RE: My update

[Guest guest]

Hi Jennie

Thanks for your update, your history and current status sounds very

similar to me. I shouldn't beat yourself up too much about worrying

when visiting your Neph, we are probably all the same, its an

anticipation thing really. I know when I last saw mine, I was

disappointed with my lab results, and was even more disappointed when

the talk of medication was mentioned, given that only 3 months

previously, I had been given a glowing report, and told that it seemed I

had gone into remission. However at the time I was fighting pleurisy,

and a chest infection, but since that has been cleared up, I feel much

better.

My bloodtest and urine test from 4 weeks ago, now show everything is

back to normal, well as normal as can be expected for me. It seems that

if I get sick, my tests reflect that. Next scheduled appointment for me

to see my Neph is now May 2002, unless I get ill again, in which case he

wants to see me immediately.

My philosophy now is to take each day as it comes, which is about all we

can do really isn't it.

Great to hear your good news, so now go off and have a wonderful

Christmas and New Year.

Best wishes

My update

I went and saw my neph this morning, and everything appears to be

stable at this stage, which is a big relief. My creatinine was 73

(0.8 mg/dl), which was up slightly from my last visit 4 months ago

(it was 61, or 0.7 mg/dl), but is the same as the visit before that.

My neph said that my other results were also stable and still quite

normal, which is a big load off my mind. I don't have to see him

again for another 12 months, and he said that I can have my next 2 4-

monthly checkups with my regular GP, as he's not expecting any

problems between now and the next time I see him. Sorry to rattle on

like that, but it's just that I'd been really worried about seeing my

neph before the appointment, and it turned out that there was

actually nothing to worry about. My neph said he was actually quite

happy with how I was going, which I was pleased to hear.

[Guest guest]

Great news for you! You know, that's about where I was almost 25 years ago,

so you have plenty of time. I think the reason I'm even approaching dialysis

now is because I had such poor blood pressure control for so long, and

frankly, didn't care very much about it at the time. So, be happy and don't

worry about it. Just make sure your regular GP checks your blood pressure at

those regular 4 month intervals. This is what I didn't do for 10 years after

first diagnosis (until a hypertensive emergency finally made me aware of

it!).

Pierre

PS Whenever anybody else gets an update, good or not so good, don't hesitate

to share it with the group.

My update

> I went and saw my neph this morning, and everything appears to be

> stable at this stage, which is a big relief. My creatinine was 73

> (0.8 mg/dl), which was up slightly from my last visit 4 months ago

> (it was 61, or 0.7 mg/dl), but is the same as the visit before that.

> My neph said that my other results were also stable and still quite

> normal, which is a big load off my mind. I don't have to see him

> again for another 12 months, and he said that I can have my next 2 4-

> monthly checkups with my regular GP, as he's not expecting any

> problems between now and the next time I see him. Sorry to rattle on

> like that, but it's just that I'd been really worried about seeing my

> neph before the appointment, and it turned out that there was

> actually nothing to worry about. My neph said he was actually quite

> happy with how I was going, which I was pleased to hear.

>

>

>

>

[Guest guest]

I guess I'm lucky as far as BP goes, as I have it fairly well under

control. I'm on Enalapril, 10mg a day, and my BP ranges from 120/80

to 135/90, although my BP reading is most often 130/85. I was on only

5mg of Enalapril for ages, but when I was put onto prednisone earlier

on in the year, it put my BP up to 160/100, and it stayed there even

once I was off the prednisone, so that's why the dose was increased.

But thankfully, the dose increase put my BP under control. That's the

trouble with longstanding uncontrolled hypertension, unfortunately -

it can lead to renal failure, I saw plenty of cases of it when I did

my last lot of work experience for my course on a renal ward. What is

your BP like at the moment?

> Great news for you! You know, that's about where I was almost 25

years ago,

> so you have plenty of time. I think the reason I'm even approaching

dialysis

> now is because I had such poor blood pressure control for so long,

and

> frankly, didn't care very much about it at the time. So, be happy

and don't

> worry about it. Just make sure your regular GP checks your blood

pressure at

> those regular 4 month intervals. This is what I didn't do for 10

years after

> first diagnosis (until a hypertensive emergency finally made me

aware of

> it!).

> Pierre

> PS Whenever anybody else gets an update, good or not so good, don't

hesitate

> to share it with the group.

>

> My update

>

>

> > I went and saw my neph this morning, and everything appears to be

> > stable at this stage, which is a big relief. My creatinine was 73

> > (0.8 mg/dl), which was up slightly from my last visit 4 months ago

> > (it was 61, or 0.7 mg/dl), but is the same as the visit before

that.

> > My neph said that my other results were also stable and still

quite

> > normal, which is a big load off my mind. I don't have to see him

> > again for another 12 months, and he said that I can have my next

2 4-

> > monthly checkups with my regular GP, as he's not expecting any

> > problems between now and the next time I see him. Sorry to rattle

on

> > like that, but it's just that I'd been really worried about

seeing my

> > neph before the appointment, and it turned out that there was

> > actually nothing to worry about. My neph said he was actually

quite

> > happy with how I was going, which I was pleased to hear.

> >

> >

> >

> >

[Guest guest]

It seems like you can't win with that blood pressure of yours. I too

have the essential hypertension (it was picked up that I had it when

I was 17 - long before the IgAN came along), but I guess I'm lucky

that mine is responsive to medication. Mine tends to run on my

father's side of the family, and my father was 18 when his was picked

up, so I guess that's where I got mine from. Both my GP and my neph

tend to watch my BP like a hawk, so I don't think I could get away

with not having regular checkups. Some information I read on

hypertension stated that these days, doctors tend to treat

hypertension more aggressively in a young person than what they would

in an older person, so it's a shame that that wasn't done when you

were younger - it might have meant you had more time before you did

reach this pre-ESRF point.

>

> Re: My update

>

>

> > I guess I'm lucky as far as BP goes, as I have it fairly well

under

> > control. I'm on Enalapril, 10mg a day, and my BP ranges from

120/80

> > to 135/90, although my BP reading is most often 130/85. I was on

only

> > 5mg of Enalapril for ages, but when I was put onto prednisone

earlier

> > on in the year, it put my BP up to 160/100, and it stayed there

even

> > once I was off the prednisone, so that's why the dose was

increased.

> > But thankfully, the dose increase put my BP under control. That's

the

> > trouble with longstanding uncontrolled hypertension,

unfortunately -

> > it can lead to renal failure, I saw plenty of cases of it when I

did

> > my last lot of work experience for my course on a renal ward.

What is

> > your BP like at the moment?

> >

> >

>

> It seems to range from 130/80 to 160/100 (resting) at the moment.

It was

> pretty good while I was on furosemide in addition to irbesartan and

> felodipine, but I've been told to stay off the furosemide for the

time

> being, to see if this pancreatitis problem I have will clear up.

It's not

> for lack of trying though. Proven allergic to ACE inhibitors, asthma

> problems with beta blockers, and overall not very responsive to BP

meds. For

> years, my doctors assumed I was non-compliant with the meds, which

wasn't

> the case. I seem to be one of those people who have both very

labile and

> very hard-to-control hypertension, no matter what I take. Low

sodium diet

> helps, but it's not consistent. I think it's due to the combination

of the

> kidney disease with an extensive family history of essential

hypertension. I

> suspect I would have the hypertension even without the IgAN, only

maybe not

> quite as bad. The period I refer to when I say I wasn't paying much

> attention to it is mostly throughout the 1980's, when I didn't get

regular

> checkups, and into the early 90's. Since them, I've had too many

> hypertensive emergencies to count. This is how my army career

ended. 230/130

> at the time.

> Pierre

[Guest guest]

Pierre, what is the normal range for Creatinin in UK terms?

Jeanie

[Guest guest]

- you and I were similar because I had the bout of pleurisy in the

summer as well but its taken over 5 months for my creatinin and protein to

come down from 184 to 134 and protein to under 1gm now, but I am thankful

that it has because when I say my neph in August, he indicated that my

disease was progressing with my Kidney function slightlyn worse.

Jeanie

[Guest guest]

I think you guys use the same as we do in Canada. If so, it would be 60-125

umol/Litre.

Pierre

Re: My update

> Pierre, what is the normal range for Creatinin in UK terms?

>

> Jeanie

>

>

>