast as normal, b ut she insisted and placed on it iodine paste, well since that its made the simple blister into an enormous wound, that over years have attended Diabetic clinics which I dont have, Vascular Clinics ,you name it I have been to and all say same thing they dont know what caused it, they have drerssed it iun everything from a white cream Flamazine then various silver dressings, various other dressings, you name it they have used it,

Then now its Honey dressings and still no one knows why I have two badly wounded toes, large toe is damaged from second toe, its as if the liquid from my second toe wound is destroying skin on large toe, and no one knows why,,all so called referrals are a waste of time, I asked is it not an MRSA bug but they didnt reply to that, The Nurses who dress the wounds just do best they can,,Im on antibiotics every day for last 6month, which I believe are for short time but if they stop it goes necrotic,

I have lost faith in NHS and the quality of dressings they buy and use, I often wonder are these dressings genuine or just a cheaper brand like they do with pills, even my pills are all the cheap brands that have more "Es" than anything else,I wouldnt trust the Dundee hospital near me,, no way would I let THEM experiment on me like they did to my son.

Sadly British standards are very poor now far to many claiming on NHS the NHS just cant afford the best anymore. so we have to settle for whatever there is, and its genuine patients who suffer,,

Jack
09-27-2008, 11:05 PM
Yes, unfortunately there are a lot of things that go wrong with our bodies that we lack the knowledge to cure. During my time in hospital (mainly the Q.E. in Birmingham which is a huge, teaching hospital), I have met dozens of people with conditions I have never heard of. I myself currently have some fairly major digestive issues which, despite visiting several different departments and having every test in the book, remain unresolved. I don't think this is the fault of the consultants. The knowledge is just not there yet. On the other hand, I have been through periods when I have had other problems that are now sorted. I have seldom had to wait for attention and usually received the best of care. Best of all, I've never had to worry about who would pay for it all and I have been able to work and support my family.

JohnBearcat
09-28-2008, 12:12 AM
What I cant Understand in this world is they can walk on the moon and yet they cant cure the common cold is one example, The thing I really find annoying is when you have a rare desease such as WG why all hospitals cant be allowed the same drugs to help the patients ,take Britain many kinds of medication used in USA isnt allowed in UK and vice versa, Life issame for all there shouldnt be worrys about cost about medication after all its cheaper to try and save people as have ilegal wars

Terry
10-22-2008, 01:21 PM
John, I'm so sorry for all you've gone through. :(

Gwenllian
10-26-2008, 03:11 AM
I'm just so sorry.

I thank God every day that I have made it this far.

God bless you and your son. I hope he's found peace now x

crackers
12-20-2008, 04:53 AM
Sometimes I despair at our Liverpool hospital and have been tempted to take John to Birmingham as the main wegener doctor is based there.I just worry that it is a good hour and a half away when our local hospital is 2mins up the road.I am so sorry to hear about your son,we lost our grandson in an rta 8yrs ago and you never get over it but you do learn to live your life again.He is always in our hearts and we think about him everyday
Hugs Sue xx

Jack
12-20-2008, 05:44 AM
I can recommend the Q E in Birmingham, it is the hospital I go to. I started in Rhumatology under Professor Bacon, but then transferred to Renal under Dr Adu. There is a multi discipline team involved in research into Vasculitis and people attend the clinic from all over the country.

Sangye
12-20-2008, 12:40 PM
Sue--At first I stayed with local docs because they were convenient. Over time I realized they didn't have the skill to treat the Wegs, much less all the complications I had. I started going to Mayo clinic, which was 3 hours one way. Well worth it. Now I'm in Maryland, and I go to Johns Hopkins, 1-1.5 hours away.

I really recommend going to a better facility that knows Wegs even if it means more driving. You'll get more answers (which lowers your frustration) and may avoid complications.

You just can't compare the experience and comfort level of a doctor who's only treated Wegs a few times, versus one who's seen Wegs patients day after day for years. A lot of the complications I had totally stumped my local docs. If Jack says the QE in Birmingham is good, he would know.

crackers
12-21-2008, 12:24 AM
Sangye,thanks this is certainly something worth discussing with John
Sue

Sangye
12-21-2008, 03:16 AM
I hope you find excellent care wherever it is.

berylj
08-26-2009, 07:15 AM
im new to this site, i found this page while navigating my way round it!& just had to say how sorry i am about jbearcats story, i was lucky to have my local hosp. in cambridge where there is a vasculitis clinic,& some of the best docs in uk,so i had the best treatment available,it seems to be a case of luck in where you live,but research is ongoing & treatment will improve in time,there are scary stories about the nhs but i
have to say ive had excellent treatment under dr jayne & his team, beryj

Sangye
08-26-2009, 08:25 AM
Nice to meet you! I'm glad you've had such excellent care. When/ if you want, we'd love to hear your Wegs story!

And I'm willing to bet that whatever your worst NHS story is, we in the US could top it. :D At least the British aren't arguing about taking care of each other! :rolleyes:

Doug
08-26-2009, 12:30 PM
berlj- Nice to have you on the forum. Yes, we'd be happy to read you story. As you note, luck of the draw, medically, seems to be the pattern we all have faced. You at Cambridge, Bruce not only in Rochester, Minnesota, but as an employee of the Mayo Clinic! You two won the lottery, in a sense. How those stories come out are of interest, too!:):)

Jack
08-26-2009, 04:48 PM
it seems to be a case of luck in where you live
Very true!
I have two major hospitals within easy reach of my home, one of which runs a center for vasculitis research. Before being diagnosed, I had the misfortune to be attending the one that does not. Instead, I went to the hospital with the larger ENT unit. I wonder how things might have turned out had I chosen differently.

Doug
08-27-2009, 02:59 PM
Very true!
I have two major hospitals within easy reach of my home, one of which runs a center for vasculitis research. Before being diagnosed, I had the misfortune to be attending the one that does not. Instead, I went to the hospital with the larger ENT unit. I wonder how things might have turned out had I chosen differently.

It's an interesting "what if", isn't it? On the other hand, it gives weight to your remarks to new weggies about the importance of actively seeking out specialists with expertise. It's a hard call.

When I tell people I feel I was very lucky when I came down with WG, because of the doctors and nurses involved in my care, I often get a "But you almost died!" response, with a shock-filled tinge of horror in their voices that I'd characterize myself as fortunate, lucky. "But I lived, didn't I!" Not all people regard that as a positive, but they are wussies who've never experienced a threat to life! Ha!

Sangye
08-27-2009, 11:45 PM
I agree with you, Doug. We already had Wegs, so at least we were lucky to have it diagnosed properly.

I just had a major stroke of luck last night that most people wouldn't understand. The past few days my lungs started feeling congested, getting harder to breathe, and I began coughing up small but bright red blood. My spine was also really out of whack. So yesterday morning I took 5 mg pred and went to my chiropractor to get adjusted. In working on me, he corrected some breathing issues so I was breathing much better by the time I left. My plan was to go to the ER in the afternoon if the blood continued. It stopped. Then late last night, I took a bad fall on my kitchen floor and landed straight on my already severely damaged knee. It's excruciating, and the only thing keeping it from being worse is that 5 mg pred I took! Today I'll be at JHU anyway, so can go to the ER for lungs, knee or whatever else, if I need to. No coughing or blood at all today. Cool huh?

Jack
08-28-2009, 01:54 AM
Oh the joys of Wegener's!

Hope your run of bad luck ends soon Sangye.

Sangye
08-28-2009, 10:39 AM
The past 3-4 days I slid backwards a bit (until last night, when I slid DOWNWARDS a lot!). But for the 2 weeks prior, I've been feeling better than I had in 4 yrs. The ctx was kicking in. It gave me a lot of hope that I can get better. I had energy and wasn't hitting the wall. I'd forgotten what that felt like.

crackers
08-28-2009, 10:49 AM
sangye every thought i can muster is on it's way to you.
john.

Sangye
08-28-2009, 10:51 AM
Thank you, John. I believe I can turn the corner again. Hey, if you keep turning the corner, don't you really wind up going in circles??

Doug
08-28-2009, 04:17 PM
Best wishes from me, too, Sangye! :)

Cindy M
08-28-2009, 04:48 PM
Sangye all my positive thoughts are with you. I feel like we are BFF's, I know with your positive attitude you will soon be feeling better.

DuaneHart
08-28-2009, 05:07 PM
Hang in there Sangye! I am still new to all this but am gaining alot of insight to what WG is all about (along with alot of weight from the pred). Tomorrow I take the Methatrexate again, increasing by one pill. That will put me at 12.5 mg. Can anyone tell me what to expect as I increase the dosages?

Sangye
08-29-2009, 01:10 AM
Thanks, everyone. I've taken 5 mg pred for 3 days in a row. The knee is doing better--still pretty awful, but would be much worse without the pred. And I'm only coughing up trace amounts of dried blood. I'm gonna do this for one or two more days and then stop the pred. Even just 5 mg is keeping me from sleeping, making me sweat and feel hyper, etc....

jola57
09-01-2009, 03:21 AM
Glad the pred is doing its job, hope you are keeping tabs on lyour intercranial pressure. How soon can you taper off the pred?

Sangye
09-01-2009, 03:30 AM
So far my head is okay. Today I took 2.5 mg. Because I haven't been on it for more than a few days, there's no need to taper.

jola57
09-01-2009, 12:06 PM
glad you do not feel the effects of withdrawal.

Question to all. I recently purchased a memory foam bed topper and although it is sooo comfy I am just a tad worried about the smell and or gases emitting from the mattress. On line the opinion is varried. Has anyone bought this product, how long did the smell last (I have aired it out for the past 3 days) any bad reactions to the smell/gas

Sangye
09-01-2009, 12:33 PM
Like any other substance that off-gases, polyurethane foam never stops off-gassing. The smell may diminish after a few weeks, but it's still filling the air. Also, heat increases the release of the gases. I always discouraged my patients from sleeping on foam pillows and mattress pads.

Cindy M
09-02-2009, 04:33 PM
Glad you are starting to feel better, just keep doing what's best for you.