Sooooo frustrating

[delorisdoe]

I should probably start off by saying I am a terrible patient. I have a bad habit of just dealing with things and not attributing anything to wegeners. I have landed in the hospital a few times because I wait until i have no option but to go to the er.

July of of this year as I was preparing to go camping, I noticed a small red bubble/bump on my leg. I went camping and some time within a day or two of first noticing it, it had become a large ugly somewhat painful hole looking mark on my leg. I assumed I had hurt it camping and did not give it much more thought. It was still not healed in August. By September the area around it was very red and seemed to be spreading. It also at this point was becoming more painful. Eventually in September I went to the family doctor. He gave me an antibiotic ointment and oral antibiotics. Two weeks and three visits later and it was no better. He googled it and found out it most definitely could be a wegners flare/issue. He sent an email to my wegs doctor that day. He told me to call if I had not heard from his office re an appointment. One week later nothing. Two weeks later still nothing "Cindy was working on it"

so so now here we are closer to the end of October than the beginning and I am still waiting. I called my doctors office today and was told "Cindy" is trying. Apparently, she keeps calling but can't get through. The secretary gave me the number and said I could try but they would probably not help me much as I am the patient and they usually deal with the doctor..

so I dial the number. She picks up on the first ring. Nope, nobody from my doctors office has called. My wegs specialist is sure booked up though, he has a ton of conferences and is not doing too many clinics. Besides, he would not see me until my family calls or faxes them and requests for me to get squeezed In. Oh my gosh! They sent an email 4 weeks ago I tell her. She then says what is your name. My last name is quite unforgettable so she says oh ya, we did get a fax but it's from 2 or three weeks ago not a month. The doctor is really booked up though so I am looking at next January-my scheduled appointment is December so January won't help. So I do my best at this point to cry. I suck at this but I don't have any other option. She will see if she can get me in before then. Thanks

this thing is called pyoderma gangerosum or something like that. The Internet says it's very painful. It is.

I called led my doctors office back and said they answerd me on my first try and said they have not heard from you at all. they put me on hold so I hung up. 2 month of a ton of pain and no sleep makes me less than pleasant.

Im mad.

[Velma]

This is ridiculous! You need a different doctor and they need to start respecting you and your situation. I get sooooo mad at these doctors who think they walk on water, make us wait for hours, weeks, months to see them and then give us a 5 minute review, pat us on the head, and send us out the door. Yet they make the big bucks and make sure they collect from our insurance companies. I would ask for another WG specialist--literally call up your doctor and say I need to see someone now and if he/she cant see me then tell me who can. Maybe a visit to a dermatologist that is familiar with WG since it is a skin issue would be smart as well. Never wait on them. I would call every day, twice a day, email, fax.. do what ever you have to do to get someone to look at the situation and help you. I have been known as a very pushy patient because after 20 years I have learned that I have to be an advocate for ME. If this was an issue for my child nothing would stop me from getting the help she needs, so why not think of myself the same way? Get mean and tell them to either help you, refer you, or cut you loose because you need and deserve help. Good luck! Keep us posted.

[drz]

This sounds like a night mare. I have two doctors following my GPA and both reassure me they would see me ASAP if I have some serious symptoms. I feel reassured from these assurances. I understand that in such an emergency I could have to see one of their colleagues or partners in their department who would have full access to all my records.

On one occasion when I and local ENT doctor thought I might be having stenosis they transferred me to their treating hospital 200 miles away the next day. Fortunately it turned out to be irritation from GERD which they discovered after they checked me out but they had already started treatment for a suspected GPA flare.

My consulting GPA expert at Mayo has responded to any consulting requests from my treating doctor for GPA and he in turn has directed some local treatment provided through my local internist on one occasion when it was needed.

On another recent occasion I thought my BAHA site might be infected even though local doctors thought not. The surgeon who did the operation offered to see me the next day. His exam suggested it was either infected or ulcerated and treatment was promptly begin.

Such prompt and timely response to my health needs reassure me that I should be able to get good care in a timely manner when needed. But the fear is that with recent massive changes in our health care system in USA such prompt and timely service may in the future become much more difficult or even impossible to get.

Recent changes earlier this year made it very difficult or impossible for me to get the diabetic supplies I had been using with out much extra effort (it took 50 hours on the phone) and more out of pocket expense which seems to be a misguided attempt to save money in the short term while increasing long term expenses from much more serious complications from people's inability to maintain adequate on going treatment for their diabetes.

I know many health care systems are much more difficult to access than mine and it may take a lot more effort and persistence to get good care, some times it does even in a very good system. I have encountered this in a world class facility. But I think it is important not to give up and to keep trying to pursue an appropriate response to your requests and some times this means seeking out a different vendor for the services you need.

I almost died in the past from not being more aggressive in getting my GPA symptoms sorted out before they became life threatening so I now tend to be a lot more proactive and persistent in seeking treatment or evaluation for my health concerns.

Best wishes in your efforts to get good care for your health issues.

[Debbie C]

I was also going to sugguest a dermatologist at least you will have someone look at it and and maybe get you on the right treatment.GOOD LUCK !

[delorisdoe]

Well I have an end in sight now. I tried telling the wg docs appointment booker...he would want to see me asap and low and behold I was correct. I have been squeezed in on his very next clinic day and he insisted she get me in to his dermatologist half hour before him! My family doctor meanwhile had his appointment booker lady get me in to another dermatologist this Monday. I called her back to let her know that she could cancel it as I'd rather see the guy that works with my wg specialist. That is all I was going to say but then my mouth got the better of me and I said that when I called my wg docs booking desk they picked up on the first try, first ring in fact. She informed me that I may think I am her only concern but I am most certainly not, she has other people who need appointments just as bad as I do and she called last Friday with no answer! Oh I see, I have been calling for updates as per my doctors instructions for three weeks now and you called once on Friday. She continued to belittle me so I eventualy told her she was ruder than myself.

I was was pretty mad. I mean seriously I told both booking desks that if one of them could just get a hold of my wg doctor I know he will want to,see me asap. I'm not going to lie, I hung up and had bad thoughts along the line of hoping she has a mother or a child who gets wegeners and has to deal with an employee who makes her feel stupid for calling in the first place. It takes a lot for me to call and ask to be seen in the first place....I don't like this lady much!

[Donna-from-Philly]

Good luck. I have in the past gone physically to the Dr.'s office told them My doctor want me to be seen today if possible and I was in the area so I thought I'd stop. If they said the doctor wasn't available I would ask to at least see the nurse. I have only done this twice but both times I was seen.

[delorisdoe]

It's frustrating because I know that if the message gets through to him I know he will see me asap. It is beyond difficult to convince his staff that this is true and that they just need to speak him. In the end they see I am right.

On on a related note my family doctor came in to my work today and I had to serve him and I was humiliated by my treatment of his staff. Right or not it served no point by then as I had already done her job and got the ball rolling. Seemed like he maybe did not know...so embarrassing. Lol.

[mrtmeo]

Contact the Vasculitis Foundation and ask for a weg's dr in your area or a weg's dermatologist.
Vasculitis Foundation (http://www.vasculitisfoundation.org/)

Just an FYI
Here is a clinical case of pg that was successfully treated with potassium iodide
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CB4QFjAA&url=http%3A%2F%2Fwww.medicaljournals.se%2Facta%2Fc ontent%2Fdownload.php%3Fdoi%3D10.2340%2F00015555-0006&ei=n-NKVIKsH4eyyAT_6IGYAw&usg=AFQjCNFft6Q-T8e4Rtn8F40axguLe1ynJw&sig2=yMs-zlD1T4W69zSSa9ljYA&bvm=bv.77880786,d.aWw&cad=rja

[delorisdoe]

I have had the same weg doctor for 16 years now. It was just hard getting a message to him this time but I will discuss this on Thursday. He has set up an appointment with the dermatologist for the same day. I will read the link. Thanks.

[delorisdoe]

Oh my...although mine hurts the way that looks...it looks nothing like that! Thank god!