Recapitualtion

[Al]

[Note: A few days ago, drz gave us a moving personal narration. In a private message, he asked me to say a few words about myself. I did so. He suggested that I post my story for the whole forum. Now, on my very first post (http://www.wegeners-granulomatosis.com/forum/new-member-introductions/2034-yet-another-conscript.html), I had given a synopsis, so was reluctant to repeat myself. However, we have since had many new members. On the assumption that personal narratives are sometimes helpful, I post below an expanded version of what I wrote to drz.]

I read your post wherein you tell your dramatic story. It was, too, a beautiful story, especially considering the ugly facts. Those facts do overlap mine, but there are differences. First, I am a few years younger (63 now), with no diabetes (or, fortunately. asthma). I was in pretty good muscular shape before the first major flare, and I have never had major ear, eyes, or upper airway involvement (some minor issues, though--and pred-induced cataracts). Indeed, Though diagnosed with WG, from the evidence, a DX of MPA (microscopic polyangiitis) seems more in keeping with standard nomenclature. (The treatment is identical for both diagnoses.)

Also, my DX came very fast--once I got the medics interested in taking me seriously. But the lead-up, alas, seems to have taken many years. I'll give you a taste. In 2008, I got a cold or flu, which eased in a couple of weeks, but the cough stayed on. This cough got to be quite a nuisance, personally and professionally, so I eventually hied myself to a pulmonologist. The results of going down this path were, in retrospect, a waste of time. Despite the cough, my PFT tests were "near-normal", and the bronchoscopy proved inconclusive (the provisional diagnosis was idiopathic hypersensitivity pneumonitis, which means: “huh?”). The next step was to see the hot-shot pulmonologist at the University, He took me seriously, and did go through my history with a fine-tooth comb. I liked him. Yet, his idea of a complete workup was to start{!) with an open-chest biopsy. To me, this seemed like an overly drastic (read: annoying, painful, and expensive) step, considering that no blood tests had yet been ordered (and, as it turns out, both pulmos missed the kidney stone on the CT scan). Though I knew nothing, then, about ANCA associted vasculitis, it seemed to me that any inflammatory process that could cause lung fibrosis could be hard on other useful organs as well. Why not start with much less invasive lab work? So, on my own, I got this done: CBC, lipid panel, renal panel, ANA, and UA. This was at the end of January, 2010. The results indicated some dicey kidney numbers, and both hematuria and proteinuria. Incidentally (or not), I was now just coming off a nasty bronchial infection.

Next stop: Nephrology. At our first meeting, Drac (so-named because of the amount of my blood he wanted, then and now), pooh-poohed my lung-kidney theory, but ordered a battery of blood and urine tests, and: “Come back in a week”. (I vaguely remember his saying that there were some esoteric tests that could be employed if we didn't get the answer at this point, but he doubted these would be needed.) The results of that lab work: Creatinine was rising, and a bunch of stuff was fishy with the 24 hour UA, but nothing else tested was amiss.

Another round of increasingly complex tests, and an ultrasound. Now something clearly scary was happening. Creatinine was now starting to spike, and the ultrasound was not encouraging--next we still had no diagnosis. On March 4, a Thursday, I had one more round of tests, including one for ANCA, though I was at that time told only that it was for a rare vasculitis. That night, I my left eye hemorrhaged subconjunctively (i.e., I had a red eye). I didn’t notice, but a colleague at a job pointed it out. On Friday night, still at the same job, I started getting edemas in both ankles. By Saturday, the edemas were very painful--and working that night was excruciating. I spent Sunday on the sofa with my feet up, nearly unable to hobble to the bathroom or bed.

Monday, Drac called: "I think it is small-vessel vasculitis. But we need a biopsy. Normally, elective kidney biopsies take a few weeks to schedule, but I can get you in tomorrow. I advise you to be there." "Can I have until Wednesday in order to clear up some business?" Drac reluctantly agreed; "Just show up at 7:00 in the morning." By this time, the edema had subsided enough that I could walk in on my own--but the creatinine was higher still--dangerously high. (It eventually peaked at 6.7.) What I thought was "just a test" was, as it happened, the start of 12 days in the hospital.

I still had not heard the term "ANCA", but the "autoimmune” term was being dropped by my numerous medical visitors, along with “vasculitis”. So, awaiting the pathology report, I was started on high-dose steroids and given a transfusion (anemia markers, including RBC and hematocrit, were very poor; this happens when kidneys are struggling). Then on Friday, we had the DX: Wegener’s Granulomatosis. CTX was scheduled for the next week. Then my lungs started hemorrhaging--bright, red blood, in ugly quantities. My third pulmo was called in, who did a BAL (bronchial alveolar lavage), producing a lot of bloody detritus, along with confirming evidence for the DX. Drac and the pulmo went into a huddle and decided on plasma exchange as the next step, which requires some additional plumbing, so I was next raced downstairs for the new pipes, then back up for the first PEX session. That was a busy day. (It only worked because my wife could be there all day with me. Because I was compromised by diazepam twice in the same day, I way was not allowed to consent to anything myself.) But the result was, from my point of view, near-miraculous: For the first time in many months, I could take in a full breath without incurring a massive cough reflex.

The rest was somewhat anti-climactic: the CTX infusion, and more PEX, and tons of steroids. But I was restless: I hated the food and the confinement, being awakened in the middle of the night to have blood drawn and have my vitals taken (or only to ask if I was resting comfortably!), and the idea--promulgated by the hospital staff, presumably for their own convenience--that I should be in bed all the time. I started walking laps regularly--hundreds of laps, day and night, which annoyed the staff no end, though I think I did amuse them at the same time by my almost desperate need to get them off-script. (Toward the end of my stay, I toured other floors, I would go to the lobby, get some tea from the coffee shop, and walk around like a regular guy. (It is amazing how nervous hospital employees and visitors can get when you amble past the administrative offices in full patient costume.) So, after 12 days, I was sprung; I could do the remaining PEX sessions and CX infusions as a day patient.

The other reason to blow that popcorn stand was that someone had to somehow pay for all that outrageous treatment: Even with insurance, all the various expenses, plus farming out work, is hideously expensive. Fortunately, I was still ambulatory--and even hyperactive (because of the pred). At least, I could be useful around the house: I love to cook, though I was truly concerned that, because of the steroids, I might slice my hand instead of the onions. In any case, I was on my way to a sort of recovery, and had a pretty good summer, mostly. Then, in August, the family weddings started, on top of a huge work month for me.

Clearly, the events of that summer were important to me personally. But they also bear upon the theory that stress is challenging to to immune system--especially a compromised one. Therefore, I ask you to indulge a little side story here: It is thought that a son’s wedding is easier than a daughter’s. This is not necessarily true. In this case, the wedding was on our home turf--the bride being from Chicago, but she and our son wanted the public wedding to be on-island; the private church wedding was scheduled to be in Seattle, the previous day. I was working a lot at that time on Orcas, and spending every spare minute preparing the house for the various guests. My wife was in Seattle to meet and the in-laws and deal with the church details. On Tuesday, I worked a show, then caught the midnight ferry to the mainland. My daughter met me, and we rolled into Seattle around 3:00 AM. The Church wedding was at 10:30 in the morning. As I was dressing, I noticed a rash developing, but there was little to do about it then, considering the tight choreography. After a post-ceremony lunch, my daughter took me to catch the float plane back so that I could work the afternoon show. The rest of the party raced to the ferry. We all met at the hotel that evening for a wedding concert for the assembled guests (the bride and groom and both mothers being professional musicians). Then, the bus for the “rehearsal” dinner (we felt that, as many of the guests were from out of area, we couldn’t not invite the whole gang). Wedding day: The delayed rehearsal, then the wedding, then the reception till midnight. The rash was getting worse; though I did not yet know what it was. The Friday morning-after breakfast was at our house. We arose early to make the frittatas, scones, and such for about 40 people. Then I went to work--all day and evening. Saturday was a morning recording session and an evening concert. I was a horrible, sick mess.

The stress was Brobdignagian, of course, and the rash turned out to be shingles (officially diagnosed a few days too late to start any anti-viral program), even though I had previously had the inoculation. I suspect the immunosuppression was to blame for this state of affairs. And I suspect the shingles played, in part, a major part in the return of the ANCA. The cough and rusty urine came back. I blame the shingles, and the new bronchial infection a few months later. The second big flare became obvious in March, 2011, incurring a new round of CTX, and a bump in the pred, and, now, azathioprine, but not, blessedly, any overnights in the hospital.

So that is where things stand at the moment. I have since somehow managed to avoid any major new infections, but the the anemia will not go away. I can't seem to get my act together until mid-afternoon (on the lower pred dosages), and my brain doesn't fully engage until 9:00 PM or so (then again, it never has!). I have avoided dialysis so far, though that was a near-thing at the height of the crisis. Clearly, the kidney reserve is low; another major flare would be very bad. The lungs are in better shape, though the cough has come back slightly, which I will be keeping an eye on. This, the congestion, and full-body itching increased when the pred was dropped to 7.5 mg. But these symptoms have now abated some when the pred went back to 10. Also, the morning fatigue retreated after reverting to the higher dose of steroids. The “dog” is, I think, snoozing, but I hardly trust it. I know that if I get an infection, the ANCA (and the disease) will follow, so I am constantly on the lookout.

In retrospect, I think the disease process started a long time earlier than the big flares. Indeed, I may have had an occult (“silent”) flare or two. This is, of course, a longer story. Around 2003-4, I had a lot of night sweats. Was this a symptom? Who knows? Later, urine became rusty and foamy (indicating, respectively, hematuria and proteinuria). There are other possible explanations for both, but if everything was taken in context....In the late 1990s, I suffered a series of nose bleeds (never having them before or since), At the time, these were blamed on ineffective blood pressure management. Since I also had a weird cough, I was taken off lisinopril and put on a calcium channel blocker. The nosebleeds stopped, but the cough only slowed down. A sign? Who knows?

Perhaps the best chance to finger any rumbling vasculitis was in 2003. On a fine Sunday afternoon, I was badly rear-ended. Though the car was a mess, I thought I had survived without injury. But the next Friday, my back spasmed violently. I was in such supreme pain that I could almost not reach the phone to call in sick to my job. (My wife was then out of town.) By afternoon, I was able to drive to the clinic--barely. My doctor hand-carried my up to the next floor to see the rheumatologist, who gave me a pain patch and a prescription for physical therapy. The next Tuesday, my feet started “buzzing”. Eventually, I met with a neurologist--a supremely unsatisfying experience. The neurologist thought I was fibbing in order to get a settlement from the insurance company. (The insurance company did pay for for the physical therapy, and offered me--unrequested--a small amount and they were grateful for being let off the hook.) He did order an ANA test, on the grounds that maybe is was lupus or something. As it happens, ANA was slightly high, but not enough for lupus. Beyond this, he was not curious, and didn’t want to see me again. Was this a trauma-induced flare? Maybe, maybe not, though physical trauma can incite a cytokine storm, just like infection. Anyway, in retrospect, this may have been a lost opportunity.

In the late 1990s. my left eustachian tube started to become periodically locked. Thankfully for my career, I have always been able to open it up, and my hearing is otherwise pretty good. The ENT who scoped me found no granulomas. But it is known that the cilia that clear the tube can be damaged by vascular inflammation. Did this happen in my case? Who knows?

It is hard to prove, but my personal intuition is that the disease process began a few years earlier. In the early 1990s, I had a horrendous intestinal infection, which I now, after reviewing all the evidence, believe was due to a nasty bacterium--most likely one of the bad E. coli strains or something closely related. My primary care physician was not an internist, but, by specialty, a gastro-enterologist. Given his specialty, he kept looking for an answer he knew all about, like diverticulitis. He never found evidence in support of that hypothesized DX, and he eventually put it down as an infection of indeterminate origins. E. coli was not tested for, though no matter, perhaps, if it had been: Nowadays, the recommendation for treating such dastardly infections is to avoid antibiotics, on the grounds that killing off the bacteria that way just releases more toxins. But in the event, I was given some industrial-strength antibiotics. A mistake? Who knows? Certainly, my kidneys took a terrific hit at that time: Blood pressure hit the roof, and has never been normal since; urine turned opaque for several days. Yet, kidney function was not, then, checked. (Why not? Who knows?) Eventually, I did recover, though the much later kidney biopsy did show ancient injury.

Should have my doctor have dug deeper? Perhaps, though it is hard to see, from his point of view, where else to go at that time. And I was just glad to put it behind me....

Howbeit, many years later, a new theory about the etiology of ANCA disease now posits that certain bacteria, including some bad E. Coli strains, are, on a molecular basis, essentially identical to a naturally occurring human protein called LAMP-2. As it happens, most people with anti-MPO and anti-PR-3 ANCA also have anti-LAMP-2 ANCA. (I have never been tested for anti-LAMP-2 ANCA; no one, except subjects of a couple of research projects, has.) This is a controversial theory (called molecular mimicry), its contentiousness owing, in this case, to the dearth of confirming research. But it does have a ring of truth in my situation.

The fact is that it is hard to assign “blame” to anyone for not finding my ailment earlier. All those manifestations that, in retrospect, may have been clues, individually have other, and more benign, explanations. They were “dots” that are not easy to connect without seeing the largest possible picture. Given the specialist system in medical care, connecting the dots is not so easy. And, in fairness to the doctors, I, as a patient, preferred to assume that the small complaints were not connected and, in any case, not worth bothering the doctor for--at least until they got too large to ignore. Yet, this delay was costly. Is there a lesson here?

Then, too, diagnosis is an art form that not every doctor knows how to perform artfully, It really does require a big picture view that is not antipathetic to current medical training and practice.

And what about treatment? This disease is “manageable”, but not “curable”. It it the best we can do? Perhaps--for now, On the other hand, I truly believe that global immune system suppression will seem utterly barbaric in the coming decades. For now, though, we soldier on. Steroids are yucky, but necessary. Immunosupression is I believe, is essentially the wrong way to go, as it is hard to be truly human without a fully working immune system, But no one knows, yet, a better way to manage the disease.

You know, I am a lucky man, considering everything. Sure, I have my ailment, with its annoying symptoms and constraints. But I have an immensely supportive family; I am still able to work; I haven’t lost kidneys or had to suffer dialysis (so far, at least!). Many people have a much heavier load to carry--often, with little or no support. Constraints notwithstanding, I still envision a strong future, and I feel that my best work is still to come. Hope reigns.

Al

[HopeinTN]

Thanks Al for sharing your well put story. A lot of it sounds all too familiar. I wish lots of good health in your future!

Katrina

[Rose]

Yes Al, thanks for sharing your story. Like you I became ill following a severe gastrointestinal infection. From that day in September 1989 my life was changed for ever. Knowing what I know now, I am sure WG attacked my gastrointestinal system. I suffered severe debilitating gastrointestinal symptoms for many years and although all test were done (and many tests were done over the years) everything came back normal. My diagnosis was ME and I think for many doctors, hypochondria. My story is long and complex but one day I must write it as I dont think I have come across anyone on this site who had gastrointestinal involvement. In September 2007 the disease disseminated and went multi system and life threatening. Diagnosis was made in March 2008 and in a way it was a godsend as with treatment my gastrointestinal symptoms have improved and I no longer have the gut ache and severe fatique which plaqued me for such a long time.!

[annekat]

Wow, Al. Thanks for sharing your story in such detail. As an aside, I suspected you lived in the San Juans, and it's nice to have it confirmed. Those islands and I go back a long way, to when I was a teenager in the 1960's, and we used to spend summers at the UW marine labs in Friday Harbor, where my dad did research on cancers in fish. In fact, my parents met there as UW students in the late 1940's, I guess. My dad and his second wife have lived there at least half the year since the mid 1980's or so, though he passed away last year. I hope to be up there sometime this year to help go through his belongings, prior to her selling the house and moving to S. California full-time.

I'm glad you feel lucky in spite of all you've been through!

[pberggren1]

Thanks drz. This will be helpful for many.

[drz]

Thanks Al for sharing it here. I enjoyed reading it again and think many others will also find it interesting and helpful.

[Lightwarrior]

Thanks Al for sharing it here. I enjoyed reading it again and think many others will also find it interesting and helpful.
drz, both you and Al are excellent story tellers. Both of your stories are so sad and yet beautiful and full of hope at the same time. Thank you both for sharing so much of yourself with us so that we will find comfort in the commonalities and the uniqueness that identifies us all as weggies.

[delorisdoe]

I read the whole thing.

I had a follow up yesterday and it was the first time a doctor ever showed me or explained blood tests to me. He read them over and explained what it may mean to my treatment. First time in 12 years. Mind you, I have never asked any of them to explain it to me. I just go in and wait until they tell me what the next step is. Yesterday at my appointment the resident asked me how it started.

"what do you mean?"
"what were your first symptoms that lead to the diagnosis".
"um my joints hurt a lot and i had a strange rash from my knees to my toes and it was hard to breath"...oh ya and i was coughing blood".

I dont remember it anymore vividly than that.

[annekat]

I hear you, Leigh. This is such a complicated disease and there is so much to explain. At my doc's appts. there is NEVER time to ask all the questions or get many explanations. I look forward someday to finding a doctor who will give me that time. Meanwhile, I'll depend on this forum to answer most of my questions.

[delorisdoe]

I dont usually ask but yesterday I realised how much I dont know or ask about. I think I am a difficult patient.

[annekat]

I dont usually ask but yesterday I realised how much I dont know or ask about. I think I am a difficult patient. I don't think you are a difficult patient. I wonder if they think anyone who asks a lot of questions is a difficult patient.

[Lightwarrior]

I don't think you are a difficult patient. I wonder if they think anyone who asks a lot of questions is a difficult patient.
To qoute the critical care pulmonologist that I work with who cried when he found out I had Wegener's. "You will have to become the expert because unless you move to an area where there are specialists then you will have to teach the docs " So...we are not difficult patients we are merely trying to stay alive.

[delorisdoe]

I don't think you are a difficult patient. I wonder if they think anyone who asks a lot of questions is a difficult patient.

The reason I see myself as difficult was glaringly obvious yesterday. The resident that first saw me asked many questions and did a thorough enough exam. Getting my history was like pulling teeth-see above quote "oh ya and I coughed blood". When the atending came in and saw me he asked me how my joints felt and I told him they still hurt a lot daily but that the mobic did not agree with me so i was just dealing with it. The poor residents eyes popped out of his head and he said "joint pain now?" he asked about 12 years ago not now. Me, I only told him what he asked. Poor dude. In my situation the residents would really appreciate a patient who asks a lot of questions. Maybe an attending would not like it so much but too bad for them.

[annekat]

It doesn't surprise me that residents are more likely to want to ask and answer questions, where the established docs are more likely to give us the short shrift. After 12 years of WG, I can understand how filling in someone new on your case history would be quite a chore.

[Jaha]

Thanks Al for sharing your story. Your skills at writing are amazing. I find that when telling my story of Weg's I really do forget alot of the signs that I had years before getting Dx in Sept 2010. I guess for all of us who were so active and strong we probably just ignored alot of thoses signs.
Jana

[annekat]

Thanks Al for sharing your story. Your skills at writing are amazing. I find that when telling my story of Weg's I really do forget alot of the signs that I had years before getting Dx in Sept 2010. I guess for all of us who were so active and strong we probably just ignored alot of thoses signs.
Jana I, too, keep thinking back to possible signs that happened earlier. I keep saying I think my Wegs started in 2008, but as early as 2000, I was having some very unusual tinnitus and head congestion that I never had experienced before....

[Debbie C]

I am the same way about symtems and were they signs ? When I first moved back to Ohio from Fla. I felt great then all of a sudden I was having a hard time catching my breathe..when I went to the first doc. he gave me one of those nebulizer machines and albuteral sulfate to inhale 3 times a day.My problems seem to go away so I just brushed it of a having sinus problems since now I live next to a huge rural park and surrounded by trees other than palms. Then a few years ago I got what I thought was an ear infection..I went to a different dr. ( I had to change cuz the other one kept asking me out and he was married..not cool !) So this new one said I had a middle ear infection and put me on antibiatics but it didn't help so after a couple of weeks I went back to his office and he was on vacation so I saw another dr. in his practice who told me I had a inner ear infection and different antibiatics..that didin't help either..So finally I went to a ear Dr. and he said I had an outer ear infection and again more antibiatics...well after all that I ended up with c-diff. I thought I was dying.I would have sweats and then be ice cold, I lost 15lbs, and I only weighed 102 at the time so i was about 88 ibs. I called my Dr. and told him and he said I did not have a tempiture and to go buy a thermomitor and not to call him because he had patients there were dying and I was wasting his time and thats when he started that I had all this anxiety and he just passed that on from dr. to dr. After all that I ended up in the hosp. in isolation and given a bunch more antibiatics to get rid of the c-diff. I ended up seeing a ent dr. whose said I didn't have any infection at all..it was just my ear drum was swollen. To this day I will not take another antibiatic unless my life depends on it. C-diff is horrible. And now lately I've noticed my sinus acting up but I don't know if because its spring or a wg. thing.I'm just gonna wait ahile a see. So it is really hard to tell when this all starts because the symstems are really nothing

[Al]

If I have a larger point, it would be, I think, that delayed diagnoses--whatever the reason for them--threaten major organs and, perhaps, life itself. I understand the desire to look for simple, prosaic answers first. But this is not always where the solutions lie. By the time this becomes apparent, lungs and kidneys, for instance can be in serious trouble. Yet the system is not set up for rapid diagnosis. There are many reasons for this. I hope to get a major dialog going about the what-to-do-about-that of it all. I'll start: At the end of each and every day, the doctor goes home, to his or her own family, has a drink or two, and, perhaps, falls asleep in front of the television. The next time he or she thinks about your ailment is at your next appointment. For you on the other hand, it is pretty much constantly on your mind--at least in the back of it. Therefore, it behooves you, the patient, to take the lead in de-coding the "dots". In my case, I felt strongly that I had a systemic inflammatory disease, even though I had no vocabulary for it; nor could I, then, discuss a hypothetical etiology and pathogenesis for it. I had to keep blasting through the tendency for the medicos to ignore the history.

I think there is more to this story; your turn!

Al

Al

[mishb]

To be a little bit fair to the doctor, in an 8 hour clinic day, he/she could see approx 30 patients or more with various degrees of illnesses.
My guess is that their mind, by the end of the day, would be on many many different people at any one given time and could also be thinking of your problems too.
If it was me as the doctor, by the time I went home after an 8 hr day in the clinic and possibily another 3 or 4 at the hospital - my mind would just be mush.

We really don't know what type of patients he has seen that day. He may have diagnosed a cancer, (my friends 2 year old daughter just had a kidney removed due to cancer, which was diagnosed by her local doctor), he may have lost a patient that day at the hospital, or he may be tryng to put all of your symptoms together and then getting them a bit confused with someone else's at the same time because he is not allowed to remove your file from the clinic to refresh his memory.

Even though I saw my doctor approx every 10 days trying to get an answer from her and knowing that there was no way she could forget my symptoms, and knowing how annoyed I was with her, I guess we are all human and we all need to remove ourselves from our work by going home and refreshing our mind for the next day ahead.

........we need to just keep on pushing to get the answers fitting the symptoms

[Palmyra]

Dear Al and all my other friends on this site,

I appreciate your story Al. Thank you for sharing and I will compliment you on your wonderful turn of phrase and ability to express complex thoughts. As the parent of a dear daughter that suffers from this ever mysterious pathology, I too struggle to comprehend the complexities of this disease. I hope for an actual cure and have hopes that it will occur at a molecular level in the not too distant future. As the greater expanse of autoimmune diseases in general continue to challenge a large portion of the population, science and medicine will continue to look for what I hope will be a greater understanding of the causes of these conditions and hopefully a resultant cure.

As an aside, I was first happily introduced to the San Juan's when my brother was doing research for UW at Friday Harbor in the 70's. I have since had the pleasure of touring Orcus and beyond, and envy your proximity to such a beautiful place.

And, as a 'tooth fairy' I will also contribute a small bit of information regarding a side effect of a drug classification that you mentioned. Blood pressure/control is affected by kidney function. When kidney function is stressed and more typical BP drugs do not easily control pressures, calcium channel blockers are frequently utilized. They have the occasional side effect of causing gum tissue to enlarge and grow (a condition called gingival hyperplasia). Even many dental professionals are not aware of that potential side effect, so be sure to inform your DDS/hygienist. Good oral hygiene and frequent cleanings are important. The mouth is a virtual waste bin and den for all kinds of microrganisms that can imperil those with deficient immune systems. Floss regularly:smile1:

And, regarding the condition of our (USA) current medical system at large, I can't say enough positive words about what I have witnessed at the Mayo Clinic and its philosophy of collaborative medicine. It is the best I have ever seen.

Hugs and best wishes to all!
Mom Jane, BS, RDH

[Al]

Michelle, this is precisely my point. I do not meant to imply that doctors are, bu nature or by class, "uncaring". No, they are just people, which is to say, in terms of morality, nobility, empathy, and all the other supposed virtues, they run the gamut--just like the rest of us. Likewise, with "vices". But the fact is that your life is not their life; For the same reason, I did not have an architect design my house: After all the pictures, write-ups, and awards (or whatever), the architect cashes the check, retires to his own deck and moves on to the next project. But I actually have to live in the place. Your doctor sees hundreds or even thousads of patients a year. Of course their brains become mush, when it comes to fine details! How could it be otherwise? It is true, of course, that emergencies can focus everyone's mind. But my own strategy for getting the doctor's full, and perhaps lasting attention, is to 1) get him and keep him off-script, and 2) Bridge the knowledge gap as much s possible. That means studying hard, becoming aware or industry trends that the doctor is not aware of (I read more journal articles than Drac does--a fact that he no longer resents!). It also means endlessly studying those dots for alternate interpretations.

Al

[Al]

Jane and Anne both mentioned the Friday Harbor Labs. While not as famous as Woods Hole, it is, nevertheless, a top research facility, particularly for marine sciences. It, most eveywhere else in the islands, a lovely place, so long as you believe in ferries and other maritime modes of transportation.The islands are a wonderful place to call home, and something of an oasis: We residents refer to the mainland as "America", as in, "I have to go to America today". Unfortunately, the doctors are all Americans.

Al

[Dirty Don]

I can't say enough positive words about what I have witnessed at the Mayo Clinic and its philosophy of collaborative medicine. It is the best I have ever seen.

A large & magnificent DITTO!!

[Al]

Unfortunately, Don, most of us to now have a Mayo-like situation. We have to construct our own team.

Al

[Dirty Don]

Unfortunately, Don, most of us to now have a Mayo-like situation. We have to construct our own team.Al

I wouldn't call it a misfortune, rather it simply shows that Mayo and others like it do work. It IS unfortunate that many if not most don't have the immediate access to a Cleveland, Mayo, or Hopkins...thus the hard work to put together a 'team' of collaborative colleagues. I admire those who do put those teams together, and I realize that those of us who have access to a 'Mayo' like situation are fortunate...just saying...now put your pred away!! LOL

Don

[annekat]

Jane and Anne both mentioned the Friday Harbor Labs. While not as famous as Woods Hole, it is, nevertheless, a top research facility, particularly for marine sciences. It, most eveywhere else in the islands, a lovely place, so long as you believe in ferries and other maritime modes of transportation.The islands are a wonderful place to call home, and something of an oasis: We residents refer to the mainland as "America", as in, "I have to go to America today". Unfortunately, the doctors are all Americans.

Al I haven't been on the islands enough to hear the "America" thing. That's funny. But I certainly know that feeling, once there, that it is an oasis and you are somewhat insulated and protected from mainstream society. Living there might be kind of like a permanent vacation, and if you had to go to "America", it would be a brief interruption in the vacation. If you have to have Wegs, even with the transportation issues and such, that is pretty good place to have to have it. And the UW labs themselves are like a little oasis. I wonder if Jane's brother could have known my dad, since there was a little overlap in when they would have spent time there.

Also, congrats on designing your own house! My dad's wife pretty much did the same thing. (Of course, then you have to work with the builders unless you're going to build it yourself.) I think I'd trust an architect a bit more than most doctors to take the time for personalized attention and doing the job I needed done. You saved yourself some big money, there, though!

[Debbie C]

I feel so stupid when I talk to you guys..you all seem to know so much about this disease and what to ask and what to expect. I just came back from by dr. and he gave me a copy of my labs and my current ultra sound of my kidneys. The labs were all fine EXCEPT it did show a trace of ketones,trace of blood and trace of protein in my urine. I had ct ct scan done on my liver and kidneys and they noticed cysts and multiple lesions which they suspect are benign but suggest another follow-up ct.They don't know I have WG so I'm hoping it hasn't spread. My reg dr. did not seem to concerned but he is sending over a referral to a kidney dr. Question-----if it were in my kidneys wouldn't my WBC & RBC be off?

[annekat]

Debra, don't feel stupid... we don't all know that much. For example, I can't answer your question... Someone like Al who does know a lot will chime in and clarify things for you.

[Palmyra]

" I wonder if Jane's brother could have known my dad, since there was a little overlap in when they would have spent time there." ~Anne

Hi Anne...it would be fun to know if they might have crossed paths. I think we should try and find out. I can ask my brother who was director of his program at the time. I was only 16 yrs old at the time of my first visit (~July 1973), and I stayed with my brother in student housing. I remember going to a small reception at the directors home on the island, where some students performed a classical music recital. It was an extraordinary experience for a teen from Texas.

Jane


And I second Anne's comments to Debra...we are all on this site for support, not judgment. That one is fortunate enough to land on this forum, while navigating the complexities of this disease, is a wonderful thing.

[annekat]

Jane, I'll send you a PM re Friday Harbor Labs.

[Al]

I feel so stupid when I talk to you guys..you all seem to know so much about this disease and what to ask and what to expect. I just came back from by dr. and he gave me a copy of my labs and my current ultra sound of my kidneys. The labs were all fine EXCEPT it did show a trace of ketones,trace of blood and trace of protein in my urine. I had ct ct scan done on my liver and kidneys and they noticed cysts and multiple lesions which they suspect are benign but suggest another follow-up ct.They don't know I have WG so I'm hoping it hasn't spread. My reg dr. did not seem to concerned but he is sending over a referral to a kidney dr. Question-----if it were in my kidneys wouldn't my WBC & RBC be off? Debra, one of the trickier things in dealing with the medicos is the huge knowledge gap. Among Weggies, though...not so much. Anyway, once you realize that a lot of the gap has to do with vocabulary, all you have to do is learn how to use the jargon, and you are in.

First, let me get this straight: Who, exactlt, does not know about the WG? Why not? And do they know now?

I'm glad you got your referral. Be sure the nephrologist knows about the WG! Current kidney function is determined mostly from two blood tests: creatinine and BUN. Protein and blood can be caused by several things (some of them rather benign), the worst of which for Weggies is NCGN (necrotizing crescentic glomerulonephritis), which is usually determined through a biopsy. This is quite serious, and is the reason that any hemoturia needs to be checked out. (NCGN plus ANCA is generally sufficient for a diagnosis--either GPA or MPA, depending on the ANCA type.) Kidneys rarely present with granulomas, even when respiratory areas are rife with them. WBC would not necessarily be off, though that count can suggest active infection, among other things, RBC might indicate, indirectly, highly distressed kidneys, but the more normal number to look at to determine anemia is HCT (hematocrit). Regardless of whether the WG has "spread" (I am hoping not!) you do have issues that should be considered by a good kidney doc who knows about WG.

Al

[Al]

....Also, congrats on designing your own house! My dad's wife pretty much did the same thing. (Of course, then you have to work with the builders unless you're going to build it yourself.) I think I'd trust an architect a bit more than most doctors to take the time for personalized attention and doing the job I needed done. You saved yourself some big money, there, though! I only pounded a few nails, myself, Anne. Mostly, I let the pros do it. I did serve as general contractor, and I learned a huge amount along a steeper than I would have thought learning curve. But I did have the good sense to hire a really fine head carpenter, and I generally let him decide on the day-to-day solutions, though we did have a lively dialog about many specifics. Also, I mostly took his recommendations for the subcontractors.

Come to think of it, this is pretty much how I am dealing with my ongoing "personal renovation project"....

[Thakator]

"personal renovation project"....
Good one, Al; that's what we're up to alright. The new us - - might just as well try to make this new house that we're somewhat trapped in as comfortable and as efficient as possible even as the old Wegs wolf keeps on trying to blow it down. Ron

[Debbie C]

Thank you Al (that was also my fathers and is my brothers name..short for Albert !) But I went and looked at my blood and urine results for all the things you mentioned and I am within normal range for everything. So hopefully so far so good with my kidneys ,I know my lungs need help.But thank you so much for sharing your knowledge with me. I need to learn the jargon now !!!

[Al]

Thank you Al (that was also my fathers and is my brothers name..short for Albert !) But I went and looked at my blood and urine results for all the things you mentioned and I am within normal range for everything. So hopefully so far so good with my kidneys ,I know my lungs need help.But thank you so much for sharing your knowledge with me. I need to learn the jargon now !!!Well, Debra, you mentioned "lesions". No lesions are normal. Please let us know what they tell you next.

Al

PS I am also an "Albert". When I was a kid, I suffered some. Since my father was also an Albert, and I had two Uncle Als, my mother tagged on my middle initial--G. You can imagine the juvenile ribbing: "Hey, Algie Swampscum!"

[Debbie C]

I'll let u know what the scans show..u can probably tell me more than the docs.....I should just send u a copy of them HA! HA!

yea I bet u did get some ribbing with algie. I was always the shortest one in the class and my mother gave me a perm with natural cutlr hair...I looked like Shirley Temple for a long time.
Well I gotta go check in with the birds !!!!

[annekat]

PS I am also an "Albert". When I was a kid, I suffered some. Since my father was also an Albert, and I had two Uncle Als, my mother tagged on my middle initial--G. You can imagine the juvenile ribbing: "Hey, Algie Swampscum!" Al, aren't kids delightful sometimes! I was called Witchy because I had dark hair, a longish nose, and a pointed chin. Some of that ribbing has lasting damage. In your case, I imagine you were able to rise above it and probably came up with some pretty good names for your tormentors.

[annekat]

yea I bet u did get some ribbing with algie. I was always the shortest one in the class and my mother gave me a perm with natural cutlr hair...I looked like Shirley Temple for a long time.
Well I gotta go check in with the birds !!!! Debra, I was the shortest, too! Always last to be picked for teams in PE. You must have been adorable with Shirley Temple hair. Yes, the birds are calling!

[Al]

Well, gang, I do not have a personal "update" thread, so maybe this will do for now.

My postings may be a bit sparse for a spell. As you may know, or will surely find out at some point, prednisone has more side effects than you might realize. Case in immediate point: It speeds up cataracts by 10 years or more. Now, I am on a much lower dosage these days. Nevertheless, the eyes are definitely messed up, which is quite boring. I am getting really tired of those shimmery, dancing letters that refuse to come into definitive focus, especially during low-light conditions. So: Tomorrow I have the surgery on the right eye. If all goes well, the left eye will follow in about 6 weeks. They say that there is a 499 out of 500 chance that all will go well. Unless I am the 500th, I will be back tomorrow night, though without a license to drive for another 24 hours. We'll see. Ever then, I will have to get used to the mis-matched eyes. I'll be around the rest of the week, though rather busy. In any event, the next week, I am scheduled to go to the bird camp, where I will be giving some sort of presentation. The day after I get home, my wife and I will take a few days off. In both cases, I will have little or no internet access (which would sort of defeat the purpose, I suppose). (You suppose you lucky folks can do without me...?)

Al

[mishb]

Well, gang, I do not have a personal "update" thread, so maybe this will do for now.

My postings may be a bit sparse for a spell. As you may know, or will surely find out at some point, prednisone has more side effects than you might realize. Case in immediate point: It speeds up cataracts by 10 years or more. Now, I am on a much lower dosage these days. Nevertheless, the eyes are definitely messed up, which is quite boring. I am getting really tired of those shimmery, dancing letters that refuse to come into definitive focus, especially during low-light conditions. So: Tomorrow I have the surgery on the right eye. If all goes well, the left eye will follow in about 6 weeks. They say that there is a 499 out of 500 chance that all will go well. Unless I am the 500th, I will be back tomorrow night, though without a license to drive for another 24 hours. We'll see. Ever then, I will have to get used to the mis-matched eyes. I'll be around the rest of the week, though rather busy. In any event, the next week, I am scheduled to go to the bird camp, where I will be giving some sort of presentation. The day after I get home, my wife and I will take a few days off. In both cases, I will have little or no internet access (which would sort of defeat the purpose, I suppose). (You suppose you lucky folks can do without me...?)

Al

It's going to be hard Al, but I'm sure we can manage it alone for a few days :crying:

Take care of yourself and I hope all goes well with the eyes........I'm sure you will be number 499 (you can't be the special one all of the time).
Enjoy your days away and we look forward to the updates

[pberggren1]

I'll try Al, but gee whiz, could u at least give more notice next time PLEASE!!!!

[drz]

I had both eyes done and it went OK. I remember when surgeon gave me same spiel about risk of side effects like being 1 in a thousand. I responded you mean my risk of worse vision is twenty times higher than the disease I already got. Those odds sound horrible. He chuckled and said Yah, I guess they are.

Best wishes for better vision. I wore glasses and had one lens taken out so i had less problem with the one eye good and one eye bad.



Well, gang, I do not have a personal "update" thread, so maybe this will do for now.

My postings may be a bit sparse for a spell. As you may know, or will surely find out at some point, prednisone has more side effects than you might realize. Case in immediate point: It speeds up cataracts by 10 years or more. Now, I am on a much lower dosage these days. Nevertheless, the eyes are definitely messed up, which is quite boring. I am getting really tired of those shimmery, dancing letters that refuse to come into definitive focus, especially during low-light conditions. So: Tomorrow I have the surgery on the right eye. If all goes well, the left eye will follow in about 6 weeks. They say that there is a 499 out of 500 chance that all will go well. Unless I am the 500th, I will be back tomorrow night, though without a license to drive for another 24 hours. We'll see. Ever then, I will have to get used to the mis-matched eyes. I'll be around the rest of the week, though rather busy. In any event, the next week, I am scheduled to go to the bird camp, where I will be giving some sort of presentation. The day after I get home, my wife and I will take a few days off. In both cases, I will have little or no internet access (which would sort of defeat the purpose, I suppose). (You suppose you lucky folks can do without me...?)

Al

[Psyborg]

Good Luck AL, I hope everything goes smoothly.

[Debbie C]

Good luck with your surgeries..I'm sure everything will go well.Hope you and your wife enjoy a much needed break. Let us know when u r back.

[Sangye]

Good luck, Al. I hope it goes off without a hitch. :smile1:

[BrianR]

You'll be good for another 50 years Al!

[HopeinTN]

Good luck Al! I hope it goes well and you have a speedy recovery.

[Al]

Thanks, folks! I am back. It is a bit hard to do anything at the computer, so I'll just leave a short report. It was painful to get up so early, but the surgery itself was quick and easy. Even now. so shortly afterword, my distance vision in the new eye is just about perfect--no glasses. But there is no close up vision to speak of; I'll need new glasses for that. The other eye has to do all the reading for now, which means I'll need an eye patch or something for now. More later!

Al

[chrisTIn@]

Reading with one eye must be difficult...
Hope you 'll soon have new glasses.

Glad your surgery went so well! :thumbsup:

[Al]

You'll be good for another 50 years Al!This made me snort like a warthog, Brian. If I am an Old Man now, let's see: Another 50 years would make me....er...

Besides, I's not sure I want to be "good". I'm thinkin' that maybe it is time to be just a little bad. Or, at least, I wold like to think that I am still capable of getting into trouble, even as the opportunities become fewer and farther between....

Al

[Al]

Reading with one eye must be difficult...
Hope you 'll soon have new glasses.

Glad your surgery went so well! :thumbsup:This is true. Working at the computer is kind of strange, as I can't use the new eye for it. For distance, I can use drz's trick of removing one lens from the old glasses, but, for reading, I have to use just one eye--the old one--for now. But it is amazing how much better the new eye is.

Al

[Al]

I had both eyes done and it went OK. I remember when surgeon gave me same spiel about risk of side effects like being 1 in a thousand. I responded you mean my risk of worse vision is twenty times higher than the disease I already got. Those odds sound horrible. He chuckled and said Yah, I guess they are.

Best wishes for better vision. I wore glasses and had one lens taken out so i had less problem with the one eye good and one eye bad.Thanks for both tips. I used the same line, regarding the probabilities, with the surgeon. Good thing I waited until afterward. He kind of fell over laughing!

Al

[Dryhill]

Al, I am glad to hear everything went well, but like Phil said a little bit warning next time please. I like your idea of a patch over one eye all you need is a parrot sitting on your shoulder and a bottle of rum and then you can start telling stories about your time on the Spanish Main and how you knew Long John Silver ........ pieces of eight!

Jim

[Al]

Al, I am glad to hear everything went well, but like Phil said a little bit warning next time please. I like your idea of a patch over one eye all you need is a parrot sitting on your shoulder and a bottle of rum and then you can start telling stories about your time on the Spanish Main and how you knew Long John Silver ........ pieces of eight!

JimAr! Ar! Arrrr!

Al

[Dryhill]

Ar! Ar! Arrrr!

Al

That's it Al, now for the parrot.

Jim

[Palmyra]

I want pictures of the man and his parrot. Har har har ye mates!

[drz]

Thanks for both tips. I used the same line, regarding the probabilities, with the surgeon. Good thing I waited until afterward. He kind of fell over laughing!

Al

I had to wear a patch over the new eye for some days and then got reading glasses on the cheap from local vision clinic that worked great for close up stuff. Still use them a lot as they work better than new prescription ones I got that cost 35 times more.

Good thing we got a sense of humor even if it is gallows humor since it helps get through some of these fun things.

[annekat]

Oh, Al, I haven't been paying attention and didn't know about your eye surgery! I hope it went well. Bird camp, eh? I guess we'll hear more about that eventually, and I'll see you in Olympia at the Governor's Mansion on the 18th if all goes according to plan. (I'll fill the rest of you in on that after the fact!)

[Debbie C]

My eyes are really getting bad. I have to use cheaters to see up close but I keep having to get stronger ones.I also have a cheap pair for far away. But my eyes water alot anymore and that could be causing my headaches..who knows. This whole WG thing is one big headache

[BrianR]

This made me snort like a warthog, Brian. If I am an Old Man now, let's see: Another 50 years would make me....er...

Besides, I's not sure I want to be "good". I'm thinkin' that maybe it is time to be just a little bad. Or, at least, I wold like to think that I am still capable of getting into trouble, even as the opportunities become fewer and farther between....

Al

Glad to hear the surgery went well and...sometimes being "bad" is what makes you "good". Isn't there some cheesy Huey Lewis diddy to that effect?

[Dirty Don]

HEY! Huey Lewis is not cheesy...just, er, old...like us! Glad on getting thru the surgery Al...hang in there, keep on keepin on, and a little trouble is what keeps us going...hate the possibility of living a puritanical life...just a large yuk in my book...like the world IS perfect?! LOL...best of luck!

[Al]

I want pictures of the man and his parrot. Har har har ye mates!My totem has always been Raven, the bird that, in North Coast Indian tradition, could challenge the gods and get away with it. Maybe I can come up with a video: the Corvus corax on my shoulder, croaking "Nevermore".

Al

[Al]

I had to wear a patch over the new eye for some days and then got reading glasses on the cheap from local vision clinic that worked great for close up stuff. Still use them a lot as they work better than new prescription ones I got that cost 35 times more.

Good thing we got a sense of humor even if it is gallows humor since it helps get through some of these fun things.Right now, the main problem is getting the new eye and the remaining old one seeing, er, eye-to-eye. I did take the lens out of the old specs, but I haven't yet trained my brain to let the right eye, which was always my weakest, be the dominant one. I got some reading glasses, which helps the near-focus on the new eye, but that throws the left eye off totally. I get the other cataract dealt with in July, but I have to figure out how to drive and such before then. Anyway, I am almost giddy about having 20-20 vision with no glasses, which hasn't been the case since I was in, maybe, 2nd grade or so.

Al

[Al]

HEY! Huey Lewis is not cheesy...just, er, old...like us! Glad on getting thru the surgery Al...hang in there, keep on keepin on, and a little trouble is what keeps us going...hate the possibility of living a puritanical life...just a large yuk in my book...like the world IS perfect?! LOL...best of luck!Brian and Don: I have noted that age is only important if you are a cheese. Maybe that is what you are suggesting...?

I don't think too many have called me Puritanical and gotten away with it, though I have heard the softly-spoken "yuk" with increasing frequency. What, do you suppose, gives? And why do people call me Stilton...?

Al

[Sangye]

Glad your surgery went well, Al. 20/20...nice. :thumbsup:

[annekat]

Missed the part about 20-20 with no glasses! Wow, that would be amazing! I've had 'em since 5th grade.

[Lightwarrior]

Missed the part about 20-20 with no glasses! Wow, that would be amazing! I've had 'em since 5th grade.

I got my glasses in the 5th grade also.

[annekat]

I got my glasses in the 5th grade also. And man, were they ugly! Those pointy cats-eye ones. There wasn't much choice of styles in those days. My best friend had exactly the same frames and didn't like them, either.

I actually needed glasses in the first or second grade, like Al, but it took them awhile to catch on, or me awhile to admit, that I was having trouble seeing the blackboard.

[Sangye]

When I was in 2nd grade an eye doctor told my mom that if I wore glasses for a few months right then, I'd never need them again. He was right. I wore them for maybe 6 months and after that I had eagle vision-- better than 20/20-- until a few years ago (about age 45). I have the usual diminished loss of focus with reading and need the drugstore magnifier glasses to read books. I can still use the computer without them though. Yay for that.

[pberggren1]

When I was in 2nd grade an eye doctor told my mom that if I wore glasses for a few months right then, I'd never need them again. He was right. I wore them for maybe 6 months and after that I had eagle vision-- better than 20/20-- until a few years ago (about age 45). I have the usual diminished loss of focus with reading and need the drugstore magnifier glasses to read books. I can still use the computer without them though. Yay for that.

This is very interesting Sangye. I wonder how wearing the glasses at a young age like that would help your eyes in the long run.

[Sangye]

I wish I had a better understanding of it, too. Wearing glasses changes the shape of the eyeball, so maybe he could tell that my eyes just needed a little adjustment as the eye grew?

[Debbie C]

i wore the same kind of glasses when I was young ( I don't even remember what age ) they were blue with rinestones and pointed corner.I thought I was pretty cool ...for awhile...now I can use a seeing eye dog

[pberggren1]

I wish I had a better understanding of it, too. Wearing glasses changes the shape of the eyeball, so maybe he could tell that my eyes just needed a little adjustment as the eye grew?

Oh yes, this makes sense. That could very well be.

[Dryhill]

My totem has always been Raven, the bird that, in North Coast Indian tradition, could challenge the gods and get away with it. Maybe I can come up with a video: the Corvus corax on my shoulder, croaking "Nevermore".

Al

Al, ok a little bit different to have a raven on your shoulder, while they make nice pets and can be taught tricks I don't think they will say "pieces of eight" or "shiver my timbers".

Jim

[annekat]

i wore the same kind of glasses when I was young ( I don't even remember what age ) they were blue with rinestones and pointed corner.I thought I was pretty cool ...for awhile...now I can use a seeing eye dog Blue with rhinestones... oooh, I bet you felt like a movie star! Mine were sort of pinkish brown with sort of a wood-grain effect. I'm making them sound even uglier than they were!

[annekat]

When I was in 2nd grade an eye doctor told my mom that if I wore glasses for a few months right then, I'd never need them again. He was right. I wore them for maybe 6 months and after that I had eagle vision-- better than 20/20-- until a few years ago (about age 45). I have the usual diminished loss of focus with reading and need the drugstore magnifier glasses to read books. I can still use the computer without them though. Yay for that. I wish they'd thought of that with me! Maybe if I'd spoken up sooner about not being able to see the blackboard. I heard that my now 80-year-old aunt wore glasses for a short time as a young child, but I seem to remember it being to correct cross-eyes.

[Dirty Don]

Al, ok a little bit different to have a raven on your shoulder, while they make nice pets and can be taught tricks I don't think they will say "pieces of eight" or "shiver my timbers".Jim

For one thing, Al, or as I call him...'the old pirate', would look good with a Raven on his shoulder, albeit a bit messy at times. And who do you think is gonna mess with a guy with a full sized raven on his shoulder? Huh!? LOL! He could have what he wants as long as he keeps his 'raven' self to his self...or is that raving??? One never knows nevermore...

[Dryhill]

I wish I had a better understanding of it, too. Wearing glasses changes the shape of the eyeball, so maybe he could tell that my eyes just needed a little adjustment as the eye grew?

Sangye, that is the probable reason. My elder daughter needed galsses for about seven or eight months, and the optician said was to help the eye grow stronger - a very simple description is the glasses would help the faulty eye to stop struggling to see things and get on with growing.

Jim

[Sangye]

Thanks Jim, I've always wondered!

[Al]

Interesting....this thread has trifurcated into three braids: The optical stuff, the cosmetic stuff, and the bird-on-the-shoulder stuff. These are all interesting, so I am thinking it best to let them all fly freely in the wind--a child of the sky sort of thing--rather than trying to weave them together. This means, of course, that I need to respond in kind....

[annekat]

Sangye, that is the probable reason. My elder daughter needed galsses for about seven or eight months, and the optician said was to help the eye grow stronger - a very simple description is the glasses would help the faulty eye to stop struggling to see things and get on with growing.

Jim
Sounds like a good reason to check kids' eyes at a really young age.... Of course, I do remember having vision tests at school, had forgotten about that.

[Al]

When I was in 2nd grade an eye doctor told my mom that if I wore glasses for a few months right then, I'd never need them again. He was right. I wore them for maybe 6 months and after that I had eagle vision-- better than 20/20-- until a few years ago (about age 45). I have the usual diminished loss of focus with reading and need the drugstore magnifier glasses to read books. I can still use the computer without them though. Yay for that.

...So we'll start with the optical stuff. When I was a kid, I was very interested in cameras and lenses and such. I was also a persistent (maybe even a little bratty) little interlocutor of every leaned person. (Still am, when it comes down to it.) When I needed glasses, I pummeled the opthomologist with all kinds of questions. He was very kind to me, and I learned a lot--at least of what was known then. Most of it still obtains.

The answer to the conundrum is that it all depends of the problem with the eye(s). If it is a muscular thing, like a lazy eye, temporary glasses or certain training exercises will do the job. Glasses do not actually change the shape of the eyeball, but growth does. If you are far-sighted, meaning that the eye focuses in back of the retina, you often do "grow out of it". Some kinds of satigmatism seem to improve with age as well. Not so much if you are near sighted, in which case, your eyes usually get worse with age. There were a few "alternate therapies" available, which insisted that certain exercises could re-shape the eyeball. But they were largely given up over the years as ineffective. (Contact lenses, by the way, can be made to re-shape the cornea somewhat, as with keratoconus.) Cataracts are largely a function of age. Most everyone gets them if they live long enough, the median age of onset about 70-75 years. They are a hardening of the lens, such that it will not properly change focal points. They may be due to too much ultraviolet exposure or other oxidative damage. Smokers seem to get cataracts on the early side, but, since I do not smoke, prednisone seems to be the speed-up agent in my case.

Al

[Dryhill]

Sounds like a good reason to check kids' eyes at a really young age.... Of course, I do remember having vision tests at school, had forgotten about that.

My wife had to wear glasses from an early age (I think around seven years old) due to a major defect in one eye. So I must say she was the one to insist both girls had regular eye checks and it proved to be a good thing she did.

Jim

[Sangye]

My problem as a child was not being able to see the blackboard clearly, so I was near-sighted. How does that figure with what you know, Al?

[Al]

I wish they'd thought of that with me! Maybe if I'd spoken up sooner about not being able to see the blackboard. I heard that my now 80-year-old aunt wore glasses for a short time as a young child, but I seem to remember it being to correct cross-eyes.I remember the golden age of ugly specs, Anne! You should have seen--no, you really should not have seen--my high school yearbook mug shot.

Interesting how I finally decided that I really, really needed glasses. I had worn them until 7th grade, I thin, but I had decided to go without, due to the fact that I thought everyone was laughing at me. (The probably were, though whether for the specs or another reason I thought it best not to know.) By 9th grade, It was in band class. I played trombone, but I couldn't real the music so well. So i relied on my neighbor; I could gauge his slide positions and synch with him. Only...turns out that he was screwing up, which I got yelled for. "Hey! How am I supposed to know the right notes!" seemed like a pretty lame response, so I got the glasses.

Al

[Al]

Al, ok a little bit different to have a raven on your shoulder, while they make nice pets and can be taught tricks I don't think they will say "pieces of eight" or "shiver my timbers".

Jim
Maybe they could, for a price, Jim. They are clever birds don't you know.

Al

[Al]

For one thing, Al, or as I call him...'the old pirate', would look good with a Raven on his shoulder, albeit a bit messy at times. And who do you think is gonna mess with a guy with a full sized raven on his shoulder? Huh!? LOL! He could have what he wants as long as he keeps his 'raven' self to his self...or is that raving??? One never knows nevermore...If I had a pet raven, Don, I think I would name him "Stark Mad". You think...? And as far as the messiness is concerned, I think I could go with the Ancient Mariner getup. Coleridge would approve, yes? I could, in all cases, use a heckler for my albatross.

Al

[Dryhill]

So i relied on my neighbor; I could gauge his slide positions and synch with him. Only...turns out that he was screwing up, which I got yelled for. "Hey! How am I supposed to know the right notes!" seemed like a pretty lame response, so I got the glasses.

Al

Al, that sounds like the time I copied a friends answers to some maths homework, trouble was he turned out to just as hopeless as I was, boy did that cane hurt. The thing that upset me the most was I had to do the maths homework again ........ some teachers!.

Jim

[Al]

My problem as a child was not being able to see the blackboard clearly, so I was near-sighted. How does that figure with what you know, Al?Not sure, Sangye. Could you read close-up? Just musing here, but it could indeed have been a muscular issue in your case. Something that squeezed the eyeball into an elongated shape. Maybe the short-term glasses allowed your eye to relax enough that if reverted to a better shape...? Maybe this is worth a little research. I wonder if my eye doc would mind me calling him at home right now....

Al

[Al]

Al, that sounds like the time I copied a friends answers to some maths homework, trouble was he turned out to just as hopeless as I was, boy did that cane hurt. The thing that upset me the most was I had to do the maths homework again ........ some teachers!.

Jim
My mother was a teacher too, Jim, so my teachers were reluctant to damage my little body. (This was somewhat before corporal punishment was outlawed as abuse.) But I did often have to do my homework "over again"; er, that is to say, I fibbed: I had never, technically, done it in the first place, as I had gotten onto some other project--reading Spinoza or some such. But I prided myself into whipping it into shape on the spur of the moment. Naturally, this got me into trouble later. High school wasn't a problem--I could always finish my work in home room. Unfortunately, putting things off until the last minute became a nasty habit. "Why do something today when you can put it off until tomorrow?" was my motto. My real comeuppance came at the University. I had, by this time, gotten onto the practice of writing the term papers the night before. In fact, I was too well know for it, which gave rise to the one time I did something unforgivable at that level. (I blush to remember this little bit of criminal experimentation, and to recall it here, but hey, we are all friends...right...? Anyway, I did learn my lesson, but good.) Seems that a dorm-mate in the same class also had deferred writing his paper. Stupidly, I agreed to write the darned thing for him (don't say a word, Don!). Now, I thought it best to write my own first, so that I would be at my freshest. His I got done about 8:00 in the morning. (40 pages in one night--on an electric typewriter! Couldn't do it nowadays, and that is a fact.) Problem is, when the grades came out, he got an A, and I got a B. Quoth the Raven: Nevermore.

Al

[annekat]

My problem as a child was not being able to see the blackboard clearly, so I was near-sighted. How does that figure with what you know, Al? I could see it if I sat close enough, until it got progressively worse, and then I couldn't see it clearly from any desk. I am nearsighted. If that was your problem, I'm impressed that they were able to fix it that way. (When I first read your sentence I thought you meant that you didn't have a problem seeing the blackboard clearly, but it could be read either way, I think.)

[annekat]

My mother was a teacher too, Jim, so my teachers were reluctant to damage my little body. (This was somewhat before corporal punishment was outlawed as abuse.) But I did often have to do my homework "over again"; er, that is to say, I fibbed: I had never, technically, done it in the first place, as I had gotten onto some other project--reading Spinoza or some such. But I prided myself into whipping it into shape on the spur of the moment. Naturally, this got me into trouble later. High school wasn't a problem--I could always finish my work in home room. Unfortunately, putting things off until the last minute became a nasty habit. "Why do something today when you can put it off until tomorrow?" was my motto. My real comeuppance came at the University. I had, by this time, gotten onto the practice of writing the term papers the night before. In fact, I was too well know for it, which gave rise to the one time I did something unforgivable at that level. (I blush to remember this little bit of criminal experimentation, and to recall it here, but hey, we are all friends...right...? Anyway, I did learn my lesson, but good.) Seems that a dorm-mate in the same class also had deferred writing his paper. Stupidly, I agreed to write the darned thing for him (don't say a word, Don!). Now, I thought it best to write my own first, so that I would be at my freshest. His I got done about 8:00 in the morning. (40 pages in one night--on an electric typewriter! Couldn't do it nowadays, and that is a fact.) Problem is, when the grades came out, he got an A, and I got a B. Quoth the Raven: Nevermore.

Al That is funny, Al. I did some of the same things, including being a great procrastinator, which I still am. I think I even picked up a book of Spinoza once, though I don't remember a thing about it. I never wrote a paper for anyone but did have some instances of doing my best and most highly graded work while sleep deprived. I hope that guy paid you to write his paper! I even wrote some of mine on a manual typewriter. No computers or printers in those days.

And thinking back on grade school, I do remember some notable examples of corporal punishment, in front of the class, in the days before it was outlawed..... not me, it was always boys, it seems. At least our society has done something right by outlawing that, although I'm not sure a teacher can even hug a kid, which would be kind of sad....

[Al]

That is funny, Al. I did some of the same things, including being a great procrastinator, which I still am. I think I even picked up a book of Spinoza once, though I don't remember a thing about it. I never wrote a paper for anyone but did have some instances of doing my best and most highly graded work while sleep deprived. I hope that guy paid you to write his paper! I even wrote some of mine on a manual typewriter. No computers or printers in those days.

And thinking back on grade school, I do remember some notable examples of corporal punishment, in front of the class, in the days before it was outlawed..... not me, it was always boys, it seems. At least our society has done something right by outlawing that, although I'm not sure a teacher can even hug a kid, which would be kind of sad....The guy did pay me, Anne, but I was so mortified by the filthy lucre that I gave it all to the American Friends Service Committee (it being the height of the Viet Nam war).

Boys are typically (or maybe stereotypically) more of a challenge to authority-at least overtly. I do understand why authority figures are not allowed to touch their "customers", but I agree that it is a sad necessity.

Al

[Al]

I could see it if I sat close enough, until it got progressively worse, and then I couldn't see it clearly from any desk. I am nearsighted. If that was your problem, I'm impressed that they were able to fix it that way. (When I first read your sentence I thought you meant that you didn't have a problem seeing the blackboard clearly, but it could be read either way, I think.)My progression was like yours, Anne. But all parties agree that I was relatively stable pre-pred. The the eyes really got chewed up.

Al

[annekat]

Boys are typically (or maybe stereotypically) more of a challenge to authority-at least overtly. I do understand why authority figures are not allowed to touch their "customers", but I agree that it is a sad necessity.

Al True, but I also have a hard time imagining even those creepy men teachers of my day asking a girl wearing a dress to bend over in front of the class so she could be swatted with a ruler for not doing her homework. We had a woman teacher who would take the kid into the adjoining vacant room for a paddling, to preserve some dignity, but with the doors open so we could still hear it just fine. She may have even done it to a girl once.

Your point is well taken about not allowing touching by teachers these days.

[annekat]

My progression was like yours, Anne. But all parties agree that I was relatively stable pre-pred. The the eyes really got chewed up.

Al I will have to be on my guard for that possibility.

[Al]

...I also have a hard time imagining even those creepy men teachers of my day asking a girl wearing a dress to bend over in front of the class so she could be swatted with a ruler for not doing her homework.....I believe, Anne, we were discussing Schadenfreude, yes? This is, perhaps, the more active form, designed to abase and humiliate.

Al

[annekat]

I believe, Anne, we were discussing Schadenfreude, yes? This is, perhaps, the more active form, designed to abase and humiliate.

Al Yes, and to teach kids that it is OK to do that to other people.

[mishb]

I love the song Schadenfreude by Avenue Q
The song is what I think about when someone of the not so nice variety, is being not so nice. Yes I also believe that karma will get them in the end

[Al]

I love the song Schadenfreude by Avenue Q
The song is what I think about when someone of the not so nice variety, is being not so nice. Yes I also believe that karma will get them in the endDon't know the tune, Michelle. I'll look it up. I can say, though, that karma does seem to get its way in the end--with or without our help. Though, I think that karma sometime gets it wrong....

Al

[Al]

My friends, you know how much I would like to stay and chat with you all. But I am off no for a couple of weeks with limited or no internet access. I am taking with me a some books my daughter gave my for Father's Day: Gift of the Crow (http://www.amazon.com/Gifts-Crow-Perception-Emotion-Thought/dp/143919873X/ref=sr_1_1?s=books&ie=UTF8&qid=1340116097&sr=1-1&keywords=gift+of+the+crow), which I commented on before; The Raven's Gift (http://www.amazon.com/The-Ravens-Gift-Remarkable-Wilderness/dp/0312611773/ref=sr_1_1?s=books&ie=UTF8&qid=1340116190&sr=1-1&keywords=the+raven%27s+gift), a remarkable story of healing, and Zoobiquity (http://www.amazon.com/Zoobiquity-Animals-Health-Science-Healing/dp/0307593487/ref=sr_1_1?ie=UTF8&qid=1340116354&sr=8-1&keywords=zoobiquity), which appears to be a great read for Weggies, who seem to be rather interested in all things medical, and nearly all things about the animal world.

Have a great time, everyone. Enjoy Sangye's cookies and such. And by all means, LISTEN TO HER! See you soon....

Al

[drz]

If I have a larger point, it would be, I think, that delayed diagnoses--whatever the reason for them--threaten major organs and, perhaps, life itself. I understand the desire to look for simple, prosaic answers first. But this is not always where the solutions lie. By the time this becomes apparent, lungs and kidneys, for instance can be in serious trouble. Yet the system is not set up for rapid diagnosis. There are many reasons for this. I hope to get a major dialog going about the what-to-do-about-that of it all. I'll start: At the end of each and every day, the doctor goes home, to his or her own family, has a drink or two, and, perhaps, falls asleep in front of the television. The next time he or she thinks about your ailment is at your next appointment. For you on the other hand, it is pretty much constantly on your mind--at least in the back of it. Therefore, it behooves you, the patient, to take the lead in de-coding the "dots". In my case, I felt strongly that I had a systemic inflammatory disease, even though I had no vocabulary for it; nor could I, then, discuss a hypothetical etiology and pathogenesis for it. I had to keep blasting through the tendency for the medicos to ignore the history.

I think there is more to this story; your turn!

Al

Al


I think this quote summarizes well my new philosophy since Wegs almost got me. I no longer settle for or accept response that tells me what my symptom isn't, I want to know was it is and what is causing it and how it should be treated. One of my symptoms I developed from the Wegs damage after many months was gynecomastia. It was causing me some discomfort and mild pain and I wanted to know what it was so I saw several different doctors at different clinics and received some reassurance that it was not breast cancer or lymphoma, but no explanation as to the cause or recommended treatment. I decided this was not good enough and didn't want to end up with another serious problem from delayed diagnosis so i search for a doctor who had a more experience and willingness to work harder to answer my question as to why I had developed it and what to do about it. The fourth doctor seemed willing to take on this challenge and had the back ground info from the first three doctors and put it all together to give me a clear answer and recommendation. The Cytoxan IV treatment had caused swelling in my testicles which damage them and reduced my testosterone level and then the imbalance between the estrogen and testosterone caused the gynecomastia. The testosterone levels did not appear to be dropping anymore and had probably stabilized so trying to correct this was likely to have more risks than benefit. I was also advised to continue to have regular follow up to evaluated for the the two cancers I did not have. I then felt satisfied and happy with this info. I figured out the key to getting the right answer is to ask the right question to the right person at the right time. Sometimes you need to find a person who is more knowledgeable with more skill and/or one who is more motivated to work a little harder for you. This can be a real challenge in today's health care environment but the right person will enjoy the challenge your symptoms present and rise to the occasion.

[Dirty Don]

I may have suggested this in one form or another on here, not sure. Let's put together a 'symptoms' list w/descriptors/explanations on here. Compile, edit, and post, first of all, on this site as a direct link for all others to access. Then, if it seems to work, send it out to as many clinics/docs as we can recommend/access/find. Just an idea...it seems many times the first question a new and scared Weggie has is 'what the hell is going on?' If there was something compiled on here from our 'experiential' standpoints, maybe that could help somewhat. I find all the 'bookish' explanations are, while accurate, without heart and personal attachments...just a thought.

[pberggren1]

I think this is a good idea Don. Even though doctors try to remain objective most get emotionally involved with their patients. That is just the human way. I think the BVAS is a good way to figure out if you have a Vasculitide though.

[Sangye]

Al, enjoy your vacation! Those books sound interesting, especially "Zoobiquity." I'm hoping my library has it on Kindle.

[Al]

Al, enjoy your vacation! Those books sound interesting, especially "Zoobiquity." I'm hoping my library has it on Kindle.I'm back--deal with it, folks.

I've read all the books on my summer reading list. It will take some time to wade through all the posts since I left (along with coming to terms with Reality), but I will post a review when I can. Zoobiquity turned out indeed to be quite fascinating....

Al

[annekat]

I'm back--deal with it, folks.

I've read all the books on my summer reading list. It will take some time to wade through all the posts since I left (along with coming to terms with Reality), but I will post a review when I can. Zoobiquity turned out indeed to be quite fascinating....

Al I'm glad you are back, Al! When you have time, we'd like to hear something about Bird Camp. BTW, we are now looking at puffin and osprey nests.

[Al]

I'm glad you are back, Al! When you have time, we'd like to hear something about Bird Camp. BTW, we are now looking at puffin and osprey nests.I will, Anne--as soon as I recover from vacating....

Al