Note from to Dr. Francomono

[Guest guest]

This is an email I received tonight from Sis to Dr. Francomono. As you can

see, Sis is determined to live, and I'm determined to help and see that she

does. So is Dr. Francomono, thankfully, and tomorrow morning, her family

doctor will see her extreme illness, as well as her determined spirit!

Please continue to pray, as they are much appreciated!

Love Lana 0 :-)

Dear Clair,

I was unable to have my blood drawn today, as my husband came home ill and

could not stay awake to drive me (he works nights, and has a 200 mile per

day commute). I did not feel I was physically strong enough to attempt

taking myself even though my family dr./clinic is a short distance from my

home. I therefore called and made an appt. for Dr. Mark (my longtime

family dr.) to see both Lennie and me in the morning (Friday) at 9:15.

Lennie can then be given a second round of antibiotics for his persistent

bronchitis, and I can let Dr. see me with his eyes and express all of

my deep concerns and physical needs to him. I will also tell him of all of

my conversations and emails with you and your very sound opinion (which I

wholeheartedly agree with). I have never known him not to listen or care.

I believe that him seeing me in person and getting a visual image of my

weakened condition will make the urgency of my situation more meaningful

than me simply trying repeatedly to leave messages with nurses, get my blood

drawn without ever seeing him, etc. At least that is my hope and my prayer.

This physical effort will be costly for me in terms of sheer effort and

willpower and exertion, but I hope to enlist his help more effectively in

this way....and I know that he will realize this when he sees my appearance.

If this effort fails, I will call/email you immediately. My " plan C " would

be to simply have my husband/sons drive me to Baylor ER, and literally lay

there until someone finds the right help for me. I did that once before in

desperation when I had contracted food poisoning....literally went to

Methodist Hospital in Ft. Worth ER and lay there until they found a dr. and

admitted me and gave me proper treatment to spare my life. If I had that to

do over again, I would go to Baylor in Dallas instead of Methodist in

Ft. Worth, as Baylor is far superior in terms of facilities, staff,

physicians/specialists, and organization. I cannot wait longer than

tomorrow to take more aggressive measures, and am hoarding my very limited

stamina towards that end. I am determined to live and to get better. I

have many unfinished tasks here on earth. Again, I thank you from the

bottom of my heart for your kindness, concern and help. You shine as an

example of a caring physician who is willing to become an advocate for a

patient even thousands of miles away. I am honored to know you, and I have

long thought of you as my friend, faithful and true. If I thought I could

physically withstand flying to Baltimore to JHH, I would not hesitate to do

so, and to place my life with complete trust in the very capable hands and

hearts there. I look forward so very much to seeing you in person again,

and to looking into your eyes which I remember being so intent and kind and

to thanking you in person. My sons and I are scheduled to see you in June,

and will gladly submit to whatever will further aide your research. If even

one other human being with a connective tissue disorder and the attendant

horrors my sons and I have faced is helped by this, then that is all that my

heart desires.

I am quietly and calmly and peacefully determined for some positive change

in my treatment and my body to begin tomorrow. I have come too far to give

up.

Love,

Dr. Hays, Nephrologist of Baylor Univ. Dallas

Dear Clair,

I send this also to my sister, Lana, to serve the purpose of asking you

both/updating you both. After you called me back today, I did call Carolyn

at Univ. of TX Southwest, and she said she was expecting my call, having

just spoken with you regarding me. She did say they can see me on May 14,

Friday next, and I gave her as much information as I could verbally relay.

I do, though, fear that may be too long for me to wait for possible more

aggressive/inpatient help.

I have now started to have more nausea and some vomiting along with the

diarrhea, and my pulse is about 90 when I am lying down. BP, depending on

when I take it, is about 144/88 in a lying down position. When I gently

pull the skin on the backs of my hands, it does not " snap back " , but instead

continues to " stand up " . My gums are more white than pink. I realize

these, as well as my persistent thirst and great craving for salt, are signs

of dehydration. I could not take the last two potassium capsules of the

day, as my stomach simply would not tolerate it. I only got 4 capsules of

it down today instead of the prescribed 6.

I will have my husband take me to have my blood drawn here at the local

clinic to check my electrolytes/potassium level in the morning, and will

call you as soon as I know the results. I will make sure the lab

communicates to my family dr. that it is imperative that I be notified and

that other measures must be taken....and that you are being most kind in

trying to assist me.

I did manage to find an address and phone # for Dr Hays by going to

the following link:

wwwbaylorhealth.com http://www.baylorhealth.com/> and then doing a

physician search by specialty. Is this the Dr. Hays you spoke of? :

Dr. Hays

3500 Gaston Ave. (I know that is one of the streets which Baylor Univ.

Medical Center " straddles " )

Nephrology Department

Dallas, TX 75246

it also gave this address and # for Dr. Hays, which I think would be his

office where he sees outpatients (the address is close to Baylor)

3601 Swiss Ave.

Dallas, TX 75204

The website listed several other Nephrologists as well, all affiliated with

Baylor. Should I somehow try to see if I can see Dr. Hays any sooner than

May 14? Is there some other type of specialist I should seek out? I feel

my physical strength fading, and think there is no time to be lost. Please

advise me if you can. I think that my body is telling me that this is

growing more urgent, and my physical strength fails me when I most need to

be my own advocate. I thank you so deeply from my heart for your time and

kindness and concern.

Sincerely,

~LoneStarRose~

(~~)