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View Full Version : Irritated and not sure where to turn



carriej22
02-15-2013, 01:57 PM
Hi Folks,

As some of you may know I feel like I do not have the right doctor for me.

I don't think he's a bad Doctor. Essentially, I would not be here if it wasn't for him. He got me into the right hospital, got me the right treatment and fixed me all up. However now that the "life saving" business is over I feel like I would like to see another specialist.

However - it's not so easy as calling up somewhere. I am essentially trapped. My family doctor believes he is the best doctor for me and that I would be crazy to go elsewhere. I like my family doctor; she has never steered me wrong and gets things done for me. However; upon this I thought I would make the sacrifice of switching my family doctor to hope to find better care. I did not want to do this; as I have had this doctor since I was about 6.

I have applied at almost every doctors office in my city. I have not heard back from any except for one internist, fresh out of medical school. He has vowed basically if the metaphorical *doo doo* hits the fan he will be my contact if I land in the hospital. However he admitted he could not help me much; but in an emergency and if I'm admitted he wants me to notify hospital staff and he will come to my rescue essentially and make sure the on call doctors don't screw anything up (like last time, but that's another story... he remembered me as he occasionally does ER and basically saved me from being the butt end of a doctors mistake). He has all my files and knows what's up; so while I feel a bit better about that... I want more!

Here in Canada everyone goes to the doctor for nothing. A splinter. So it makes sense... Why would a doctor take on such a complicated patient when they can make just as much money spending all day looking at people who just think they are sick or have a mild illness. No one wants the sick girl. Doesn't help that there is a massive doctor shortage in these parts... sigh

All of you seem to know so much about your disease.... What everything is called and what everything is. My specialist has not explained anything to me... He just tells me that everything is either OK or not good or up this or take less of that... I want to know what my issues are called.

I bled from my lungs; is this something that will happen again? My toes turned black and almost fell off (thank god they are pink and normal and pretty again!) I was covered in a weird rash... I want education. I might be 23, but I am not a moron. I go to the appointments by myself; I am an adult and I wanted to be treated like one.

A list of my symptoms. I assumed these were all grouped into wegeners; but at my last appointment he was calling them other things! He didn't seem to have time to explain things to me.

Eyes- Red, painful, light sensitive, blurry double vision vampire eyes (he had a name for this)

Kidneys - Blood and protein in urine. Beginning stages of renal failure. Urine was the color of coffee

Lungs - Severe bleeding (couple coughs could fill a sink and looked like you gutted something) (he also had a name for this - some type of some kind of hemorrhaging), nodules and severe breathing problems (cough and choke and can't catch breath. Was on oxygen). Coughing

Legs & Feet - Sores everywhere. Deep, pitted, nasty sores. Swollen feet, sore feet, limping caused by pain. Black, seeping nasty toes.

Face - Severe crusting/ulcers in nose, bleeding and raw meat like inside, stuffiness and sinus pain. Huge lumps of alien slugs. YUK. Sores in mouth and on tongue. VERY sore. Headaches

Overall Body - Extreme pain. Could not walk, roll over in bed or lift arms at worst point. Severe weight loss, swollen joints. Couldn't use my hands... I was essentially a vegetable.

Ears- Hearing loss severe in left ear, slight in right. Crackling

OK... I think I got it all. Almost all of this is gone. Only thing I held onto is the cough; and a bit of hoarseness. However.... Are these all NORMAL wegs symptoms? I just seem to be reading so much about people who only have sinus problems, or kidneys, or lungs... I seem to have all of the issues... is this normal? ... My specialist sometimes acts like it's not a big deal; or like it's all good... But then he will turn around in the next sentence and say "This is a very, very serious case.." or ... "You might only be 23, but you need to be thinking about your health all the time" He told me the other day "you'll be fine as long as your kidneys continue to stay good"... like what does that even mean???

Sometimes I feel so in the dark about the entire thing. You guys are all talking about your values, your individual specialized issues and I don't know any of that. I don't know any of my numbers, what stuff is... Basically if he calls he will say "received your tests results, inflammation is up, Add blah blah blah". If I don't receive a call, its all good. But I want to know these things. Can I just ask him to give it to me? It seems like it's such a big secret. My grandma wants to come with me and tear a strip off him; but I really don't want to resort to Joyce's wrath. It's a force to be reckoned with. Plus she will just get upset; I don't want her to be upset and worry about me more than she does. I only tell her things on a "need to know" because I am her baby; and I don't want to upset her anymore than she is. She has enough to worry about.

I am concerned because I am still going for bi-weekly testing. It was weekly up until two weeks ago. This makes me feel as though something is still wrong; as why is he making me go to all these appointments? 8 Months of weekly bloodwork and urine testing!

I feel OK right now. Lazy as all heck and feeling a little fuzzy. Never really was able to kick that fuzzy/duh feeling.

Thoughts would be appreciated

pberggren1
02-15-2013, 02:05 PM
One word: Toronto.......Dr. Carette.

Get your doc to consult with him. Your doc does not know Wegs obviously.

Yes, you need to have copies of everything. I don't get copies any more, but then again I see my doc every week and go over everything with him. I can help you understand what all the different tests are and what they mean.

Have you contacted the VF to see if there is any doc listed with them that knows Wegs in NB?

mishb
02-15-2013, 03:23 PM
Mine is kind of like that Carrie,

My specialists don't say a thing and they never give me any test results - just say gone down, gone up......show me a little graph of the ups and downs over the years and that's it. They don't even send test results to my GP, just letters on how things are going at the moment.

Every now and then I get my GP to run the same bloods etc, so that then we can both look them over and see whats going on.

You are quite entitled to ask for copies of your test results under the privacy act, they are yours......and they shouldn't blink an eye if you say.....would it be okay if I could have a printout of my test results.
I do that with my GP (and get them) but not at the hospital (specialists) because they only work off thin clients (just monitors basically) and don't have access to print options. You actually have to put the request in writing to our hospitals if you want copies and then they charge a fee.

If I didn't find this forum, I would never have been so forward as to even ask my GP for results.

I also think that all of the conditions that you have mentioned are all part of the WG. Send Phil a message with the results you want answers too.......he is a fountain of knowledge :biggrin1:

One thing this forum has taught me is to never be afraid to ask

Good luck

drz
02-15-2013, 09:17 PM
I would second what Phil said. Link up with an expert and get consultation with him even if it is just an annual visit. I had most of the same symptoms as you except the sore toes and deep skin sores. I do have some skin lesions but they are consider a precancerous type of lesions and are related to Weg treatment. I did have significant rash over my body but think that was an allergy to some med they gave me. My kidney damage was worse than my lung damage. I have some other problems too like significant diabetes as well as other damage caused by Wegs or its treatment which has required considerable medical treatment and/or follow up. I spent several months in hospitals and rehab facilities before I recovered enough to live in my own apartment in an assisted living complex which has on site medical services. I also lost my balance mechanism when I lost my hearing.

I think I am getting good medical treatment and my degree of recovery is consider rather miraculous given the severity of my intial Wegs. I still have many limitations from the Weg damage and treatment and need lots of medical followup. My treating doctor for Wegs has consulted with two top experts in Wegs and i also see one of them at Mayo for regular consultation to monitor my condition. Both of these Weg doctors have educated me on the lab work they use to monitor my Wegs and related complications from treatment like anemia, liver function, urine analysis, ANCA scores, inflammation markers etc and i get copies of all lab results and keep them in a PDA. I have to then help educate any ER doctor or my local internist or other specialists i need to see as to what the lab results mean for me and sometimes recommend what tests they need to run to check some thing out. One time my local internist put me in local hospital and consulted with my treating doctor for Wegs and was able to treat me effectively and successfully at home which save me a lot of hassle and travel.

Learning how your body reacts to things and how your Weg dog is behaving is a long slow process. We can help in this process but we should never assume we know what is happening without having a physician evaluate the data and our symptoms as new things can develop and have different significance. We can also become experts too about our selves and Wegs but I think a second opinion by an outside reviewer is always necessary too. Mistakes can be fatal and we have lost several members from our forum.

annekat
02-17-2013, 05:22 PM
Carrie, everything I know about Wegs (which is a lot less than some of the more seasoned people on here), I learned here on this forum. Unfortunately, this is common; my doc is the same way, and he may even know less about Wegs than yours, or if he knows more than I think, he isn't saying. He has figured out how to prescribe the drugs, and I've gotten better, but now I'm in a flare, and I can't be sure it is being handled properly. I actually think I'll get through it OK with the increased meds he's prescribed. But long term, at my age of 60, I think I need someone with more of an overview of the disease and more time to spend discussing it with me. And someone who will routinely consult with top specialists.

As I understand it, the symptoms you are describing are normal WG symptoms, but it just seems they are more intense for you than what a lot of people, including me, experience. One doctor implied he "can't help you much".... I heard that same comment about a local Weggie who went to a local rheumy and was told the same thing. I think it is negligent of a doctor to tell you he can't help you much but then not go to the effort to find you someone who can, even if only on a long distance consultation basis. My doctor has shown no interest in consulting with a specialist; I suppose he might if I became gravely ill, as in, about to die, maybe having septic shock as Al and Lightwarrior did before they passed.

I've also been thinking of changing my GP..... I like her, but she is a PA, which isn't bad in itself... but she knows nothing about Wegs and isn't about to learn because she would have to do too much research. I would not be expecting her to be my Wegs doc, but I'd like to have a team where everyone is pretty knowledgeable and doesn't just leave it up to the main WG doc to have some understanding what is going on. I would expect a GP to know that getting us the best care for our WG doesn't mean just finding the best possible local doctor.

I know we talk about getting better doctors, true specialists, etc. and don't do it. I'm not sure why we don't, except that it isn't easy. I'm not going to "sell my house" to go to a major WG center. It just ain't happening. After I paid off the mortgage, I'd still have next to nothing and nowhere to live. So for me, the best solution would be to find a decent rheumatologist in my state with some WG experience and who is maybe involved in research at a university med center, who is ready and willing to consult with top WG specialists. I know of one, and it is on my list to see if he will take me.

Oh, I could go on and on...... best of luck in this decision.... there has to be someone more suitable than your current doc, and your GP may not know enough to know that your WG doc is not the best one for you.

Pete
02-18-2013, 12:35 AM
Hi Anne,

The time for action is now! While you may like your PA, they aren't educated in the nuances of dealing with rare diseases. My PCP used to be an ER doc and saw a lot of stuff. When I had my first appointment with him (just as I was coming down with GPA), He wasn't quite sure what was wrong - just that I was too sick for an ear infection. Since I was presenting with an ear infection, he made arrangements for me to see an ENT at the ER (couldn't get into the office at that late hour). The ENT also saw that I was too sick to have just an ear infection and admitted me. A pulmonologist dxed me five days later.


I stuck with the pulmy for about 18 months post dx. He kept me on ctx almost the entire time, which flew in the face of treatment protocols others on this forum were following. He admitted that his practice might see 20-30 GPA patients, so I self-referred to Cleveland Clinic where that practice sees about 700 weggies. My experience at CC has been very positive. My PCP (here in Columbus) consults with my rheumy so they are on the same page regarding my treatment. So far, so good. Btw, the pulmy still treats me for asthma and is sensitive to any GPA-caused quirks he may notice.

drz
02-18-2013, 01:02 AM
When I got out of the hospital and nursing home after my Weg diagnosis and treatment i went shopping for new primary care physician. My old internist wouldn't take me back (he hadn't done very well in recognizing my GPA symptoms either) and most doctors wouldn't accept any new Medicare patients because of its low payment schedule.

But every family doctor and nurse practitioner I contacted also told me they would not accept anyone as a patient with my health history of GPA and diabetes and the issues I had from damage from those two diseases and the meds I required for treatment. They said my case was just too complex and beyond their ability and skill to manage safely.

They all recommended I find an internist and other specialists to get the care I required. It took considerable effort but I managed to link up with several specialists that I trust to monitor my health and recommend appropriate care. My primary care physician is local internist and only has three other GPA patients but she is willing to consult with my specialists on my treatment needs and they send her copies of my consultations with them. She prescribes almost all of my meds.

Getting good healthcare is an ongoing process since doctors quit practice and move around and some don't pan out. I had to go find another opthamologist recently since one wasn't willing to be thorough enough (wouldn't check my eyes more than once a year and another had poor relationship skills and didn't share enough info with me for me to trust him) so I found another an hour drive away that seems more suitable for my needs and philosophy.

Finding good care can be a hassle and require considerable effort and expense if you don't live next door to the Mayo or Cleveland clinic. I often have to travel for hours and stay over night in motels to see some specialists who are some distance away, but I feel trying to maintain my health for as long as possible is my number one priority. Without it, I have very little left to enjoy. When I feel sick I spend most of my time in bed or napping and when it is more serious I end up in a hospital where I can do very little fun stuff. I know any big mistakes in my health care can be easily fatal as I almost died initially from failure to get my Wegs diagnosed early. We all know from the forum members we have lost so I think it is worth the effort to try get the best health care you can. I no longer fear dying but think I still have a lot of good living left to enjoy if I take care of myself. My last consult at Mayo suggests I am in a drug induced remission for my GPA disease.

annekat
02-18-2013, 02:20 AM
Thanks, Pete,

To clarify, my PA does NOT treat my WG, I wouldn't even dream of it, nor would she. I only see her once a year for my "annual exam", you know, the female stuff and other routine stuff. I only mentioned her because I thought it would be nice to have a GP as part of the team who was a little more able to talk to me about Wegs and make sure I was getting the proper care. I wouldn't expect the new GP to be my Wegs doc either!

I have an ENT who treated me for years and was the one in a position to think of Wegs as a possibility. I, too, was "too sick for an ear infection", but I eventually got better, and two years later he was in a position to dx me with Wegs. But he stated he doesn't treat it, my theory being that he knows he isn't qualified. He had previously referred me to a pulmy for asthma, and when Wegs presented in my lungs, that's where I went.... this guy immediately jumped in and took over my treatment, with the ENT's approval, the consensus being there are no WG specialists in my area so this would be the most expedient and acceptable route.

It is a lot harder for people on the west coast to see Wegs specialists, especially if they are low income and cannot travel. That's why I mentioned possibly getting a rheumy at a state university med center who is already known to consult with Dr. Langford at CC. Yes, the time to act is now, but they are closed today, it's Sunday, and when I go, I'll have to make sure I can pay for the gas to get there! Or figure out how to take the bus or train.

annekat
02-18-2013, 02:28 AM
Congrats, drz, on having been declared in remission from GPA! I hope it lasts so you can focus on your other health issues without that being an extra complication.

JeanMarie
02-18-2013, 04:15 AM
Carrie--I think we've all been in the same place as you. One thing to offer you, if you think you'd like more info, try the vasculitis foundation. They have great videos, including the tapes of the last symposium. I learned alot from them & feel it makes me a smarter patient. YouTube Education Videos (http://www.vasculitisfoundation.org/mcm_resources/youtube-education-videos/)

Good luck & stay well
B

annekat
02-18-2013, 07:03 AM
Thanks for that link, JeanMarie. I bookmarked it to watch later. There seem to be all kinds of links coming my way today and I need to get started on some household chores! I'm sure Carrie and all of us will get something from the VF videos.

chrisTIn@
02-18-2013, 11:30 PM
YouTube Education Videos (http://www.vasculitisfoundation.org/mcm_resources/youtube-education-videos/)



I didn't see this before...
Very good info!

Thanks JeanMarie :thumbsup:

drz
02-19-2013, 02:30 AM
I didn't see this before...
Very good info!

Thanks JeanMarie :thumbsup:

I especially like the one by Merkel on current state of treatment of vasculitis. Great summary and intro.

carriej22
02-19-2013, 10:29 AM
Thanks guys.

I guess I will just hang it out and see. I have an appointment in April again; I have so much going on right now I just want to forget about wegs and live my life (as if that will happen).

And those videos are great.

Debbie C
02-25-2013, 11:45 AM
Congrats Drz on your rermission ,I hope you continued good health.

Carrie..don't be afraid to speak up to your drs....it's your health and get your records what you don't understand you can always ask on here or google it.If I were coughing up that much blood I would be on my way to Cleveland. I get worried when I see a little bit of blood from brushing my teeth !!!!And all those other issues don't seem normal but a bit extreme to me. Take Phil's advice and check out that dr. he mentioned.
I went last week to a new reumy here in town so if I had an emergency I'd have one close.When I called to make a appt. I asked if he was knowledable in wg and the recp. said yes,when I got to the appt. and signed in I asked again as I was writing my check for my co-payment and again she said yes he sees other patients with it. WELL when I saw him he didn't have a clue so I collected my papers and said I wanted my check back (which I got ) and told the recp. she needs to find out what her boss deals with and left. I don't have time to deal with people that don't know how to treat me. Like I mentioned before sometimes your best dr. is your kidney dr. Good luck in getting one soon and I hope you stay well.

skipper
02-27-2013, 02:37 AM
i needed this information about Dr. Carette in Toronto. I am not far from there and my doctor doesn't know anything about wegeners and when he does make a "guess" it is usually dire and i end up in tears. Today the nephrologist's nurse called to say my blood count was 85 in spite of the fact i inject airsesp every ten days. i am so weak, tired and fuzzy i hardly want to move. i can't sleep at night and try not to during the day. I am extremely depressed. i was diagnosed exactly a year ago and in remission but my kidneys are working at 30 percent. i feel like i am rambling much like the way i spend my days. my question is - Does haemoblobin ever improve? do you know of any other methods to help. I want to be positive but it is so hard these days. I have always had so much support from this group and Carrie22 i feel for you. You are in a challenging place but with the right doctor there is a LOT of hope. Skipper

drz
02-27-2013, 03:33 AM
i needed this information about Dr. Carette in Toronto. I am not far from there and my doctor doesn't know anything about wegeners and when he does make a "guess" it is usually dire and i end up in tears. Today the nephrologist's nurse called to say my blood count was 85 in spite of the fact i inject airsesp every ten days. i am so weak, tired and fuzzy i hardly want to move. i can't sleep at night and try not to during the day. I am extremely depressed. i was diagnosed exactly a year ago and in remission but my kidneys are working at 30 percent. i feel like i am rambling much like the way i spend my days. my question is - Does haemoblobin ever improve? do you know of any other methods to help. I want to be positive but it is so hard these days. I have always had so much support from this group and Carrie22 i feel for you. You are in a challenging place but with the right doctor there is a LOT of hope. Skipper

My hemoglobin levels improved after I began treatment for Wegs but it took several months to start getting better and about a year to get back in normal range. I had blood transfusions for many weeks after diagnosis in an attempt to keep my HG levels in double digits. Even after I left the hospital and went to rehab in a nursing home I had weekly transfusions for the first month. It slowly got better after the bleeding in kidneys and lungs decreased. Getting off CTX also seemed to help me. I had another med that was also contributing to my anemia that I had to discontinue so have a pharmacist review your meds too to see if there are any changes that might help.

Anemia really increased my fatigue too so it is tough to function when it is serious.

Barry
03-01-2013, 05:04 PM
Sometimes if you want information you haveto specifically ask for it. Your doctors have to deal with alot of different personalities in their clients. Suprisingly many people have an "ignorance is bliss" mindset so they start on that level and will stay on that level unless you give them a CLEAR indication you want more. When I go to my cardiologist and she says everything looks great I then ask for a copy of the test results. She then says sure hits the print button and gives me a copy and asks if I have any questions. I truly believe most doctors WANT you to care as you do about your health. Be CLEAR and SPECIFIC about what you want and they will give it to you. Here in the states they have to.

carriej22
03-03-2013, 04:09 AM
It would be so much easier if my Doctor didn't scare the crap out of me.. LOL

annekat
03-03-2013, 05:13 AM
It would be so much easier if my Doctor didn't scare the crap out of me.. LOL I can relate, Carrie. My doctor is kinda scary, too.