Web Archive

Earlier this month, I had my recheck for my pressure.
My visual fields were unchanged from 6 months before:
in fact in the left eye, which is the better and only has
very small visual field defect that is unnoticeable to me,
she said it had improved slightly (probably a learning curve
effect).
I had been taking Travatan in both eyes and Alphagan P
in the right (worse) eye. She tested my pressures, and they
were 14 in the left eye (the one without the Alphagan,
and 10 in the right eye. So she asked me to start
taking Alphagan in the left eye too. I take it twice a day.
She wants the pressure in the left eye lower than 14: even though the damage in
that eye is so minimal.
She asked to see me again in February.
This sounds really good, and takes a lot of worry off my mind.
Laurie

Am thinking of relocating - be interested in speaking with anyone who has a helpful nephrologist in central Texas.

Thank you,

~Haley

Great link, Sherry, we certainly have to 'watch out' don't we?
Joyce

Hello Kyle and group
As you know I have been on dialysis for
approximately one year. 3 1/2 hours three times per
week. My problem is restless leg syndrome getting
worse. Was on miraprex and now on Requip.
Low dosage 25 mg because it builds up in our
sysptem? Very difficult to sit through dialysis and
at the comptuer.
Thank you in advance for any information that
you can provide.
Best wishes to all Trena
Hello Kyle and others in group

I did allow this one to go through although there is much questionable info
on this website - I glanced at some of the glaucoma articles and he has
unproven information there (ref back to the articles that Dr. Ritch posted
regarding studies on vitamins, supplements and glaucoma)
Of course, we should all know that any health care is not going to
*guarantee* good health! I would disagree with the statement that American
medicine does more harm than good. It could certainly look like that if you
look only at the negative statistics. I used to work in a nursing home. We
had a very high death rate there. Sounds ominous, doesn't it? However, we
need to remember that the patients who were admitted there were at their end
of life and no amount of medical care could have kept them going much
longer!
I had a lot of questions when reading the excerpt:
Re the pharmacy database - how long of a time period was this? What
percentage of the number of drugs dispensed were dispensed in error?
How is "unnecessary surgery" defined? How many of those were elective
surgeries such as cosmetic surgery? What was the cause of death? Was it
actually related to the surgery or for other reasons?
What meds caused the deaths? Were they from an allergic reaction to the
drug? Was it from unintentional or intentional overdose? Was it from a
combination of possibly alcohol and the drug?
And how many people have been harmed by supplements? Quite a few, actually.
Too many unanswered questions from this article and his website!
http://skepdic.com/althelth.html has a lot of things to watch out for.
Sherry

Joyce,
Great link! All sites have something to sell, even if it's in banner ads.
I did take one of the health quizzes and didn't see a "buy our supplements"
push at the end of the quiz and the recommendations seemed pretty good.
Nothing on glaucoma, however.
Sherry

Kim, here is another link. This is a very good reference because it not only calculates your GFR, tells you what stage of Kidney disease you are in, but, also, a clinical action plan recommended by the National Kidney Foundation for the listed stage. It is a good check list to see that your docs are doing everything recommended by that organization.
If you already know your GFR, go to this site: http://www.kidney.org/professionals/kdoqi/cap/index.html
If you need to calculate your GFR go to this site: http://www.kidney.org/professionals/KDOQI/gfr.cfm
after the GFR is calculated, click on the link "Click here to create a CKD clinical action plan for your patient" at the bottom of the page.
hugs
JeanneC

[INLINE] Chronic disease is a team sport. You are the quarterback, not your doctor. [INLINE]
[INLINE] No one will take care of you better than you, yourself. [INLINE]

There are too many variables for there to be a set rate of decline. Age, other health factors, blood pressure, diet and of course the genetic form of PKD play a role. My daughter was diagnosed two years ago and she was just over 20%. She had dropped to 6% just a couple of months ago and is now doing peritoneal dialysis.

When diagnosed the doctor told me she could maintain her degree of function for many years, or in six months be in need of dialysis; there just is no way to predict it. My daughter inherited the most aggressive gene. She goes for transplant evaluation at UAB (Univ. of Alabama-Birmingham) in December. Is there anyone else on this group who is working through UAB?

Michelle G.

I don't know whether you will allow this Sherry, as it is a site which
also sells.
However I thought this chart was interesting.... click on each vitamin
or mineral and up comes a list of foods with the amounts contained,
plus recipe ideas.
http://www.realage.com/racafe/vitnut.aspx
Joyce

Orthodox and alternative medicine can both have good and bad reports....
Dangers of orthodox medicine
Excerpts from http://www.mercola.com/2004/apr/3/death_by_medicine.htm )
Natural medicine has come under attack as pharmaceutical company
lobbyists push lawmakers to deprive Americans of the benefits of
dietary supplements. Drug-front groups have implemented slanderous
campaigns in attempts to undermine the value of natural health
lifestyles. These attacks to natural medicine prompted an independent
review of government-approved medicine, which revealed that
conventional medicine was the leading cause of death in the United
States. Now, that's worth repeating:" conventional medicine was the
leading cause of death in the United States"!
This review of government health statistics showed that in most cases,
American medicine does more harm than good. Compelling evidence from
this study unveiled astounding statistics on the 783,936 deaths per
year that have resulted from conventional medicine.
Highlights from the findings in the review:
· U.S. health care spending has reached $1.6 trillion in 2003, which
represents 14 percent of the nation's gross national product.
· In a 1992 survey, a national pharmacy database found a total of
429,827 medication errors from 1,081 hospitals.
· In 1974, 2.4 million unnecessary surgeries were performed that
resulted in 11,900 deaths compared to the year 2001, where 7.5 million
unnecessary surgeries were performed resulting in 37,136 deaths.
· A 1998 study reported an estimated 106,000 deaths from prescription
medications per year.
· Nearly 9 million people were unnecessarily hospitalized in 2001.

Survey of Ophthalmology
Volume 46, Issue 1, Pages 43-55 (July 2001)
Complementary and Alternative Medicine for Glaucoma
Douglas J. Rhee MD, L. Jay Katz MD, George L. Spaeth MD and Jonathan S.
Myers MD
Abstract
Given the recent interest in complementary and alternative medicine (CAM),
some patients may seek such treatments to supplement their traditional
glaucoma management. The prevalence of CAM use for glaucoma is approximately
5%. We reviewed the literature to determine the potential benefit of various
alternative treatments. Aside from a temporary osmotic effect from high dose
intravenous ascorbic acid, there is no evidence that megavitamin
supplementation has a beneficial effect on glaucoma. During exercise,
autoregulation in healthy eyes seems to maintain a consistent blood flow
rate to the optic nerve despite fluctuations in intraocular pressure (IOP).
In a glaucomatous eye, the very modest IOP-lowering that follows exercise
may be offset by the initial elevation in IOP that occurs when one first
initiates exercise. At this time, there is no evidence to encourage or
discourage the use of special diets, acupuncture, relaxation techniques, or
therapeutic touch specifically for the treatment of glaucoma. Very little
research has been done on the majority of herbal remedies with regard to
their treatment of glaucoma. Marijuana can cause a profound lowering of IOP,
but the high nonresponse rate, short half life, and significant toxicity are
strong indicators that it is not an appropriate therapeutic agent. Ginkgo
biloba and some other Chinese herbal remedies do not affect IOP, but may
improve blood flow to the optic nerve and, as such, may have a beneficial
effect on glaucoma. These agents have recognized toxicities. Although there
are some well-designed studies of alternative treatments, many of the
recommendations for using alternative treatments are currently unsupported
by the data provided.

This newsletter was forwarded to me by Naomi and we thought it would be something you'd all be interested in seeing, maybe even subscribing to!

Enjoy!

Sherry

[INLINE]

Central Corneal Thickness Significantly
Impacts Glaucoma Treatment Management

Columbia University Medical Center has demonstrated the significance of central corneal thickness (CCT) on the clinical management of patients with glaucoma and those suspected to have glaucoma. While confirming previous research about the relevance of CCT in glaucoma management, this study represents one of the first attempts to determine exactly how great an impact CCT has on a patient's intraocular pressure (IOP), fluid build-up inside the eye that is a glaucoma risk factor. Results found that CCT affected more than half of the patients in the study.

While more research needs to be done to further determine the effects of CCT on clinical management and consequent long-term outcomes, it's clear that CCT should be considered when making glaucoma treatment decisions.

Glaucoma is a group of diseases that can damage the eye's optic nerve and result in vision loss and blindness. Similar to cholesterol readings for heart disease, measurements of a patient's IOP are a cornerstone of glaucoma treatment, with the clinical goal to get as low as possible to reduce the risk of long-term disease progression and vision loss.

However, if a patient also has an abnormal CCT, research has shown that the true IOP level may be masked, which may result in under-treatment or over-treatment of the glaucoma. Patients with thinner corneas tend to have underestimated IOPs (that is, their true IOP is higher than the measured value); whereas those with thicker corneas tend to have overestimated IOPs (that is, their true IOP is lower than the measured value).

The study was published in Archives of Ophthalmology.

Adapted from the following source: Columbia University Medical Center

Mayo Clinic Pioneers Gene
Therapy Delivery System For Glaucoma

Mayo Clinic researchers have demonstrated they can permanently transfer a functioning gene to targeted tissues within the eye. This success in animals is a first step in using gene therapy to treat glaucoma, a major cause of blindness worldwide. The research findings appear in the online issue of the leading vision science journal Investigative Ophthalmology and Visual Science.

Pressure build up within the eyeball due to malfunctioning fluid drainage in the front of the eye is one of the causes of glaucoma. Blindness occurs when pressure progressively damages the optic nerve at the back of the eye. Eye specialists have long hoped for a permanent way to fix the malfunctioning outflow--and they may now be a step closer because of the Mayo Clinic research.

"The main message here is that a specific kind of gene vector--a lentiviral vector--could be engineered to work really well as a delivery system to the particular tissue involved in glaucoma," says Eric Poeschla, M.D., a virologist in Mayo Clinic's Molecular Medicine program and the lead investigator on the project."

This work has at least three important implications for gene therapy for glaucoma:

1. Glaucoma is a chronic disease that now is treated with surgery and then daily eyedrops for the rest of the patient's life. This treatment does not prevent blindness in many cases. Glaucoma affects 70 million people worldwide, many over age 65. Any new therapies would be welcome advances if they were permanent and eliminated the daily eye drops. This study's one-year success record offers hope of a permanent transfer in humans.

2. The Mayo Clinic researchers are the first to show that a lentiviral vector can effectively deliver genetic cargo to this glaucoma-related target in the eye.

Says Dr. Poeschla, "The results meet three criteria that have represented a main hurdle: enough delivery to enough cells; targeted delivery to the relevant cells; and permanence.'' He emphasizes that the Mayo Clinic research is still in its early stages and that no human participants have been involved.

3. The approach may be well suited to carry a gene that can prevent blindness by fixing the defect in the eye's fluid outflow system. Several such potential therapeutic transferable genes are the subject of current research at Mayo but are not ready for human testing.

"Using eyedrops every day, lifelong, is very difficult for anyone, and there are many for whom the drops don't work, so the field as a whole recognizes that better treatments are needed to prevent blindness. That's why there's been a lot of interest in the concept of gene therapy as a way of permanently correcting the problem of this chronic disease,'' says Dr. Poeschla.

Adopted from the following source: Mayo Clinic

I went from 36.5% (May '00), when I started keeping track, to 14.5% in May
'06, just before I had a transplant. So, 6 years for a lesser range than you
are asking about (for me).
Mike

Kohler S, Funk P, Kieser M. Influence of a 7-day treatment with Ginkgo biloba special extract EGb 761 on bleeding time and coagulation: a randomized, placebo-controlled, double-blind study in healthy volunteers. Blood Coagul Fibrinolysis. 2004;15:303-9.
Clinical Research Department, Dr Willmar Schwabe Pharmaceuticals, 76227 Karlsruhe, Germany. stephan.koehler@schwabe.de
To investigate the influence of EGb 761 on hemostatic parameters. 50 healthy, male volunteers underwent 7 days of crossover treatment with 2 x 120 mg/day EGb 761 and placebo in randomized sequence. Between the two treatment phases, a washout-period of at least 3 weeks was inserted. The main outcome measures were bleeding time, coagulation parameters, platelet activity in response to various agonists and platelet morphology. The equivalence of the two treatments was analyzed by computing the 90% Fieller confidence intervals for the ratio between the means of the pre-post treatment differences for EGb 761 and placebo, respectively. Among the 29 coagulation and bleeding parameters assessed, none showed any evidence of an inhibition of blood coagulation and platelet aggregation through EGb 761. Furthermore, the study did not reveal any evidence to substantiate a causal relationship between the administration of EGb 761 and hemorrhagic complications. As regards treatment
tolerability, there were no interpretable differences between EGb 761 and placebo except for a slight increase of gastrointestinal complaints during administration of the herbal extract.
Robert Ritch, MD
Professor of Clinical Ophthalmology
Chief, Glaucoma Service
Surgeon Director
The New York Eye and Ear Infirmary
310 East 14th Street
New York, NY 10003
Medical Director and
Chairman, Scientific Advisory Board
The Glaucoma Foundation
Private (Executive Asst: Karen Cheifetz) - Tel: 212-673-5140
kcheifetz@nyee.edu
Patient Appointments - Tel: 212-477-7540
Fax: 212-420-8743
e-mail: ritchmd@earthlink.net
http://www.glaucoma.net
http://www.nyee.edu

Hi All,
I need to find out (for my own sanity) how long it takes to go from a
GFR of 40 to a GFR of 10. What has your experience been if this applies
to you. I know every one differs but I need to see the range.
Another member of my family is getting ready for dialysis- I know I am
next in line....not a pleasant prospect.
Keep well.
S

I have alot of health issues. Arthritis is a minor one for me. I have severe
disc disease and alot of other things. I just had trab surgery on the advice
of my glauc specialist. I wouldn't do that based on the opinion of a
opthamologist. Mine had a wrong diagnosis on my glaucoma. He told me it was
open angle and it's narrow. I found that out after I switched to a spec. I
wouldn't even consider an opthamologist in treatment of this disease. That's
what I say after several years of depending on one. I haven't had a bit of
trouble with infections. I'm 56. I did have some scarring in the first trab.
Some people heal very quickly. In my case, he kept a real close eye for a
month, lots of checkups. Then he let me go two weeks. I was only massaging
the eye twice a day. That wasn't enough to prevent scarring. I massage them
both four times a day now and that seems to be working. My pressures shoot
up and down some, but the damage to my optic nerves has stopped. I wouldn't
be afraid of infection. The possibility is very slim. Do be aware that
'younger' people can heal quickly. I started lightly massaging the left eye
about a week after surgery. My doc said the eye could deflate, but I was
determined to avoid scarring. I used a very light pressure. Doing this has
made the left bleb stay very diffuse. The right is working ok too, despite
scarring. The doc is kind of surprised at that. They said they see strange
things in their office. He was considering putting a tube in that eye, but
so far so good. I was told I can't take arthritis meds because they make the
body retain fluids. Joan

Mike, you sure talk good. :)

Seriously, you really are quite good at explaining things simply but thoroughly. Glad you're on our side. :)

Have a good weekend.

j
Mike Astley <mike.astley@...

I believe you're asking whether you can have PKD symptoms such as kidney pain or blood in the urine before your creatinine level starts to rise (indicating a drop in kidney function). The answer is yes. The reason is that there is *a lot* of extra capacity built into our kidneys and so you can have a good number of cysts (and kidney damage) and still show a normal level of kidney function per the creatinine blood test. Its the cysts that cause many of the PKD problems such as pain and/or bleeding. So if an "early" cyst begins to cause problems, you will have symptoms even though your creatinine shows as normal.

Heartburn can be a symptom of PKD as well, but usually a later one, when the kidneys have enlarged to the point of putting mechanical pressure on the stomach. So the heart burn and stomach cramping may or may not be related but the flank pain is suspicious.

Not the answers you wanted, I'm sure, but wish you the best.

Mike

I have Glaucoma and my doctor told me to stop Gingko immediately. May have a Trab and it is a blood thinner plus other issues. Elaine

I had the opportunity to wander the exhibit halls of the AAO conference
yesterday. What a joy to meet so many people there and learn so much
more about ophthalomogy and glaucoma! It would literally take *days* to
see all the exhibits in depth. We were there from just before noon
until 6 pm and only hit the highlights! We sat down and made a list of
the exhibits that were of most interest before we headed down the aisles
but kept running into other ones that looked interesting! I have plenty
of reading materials to bring home with me and lots of samples to try
out for dry-eye and one of eyelid scrubs!
Anyway, of course we stopped at the Bausch & Lomb site, the company that
makes the Proview tonometer and I brought up the issue of the tonometer
being unreliable per patient feedback. He said well yes and no. The
problem is seeing the phosphenes and determining *when* to quit with the
pressure and the consistency of quitting at the same time every time. (I
finally found out what the phosphene looks like!). It's very subjective
and the important thing, he said, is to make sure that you stop the
pressure at the ame "place" every time to be reliable. The reading will
vary if you stop at a partial circle or full circle. He said the
Proview shouldn't be used in comparison with the Goldmann and the
results need to be viewed as an overall swing of things and that it's
good to judge the diurnal curve of the pressures.
Shame that they can't come up with a device that's less subjective as
far as when you've got the right pressure on the device to get the most
accurate reading. Maybe a litte audible "ding" when the pressure is
right???
Sherry

Shanda, Just real quick as I only have a moment today but, I read "can...have pain before anything shows in blood work?" I believe the answer to that is yes. I can remember having pain when my creatinine was still on the low side of normal. Can be caused by many things. I'm sure others will share. Have to go for now. Hope you feel better. j
Shanda McCutcheon <shanda.mccutcheon@...

Hi Folks,
I have not posted a lot on this forum. My brother has PKD. My mom was a multi-organ and tissue donor when she passed away in November 2000. (Including both Kidneys). I have been reading the postings on pain....and I don't know whether to feel better or just see the doctor! Maybe you can provide me some insight. Since we have PKD in the family, I do my annual check ups including blood work and they look at my blood in terms of creatine??? My last check up was in June. I haven't had an ultrasound of my kidneys since 2003 though.
In late August I started getting heartburn all the time. Didn't matter what I ate. Thought this was odd...since I have just never been the person to get heartburn. By the beginning of Sept. it was stomach cramping (short in duration) always followed by ride side flank pain. We are now in the middle of October and the pain is more frequent and more severe. I think I've describe the pain location correctly...In my lower back (right) a touch to the side and extending down just above my hip.
Would it be common for pain to come before anything shows up in the blood? Every day I THINK about seeing the doctor. Every day....I THINK I cannot handle bad news. However, I know that I can't leave this alone and I am just wondering....what those actually suffering with PKD can tell me. I cannot talk to my brother about this since he is non-verbal developmentally disabled.
Thanks for any comments!
Shanda

One problem with all of this research and knowledge about MSG, chamomile, etc.,
is that: there is really no good way for people to check their eye pressure
outside the doctor's office. There is a home monitor, but apparently it is not
perfect.
When I had borderline high blood pressure I got a home pressure cuff and found
out in what circumstances it was higher (on work days especially when there was
a lot of deadline stress) so I could alter my behavior.
Everyone is different, so how are we supposed to alter our behavior if we can
only learn about our eye pressure as a one shot deal every few months at the
doctor's office?
I did find out that apparently stress is probably not a factor
or a very high factor in my eye pressure: because the day of my retinal tear
surgery (when I was TERRIFIED to the point where the week before, I had 3 minor
nosebleeds): my pressure tested out as quite low.
I hope that they are working hard on a home pressure meter.
Laurie

Hi Folks,

I have not posted a lot on this forum. My brother has PKD. My mom was a multi-organ and tissue donor when she passed away in November 2000. (Including both Kidneys). I have been reading the postings on pain....and I don't know whether to feel better or just see the doctor! Maybe you can provide me some insight. Since we have PKD in the family, I do my annual check ups including blood work and they look at my blood in terms of creatine??? My last check up was in June. I haven't had an ultrasound of my kidneys since 2003 though.

In late August I started getting heartburn all the time. Didn't matter what I ate. Thought this was odd...since I have just never been the person to get heartburn. By the beginning of Sept. it was stomach cramping (short in duration) always followed by ride side flank pain. We are now in the middle of October and the pain is more frequent and more severe. I think I've describe the pain location correctly...In my lower back (right) a touch to the side and extending down just above my hip.

Would it be common for pain to come before anything shows up in the blood? Every day I THINK about seeing the doctor. Every day....I THINK I cannot handle bad news. However, I know that I can't leave this alone and I am just wondering....what those actually suffering with PKD can tell me. I cannot talk to my brother about this since he is non-verbal developmentally disabled.

Thanks for any comments!

Shanda

I recently saw the article about chamomile and ginkgo. I was drinking
camomile tea every morning but have stopped it. I've been doing alot of
reading about glaucoma online myself. MSG, the common food additive, is also
bad for eye pressures. There is so much we can investigate online. We should
be doing comparative studies here, trying to find common threads in our
lives. Maybe we could discover something ourselves. One member wrote
yesterday about being on two drops and only being a suspect. I say if you're
on two drops you do have glaucoma. No one medicates without that diagnosis
and if they say you don't have it, they're stretching the truth, don't you
think? Joan W...a glaucoma sufferer since '92.

The procedure is painless. You will probably be sedated, semi conscious but not know what is going on. I had it done in April. Had to wear a patch for 2 days and to sleep at night with patch on. For about 10 days had to put a few drops in the eye, different than the regular ones. Anyhow did that several times a day. Had about 12 visits back to the Dr. in the following month to check pressure. The day after surgery then 2 more times that week to dr. then cut back to eventually once a week for a while.

Now I no longer need drops in that eye. It's great. All healed well

After the surgery you can not bend even to tie shoes or pickup anything at all heavier than a gallon of milk. That's what I was told anyhow. No getting it wet for 5-7 days. Then after about 2 weeks you can start lifting again and bending.

All in all though it was not hard to take and look at it as a little time to lay around and relax.

Good luck E

Found this quite informative. Seems there's good reason NOT to take BOTH aspirin and ginkgo biloba.
Carol in VA
Thu Oct 21,12:18 PM ET

By Alison McCook

NEW YORK (Reuters Health) - Many herbal remedies and nutritional supplements can damage the eyes, including some alternative therapies that are used by people trying to correct eye problems, new research reports.

According to a review of reported cases and medical literature, commonly used supplements including chamomile, ginkgo biloba, licorice, vitamin A and echinacea can cause a myriad of eye problems.

Study author Dr. Frederick Fraunfelder explained that supplements become dangerous to the eyes when people take them in large doses. They can cause problems including severe conjunctivitis, eye irritation, retinal bleeding and temporary loss of vision, the study found.

"Tell your physician what you take, as these products interact with other drugs," Fraunfelder advises. "Recognize even herbal products and nutritional supplements have adverse reactions."

People who choose to take supplements that can damage eyes should schedule an eye exam before beginning the treatment, then visit an eye doctor every year to monitor their eyes, he told Reuters Health.

Fraunfelder, who is based at the Casey Eye Institute in Portland, Oregon, explained that most people are unaware of how damaging supplements can be to the eyes. "Most consumers assume because a product is naturally occurring it is safe," he said.

As a result, about forty percent of people who use alternative therapies do not discuss them with their doctors.

To investigate which supplements can cause the most eye damage, Fraunfelder reviewed all eye-related case reports submitted to the World Health Organization (news - web sites), the U.S. Food and Drug Administration (news - web sites) and the National Registry of Drug-Induced Ocular Side Effects, which contains data from as far back as 1976. He also combed the medical literature for additional reports of eye problems caused by supplements.

Fraunfelder, who presented his findings in the American Journal of Ophthalmology, found 30 instances in which canthaxanthine, a carotenoid that produces an artificial suntan when taken orally, caused changes to users' retinas, including crystal deposits.

The researcher uncovered seven cases in which people rinsed their eyes with chamomile tea to treat styes and irritation, and instead developed severe conjunctivitis.

Echinacea is widely touted as useful for treating the common cold and flu, but Fraunfelder found seven cases in which users developed irritation and conjunctivitis after using it topically.

The researcher also discovered five cases of temporary vision loss apparently caused by licorice consumption, and 71 cases of niacin causing eye problems.

Fraunfelder noted that vitamin A is a particularly big threat to the eyes at high doses, and ginkgo biloba, a blood thinner, can cause retinal bleeding when combined with other blood thinners.

Most people were using the supplements for reasons unrelated to their eyes, including arthritis, inflammation and digestive problems.

SOURCE: American Journal of Ophthalmology, October 2004.

Hello Group

It looks as if I may be due for this treatment in one eye, and would be glad to learn from the experience or knowledge of others, particularly does life go on just the same afterwards? I guess there must be at least one follow-up to check that all is well, and to measure the effect on the pressures. I am aware that it is normal to carry on taking eyedrops because I believe that a fall of 5mmhz is about as much of a pressure drop as can be promised.

Also I am wondering whether, for open angle glaucoma, the treatment is entirely standard or whether the surgery is customised for the patient. To put it another way, is it advisable to look for the best available consultant?

Again, is the equipment the same the world over, or are there better and worse machines?

Apologies for this but it pays to be careful and I'm also hoping to book my flight to the sun thereafter

John

Drugs,

Take as much as you need to get through the day.

The pain can really wear you out and if your Dr. says you have to just live with it find another Doc.

Gabriella Noullett

Hi Laurie,

Thank you for the response. You reference "other list members" but I only received one other response.

Were there more than two responses (yours and the other response which I can't recall at the moment)?

At any rate, thanks again. I'm feeling a bit more settled today and will go back to the ophthalmologist tomorrow.

Hello Matthew,

I did a Medline search and found the following 2 articles (perhaps they're the ones you are already aware of). If you have trouble locating the abstracts, please email me privately.

Best wishes,

Jan

1. The mechanisms of apoptosis in biology and medicine: a new focus for ophthalmology. (eng; includes abstract) By Tempestini A, Eur J Ophthalmol, 2003 Apr; Vol. 13 Suppl 3, pp. S11-8; PMID: 12749672
2. Effect of coenzyme Q10 on hemodynamic response to ocular timolol. (eng; includes abstract) By Takahashi N, J Cardiovasc Pharmacol, 1989 Sep; Vol. 14 (3), pp. 462-8; PMID: 2476627

Matthew Cope <cope@...

Anyone know of any reputable sources of information about Coenzyme Q10 and
Glaucoma?

Dear Jan,
I would like to read the two articles you mentioned in the glaucoma
support group but I can't get on as you have to have some numbers to
get into that material on the computer. Is there anyway you can
send me this information. I would appreciate it a lot!
Sincerely,
Monica Pullern
eightbunny@...

Really good advice, Laurie!
And I'd like to add for Cheryl that vision loss from glaucoma normally
occurs slowly so there's no problem with a reasonable delay between visits
to get a firm diagnosis and course of treatement, if indeed it does turn out
to be glaucoma.
Patience is something that glaucoma has taught me <rbg
Sherry

I agree with the other list members: if the doctor you are seeing is NOT a
glaucoma specialist, ask to see one.
The optic nerve can be tricky: for example, the optic nerves of people who are
nearsighted may show changes that are NOT actually glaucoma: this is why someone
who is trained to diagnose glaucoma should be seen.
Then if it turns out that he/she says it is NOT glaucoma,
you will be truly reassured rather than wondering, and if it IS glaucoma, he/she
will know the best treatment.
They may want to do several tests over time: so if so, be patient.
Laurie

When my husband & I were tested to match our son it took about a week
to get the results back.
They also did a test to see how reactive our son's blood was when mixed
with ours (in the lab of course)called a cell-mediated lympholysis
(CML) test.
I came back as a 4 out of 6 match with low reactivity to the CML, so
after other test I was approved to be his donor when the time comes.
I wish you the best of luck! :)
Debbie mom to Eric 7/01 crf from puvs

Chris,
I drink V-8 sometimes for the vitamins, etc but tomorrow, I think I'll check out what preservatives are in it.

Pete

Cheryl,
You didn't say what your intra-ocular pressure (IOP) is - did the ophth
measure that with the "blue light" (Goldman Tonometer).
Any mention of damage to the optic nerve or just "not as pink"?
Glaucoma is diagnosed on the basis of damage to the optic nerve. The visual
fields should shed some light on the situation for you.
Sherry

Chris
You can do a 24-hour blood pressure monitor. Gotta keep the cuff on all the
time while it pumps up periodically.
Treatment would depend on the cause for the hypotension.
http://www.chclibrary.org/micromed/00052380.html
Did your doc suggest *why* he was recommending the V-8 juice?
Sherry

Greetings,

My vision could only be corrected to 20/30. The optometrist referred me to a ophthalmologist who did some tests including the dilation exam.

He said that the vision loss could be due to an "early cataract" (I'm 45).

He also said that the nerve on the back of my eye is "not as pink" as he'd like to see....or something similar.

Does this fit with a glaucoma diagnosis?

I'm fully aware that the MD will make the diagnosis, etc. I return in a couple of days for a "field of vision" test....

I'm just concerned and seek input.

Thank you

Anyone know of any reputable sources of information about Coenzyme Q10 and
Glaucoma?
I get a lot of Google hits, but most seem to be health food stores selling
it, so the information tends to be promotional -- though it may be accurate
too.
I've come across a couple of references to the effect that a) it might
reduce the side effects of Timolol, and b) it might reduce the beneficial
effects of Timolol.
I don't actually use Timolol, but I'm looking for any reliable information
regarding CoQ10 and Glaucoma.

so the study sent out shows that
nocturnal reduction in blood pressure
may be an additional risk factor in glaucoma ...
so my question is:
1) how does one measure blood pressure
while asleep ??
2) if one's blood pressure dips at night,
what remedies can 1 take ??
my dr. suggested drinking a glass
of V-8 juice before going to bed ...
any thoughts here ??
tks, chris

Suci-

I just happened to have this written on a piece of paper stuck to the bulletin board over my desk. I believe two sites have been recommended previously in this group. They are www.dialysis.org and www.kidneyschool.com. I have not personally been to either of these sites yet, but have read they are very helpful. Of course, there are also a lot of posts in the group from people who have been there, done that and have shared their own personal knowledge. Good luck. j
sassysuci <sassysuci@...

Hi Lorelle,
I am new to this group. My brother (middle aged) was diagnosed w
PKD 9 months ago. Needless to say, it was a shock. We don't know
if his was caused by a mutation in his body or perhaps my dad had a
mutation & passed it on. I say mutation, because it is nowhere to
be seen in any of my aunts, uncles or grandparents who all are
living or lived to ripe old ages with none of the symptoms
(including the heart issues).
I won't get tested until I have longterm insurance.
Can you please direct me to a web site or give me the steps to
prepare my brother for impending dialysis? Tell me more about the
caution needed with having fistula surgery. I want to be his best
advocate.
Thanks.
Suci

PKD Foundation, FDA Team Up
As part of its Critical Path Initiative, the Food and Drug
Administration has agreed to sponsor a workshop with the PKD
Foundation to bring together the scientific and pharmaceutical
communities to focus on therapeutic developments for PKD.
The workshop, tentatively planned for March 2007, is an exciting
opportunity for the PKD Foundation and PKD families everywhere; the
Critical Path Initiative is a new method of mobilizing support for
drug development for a disease.
The Critical Path Institute was established in 2004 as part of the
FDA's effort to improve the safety and efficacy of drugs reaching the
public, while at the same time reducing the time and cost of drug
development. It facilitates interactions between the FDA, scientists,
physicians, pharmaceutical companies and the private sector (like the
PKD Foundation) to develop partnerships that will lead to safer,
faster drug approval.
A few months ago, Dr. Ron Perrone of the Tufts-New England Medical
Center and the new Chair of the Foundation's Scientific Advisory
Committee, contacted Shirley Murphy, M.D., Office of Critical Paths
at the FDA, to discuss identifying PKD as a promising target for this
approach.
After deliberation at the FDA, a teleconference was held involving
Dr. Murphy, Dr. Perrone, Wendy Buckman from the Commissioner's Office
and Dan Larson, Mark Stone and Lorrie Rome of the PKD Foundation.
During this discussion, plans for the joint workshop began.
Remember to check the PKD Foundation website, www.pkdcure.org, for
regular updates!
http://www.pkdcure.org/site/PageServer?pagename=medical06_fda_teamup

Hi Lorelle,
I am new to this group. My brother (middle aged) was diagnosed w
PKD 9 months ago. Needless to say, it was a shock. We don't know
if his was caused by a mutation in his body or perhaps my dad had a
mutation & passed it on. I say mutation, because it is nowhere to
be seen in any of my aunts, uncles or grandparents who all are
living or lived to ripe old ages with none of the symptoms
(including the heart issues).
I won't get tested until I have longterm insurance.
Can you please direct me to a web site or give me the steps to
prepare my brother for impending dialysis? Tell me more about the
caution needed with having fistula surgery. I want to be his best
advocate.
Thanks.
Suci

Ah, yes! Hypotension (and hypertension) can be a risk factor for glaucoma.
From a Wills chat:
"P: What's the relationship between systemic blood pressure and intraocular
pressure?
Dr. Rick Wilson: There is a diurnal curve of blood pressure similar to the
diurnal curve of intraocular pressure. As with eye pressure, the blood
pressure is at its lowest during the early morning hours. In patients with
hypertension (high blood pressure), the lowest pressures are between 2:00
a.m. and 4:00 a.m. Two-thirds of the normal population will have a blood
pressure drop of greater than 10% during this period. These people are
termed "dippers." Stephen Drance has found a much higher incidence of
progression in POAG among dippers than among non-dippers."
http://www.wills-glaucoma.org/supportgroup/20030312.php
The study that Dr. Wilson referred to is:
Surv Ophthalmol. 1999 Jun;43 Suppl 1:S10-6.
Nocturnal hypotension: role in glaucoma progression.
Graham SL, Drance SM.
Department of Ophthalmology, University of British Columbia, Vancouver,
Canada.
The role of systemic blood pressure in glaucomatous damage remains
undefined, with systemic hypertension and hypotension being implicated in
different studies. We have previously reported that the physiologic
nocturnal blood pressure "dip" may be exaggerated in some glaucoma patients
with progressive field loss. A 24-hour ambulatory blood pressure recording
was originally performed on 84 patients with glaucoma. The mean result
across all our glaucoma patients were within the ranges reported in the
literature for normal subjects. The normal-tension glaucoma and primary
open-angle glaucoma groups did not differ significantly in blood pressure
variables. Nocturnal blood pressure variables were lower in the patients
with progressive field defects compared to those with stable visual fields.
To determine long-term outcomes in these patients, we reevaluated the visual
fields of the original 84 patients studied. In 70 patients with long-term
visual field data (mean, 5.1 years), those who had shown greater nocturnal
blood pressure dips were more likely to have shown field progression at some
stage, despite good intraocular pressure control. Patients who had field
progression showed significantly lower nocturnal blood pressure variables,
with the dips of the systolic, diastolic, and mean arterial pressure
significantly larger (systolic dip, P = 0.01). They also had a greater
history of disk hemorrhages. A review of other 24-hour blood pressure
studies in the literature shows that most are in agreement with these
findings. The nocturnal reduction in blood pressure may, therefore, be an
additional risk factor in glaucoma patients. (TinyUrl to shorten really
long one - http://tinyurl.com/4429v)
Sherry

Thank you for your responses-it gives us options. My husband went
ahead and made an appointment at Univ. of Mich for next month. It
feels good to be moving forward and doing something instead of just
waiting and watching lab values decline.
About U of M. It's a Michigan thing. Just like everyone knows the
Mackinac Bridge as "the bridge". Go Tigers! (Detroit that is)
Mary

Hi,
Anyone have any information on the effects of hypotension on glaucoma?
Thanks.

For years I was told I had glaucoma, My specialist treated me thesame as
glaucoma patients. I went from open angle to closed angle,what seemed to be
overnight. Since then I have had 5 iridotomies,leaving me with 2 holes in each
eye. I now have pressures of 25 & 27while using Zalatan, and I am having another
field vision in November. When I found your group, it supplied me with the
questions Ishould have been asking. I now believe I have ocular hypertensionwith
mixed mechanisms. For me, the Zalatan has worked for 2 years.
Judy

Sal,
You didn't mention what your pressure was at diagnosis and what it is on
Xalatan. Have you had visual fields exams? If so, what did they show?
No one ever mentioned the cupping before you were 35? Years before the
ophth had me go to a glaucoma specialist, it was noted that I had some
slight cupping but they weren't sure if it was due to my myopia or the
occasional very slightly elevated pressure.
Have you seen a glaucoma specialist for a second opinion?
Sherry

Thank you for the info. Not often do we get such prompt answers to
questions and I really appreciate it when I do.
blessings, Kim

Andrea~
There's a book out, Eat Right 4 Your Type, I'll have to look up the
author's name and get back to you on that. There are also some links
with the foods for each type listed, but it's probably best to read
the book, to understand why certain foods are no-no's and others
aren't. Also, there's a GREAT link that's done by another PKD'er,
she's compiled a substantial website with foods and herbs and stuff
that are good and bad for those of us with PKD. That link is
www.pkdiet.com . I'll be more than happy to share whatever
information I've found with you. :)
And by the way, 15 times around the mini-park is better than nothing
(1 time around is better than nothing, for that matter!)
Aloha~
Noreen

Hi Diana,

I had laser surgery on both eyes in 1994, each done separately about 6 weeks apart. My pressures lowered, but not enough to come off eye drops. Last summer my left eye pressures went crazy - from high 30's to mid 50's - so I'm now on 3 different drops, but looking at surgery within the next year according to 3 different glaucoma docs. The laser surgery was very simple, maybe 10 minutes per eye, done in an out-patient facility; my eye was numbed and I never felt much of anything during the procedure or afterwards. According to my docs my angles are still in good shape from the laser treatment. My problems now stem from mixed mechanism glaucoma, i.e., open angle and closed angle.

The Wills group talks about angle closure http://www.wills-glaucoma.org/supportgroup/20020313.php. Maybe you'll find it helpful.

Has your husband had a 2nd opinion? It's certainly advisable in most cases.

Good luck,

Carol in VA

---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.778 / Virus Database: 525 - Release Date: 10/15/2004

Hi to all...
Seems like an active group here. I was dx'd with normal tension
glaucoma probably 2-2.5 yrs ago. The Dr. noted that my nerves had
cupping (significant) but the pressure was ok. He watched and after
a year put me on Xalatan. Was checked and not difference noted. I
read that Xalatan was a good med but over time caused damage to
cornea (?) My question is : I have a few other abnormalities that I
was born with--slight and other acquired things (mitral valve
prolapse)--couldn't this cupping (that has not changed measurably)be
something that I was born with?? Should I be using this med? How can
I find this out? The Dr. I see has the same dx. (NTG)and says that
the cuping couldn't be a defect ie: normal for me--just not normal
for others. I don't want to loose my sight--but I don't want to use
a med that can cause damage long term if my cupping is congenital.
I am 46--and I dont think anyone measured or check this in me till I
was about 35. At 43 or 44 had the computer pic's taken for
measurment and have had them repeated since.
Any input here is appreciated....so much to learn :)
thanks,
Sal

My son is doing work-up for almost a month now prior to actual kidney operation. He's 19 yrs. old. The donor is his younger brother. Operation will be done before the end of this since matching result is successful. I think it depends on the result of work-up to determine.

Edgar
nana_law2000 <gglaw@...

Today my husband and i went for our blood test to do a cross match to
see if he can be a kidney donor for me.Does anybody know how long it
takes to get results of that?So far all the other tests have been
good, I guess this one is the deciding factor.
nana_law2000

Has anyone in this group had Angle-closure glaucoma surgery? How are
you doing if you have had this surgery? Is anyone dealing with angle-
closure glaucoma with something other than surgery?
Please enlighten me as soon as possible: my husband is dealing with
glaucoma and possible surgery.
Thank you,
- Diana

Hi Dr Ritch, Sherry, and friends,

What is the data or clinical experience on breathing (during short periods of time) 100% oxygen for neuroprotection, even temporarily ? I did two searches, one in Medline and one in the Wills Chat Highlights.

I found several papers in Medline, some on research w/humans, some w/animals, but I wonder. Here is a study with human subjects in the UK.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14977778

Br J Ophthalmol. 2004 Mar;88(3):406-11. Related Articles, Links

Click here to read
Ocular haemodynamic responses to induced hypercapnia and hyperoxia in glaucoma.
Hosking SL, Harris A, Chung HS, Jonescu-Cuypers CP, Kagemann L, Roff Hilton EJ, Garzozi H.
Neurosciences Research Institute, School of Life and Health Sciences, Aston University, Aston Triangle, Birmingham B4 7ET, UK.
AIM: To determine the ocular haemodynamic response to gas perturbations in glaucoma. METHODS: Intraocular pressure (IOP), systemic systolic and diastolic blood pressure (SBP and DBP), and retrobulbar blood flow velocities, measured by colour Doppler imaging (CDI), were recorded at two visits. CDI was used to measure peak systolic and end diastolic velocities (PSV and EDV) and resistance index (RI) in the ophthalmic artery (OA), central retinal artery (CRA), and short posterior ciliary arteries (SPCAs). At the first visit, measurements were taken at baseline (B1: breathing room air) and during isoxic hypercapnia (end tidal PCO(2) increased 15% above baseline) in 16 normal subjects and 12 patients with glaucoma. On another day, measurements were repeated at a second baseline (B2) and during hyperoxia (100% oxygen breathing) for 15 normal subjects and 13 glaucoma patients. Baseline systemic data were compared using paired t tests; REANOVA was performed to compare group
differences at baseline and to determine the vessel response to each condition. Fisher's LSD was used for post hoc comparison. RESULTS: Baseline OA PSV was lower for the glaucoma than for the normal group (p = 0.047); the groups were otherwise similar at baseline. IOP demonstrated no response to hypercapnia, but reduced during hyperoxia for both the normal subjects (p<0.0001) and glaucoma patients (p = 0.04). During hypercapnia, SBP increased in normal subjects (p = 0.03) and glaucoma patients (p = 0.01); DBP increased in normal subjects (p = 0.021). There was a corresponding increase in ocular perfusion pressure (OPP) for normal subjects (p = 0.01) and glaucoma subjects (p = 0.028), and as a result OPP was included as a covariate in the REANCOVA model. Hypercapnia resulted in increased PSV in the CRA of normal subjects (p = 0.035) and increased PSV and EDV in the SPCAs of glaucoma patients (p = 0.041 and p = 0.030 respectively). Hyperoxia resulted in reduced PSV and EDV in
the ophthalmic arteries of normal subjects only (p = 0.001 and 0.031 respectively). CONCLUSIONS: These findings suggest the presence of relative vasoconstriction in glaucoma patients, which is at least partially reversed by hypercapnia.
-------
Another paper, apparently oxygen reaching the retina
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=2761114

1: Jpn J Ophthalmol. 1989;33(2):199-203. Related Articles, Links

Measurement of vitreous oxygen tension in human eyes.
Sakaue H, Tsukahara Y, Negi A, Ogino N, Honda Y.
Department of Ophthalmology, Faculty of Medicine, Kyoto University, Japan.
The vitreous oxygen tension in the human vitreous body was measured using a polarographic oxygen electrode during vitreous surgery. To the best of the authors' knowledge, this is the first time these measurements have been taken in the human eye. The vitreous oxygen tensions in the anterior peripheral vitreous body, central vitreous body, and posterior vitreous body were 16.7 +/- 3.7 mmHg (mean +/- SD, n = 9), 15.9 +/- 2.8 mmHg and 19.9 +/- 4.8 mmHg, respectively. The preretinal oxygen tensions over the detached retina and detached macula were 30.0 +/- 4.8 mmHg (n = 5) and 15.3 +/- 2.1 mmHg (n = 3), respectively, with the latter significantly lower than the former (P less than 0.01). In one case, after inhalation of 100% oxygen the oxygen tension over the retinal scar resulting from cryoretinopexy in a previous retinal detachment surgery increased remarkably to 160 mmHg.
I did not see anything definitive in the Wills Chat room:
http://www.wills-glaucoma.org/cgi-script/csSearchPro/csSearchPro.cgi?command=query&terms=oxygen&mbool=AND&mcase=Insensitive
Thank you.
Lilian

Once again I have met a person who will be on dialysis soon and their
nephrologist allowed a surgeon to do surgery, cut into their arm,
poke around and make scar tissue, and NOT get a fistula done -- all
done BEFORE getting the vein mapping done.
Once again folks, it's your life, your body, so PLEASE do not let
anyone cause scar tissue in your arm veins, and BEFORE fistula
surgery have a Doppler ultrasound done to map your veins. DEMAND it
and don't take "No." for an answer. Discuss this with your
nephrologist well in advance, so they know you do not want to go to
the guy that graduated last in his class, and regularly butchers arms
instead of doing a fistula. DEMAND an experienced VASCULAR surgeon.
If you question at all how important having a well working fistula
is, check out ihatedialysis.com and find out from the "horses
mouth" how having fistula problems is good cause for hating dialysis.
My husband barely dodged the bullet -- a general surgeon who would
probably have screwed up his arm. I want everyone here to know ahead
of time that you have to protect yourself from the medical
imcompetence which can add much pain to your life and subtract years.
BTW, it's never too early to start squeezing the rubber ball to
develop your veins.
Sorry for the rant but it is that important.
Lorelle

Today my husband and i went for our blood test to do a cross match to
see if he can be a kidney donor for me.Does anybody know how long it
takes to get results of that?So far all the other tests have been
good, I guess this one is the deciding factor.
nana_law2000

With kidney failure it's harder for the kidneys to clean excess
electrolytes from your blood stream and they tend to accumulate with
ill effects. In the case of anti-perspirant it's the aluminum. Going
through your skin and into your blood stream. Deodorant by itself
without the antiperspirant ingredient is "safer". Similarly I've
noticed Dasani water has added potassium and magnesium, so you might
want to watch out for that too. Seems like everywhere you turn there is
something.
Debbie mom to Eric 7/01 crf from puvs etc

Laurie,
I would strongly recommend Wills. I don't know about Sheie, but I do know
Wills has some great glaucoma specialists. Heck, if I were on the East
Coast, I'd either go there or see Dr. Ritch!
Sherry

I am currently seeing a glaucoma specialist at Moore Eye Institutes in Delaware
County, Pennsylvania near Philadelphia.
I am impressed with her not only because of her medical expertise: she has one
important trait: she makes me feel positive and hopeful. And that is a very
important trait for a doctor to have: not all of them do.
I am wondering: there are other much larger medical groups that treat glaucoma
in my area: I know there are two:
Scheie and Wills. If I ever had to get a second opinion in regard to a procedure
or treatment: which of the two do you feel is best?
Laurie

Nina

The concern is based on studies which show that ingestion/absorption of aluminum appears to be linked to a number of health problems including kidney damage. Antiperspirants contain aluminum, this is the ingredient that suppresses sweating. The FDA is increasingly requiring 'black-box' warnings on items which research and clinical experience demonstrated potential health impact.

Aluminum exposure is suggested to be particularly problematic to some who are on dialysis and also certain diabetic conditions.

The form and method of exposure from antiperspirants has not yet been directly linked to these health issues, but it is a caution that should be noticed and followed.

Deodorants should not contain aluminum. If they do, then they are mislabeled and that is a whole different issue.

You can find both technical and non-technical material on the issue by googling the words aluminum, kidney disease and antiperspirants.

My nephrologist and IM practitioner do not recommend the use of antiperspirants generally, but not for the aluminum content, however. They do not have any concern with deodorants, and do encourage regular showers :-)

HTH

George

On 10/10/06, Nina Crum <ninacrum@...

Hi everyone--

I'm sure you've noticed the warning labels on deodorant/anti-perspirant products about kidney disease. Can anyone explain or point me to an explanation of this? Do your doctors tell you to avoid deodorant?

Thanks.

Hi everyone--

I'm sure you've noticed the warning labels on deodorant/anti-perspirant products about kidney disease. Can anyone explain or point me to an explanation of this? Do your doctors tell you to avoid deodorant?

Thanks.

Thanks,
cess

Anyone who lives in NY should at least see the Glaucoma Associates doctors/facility at least once. I am a patient there and I continue to be impressed every time I go.
Great staff- awesome technology and wonderfully bright and caring eye doctors.
I am a big fan!
Compliments to Dr, Ritch-
-Ronnie

Not a stupid question -
Could be -
University of Maine
University of Massachusetts
University of Minnesota
University of Mississippi
University of Missouri
University of Montana

Its based upon your GFR level which approximates the % of kidney function
remaining. Here's a link for an easy read version on the stages of kidney
disease:
http://www.davita.com/articles/ckd/all_about_ckd/?id=92
Mike

Hi all- I am hoping someone here will be able to answer a question.
I was seen in the emergency room last night for a kidney infection. On
my discharge summary I was discribed to have stage 3 pkd. This was
the first time I have seen stages as a discription and would like to
know what the stages are. I would have asked last night but didn't
notice till I got home. Thanks, Kim

We are still learning about this. But what is the best meds to give for
fever, colds and congestion. My 15yr old is sick.
Thanks,
Donna

Thanks for the link, Nancy!
After reading the article, I went to the Wills home page (link at the
bottom of the highlights) and did a search on stem cell and found it
mentioned in several articles.
Sherry

Here is a link to last week's chat highlights regarding stem cell research, with Dr. Rick Wilson, a glaucoma specialist at Wills:
Wills Glaucoma Service & Foundation: Stem Cell Research Chat Highlights
If anyone has a problem with the link, the chat transcript should be accessible from the main page at willsglaucoma.org
Nancy

Mary,
My name is Kiersten and I had a kidney transplant at U
of M almost 4 years ago and they are the BEST in the
state. I had the option of going there or to Grand
Rapids and I had never heard any feedback from the
Grand Rapids hospital but got rave reviews about U of
M. The whole U of M hospital is fabulous. If you have
any more questions I would be happy to asnwer them (if
I can) for you. Take care.
Kiersten

Eve,
This is an international glaucoma support group. I don't believe that we
have any business discussing politics and candidates of the upcoming
elections of *any* country.
Please feel free to discuss stem-cell research as it applies to glaucoma,
but *not* as it applies to any elections in any country. In other words,
keep the politics out of the list, please! That's all I'm asking!
Messages with a political message will not be approved. Maybe I'm being a
little hard-nosed about this, but I do want to keep the focus on *glaucoma*
and not politics, which could easily get out-of-hand. I've seen this happen
frequently when politics started to get discussed on other groups.
Sherry

Hello,
My husband's local doctors' advised him to seek treatment at a
facility with a transplant unit as they feel he will be a transplant
candidate in the near(?)future. He is planning on making an
appointment with University of Michigan hospitals. We're wondering if
anyone has had experience there and may have some advice or
recommendations for doctors or other hospitals in Michigan?
Mary

http://www.pkdcure.org/site/PageServer?pagename=mn_Aprilclinicaltrials
Somatostatin
This general aim of this study is to compare the effects on disease progression of three year treatment regimen using long-acting somatostatin or placebo in patients with ADPKD and normal renal function or mild to moderate renal insufficiency. This study is sponsored by the Mario Negri Institute for Pharmacological Research in Bergamo, Italy. This study is not yet open for patient recruitment. For more information, go to www.clinicaltrials.gov/ct/ and type in "polycystic kidney disease". Then select "Somatostatin in Polycystic Kidney: A Long-Term Three Year Follow-up Study" or contact Norberto Perico, M.D., at perico@... .
This is a fun and somewhat comprehensive article:
http://ndt.oxfordjournals.org/cgi/content/full/21/7/1752
Kyle
===================================== ,_._,___

I assume this drug in question is somatostatin. Do a search of the
internet for this name and you will probably find some info.
Kyle
today I talked with Dr.Torras from Mayo.a new study will be opening up
in nov or early dec. the reason for this study is to see if a drug
that is already on the market can make the liver smaller.this will be
a 3 year study.if you would like to be part of this talk it over with
your dr. and call Dr.Torras.Toni

Hi Kyle. Hate to keep taking advantage of your knowledge but...
I'll ask my pharmacist if you don't know or would prefer not to answer.
But, also posted in case this has come up for anyone else.
Many months ago, [I think February], my pain management doctor [the
good one, not the previously-mentioned pervert] gave me a prescription
for Fentanyl [Actiq] (spelling?) I was/am already on Hydrocodone for
moderate pain and Oxycodone for severe pain. The Fentanyl was for, as
we described it, "save you a trip to the emergency room" pain. [By the
way, would like to mention that, unusual or new pain, accompanied by
fever, nausea, frank blood in urine, higher than usual blood pressure,
etc. should not be masked by pain medications and should be checked on
post haste. And, I mean that.] These are 800 mcg losenges
or "lollypops". I was told to put one in my mouth until I felt some
relief and then take it out.
Well, there have been many times that I've been in pretty bad pain but
I've resisted taking the Fentanyl because, frankly, I was kind of
scared of it. From reading the patient insert, not something to be
taken lightly and, more importantly to me, since my pain has gradually
become worse over the years, I don't want to keep "upping" my pain
meds for fear that I will build up a tolerance and nothing will work
when it gets really bad.
However, last Sunday it was really bad. I had not taken any of my
usual stuff so I thought it might be okay to take the Fentanyl. Put
the lollypop in my mouth for, I think, fifteen minutes, then took it
out because that seemed like a reasonable interval to stop and check.
At some point, it was actually bizarre, I was suddenly (!) pain free.
And, I mean, completely pain free. I actually gasped when I realized
it because it's been so long since I've been completely pain free.
That lasted about five minutes and then the old, familiar pain started
creeping back and then got bad again. I took an Oxycodone and waited
about an hour. Probably stupid of me but, I put the same losenge back
in my mouth. I think it was about five minutes and my boyfriend said
that he wasn't sure it was such a good idea so I took it out. Thank
goodness!
About five minutes later, I was as sick as I've ever been. Very
nauseated, just "funny" feeling, felt like I felt once before when a
pre-op med [Vercet] (sp?) caused me to have a seizure, itching all
over. I was so miserable I thought I might actually have to go the ER
after all. [So much for that plan. :)]
Luckily, [keep this in mind, group] you can help yourself when you
try. I put a cool cloth on my face, took deep breaths and did every
biofeedback exercise I know. I took (seemingly) a while for me to
regulate my breathing, calm down, hang on, eventually went to sleep.
[Oh, I should mention, besides all the bad stuff, I was eventually
without pain for many hours. That's good but, what's the use in pain
free if you're seizing and/or in a coma afterwards? I know, picky,
picky, picky. :)]
So, my question is, did I mis-use it? Did I use too much? It seems
that such a powerful drug given in such a haphazard way is kind
of...risky. Perhaps I misunderstood the instructions.
Anyone familiar with this drug? If Kyle doesn't mind inputing his
knowledge of said drug.
Thanks.
Love, j

There are a lot more *very* critical issues to be dealt with in this
election besides stem cell research. I refuse to judge a candidate based on
one issue only, but look at what the candidate's done in the past and the
direction he or she is taking now in *every* aspect of his *political*
career
And please, let's not let this get into a political discussion....
Sherry

today I talked with Dr.Torras from Mayo.a new study will be opening up
in nov or early dec. the reason for this study is to see if a drug
that is already on the market can make the liver smaller.this will be
a 3 year study.if you would like to be part of this talk it over with
your dr. and call Dr.Torras.Toni

you know Dave my husband has this horrible disease. and when we talk
cause things are bad, he always says he would be better off without me.
well hes wrong and SO ARE YOU!!!!!!
there is alot of good you can do for others, i do wish i could take the
pain away for you even if its just for one day! so you could feel free,
enjoy the sun as it hits your face, or the rain as it hits a roof top,
or a day at the ocean. i will pray for you everyday and hope and pray
God answers my prayers to help you. look forward to hear from you soon.
your friend in GOD and always Janet Booth

Note: forwarded message attached.

Toni

www.weinerrace.com

I pondered a while before sending this, and it may get blocked by the
Listmom. But I figure it is On Topic, so here goes:
I wouldn't presume to tell anyone how to vote, and I am not proposing that
this develop into a political discussion.
However, I would respectfully like to suggest that if you're voting in the
US election you might want to give some thought to the candidates' and
parties' position on stem cell research. And if you weren't planning to
vote, maybe you'll change your mind.
Why do I raise this?
Glaucoma is characterized by nerve damage. That means it's irreversible.
Stem cell research hold out at least the hope, if not the promise, of a
cure.
One presidential candidate has effectively crippled this research. The other
would remove the barriers to it.
If you haven't thought about it before, now would be a good time in my
opinion.

Thanks for the congratulations. I started my exerice program by
walking. Hubby and I would walk after dinner. Walking is great
exercise and it was a nice time to catch up on each other's day. I
moved on to running, but we still try and walk together once or twice
a week.
Lisa

I used Mapquest to find out that Jonesboro is out in the middle of nowhere. Do you feel 90 miles is too far to go to see a specialist? If not try

Bruce C Henderson MD Shreveport, LA 71104
Second Office: Shreveport, LA 71106 (318)798-2644

He did a fellowship in glaucoma at Emory Univ, which is a good eye school. There are also a couple of other glaucoma docs in Shreveport.

Ellen Wommack Berg MD Shreveport, LA 71104 (318) 221-2651
Second Office: Shreveport, LA 71130-3932 (318) 675-5010

She did a fellowship at Devers Institute.

Jerry W Drummond MD Shreveport, LA 71118 (318) 688-5710

is the other one. Hope this helps.

While none of these are AGS members, they are glaucoma docs. Not all good glaucoma docs are members of AGS. I don't know if these are good docs, but I wouldn't hesitate to try the one from Emory Univ. I consider Emory to be a good school to do a glaucoma fellowship in.

Ruth

Hi Janet will I would like to say thank you and say that when I go in
to p.k.d care that I can not stop crying this is getting to hard for
me GOD IS WITH ALL OF YOU.....Dave

Speaking as a Mom I would do "anything' for my kids to not have to suffer with this and one other thing I know is God does not want any of his children to suffer with illness and he took all our sickness and sins away from us at Calvary. I pray also that you heal and protect fishingdavedog and any other person with PKD. Please father send us a cure to stop the cysts from multiplying and give us all peace and healing. I too am going through a rough time right now...you all have grown in importance in my life lately. If anyone stays here they can learn a lot that the Drs. do not touch on. I thank all of you for being out there and helping each other.
fishingdavedog <fishingdavedog@...

Hi God I would like you to ask my mom why I have p.k.d and tell her
that I'm not doing so good with this disease. and i have one more
thing to ask of you to help all of this people that have this disease
too

Your Realtor,
Deborah Macholl
Prudential Gardner, Realtors
Cell: (985) 705-5802
Direct: (985) 674-8911
Fax: (985) 626-1623
www.MotherDaughterRealtors.com

i am so sorry you are going through so much. i know things can get
tough. i wish you would stay with this group, your insites have
helped alot of people. but i respect your wishes. and wish you peace,
love and joy. even if you do not get this email, know you are not
alone.
i will pray for you and your family, love and in peace.
love texasmom (Janet)

darnell

I am on AOL and I do not have any problems reading Dr. Ritch's or anybody else's messages. Do you have the newest version that just came out a few weeks ago? If so that may be the problem. The newest version has LOTS of flaws. We have been told by the local realtor board not to download it because if we do we won't be able to print any listings. My biggest problem with AOL right now is staying connected. I get booted off 4-5 times an hour. I can't get high speed because I live in a rural area that doesn't have cable. It is making it very difficult to do my work.

Ruth

Hi all just to let you all know that i'm having a hard time right now
so this will be my last email and that i'm going to stay off....good
bye

Hi God I would like you to ask my mom why I have p.k.d and tell her
that I'm not doing so good with this disease. and i have one more
thing to ask of you to help all of this people that have this disease
too

Hi piano-mama52
Hey I can talk to you I have p.k.d and my kidneys are going down too
so I know all about the pain. so we can email that will work just let
me know when you would like to do this............

Your doctor does not know his business. Six is not a normal pressure. Find another doctor.

Hi all- I hope you don't mind me joining and my perhaps premature
concern for possibly having glaucoma. I had the test today and the
doctor said normal was "6". I was at 22. He said that he had a
patient diagnosed with glaucoma that had the pressure # lower than
that. I'm nervous because I go on vacation in a few days so not able
to see an opthomologist as recommended, until I return. The doctor
said the eye drops hurt. Is it that bad? Will the conditon reverse
so I can go off meds? Can I smoke weed legally? ;o) I was told by
an eye doc about 5 years earlier that I might have glaucoma. They
did something to dilate my eyes and then took tests that were
inconclusive. What the...??? Anyway, any help is kindly
appreciated. Please no bummer talk though, I try to be an
optomistic :O)
Thanks
Susie

Congratulations Lisa. You are an inspiration to us all. I've never been a runner and don't know that I ever could be but I am trying to boost up my exercise with walking. My neph advised against running and weight lifting but he's not against all exercise. I guess that's just one more area that is individual.

Pam

Kyle Elwood I looked up Ascites and will talk with my dr. about
running the tests.
in reading it I noticed that I have been having those promlbems,I have
gained over 20 pounds in 3 months,flank pain,tired all the time,
I don't eat much as there is no room,and I follow a great diet.
thank you for being part of this group.Toni

I am on AOL, this means that you do not download your messages. You read your email on aol's computer than if you want to save it to your computer you can. His email is the only one that I have a problem with.

Is anyone else in this group on aol?

You do read your email on line instead of downloading.

Can you read all of Dr. Ritch's posts?

Thanks

Darnell

Hi,
This past weekend I ran my first 1/2 marathon (13.1 miles). I did
it in 2 hrs. 30 minutes - 11.5 minutes per mile! I'm so proud of
myself I could burst. I started training 2 months ago and before
that had never run more that 2 miles in my life.
I'm 45, still normal kidney function, but numbers are starting to
creep up. I'm on BP and various cholesterol meds. Largest cysts are
around 6cm, too many to count on both kidneys. I have some minor
discomfort now and then, but no pain. I was diagnosed (ultrasound)
20 yrs ago when Dad found out. Last year I was also diagnosed with
type 2 diabetes (Dad's Mother had both PKD and Diabetes). Yes,
that's a double whammy on the kidneys.
Over the years I've tried to be "kind" to my kidneys and not do
things that may cause damage. I take my Dr.'s advise and use my own
judgment for any comments found on groups like this. A number of
people (on this group) have mentioned that their Dr. said they
shouldn't run, lift weights, etc. because this would cause kidney
problems. I've never had a Dr. discourage any exercise. However, I
had an odd experience a few weeks ago
The day after a long, hard run I got a low grade fever and threw up
that evening. I felt yucky the next day and had more kidney
discomfort than usual. I attributed it to food poisoning (we had
lunch at a questionable restaurant). I was fine the next day, but
I'm pretty sure there was blood in my urine that morning. I've
never seen this before. I've been fine since (no blood or fever and
feel fine). I'm wondering if it was a cyst bursting rather than
food poisoning. I would think it would be more painful, but who
knows. Anyway, I have a Dr. appointment and will discuss it with
him.
I'm so enjoying the running and feel I'm getting good health
benefits from it. It seems that managing your health often involves
weighting the benefits and risks and it's not always clear what's
best.
Thanks for reading. I don't post often, but really enjoy and
appreciate this group.
-Lisa

Laurie,
I used to used a cold remedy, actifed, but don't risk it any longer.
Now I use olbas oil on a tissue, or it can be used with steam... and
also eat simmered elderberries and their juice for their antiviral
properties. [I froze the elderberry harvest]
Already prepared elderberry syrup is sold in healthfood shops under
the name 'Sambucol' and Solgar do a capsule form too.
Gargling with 3 drops of citricidal [grapefruit seed extract]in warm
water might also help as it tends to clear mucus away and stop that
horrible choking sensation.
Hope that helps the winter ailments!
Joyce

Darnell,
I have no idea why - are you downloading the messages to your email
program or reading them on the web? If you're downloading them,
which program do you use?
The stem cell study was posted in the Files section of the website.
You can read it there.
Sherry

Sherry
Most all the times that Dr. Ritch posts to the group, I can not read the post. See below.
I have to watch for someone to respond and his message will be part of theirs or I have
to go to the group site and read his post there. Why is this happening?
Darnell

Message: 12
Date: Wed, 6 Oct 2004 15:34:20 -0400
From: "Robert Ritch, MD" <ritchmd@...
Subject: Re: Article on stem cell research
[This message is not in displayable format]

What I've been told by my glauc doc is that with open angle glaucoma, I
don't need to worry about the glaucoma warnings on the meds (it's associated
with the antihistamines). He said that normally those are