I apologize to all for such a late update. Unfortunately, our family has been under great trials and sorrows these past few months.
But, i do want to share how much i loved NIH.
First of all Dr.Druey and Celeste are wonderful, have great sense of humor, and made William and i feel very welcome there. Also, who played a big part in this was a very sweet woman who worked with us via phone and email to make the arrangements for our stay. (for the life of me, i can't remember her name). Brain Freeze. I had an awesome nurse, who was so sweet and motherly, and quickwitted as well.
All in all the entire staff, who were in charge of testing, discussions, and explaining procedures were some of the kindest people we have ever met in the medical field.
Each one would always offer their cel-phone number to reach them if we had any future issues or questions.I've learned over the years,that that's about the last thing a physician wants to do- is give you his personal cel number, and i respect that. But, i thought it very generous of each one to offer it without being asked.
Oh, and the food is great! Because there are so many ill patients on chemo and other types of treatments, they try to provide a very diversified menu, along with 24 hour service of any cold food and very late into the evening for all hot foods.
Let me just say the wheat berry salad was great. And i did have quite my share of lemon ice. Almost scandalous, really!
I had bloodwork drawn, a urnine test, and an MRI of my heart, (which is not a very common procedure), but they explained that one of their SCLS patients had something different with hers so they wanted to check and see if that might be a common denominator in this disorder. Fortunately, might came back fine. Unfortunately, by chance, they found a blood clot just outside of my central port which would then travel to my lung if it were to move.
We had already left Bethesda when Dr.Druey received the report, and were now in D.C. touring. Because, NIH does not have an ER, i would need to check into the nearest hospital immediately. We went to the George Washington Hospital, only a few blocks from our hotel.
I was ushered in immediately and all MRI records were promptly sent from NIH to the doctors now assigned to my case. They chose to put me on lovinox to prevent more clots from building up behind the present one. Ultimately, the body has to break it down and absorb the clot itself.
We left the port alone, using only iv method for my current ig treatment. Last week, radiology pushed in a dye through my port and then i could watch on the screen while the radiologist explained everything to me.
Great news- the clot is gone! I will continue to stay on lovinox for about two and a half months to be on the safe side. I don't mind really, it's so worth not having to worry about.
As for my ivig treatment we tried flebogamma, the first was privigen. Both were given over a 5 hour period and my doctor chose to cut my dosage ratio in half. Unfortunately, twelve hours later, and two trips to the ER, i was admitted because of the pain. It lasts 3-4 days, and because i was dehydrated and potassium was low, they kept me until bloodwork looked good.
We plan to wait 6 weeks from last appt. rather than 4. My doctor has agreed to give me solumedrol prior to ivig, and cut the dose in half again, but still over a 5 hour period.
If this does not decrease the violatile reaction i have, we will start with a different brand, that Dr.Druey's collegues have suggested.
As difficult as it is for me, the first two weeks after ivig, i begin to reach my stride by the third. It is not till you feel like your old self again, before you realize that you do not have to live feeling sick, tired, and depressed the rest of your life. IVIG does make a difference!
I urge any of you who haven't, to please take part in this research program. Our participation is necessary to find a cure. I believe IVIG will keep me in remission from SCLS.
Insurance companies are becoming more aware of this auto immune disorder and are more than willing to try to lower their costs as well as yours. As an outpatient, i buy my own ivig and bring it with me. This costs me only $90. Contact a case worker from your insurance co., who will keep up with you on a regular basis. They make suggestions others might not have thought of yet, and they encourage you to be your own advocate. Peg has been instrumental for us to encourage creating a team of doctors to all work together. So far, so good.
After D.C. i made a choice to no longer reside in a place of grief, bitterness, depression, and guilt. I want to live and i can live a full life with my faith and the ivig i greatly needed to make me feel healthy again. God bless you, friends.