Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 Hi Dave A belated welcome to the group Ive been a member for somewhere around 2 years and in some ways our symptoms are similar. If you actually get to see a real live nephrologist in the Uk youve done well, LA has more than UK!! In general the UK seem more reluctant to act at the low levels of igan than our cousins across the pond. A good example is protienuria, my levels are usually above 1 but below 2 with haematuria that is always 4+, SCr that is trickling along in raised but not drastic you get the picture! Never a mention about medication for me. To inspire confidence check your consultant on the web at least youll know what theyre good at and the one big advice that I would give is if youre not happy ask for a 2nd opinion or third or fourth until you get one you can trust because believe me this is the most wonderful, supportive ,informative,funny,sad macrocosm of humanity but it aint gonna stick needles in you ;-) By the way Im in Southampton UK ps Connie you should know by now that Im in the Matrix waiting for you to answer a numbers question lol Results - > Well, I had hoped to post the numbers but I don't have them as GP had > attached them to a letter to Nephrologist that was sent for typing so > he didn't have exact numbers to hand but I'll see them in a day or > two with the letter. > > Anyway, apparently, the results show serum creatinine and creatinine > clearance well within the normal range which is good. Proteinuria was > slightly elevated above the normal range (but I won't know the number > for a few days!! grrrr)but apparently only slightly which is to be > exepected (?) > > BP was 140/80 So he's basically suggesting that unless Nephrologist > replies something differently then we just continue to monitor 6 > monthly bloods etc and more regularly for hypertension but no Meds > are needed at the moment. Views? > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 Hi Thanks for the welcome! Certainly seems to me that there's a more proactive treatment regime over there than here and a better knowledge. The previous Senior Nephrologist up here retired a few years back and he used to be a highly respected physician who was well known nationally - I simply know from work but don't know very much but about his replacement to be honest - where do I find anything out on the web? I have contacts at work who think she is extremely good but my feeling over here is the renal services are highly geared to the high need area which is to be expected but I'm not sure there's enough focus on the management of the early stages of chronic disease - I suppose that can be the same for all chronic diseases :o/ I read your other reply about emigrating, etc - what's your experience of anything of insurance - life, travel, etc - since you were diagnosed? Thanks for the welcome again Dave Dave -UK Hi Dave A belated welcome to the group Ive been a member for somewhere around 2 years and in some ways our symptoms are similar. If you actually get to see a real live nephrologist in the Uk youve done well, LA has more than UK!! In general the UK seem more reluctant to act at the low levels of igan than our cousins across the pond. A good example is protienuria, my levels are usually above 1 but below 2 with haematuria that is always 4+, SCr that is trickling along in raised but not drastic you get the picture! Never a mention about medication for me. To inspire confidence check your consultant on the web at least youll know what theyre good at and the one big advice that I would give is if youre not happy ask for a 2nd opinion or third or fourth until you get one you can trust because believe me this is the most wonderful, supportive ,informative,funny,sad macrocosm of humanity but it aint gonna stick needles in you ;-) By the way Im in Southampton UK ps Connie you should know by now that Im in the Matrix waiting for you to answer a numbers question lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 Hey , You are lucky you got life insurance before diagnosis. A word to the wise, if any of you can get medical/life/disability insurance, get it and hang onto it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 Hi Dave The easy answer is that they all go up it doesnt matter whether youre on medication or not, luckily I took out a new life insurance before diagnosis and Im now going to be with them indefinitely! It seems that ouside of the major hospitals in the UK the consultant you see is a general medicine specialist who has an interest in nephrology as mine does, I had infinitely more faith in the second one I saw (having said to my GP that the 1st one was an idiot!) after she gave the same answers to questions that Pierre had given me lol! As for the web I would simply put their name into google and see what comes out, being in the health profession you might like to try www.specialistinfo.com you have to register now (it used to be open) and have a good excuse but your consultant will be on there. Where abouts are you in the uk, I know you did say but Ive forgotten? all the best W uk Dave -UK > > > Hi Dave > A belated welcome to the group Ive been a member for somewhere around 2 > years and in some ways our symptoms are similar. If you actually get to see > a real live nephrologist in the Uk youve done well, LA has more than UK!! In > general the UK seem more reluctant to act at the low levels of igan than our > cousins across the pond. A good example is protienuria, my levels are > usually above 1 but below 2 with haematuria that is always 4+, SCr that is > trickling along in raised but not drastic you get the picture! Never a > mention about medication for me. To inspire confidence check your consultant > on the web at least youll know what theyre good at and the one big advice > that I would give is if youre not happy ask for a 2nd opinion or third or > fourth until you get one you can trust because believe me this is the most > wonderful, supportive ,informative,funny,sad macrocosm of humanity but it > aint gonna stick needles in you ;-) > By the way Im in Southampton > UK > ps Connie you should know by now that Im in the Matrix waiting for you to > answer a numbers question lol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2003 Report Share Posted December 24, 2003 Hiya - sorry it took a while! We def have a nephrologist here - just don't know when/if I see her. Waiting for my GP to get back in touch to see what next. Thing that worries me a little is that there is def a more treatment oriented regime in North America than over here - wait and see is ok for some things but to me, this disease is so specialised, a GP can only know so much - I mean we're a 10 minute appointment before the next client!!!! For example, GP and, apparently, Neph through letters, think that a biopsy is really not necessary because one kidney disease gets treated like the next, by and large. BUT there are some fairly benign diseases that have similar symptoms apparently. A medical friend suggests that I should push for a biopsy to make sure - otherwise all insurances are weighted - like you I did life a couple of years ago but I re-read my holiday insurance, booked in August, and I simply have to inform them of this or I am in trouble if I have any problems next July in Mexico!!!!! Ho hum and baa humbug ) Dave Dave -UK > > > Hi Dave > A belated welcome to the group Ive been a member for somewhere around 2 > years and in some ways our symptoms are similar. If you actually get to see > a real live nephrologist in the Uk youve done well, LA has more than UK!! In > general the UK seem more reluctant to act at the low levels of igan than our > cousins across the pond. A good example is protienuria, my levels are > usually above 1 but below 2 with haematuria that is always 4+, SCr that is > trickling along in raised but not drastic you get the picture! Never a > mention about medication for me. To inspire confidence check your consultant > on the web at least youll know what theyre good at and the one big advice > that I would give is if youre not happy ask for a 2nd opinion or third or > fourth until you get one you can trust because believe me this is the most > wonderful, supportive ,informative,funny,sad macrocosm of humanity but it > aint gonna stick needles in you ;-) > By the way Im in Southampton > UK > ps Connie you should know by now that Im in the Matrix waiting for you to > answer a numbers question lol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2003 Report Share Posted December 25, 2003 Hi Helen - nice to meet you ) Yeah it's a bit scary - you're a bit ahead of me -following a nasty viral infection, I had gross haematuria back in Jan or Feb this year followed by a range of tests which were basically eliminating cancer - micro haematuria persists and does proteinuria but creatinine levels are normal at present - I'm suspected IgAN all the symptoms but no plans for a biopsy yet - although I'm going to discuss this with my GP in new year. Early days for me and HOPEFULLY a long time before I have any serious problem .... *crosses legs and fingers* Re: Dave -UK - Inverness Hi Dave and - I'm Helen and from the Wirral, so hi to you. In case you haven't read earlier posts, I've just joined. I'm 28 with 2 v. young children and am awaiting biopsy for confirmation of IgAN. Nephrologist has already told me he thinks it is, and surely if it wasn't he wouldn't have decided to tell me anyway before knowing for sure and ruin Christmas? (I found out just over a week ago!) So whereabouts are you both in the process, then? I've had a hard time getting my head round it, I can tell you. Talk to you soon, Helen ---------- Outgoing mail is certified Virus Free. Checked by AVG Anti-Virus (http://www.grisoft.com). Version: 7.0.209 / Virus Database: 261.5.3 - Release Date: 23/12/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2003 Report Share Posted December 25, 2003 Hi Dave, One suggestion for you, if you can get insurance before you have a biopsy, it may be your last chance! After you have the official diagnosis, it is next to impossible to get insurance then. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2003 Report Share Posted December 25, 2003 I am so glad you said that one, ! I weighed the merits of sounding off, but figured in the UK it might be different. However, this is one thing you can't be too careful about. These people don't make exceptions! Cy Re: Dave -UK > Hi Dave, > > One suggestion for you, if you can get insurance before you have a biopsy, it > may be your last chance! After you have the official diagnosis, it is next > to impossible to get insurance then. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 you are spot on, all my health insurance, holiday insurances, and such like, were voided once we informed them of my diagnosis. I think I would have hard job to insure my big toe now, it just aint gonna happen. Dave good advice, get your insurances in order as soon as possible, or be prepared for refusals or ridiculously high premiums. Best wishes Re: Dave -UK Hi Dave, One suggestion for you, if you can get insurance before you have a biopsy, it may be your last chance! After you have the official diagnosis, it is next to impossible to get insurance then. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 you are spot on, all my health insurance, holiday insurances, and such like, were voided once we informed them of my diagnosis. I think I would have hard job to insure my big toe now, it just aint gonna happen. Dave good advice, get your insurances in order as soon as possible, or be prepared for refusals or ridiculously high premiums. Best wishes Re: Dave -UK Hi Dave, One suggestion for you, if you can get insurance before you have a biopsy, it may be your last chance! After you have the official diagnosis, it is next to impossible to get insurance then. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Thanks . I have relatively good life insurance already - what's worrying me a little is things like Holiday insurance and if I ever decide to move house, I'll have to tie that into my existing life policies. For travel insurance, I've already checked the policy for next summer holiday and know I have to get in touch with them - they have a stream of get out clauses - I love to travel abroad for my summer break but certainly don't fancy the prospect of having my insurance voided id I need any treatment in Mexico next summer - I expect I'll have to shop around and see what I can get! Re: Dave -UK Hi Dave, One suggestion for you, if you can get insurance before you have a biopsy, it may be your last chance! After you have the official diagnosis, it is next to impossible to get insurance then. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Luckily I sorted out major insurance some time ago - but the UK is the same - Insurance companies try their hardest to avoid payouts! Re: Dave -UK I am so glad you said that one, ! I weighed the merits of sounding off, but figured in the UK it might be different. However, this is one thing you can't be too careful about. These people don't make exceptions! Cy ---------- Outgoing mail is certified Virus Free. Checked by AVG Anti-Virus (http://www.grisoft.com). Version: 7.0.209 / Virus Database: 261.5.3 - Release Date: 23/12/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Thanks , have you had problems getting travel insurance too then? How can they just cancel your health policy like that? :o/ D RE: Dave -UK you are spot on, all my health insurance, holiday insurances, and such like, were voided once we informed them of my diagnosis. I think I would have hard job to insure my big toe now, it just aint gonna happen. Dave good advice, get your insurances in order as soon as possible, or be prepared for refusals or ridiculously high premiums. Best wishes ---------- Outgoing mail is certified Virus Free. Checked by AVG Anti-Virus (http://www.grisoft.com). Version: 7.0.209 / Virus Database: 261.5.3 - Release Date: 23/12/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 I have no idea why my email appeared all gobbeldy-gook although some might argue that all my emails do!!! ) Apologise Re: Dave -UK Luckily I sorted out major insurance some time ago - but the UK is the same - Insurance companies try their hardest to avoid payouts!<BR> -- Outgoing mail is certified Virus Free. Checked by AVG Anti-Virus (http://www.grisoft.com). Version: 7.0.209 / Virus Database: 261.5.3 - Release Date: 23/12/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Hi Dave Quite easily it would seem. They agreed to insure me for a daft amount per month, with several exclusions, which to be frank would not have left much else to insure save for cancer cover, which if I had, would be dealt with swiftly on the NHS. They decided in their infinite wisdom that my bladder problems could be connected to my IGAN, so exclusion for that, and my spinal problem they felt was a pre-existing condition that I failed to declare!!! Despite strenuous efforts by my GP to put them straight they still refused to cover, so I gave up and let it lapse. Travel Insurance is a nightmare, I have to go to a specialist company now and the cover is nearly as much as the holiday! But if you don't declare it, then fall ill, one could be in a big mess, whatever way you look at they have you by the short and curlies! Re: Dave -UK Thanks , have you had problems getting travel insurance too then? How can they just cancel your health policy like that? :o/ D RE: Dave -UK you are spot on, all my health insurance, holiday insurances, and such like, were voided once we informed them of my diagnosis. I think I would have hard job to insure my big toe now, it just aint gonna happen. Dave good advice, get your insurances in order as soon as possible, or be prepared for refusals or ridiculously high premiums. Best wishes ---------- Outgoing mail is certified Virus Free. Checked by AVG Anti-Virus (http://www.grisoft.com). Version: 7.0.209 / Virus Database: 261.5.3 - Release Date: 23/12/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Hi Dave Quite easily it would seem. They agreed to insure me for a daft amount per month, with several exclusions, which to be frank would not have left much else to insure save for cancer cover, which if I had, would be dealt with swiftly on the NHS. They decided in their infinite wisdom that my bladder problems could be connected to my IGAN, so exclusion for that, and my spinal problem they felt was a pre-existing condition that I failed to declare!!! Despite strenuous efforts by my GP to put them straight they still refused to cover, so I gave up and let it lapse. Travel Insurance is a nightmare, I have to go to a specialist company now and the cover is nearly as much as the holiday! But if you don't declare it, then fall ill, one could be in a big mess, whatever way you look at they have you by the short and curlies! Re: Dave -UK Thanks , have you had problems getting travel insurance too then? How can they just cancel your health policy like that? :o/ D RE: Dave -UK you are spot on, all my health insurance, holiday insurances, and such like, were voided once we informed them of my diagnosis. I think I would have hard job to insure my big toe now, it just aint gonna happen. Dave good advice, get your insurances in order as soon as possible, or be prepared for refusals or ridiculously high premiums. Best wishes ---------- Outgoing mail is certified Virus Free. Checked by AVG Anti-Virus (http://www.grisoft.com). Version: 7.0.209 / Virus Database: 261.5.3 - Release Date: 23/12/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Hi , Oh, did you apply for health insurance after you were diagnosed then? I guess that was always going to be problematic? What company do you go through for holiday insurance? I'm dreading ringing mine, it has the dreaded, you have to tell us about any medical condition and if you were under consultant in last 12 months and if you have hypertension and and and!!! :o/ I did find this http://www.kidney.org.uk/holidays/insure.html that I will look into ) Dave RE: Dave -UK Hi Dave Quite easily it would seem. They agreed to insure me for a daft amount per month, with several exclusions, which to be frank would not have left much else to insure save for cancer cover, which if I had, would be dealt with swiftly on the NHS. They decided in their infinite wisdom that my bladder problems could be connected to my IGAN, so exclusion for that, and my spinal problem they felt was a pre-existing condition that I failed to declare!!! Despite strenuous efforts by my GP to put them straight they still refused to cover, so I gave up and let it lapse. Travel Insurance is a nightmare, I have to go to a specialist company now and the cover is nearly as much as the holiday! But if you don't declare it, then fall ill, one could be in a big mess, whatever way you look at they have you by the short and curlies! ---------- Outgoing mail is certified Virus Free. Checked by AVG Anti-Virus (http://www.grisoft.com). Version: 7.0.209 / Virus Database: 261.5.4 - Release Date: 26/12/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Hi Dave dont worry about delays I only get mine once a week anyway! From what youve said there are simularities between us so perhaps my biopsy story is relevant. I went to the quack for a works medical all went fine til he did a urine test just as an after thought and it showed high blood and protien probably nothing he said but referred me just in case. Went on holiday for a fortnight and returned to a consultants appointment two weeks later saw him he said dont know whats up need a biopsy probably 2 or 3 weeks time 2days later another quack was sticking a large needle in. My PERSONAL opinion is push for the biopsy at least its an extra piece of knowledge and when you read about crescents and scarring you know that at least when you had it you did or didnt have them and your kidney doesnt look like emmenthal! All the best w uk Happy Hogmanay Dave -UK > > > > > > Hi Dave > > A belated welcome to the group Ive been a member for somewhere around 2 > > years and in some ways our symptoms are similar. If you actually get to > see > > a real live nephrologist in the Uk youve done well, LA has more than > UK!! In > > general the UK seem more reluctant to act at the low levels of igan than > our > > cousins across the pond. A good example is protienuria, my levels are > > usually above 1 but below 2 with haematuria that is always 4+, SCr that > is > > trickling along in raised but not drastic you get the picture! Never a > > mention about medication for me. To inspire confidence check your > consultant > > on the web at least youll know what theyre good at and the one big > advice > > that I would give is if youre not happy ask for a 2nd opinion or third > or > > fourth until you get one you can trust because believe me this is the > most > > wonderful, supportive ,informative,funny,sad macrocosm of humanity but > it > > aint gonna stick needles in you ;-) > > By the way Im in Southampton > > UK > > ps Connie you should know by now that Im in the Matrix waiting for you > to > > answer a numbers question lol > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Dave, I don't think that insurances like travel insurance asks you about health issures. It may, but I don't think so. At least the insurance that insures the trip itself. I don't know about travel health. I just use my own health insurance when I travel. Re: Dave -UK Hi Dave, One suggestion for you, if you can get insurance before you have a biopsy, it may be your last chance! After you have the official diagnosis, it is next to impossible to get insurance then. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 Hi , Yeah I think I just might push for the biopsy - saying that, I think first thing I need is a nephrologist!!!!!!! Ho hum! Happy Hogmanay to you too - in a moment of weakness, we agreed to have my newest nephew for the night so ours will be a quiet one!!! Dave Dave -UK > > > > > > Hi Dave > > A belated welcome to the group Ive been a member for somewhere around 2 > > years and in some ways our symptoms are similar. If you actually get to > see > > a real live nephrologist in the Uk youve done well, LA has more than > UK!! In > > general the UK seem more reluctant to act at the low levels of igan than > our > > cousins across the pond. A good example is protienuria, my levels are > > usually above 1 but below 2 with haematuria that is always 4+, SCr that > is > > trickling along in raised but not drastic you get the picture! Never a > > mention about medication for me. To inspire confidence check your > consultant > > on the web at least youll know what theyre good at and the one big > advice > > that I would give is if youre not happy ask for a 2nd opinion or third > or > > fourth until you get one you can trust because believe me this is the > most > > wonderful, supportive ,informative,funny,sad macrocosm of humanity but > it > > aint gonna stick needles in you ;-) > > By the way Im in Southampton > > UK > > ps Connie you should know by now that Im in the Matrix waiting for you > to > > answer a numbers question lol > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 Hello , Things are a little different in the UK - by and large, most people do not have health insurance - we have a free healthcare system (and judging by some of the posts about affording drugs, I'm so very glad!!) - healthcare is also by and large available to us free in other European Union countries and one or two others have reciprocal arrangements. But generally, if we are going abroad we have travel insurance that includes healthcare and in 2004, I'm heading across the big pond the Cancun in Mexico so I need insurance! Dave Re: Dave -UK Hi Dave, One suggestion for you, if you can get insurance before you have a biopsy, it may be your last chance! After you have the official diagnosis, it is next to impossible to get insurance then. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 OOOOOOh yea, I forgot about the UK and Canada having universal health care. Insurance can be hard to get for a trip. Ow that is bad. Re: Dave -UK Hi Dave, One suggestion for you, if you can get insurance before you have a biopsy, it may be your last chance! After you have the official diagnosis, it is next to impossible to get insurance then. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 Yeah it's great in many ways but has real downsides too - waiting times are pretty horrific although they are improving! Oh I'm sure I'll manage to get some, they'll probably just charge me an arm and a leg .... hmmm wonder if they'd take a kidney instead? ) Re: Dave -UK Hi Dave, One suggestion for you, if you can get insurance before you have a biopsy, it may be your last chance! After you have the official diagnosis, it is next to impossible to get insurance then. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 , I really hope you have no ish blood ) Hogmanay is simply the Scot's New Years Eve - it used to be celebrated in style in Scotland - I guess it goes back to days gone bye - when money was tight and new year was the time people could afford whisky and fun - now, in my opinion, it's hogmanay every friday and saturday night but I'm a bah humbug lol Have a look here http://www.macalpineclan.com/sys-tmpl/jan2002/ Dave Re: Dave -UK OK My curiosity has gotten the better of me Dave. In case no one else has asked, exactly what Happy Hogmanay? ---------- Outgoing mail is certified Virus Free. Checked by AVG Anti-Virus (http://www.grisoft.com). Version: 7.0.209 / Virus Database: 261.5.5 - Release Date: 30/12/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Dave this page made my afternoon! I particularly like the music links! Cy Re: Dave -UK > > > OK My curiosity has gotten the better of me Dave. In > case no one else has asked, exactly what Happy > Hogmanay? > > > > > > ---------- > > Outgoing mail is certified Virus Free. > Checked by AVG Anti-Virus (http://www.grisoft.com). > Version: 7.0.209 / Virus Database: 261.5.5 - Release Date: 30/12/2003 > > > Quote Link to comment Share on other sites More sharing options...
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