Newbie introduction

[marta]

Once again, everything Lisa said I second.
She is a wise woman and much better at expressing what I am thinking

Take her advice, and use her connections.
All you need is to get into the system and start treating those symptoms.
Your current GP shouldn't get the privilege to treat you much more after this.
Not with the way he's handled/handling the situation.

[Susan55]

Hi Lisa

I did call and left a msg with my pulmonologist two days ago, but haven't heard back from her. I feel the pits! . I am doing all I can do to try and get in sooner but no luck yet. The doctor I will be seeing on Sept 25th, I've read the reviews on her and the reviews are not good. But we shall see when I go for my appointment.

One day at a time is all I can do right now and stay strong and keep smiling

I will keep you posted

[Susan55]

Hi Lisa

I am on the phone daily making calls to get in quicker but no such luck. I've also called my lung doctor who I 've been seening for many yrs now. All they did was take my phone number and said she would tell Dr. A Mcnamara ASAP. But it's been three days today and still haven't heard back. I just feel weak, fatigue, very sick to my stomach and just don't feel right.

I went to my E-Health which showed my blood results and then my family doctor called me in the day after the results came back. He said to me..."well after you coming to see me for over 2 - 3 yrs we finally know what is wrong with you and you need to start treatment ASAP and I will refer you to a doctor and he walked out of the room! We never discussed the illness or treatment! I left there in tears, this is how he is with his patients. When my brother went with me to see him a week later all he did was speak to my brother like I wasn't even in the room and asked my brother "is your sister stable" OMG..I almost fell off my chair!!!! I went into numb mode with anger. NOT once did he said oh your sister has WG and needs treatment..so I said blood test shows "positive" for WG and you said I need treatment asap and from what I have read the treatment is presidone and methotrexate he said yes that is the treatment.
I then asked why am I amnot getting an appointment right away, he said oh I faxed it over to Dr. Dhindsa but she is busy...so my brother said I would like it re faxed and he said I will put semi-urgent and re-fax it. OMG OMG OMG
This doctor of mine makes me feel like it's all in my head and it's not! I feel like I am going into circles with all of this. So, I am making all the calls I can at this time.

I wish I would make my own appointment with a doctor.

I don't know how to handle this anymore at this point! my blood test for PR3-ANCA came back saying "positive for WG" so this is all I have to go by for now

I just wish he would listen to me and move on this more quickly

I msg you back Lisa

hugs to you and everyone in the group!

[LisaT]

Ok, I just read these after sending you a couple of pm's and at this point, I'm really angry on your behalf. With the experts and excellent care we have at our disposal in BC, there is NO WAY you should be waiting in fear, feeling crappy and possibly getring more ill. I'm going to ask Dr. Kur or his staff what you can do and who you can call to be seen and treated urgently. But they're not in until Tuesday either. If you still feel this way or any worse on the weekend, please go to the ER. Bring your brother or another support person who can help to advocate for you. It's hard to be assertive on your own behalf when you have no energy. In addition, as you've already experienced, some (bad) doctors treat patients (especially female patients) like infants who need a third party to speak on their behalf. Have your support person take notes, ask questions, and demand immediate care and treatment. If they say go home and wait until you hear from doctors, tell them no, this is a fast-moving disease that can destroy my organs while I follow that advice, my general physician has negligently failed to provide any treatment while I await my specialist appointment, I'm getting worse by the day, and I feel too unwell to go home without at least a big dose of prednisone to prevent permanent damage that could have me back here in kidney failure or other irreversible damage. (Don't freak out that I'm saying this. I don't believe it will happen to you; but you may need to mention the worst case scenario for an intern or ER doc to understand the urgency, and ensure you see someone who knows what to do). I believe the worst damage and most dangerous scenarios occur because the average doc still knows nothing or very little about our disease. My GP is amazing and works with me, learns, and refers me to whomever I ask. However, I'm her first and only wegeners patient. That may be the case for your doctor, and even an ER doctor. You or your support person should make them understand that waiting a month is simply too risky. Worded correctly, they will understand that this is also an issue of potential liability for the hospital should they turn you away. The weakness and overall ill feeling mean active disease, and if I were you or your support person, I'd start hitting clinics and/or ERs until someone hooks you up with a nice big dose of at least prednisone. I believe Dr. Kur's office has a voicemail with numbers of rheumatologists on call in urgent circumstances. Maybe try one of them? I pm'd you his main number. Ask if they can tell you how or from whom to get a referral on the weekend, or whether they can meet you at an ER? It's so frustrating that this is how the system works even when the doctors know or should know the dangers of waiting.

Keep us posted, and try not to worry but also insist on getting help sooner. Hugs. Sorry you have to fight to be seen when you should be resting and conserving your energy to heal. If I ever get better enough to do more than barely keep my household amd kids' liveable running I need to become a patient advocate and kick some negligent doctor a**, LOL! ������

[Alysia]

@LisaT you are so amazing with your wise & useful advices and priceless support. I am so happy to read you here and I love you ❤ welcome back ❤
One point: I might be wrong, others please correct me: I think that before taking a biopsy it is better not to take any pred in order not to mask the disease ? Not sure... ?

[Susan55]

Yes, Lisa is amazing! I am new on this site and Lisa is such a huge help.

[Susan55]

I just tried calling walk in clinics and believe it or not their closed today! Yes, I promise to go to the ER if it gets worse. My brother is on the island (not in town) so no one to go with me right now. I'm still searching for any clinics that may be opened today, just maybe a dr there will listen to me. Finger's crossed and I think this is going to be a busy day. I appreciate you calling Dr. Kur's office on Tuesday. I did try but no luck

[LisaT]

Thanks, Alysia and Susan. Others really helped me at the stage Susan is at. It's the least I can do. And, love you too.

Good point Alysia, i do think prednisone can change the biopsy result. Then they should do the biopsy right away so she can get started on treatment. I will ask Dr. Kur who can take her quickly and how, when I see him tomorrow. He doesn't do a biopsy if they confirm through bloodwork amd symptoms. Maybe it isnt necessary.

[Susan55]

Yes Please do let me know if Dr. Kur and see him..

[Susan55]

Hello Alysia

I did call her office last week but never heard back from her or anyone. HMMMM...I'm at the point of trying to be heard...just wait it out till Sept 25. Went to the ER Sept 2nd and after 6 hrs, they send me home and the doctor in the ER is sending referral to Jim Patterson "Internal Medicine Dr. in quick access clinic" who knows how long this will take...we shall see, fingers crossed them call me tomorrow...hugs to all of you on this wonderful site <3