I finally got IVs

[kathygirl]

Well what a story to tell.  About 5 or 6 weeks ago we went to see Dr S. in Ida Grove, also met Sharon that day.  He wrote the protocol on a prescription pad for Iv antibiotics as well as oral minocin. We then continued  to Myrtle Beach for a holiday. I was feeling weak and tired in fact spent the whole time in bed lookin out the window.  AAfter about 10 days we arrived home.  I went to see my scleroderma doctor and told her how I was feeling and that my blood pressure was going up.  Long story but eneded up being admitted to hospital. My blood pressure went to 215 over 100.  I was given medication to lower my blood pressure  and it is almost normal again.  Meanwhile my hemoglobin fell to57. I got a piccline and then had my stomach cauterized again.  I was given weekly iron infusions a dose of EPO and now my hemo is 74 and climbing.

The best news is the doctors here have finally let me get IV antibiotics.We showed the doctors here the protocol from Dr S and while in the hospital I was given my first 5 days of IVs and am on the oral antibiotics now. The doctor is arranging for the local health authorities to come to my house to administer the next IVs.   

I am so hoping this helps me, because if I have good results the doctors will be more willing to use it with others. If the results are not good they will never agree to try it again.

I am feeling weak, tired, dizzy and have muscle and joint aches. I think I am having a bit of a herx.  I am trying to be patient waiting for changes to start happening. I keep pinching my skin wondering if it it softer. Its only been about a week since i finished my IVs but gosh it hard to wait.   

This is my story will keep you posted how things go. Kathy

edited by RBFV to remove doctor's full name, thanks for understanding.

[Kim]

Gosh, Kathy, you have been through the wringer.  I am so sorry, and so hoping you'll notice some improvements before long. 

Take care…..kim

[Mumof3]

Hi Kathy, I responded to you on the scleroderma board as well. Just want to say I am sorry you were having problems with your blood pressure and hemoglobin. But I am glad you have it under control now. That's great news about the I.V.s. I'm assuming it was your rheumatologist that approved it? I am so happy you finally have access to the I.V.'s and hope and pray you will start seeing some improvements soon. Take care!

[mkbeeliever]

I have been wondering about you!!!  I am so sorry you had such issues!  But am so glad you are on your road to recovery!  I am not a dr. but I am hoping you are on an ACE inhibitor for your high BP.  Just wanted to throw that out there.  Glad to hear from you Kathy! Blessings to you and will be anxiously awaiting good reports and keeping you in my thoughts and prayers!

Michelle

[mschmidt]

Kathy,

I, too, am sorry you've been through so much.  I'm happy that your doctors gave you the iv's, and are ordering more for you.  I know from my experience, I felt pretty good after my 1st round of iv's, then about 4 weeks later, started herxing really bad.  Mine lasted a while but, everyone is different, and my skin was super tight.  I'm just about back to normal–only my hands are a little tight, and the corners of my mouth a little tighter than normal.  (but, even those areas are MUCH improved to what they were before)  My local IM doctor who signed off on my iv's from Dr. F was VERY skeptical about the orders but, gave me the benefit of the doubt, and now is completely giddy and amazed at how well I'm doing.  He said I look completely normal to him, and he'd never know I was sick.  My new home healthcare nurse came to start my iv's yesterday, and had to look at my chart and me several times to see what I had because I don't look sick at all.  When I told her I have SD her reply was “NO WAY do you have SD, I've seen SD patients and you look nothing like them.” (she didn't see me a year ago;))

The iv's have done wonders for me, and I can relate to not being patient about results.  I kept trying to pinch my skin constantly, and eventually, I was able to see it soften right before my eyes.  Stay positive, and you know that all of us here will keep you in our thoughts and prayers.  I'm wishing you a speedy recovery, as well as hope you see improvements soon.

Maria

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