You're no more a mess than the rest of us...just maybe a more interesting puzzle...hehe.
You're no more a mess than the rest of us...just maybe a more interesting puzzle...hehe.
Knowing how to think empowers you far beyond those who only know what to think. -NdT
I fall right there with Nikki minus the NEUROLIGIST. I have a primary for things like if I get an injury otherwise known as the family Dr and an internist who is also the Dr on my team is a Nephroligist as well as she now regulates my insulin and is the point person when the other Drs make a change to my treatment. I guess you could call her the team captain. I also have a cardiology check up every 6 months. Im sick of Dr's and sick of pills.
I'll chime in too. Rheumatologist, who has become my PCP. ENT for sinus, pulminologist for lungs, and a PA in the surgery department at the clinic who also has wegs (I call him not very frequently, unless I have to)
MikeG-2012
"You never know how strong you are until being strong is the only choice you have"
I have a rheumatogist, a team of nephrologists, 2 separate pulmonologists, a neurologist, a cardiologist, an ent, a opthomologist and a primary care doc, (oh and now I have a orthopedist, since I broke my leg!)
Last edited by marylz; 01-28-2014 at 03:38 PM. Reason: forgot a doc
Mary
dx'd Janaury 2013
involvement: lungs, kidney and sinus
I hate to even try think about how many doctors and clinics I try help support. I know I see several doctors at five different clinics. It is not the best way to coordinate my care but to find experts I like and trust for my care it was necessary to do so. I try get as much care as I can close to home to minimize my driving and medical travels. So my local internist prescribes most of my meds I get at local Walgreens. My treating doctor for prescribing my Weg treatment is rhumatology (200 miles), his consultant at Mayo (275 miles) that I see is pulmonary. At the clinic I go to see my Wegs doctor I also see urology, hematology, endocrinology, and ENT when they or I think it is needed. Closer to home at a local clinic (2 blocks) or at two other clinics an hour (60 miles) awayI also see doctors for urology, endocrinology, oncology, 2 dermatologists, podiatrists, two ophthalmologists, mental health as needed, ENT, pulmonary, and probably others I can't recall. At my local clinic and hospital I have also used pulmonary rehab, respiratory, and vestibular rehab therapists and I see the respiratory therapist monthly for pentamadine nebulizer treatment which I had today.
It is a rare week when I don't have one or two medical appointments. I often feel like an antique classic car that spends as much time in the garage as it does on the road although I do drive thousands of miles each year for my medical appointments. When people ask me what i do now after retirement I tell them I became a full time health care consumer trying to help support a dozen plus doctors at five clinics. I am one of the best customers at pharmacy and usually see them weekly for some refill.
Some times I find my health care routine rather tiring but I know it beats being inpatient at any hospital or nursing home so I am glad I can still do it and hope to keep it up for many more years.
Last edited by drz; 01-28-2014 at 05:35 PM.
Knowledge is power! Wisdom is using it to make good decisions!
Drz,
I think us weggies have a duty to keep the economy stimulated through consumption of medical services. :-)
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
Hi Mary, I am sorry for you. I hope you will recover soon. hugs
my list of docs:
some of them I visit at the clinics of my health service, and to some I am going on a private basis and paying good price.
GP (at my health service)
Rheumy - wg doc (private, but since I am rare case, he doesnt take much relativley from me), another rheumy on private basis - to prepare my case for getting disablilty.
lung doc (at my health service)
Ent -2 : 1. local (at my health service, for "small things", "everyday" issues). he doesnt understand much. 2. expert - private - once a year, I need to travel away to him and to pay him very well.
eye doc: 1. local at my health service. 2. private, expert, once a year, again, I need to travel and pay.
neurologist: at my health service.
gastro doc (since I have colon involvement): one private. about 3 times a year. the gastro docs at the health service were both arrogant and ignorant.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
PCP, 2 rhumeies, 1 endo, dermatologist, gastrologist, neurologist, and ENT.
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
Forum Member Map -- world map for you to put a stickpin of where you are located....
What a group we are!!
Mary
dx'd Janaury 2013
involvement: lungs, kidney and sinus
My least favorite Dr. on my team is my ENT. He likes to stick that tube in my nose and starts to vac my sinus'.
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