View Full Version : Visit with Immunologist

08-27-2009, 10:07 AM
Thanks for all the prayers and good thoughts/vibes my sweet "wehavelupus.com" family. The appointment went really well and I think we may actually find some answers this time. Maybe. After that visit I had with the hematologist, I'm not getting too hopeful. On one visit she was an angel and the next....well, it made hubby and I wonder if her evil twin took her place. I know, no practice is perfect, but you all know what I'm talking about, unfortunately. Feet stay on the ground!

This doctor visit was very different than any I've had. She held my hand and talked to me sweetly. She looked at my husband too while talking, including him in the conversation. We were there for 4 hours and I was called back as soon as I arrived there. She plans to call an expert on HAE and discuss all her findings with him later to get his opinion. I can't remember his name, but he's at Duke U and she said he practically wrote the book on hae. And when the appt. was over, she asked to pray with us before we left. She kneeled down and held hubby's hand and mine. When she finished, her nurse that was with us asked to pray with us too about something else. Things were mentioned in the prayer that there's no way they could have known all of that. It was specific and she quoted a scripture that my husband read the other day that he had been meditating on. Something that just grabbed his attention and he's been going over it in his mind ever since. (Jeremiah 29:11 for those interested) He's just recenlty stepped into his spritual walk, so that really blew him away. It wasn't a first time for me, I've been on this walk since 1991, but it was a first that a doctor on the same walk took the time to pray for me, my family, and that God would help us find answers and healing. It was very touching and encouraging. She and her nurse had tears to wipe when it was over too...we left there feeling more encouraged than ever...but I'm trying to keep my feet on the ground best I can. But it was different than any doc visit I've had yet and I feel encouraged. Her bedside manner is awesome. She said other words that nearly made my feet leave the floor..."and after we finish that, we'll decide on a treatment plan for you." HALLELUJAH! Music to my ears!

Not a whole lot was performed since it was the first visit. They did do allergy tests on me which I've never had before and it wasn't too bad. I found I have moderate allergies to some tree and grass pollen which didn't surprise me. To hear I have an allergy to kitty cats did shock me. I nearly cried but I relaxed when I was told it's very mild. I hope this isn't a new development and/or growing...I've never been allergic to cats! I think I'd know if I were. We had a pet bunny years ago. We had to find a new home for him because I knew I was allergic to him without a doubt. I still miss him too!

Anyways, she wants to talk to the rheumy who found the C1q esterase inhibitor deficiency aka HAE aka Hereditary angioedema. And then she'll call the doctor at Duke and talk to him. Then she'll decide if she wants to look into that further with her own testing and will call me about it. She said she doesn't think I fit in the HAE dx and the things she shared about that scared me further about HAE. But from what I understand she thinks this is something autoimmune, no doubt, that could have produced those results of the HAE findings. It could be there and then again it could be there but not enough to harm me.

For those interested in her explanation about that...and from what I understand, (I had to ask for more than two explanations from her and she patiently explained it) whatever Ai thing is going on in my body...those antibodies could have attached themselves to protein cells instead of the inhibitor cells like they should have, and caused enough trouble to show up in the blood test, but not enough that I officially have HAE. Which would be wonderful news if that's true. Then again, it could be the start of a much bigger problem. Not that lupus can't cause some serious stuff, but hae causes throats to close shut just out of the blue and... that scares me to death.

I'm trying to stay encouraged but...a big part of me is terrified about this because of my throat issues, not just with trouble swallowing but... there have been nearly a dozen episodes in my life (that I can remember) where, while eating or drinking, something went down the wrong way which sometimes happens to us all, but during some of those events, while coughing from the reaction, I felt something going on in the back of my throat and then I couldn't breathe no matter how hard I tried. A doctor years ago told me it's a spasm reaction that causes ( I can't remember what it's called) the flap in the back of the throat to shut for a while. He said it was nothing to worry about and if I relax during those episodes, the flap will go back and breathing resumes. No real science was done about it.

Since the same thing sometimes happens to my grandmother I didn't worry too much. The doc said the worst that could happen would be that I'd pass out but I would be fine. He gave me some pills to put under my tongue should it happen again to help relax it but they didn't help much. I've learned to just relax myself when it happens, fight the urge to cough and react as usual to those "spasms", and eventually I can breathe right again. It hasn't worried me much...until recently. The doc I saw yesterday told me the least little trama can cause the HAE reactions and... I'm trying not to think about that, but I can't get it off my mind. I try to distract myself but...

I'm fighting those "what if" feelings and I hate this emotional roll. I see the GI doc about my throat in less than 2 weeks...to set up an appt to have the scope down the throat procedure. That alone has me nervous and what he may find makes me nervous.

The doc yesterday says she feels I don't fit in the dx because of other factors which do seem to point to lupus. So that offers some comfort. She said this seems like an evolution of lupus or any of the many AI diseases. First she wants to find out if I have hae or not which I'm very happy to let her do. I see her again in four weeks though and that's a long wait. I doubt the GI doc I'm seeing has even heard of HAE. I've been through some long waits, but this one already feels too long. I'm trying to not be too hopeful and not be too worried and wow... what a mix. I feel so whacky!

I'm going to see my pcp tomorrow and fill her in on all of this, get a refill on my pain med, and beg her for any treximet samples she may have. I need to let her know the neuro appt was a waste of time and set up an appt with another neuro. The neuro guy branded me with "common women's migraines" without doing the science and didn't even address the pain in my feet which I feel can't be connective tissue issues. Nothing I've tried helps with that pain. Not even the decadron shots.

08-28-2009, 09:38 AM
Wow, what a mix of emotions from reading your story. On the one hand, it is so refreshing to have a doctor who listens, answers questions (even when asked twice), who holds your hand and actually acknowledges your husband. She is, definitely, a keeper :yes:. I have NEVER heard of a doctor and a nurse praying with a patient! That is absolutely a new one for me and, to have that prayer touch on subjects that they could have known nothing about..even more miraculous! Isn't it wonderful to hear a doctor say,"and after we finish that, we'll decide on a treatment plan for you." Yes, that can be music to our ears, can't it.
I know that you do not want to get your hopes up too high, but it must be a comfort knowing that you have a doctor who cares and who wants to help you and who cares for your family also.
Know that we here at WHL also care deeply for you and are always here for you.

Peace and Blessings

08-28-2009, 01:33 PM
Oh Abbasgirl!!!! I am SO HAPPY FOR YOU MY FRIEND!!!!!! Im doing my WOO FRIGIN HOO dance because im so excited for you!!!:excited::wiggle:

08-28-2009, 09:03 PM
Abbasgirl -
I am so happy to hear that you were blessed with this doctor! I hope that God blesses her work and she is successful at finding the answers for you.

08-29-2009, 02:46 PM
Saysusie, it was a new one for me too. I've been to doctors that are Christian...but it was the first that offered to pray. I'm hoping and praying this is the beginning to a wonderful doctor/patient relationship heading towards healing!

Jeanette...it's so good to hear from you! I hope you're okay.

Hey Sandy, how've you been?

My primary doctor visit went okay yesterday. She told me to try the topamax but she said the script the neuro wrote was incomplete. I had no idea you have to build it up in the system. So she re-wrote his script. She told me it takes up to 2 weeks for it to start helping and it may not help with these "migraines", but it's worth trying. She said people lose weight while on it, so hey, if I get nothing else out of it at least I can lose some lbs. Yeah!

But I'm thinking of asking the immunologist if I should wait on taking it. If she wants to run tests later, I don't want to take anything that would mess with that. I'll call her monday and see what she thinks about it and go from there.

(((((Hugs)))))) everyone!

08-29-2009, 04:26 PM
I think it's a good idea to check with the immunologist before starting. never know if it will affect the tests she wants run.

Thanks for asking. I have been really good. Just busy. Have had a few ughhhh days lately, today being one with my stomach, but still marching on. My oldest niece started college yesterday on her 18th bday and I went to Philly for a going away/bday party last weekend. Spent today cleaning in a way that hasn't been done in months b/c FINALLY I am feeling better from the surgery and the flare and my energy levels are up again. My kitchen is so clean right now you can practically eat off the floor. My brother and his girlfiend are coming to spend the night on the 1st and want to have the place shiney clean by then. How's your weekend been?