Re: [igan]Rob update/LAURA

[Guest guest]

Hi ,

Yes, I did have a touch of pancreatitis. I am not sure if a virus

precipitated it or if it was just my body spiraling out of control. It could be

that

the busy time of year was just too much for me. I have had pancreatitis a

number of times in the past, and it just seems it takes time to let my body

heal.

I have only worked a couple of hours a day this week, and now am off

Friday-Sunday.

I am very glad you wrote Dr. D an email. Hopefully he can reinforce the

importance of compliance with medication next time you and Rob go in.

And yes, God IS good ALL the time, even in the midst of pancreatitis :-)

In a message dated 12/31/2004 6:22:41 AM Pacific Standard Time,

snooksmama@... writes:

> :

> I have been thinking about you and praying that things get better soon. I

> was so happy to hear that you were eating again. Do they think you had

> pancreatitis?

> I hope that you will have a bit of time off work to fully recover, .

> I did email Dr. D. last night after having my hubbie read it first. I

> think Dr. D is out of town this week, so its likely I won't get a

> response until monday or tuesday. But at least I did speak my piece. I

> told him I never want an appointment with Dr. G again for Rob.

> Yes, we were once again ecstatic that the Cozaar is continuing to work!

> God is good!

[Guest guest]

:

I have been thinking about you and praying that things get better soon. I

was so happy to hear that you were eating again. Do they think you had

pancreatitis?

I hope that you will have a bit of time off work to fully recover, .

I did email Dr. D. last night after having my hubbie read it first. I

think Dr. D is out of town this week, so its likely I won't get a

response until monday or tuesday. But at least I did speak my piece. I

told him I never want an appointment with Dr. G again for Rob.

Yes, we were once again ecstatic that the Cozaar is continuing to work!

God is good!

, mom to Rob, 15

On Thu, 30 Dec 2004 23:06:02 EST W4JC@... writes:

Oh ,

I positively feel your frustration! I would have been very upset too.

It is

at the very least irresponsible to tell a patient it is OK to not take

their

meds, much less saying that to an adolescent! I do think you should

share

your concerns with your regular Neph.

I am so sorry you had such a frustrating visit.

I also hope things slow down for you at work. That sounds like a very

rough

schedule.

The good news is that the protein and blood are under control, and lets

pray

they stay that way!

In a message dated 12/30/2004 8:00:28 PM Pacific Standard Time,

snooksmama@... writes:

> I'm sorry I haven't been responding or posting very much. I do try to

> read the posts, but have had trouble keeping up. I finally was able to

> get a new computer, so that problem is solved. Unfortunately, the other

> admissions nurse in my department was suspended, and then had a

scheduled

> vacation, so I have been working and on call for the last 10 out of 11

> days. It has been very hectic.

> I did get Tuesday off to take Rob to his rheumatology and nephrology

> appts.

> Rob's regular nephrologist was out of town. I just love this doctor,

Dr.

> Devarajan. He is wonderful. Unfortunately, we had to go on and schedule

> with another nephrologist in the group, because we have to travel 120

> miles to the appts for rheumy and neph, and I do not like to take Rob

out

> of school, so I wanted him to be seen during Christmas break.

> This nephrologist, who had never seen Rob before, made me so mad I

> thought I was going to blow a gasket!

> We did have great news, the Cozaar is continuing to control the protein

> and blood in his urine. We were so happy to hear about that!

> The neph, on the other hand....started talking to Rob about how

> proteinuria damages the kidneys. Then, he says, at some point, Rob

could

> go off the Cozaar just to see if the hematuria and proteinuria would

> still occur. This led him into talking about how he knows that lots of

> patients don't take their meds, and its ok if they do that, and he

could

> take a drug holiday during the summer, and just see what happens!! Rob,

> of course, absolutely LOVED this idea. I was livid! I looked the neph

> squarely in the eye, and said, I CANNOT BELIEVE that you just told an

> ADOLESCENT that its ok not to take meds! He hemmed and hawed around,

and

> then asked me if I was interested in having a definitive diagnosis. I

> told him that Dr. D. was fairly sure of the Alport's diagnosis, and

that

> Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he

> had not even gone completely through Robs chart and I had to fill him

in

> on many things. But, it was like he was out to undermine everything

that

> had taken place! Granted, it would be wonderful if Rob didn't have

> Alports, but the biopsy clearly showed irregularities, and there is no

> other explanation for what he has, other than diabetic nephropathy, and

> we know he is not diabetic. So this guy was absolutely irritating and

> maddening! I have been waiting to calm down (but I find that I just

keep

> getting madder!), I plan to email Dr. D and tell him just how disgusted

I

> was about what he told Rob. It is hard enough to get a teenager to take

> his meds, and Rob also has an exercise regimen he must do to keep

things

> limber (because of the ankylosing spondylitis). He faces his spine

fusing

> in about 10 years. It is imperative that he diligently exercise in

order

> to prevent it fusing in a 'bad' position. Meds are the one thing Rob

has

> been compliant with, but the exercises, no. But at least he is

compliant

> with meds, that is until Dr. 'HELPFUL' told him no need!

> The rheumy did read Rob the riot act about the exercises, so at least

> SOMEONE cares if he is compliant!!

> Ok, thanks for listening!

> , mom to Rob, 15