our Dr. Grubb visit last week

[Guest guest]

Dr. Grubb was wonderful to us, as always. I'll give you as quick a report as I

can.

: Dr. Grubb once again interrogated his loop recorder, and although he

did see several more events which had been auto-activated, he said, " I am not

seeing anything new here, so that is good. Even though the EP study Dr.

Gillette (Cooks Childrens in Ft. Worth) was cut short by the ventricular

fibrillation after 45 minutes, I still have the luxury of the information

(Dr. Gillette) gathered during that 45 minutes. If I didn't have that

information, I'd be more concerned about the events I always see and that Dr.

Pearse always sees on his recorder. needs to increase his Provigil by

another 100 mg, as his body is growing. This will help him not to feel so

lethargic for no reason other than BP drops and, of course, his narcolepsy.

When I say 'no reason', I mean that he is well rested, eating well, and fairly

sedentary. Yes, he is still having BP drops and tachycardia to compensate for

those drops, but the medications I have him on are working to control it pretty

well at this point. I think that we can reasonably agree to have his loop

recorder taken out now. After all, it's been in there for about 20 months, and

there does come a point when there is an increased risk of infection. The

battery will be dying soon anyway. That procedure can be done in Dallas by Dr.

Pearse, which will be easier for all of you than having me do it here at MCO.

It's a big deal for anyone to have a surgical procedure done so far from home. I

enjoyed visiting on the phone with her about , you, and Isaac. I see no

need to consider a pacer for right now. It is too soon. I have found

that many adolescents with POTS slowly improve by their mid-twenties, and I

still want to allow to have more time to see if he is going to be one of

those lucky ones. Of those who do sometimes get somewhat better, boys tend to

improve slower than girls. If and when he considers entering college and the

job market, he will definitely need to limit his choices to occupations which

will allow some flexibility of hours as well as things which are not strenuous.

Nothing will ever change the fact that all of you have Ehlers-Danlos and POTS.

may slowly improve, or he may, in time, progress as you have. Only time

will tell. He is doing very well, but needs to always respect his body's

limits. " He also put on K-Dur (Rx potassium, to replace the over the

counter kind I've been giving him). We will continue his Florinef, Celexa, and

other meds at the same dosages. Dr. Grubb also discussed with his career

aspirations ( truly does hope to be able to become a mortician--which is

very altruistic--I could not do it, but we all have an appt. to keep with one.),

and shared some very interesting things with us about how Jewish people are

prepared for burial which we certainly did not know. Since Dr. Grubb is a very

conservative Jewish man (and physician ), he said that he is one of those who

sometimes is called upon to help with this. I sincerely thanked him for

teaching us something.

Me: Dr. Grubb was not as optimistic about my prognosis. I described to him the

increased frequency of syncope and presyncope I'd been experiencing since last

fall, and told him that I've been battling a sinus infection and flu for

literally months now, just generally feeling bad. I told him that there was a

point last fall when I literally felt like I was dying I felt so bad. He

quietly said, " well, that is what dying feels like....you just sink, whether

it's fast or slow. " I also told him that I had begun to have some syncope which

had absolutely no warning, and which resulted in two mild concussions and two

ambulance rides to the local hospital. I told him about my potassium level

recently dropping as low as 2.9, and that Dr. Heller has put me on Rx liquid

potassium. I further shared with him (as well as sharing with him many of

's medical records since his last MCO visit) all of my medical records

including physicians' progress notes, etc. from every dr. I've seen. I shared

with him what Dr. Heffez and my Dallas ortho, Dr. Callewart, say about my spinal

cord impingement and congenital narrowing of my spinal column and the possible

surgical intervention. Dr. Grubb was very concerned about this, and said, " I

want to see you have your spinal cord decompressed sooner rather than later.

The longer you wait, the greater the risk of your cord being permanently

damaged. It probably makes little difference in the long run whether you have a

posterior laminectomy or an anterior fusion. The end result will still be good,

and you cannot avoid this issue. Don't wait too long, really. Wear the

cervical collar all the time until you have this taken care of, no matter who

looks at you and asks dumb questions. Tell them it's an old war wound. Since

you have several opinions and options before you to consider in getting this

done (Dr. Heffez in Chicago or Dr. Callewart in Dallas), take into consideration

how difficult it might be to have a major surgery done far from your home. You

will probably be hospitalized for at least a week, and flat of your back for

quite awhile. It will also be a major ordeal to travel for follow up care.

However, you won't really go wrong no matter which of these doctors you choose

to proceed with. They are both very reasonable men. I know Dan (Dr. Heffez),

and of course, Craig Callewart has actually been inside your neck before when he

did your first fusion. He did a good job with that, and knows your medical

history. In view of this issue, your increased syncope, and the marked decrease

in the density of your bones...particularly your hips...I'd really like you to

consider using your wheelchair more of the time, and certainly using your cane

or walker even inside your house for stability. Continue the liquid potassium,

and have the level checked at least once a month. I'm going to increase your

Provigil from 50mg to 100mg, and let me know if this helps any with your energy

level. You are passing out more because you are slowly getting sicker.....your

Ehlers-Danlos is just wreaking havoc with your autonomic nervous system, which

is just getting by as it is. Your body just can't keep up with all you want to

do. Try to choose activities and trips which really mean the most to you, and

don't over extend. Try to avoid traveling to places that are icy because of your

risk of falling and fracturing something. That is very easy for you to do. You

push your body too hard, and it just can't keep up. Take good care of yourself

and rest when you need to. You must live well in order to live long. Don't do

things that can wait or that others can help you with. I know that you have

grieved at the loss of your teaching career, but working is not something you

can do again. Go to counseling if you feel you need to in order to help you

accept your own limitations. It is very hard to be chronically ill. You are

seeking out and getting excellent medical care from a variety of specialists for

each illness your EDS is causing, and that is all anyone could possibly do in

your position. Take your Proamitine in between your Florinef more often. I

suspect you are not taking it when you feel weak and like you're going to faint.

(He's right, I haven't been). " Dr. Grubb also told me that he would strongly

recommend that any surgery which I have in the future should be done with the

anesthesiologist NOT using the " routine procedure of 'slam-dunk' " , but instead

to treat me the same as any person with a diseased heart (though mine is

technically not diseased) and " take you down by stages...and have various life

saving drugs laid out on the tray that they don't routinely lay out...because

your autonomic nervous system just can't respond like other people's. I'll put

that in my progress notes. "

As always, Dr. Grubb was infinitely kind, compassionate, and patient. He spent

nearly 3 hours with us, and never acted like he was in a hurry. In between

discussing our health issues and meds, he also made pleasant conversation about

other topics, and even shared with us that his sister-in-law is stricken with

muscular dystrophy and his brother has taken her all over the country in search

of the latest treatments...but she worsens despite all efforts. He even told us

that he told his brother, " Barry, no matter what you are saying to me, you are

NOT ok....you need counseling to help you cope with this and to help yourself

help her. " I promised to remember them in my prayers, and that kind physician

thanked me. I gave him greetings from my wonderful friends Gopp,

Price, and Leilani Bautista-Keene, and he smiled with modest pleasure. As

always, I was greatly blessed and humbled to be in Blair Grubb's presence.

Love,

~LoneStarRose~

(~~)

----- Original Message -----

[Guest guest]

In a message dated 2/15/04 8:34:30 PM Eastern Standard Time,

waltzacrosstexaswithme@... writes:

<< As always, I was greatly blessed and humbled to be in Blair Grubb's

presence.

>>

Hi ,

Glad to hear you all had such a productive visit. Not happy to hear you are

going to have to have surgery You keep hanging in there girl and know I am

always thinking of you and praying for you and your family. Take care.

Hugs,

Sue