My 2nd visit to the NIH went well - I ended up staying a total of 4 nights there over a weeks period of time. My bone marrow came back before I left and I do have Indolent Systemic Mastocytosis at about 15-20%. The exact numbers will come with the full report I should get when the CKit mutation stuff comes back from Harvard.

Overall everything went as well as it could. The BMB was easy because they knocked me out with versed and fentnyl. I had no reaction to either except they knock me out pretty much - not just the conscious sedation they were going for LOL. They got a good sample. Dr. Wilson said some indicator in the aspirate led him to believe I will have the CKit mutation but I can't remember the name.

Based on the medical history of the last year they had a GI doc come up and talk with me. Because I have breakthrough heartburn/stomach reflux even though I am on Zantac and Prilosec I qualified for another study for tests. So my initial visit was on Wed - Frid - instead of being released and having to check back in the following week I was let go on a "pass" with a promise to come back if anything happened. So I enjoyed a day and a half before I had a reaction - Not sure if it was the Bruschetta, the heat in the Smithsonian, the extreme cold or a combo but I ended up sick as a dog. I didn't use my epi pen when I should have because of the reaction of my mom and nephew.  Thats another story. On top of the impending doom feeling while in the bathroom I got my hives like I had over the summer - went back in early Monday morning. It was actually Presidents Day so Dr Wilson saw them in person when they were 2 days old - I had shown him pictures from the previous episodes. He believes I have some type of vasculitis but isn't sure what or why - he asked me to get them biopsied the next time it happens. Right, ok.

I was pretty much out of it all that day because of the reaction but on Tuesday they did an endoscopy, again with versed and fentynl. ( have no idea how to spell that) You should have seen the anesthesiologist what he was given me and he said a narcotic and a relaxer and I named the drugs. I told him I had to know - since we knew I could tolerate them it was important to make sure they were the same thing. Again I went out like a light - I remember one part of it but thats it. My esophagus looks fine, so does my stomach but I don't have much stomach acid. Based on the test I did the following day they want me to do a Bravo test (again, right, no insurance) to see why it takes my stomach so long to produce acid but then it acts up.

They switched my meds up a bit and put me on Allegra in the AM and kept the Zyrtec in the PM trying to help with my exhaustion. Unfortunately the last two weeks I have been even more tired and had no appetite. I switched back to Zyrtec this morning because of it and ended up coming home two hours early with a reaction to my lunch.

The hardest part for me was actually being told I had ISM. I guess I always hoped I was just crazy or something. In fact the resident who told me was very kind, but he though I had already been told. When Linda came in (whom I love btw) and said everything looked great, and I replied "but its in my marrow" she said "but we all knew it would be Susan" I was kind of like "but I didn't want it to be". I'm still struggling with that aspect. I guess basically I am depressed about it.

My iron is also low - I haven't started taking the iron pills they gave me. I know this is long - I have been meaning to write for a long time and I am surprised I got this far. I am going to go lay down and take two more Benadryl. I have to work tomorrow.  Bluck. I'm sure I left things out - but thanks for reading if you made it this far!

Hi Susan,

I'm really glad you shared your experience with us! Thank you!   Yes, I understand your grief, for that is what you are feeling, grief.  You are grieving for what you had hoped you had, perfect healthy - that healthy body you used to have.  And yes, it's a shock to hear the words formally declared now.  Our minds want to scream out and say, Well then FIX IT!  And this is one time when there's just no fixing the problem.   Yet, you knew it all along, Sue, and although it would be nice if they could say that it was all in our heads, but would it really be then?  I mean, isn't it just horrible having someone accusing you of being off kilter and that all that you are going through is just "dramatics"?   I mean, how good is that?  Emotinally and mentally I'd rather have people believe in me when I say I'm sick than have these looks of Yep, there she goes again!, wouldn't you?

Don't grieve, Sue, don't be sad, this is NOT the end!  It's not that you've been given a death sentence and it's not a cancer that your life will be shortened.  Having that diagnosis, that confirmation as to what it is really is a liberating thing for whether or not you've got the diagnosis you are sick anyway - the diagnosis doesn't change that.  But what it does change is the way that people look at you and treat you and also as to how you allow them to treat you as well!   Instead of always having these doubts surrounding you, you can say, Sorry, I do have this chronic disease!  However, what you can now do is stir up people's admiration for you in how much you are a conquerer and overcomer in how you deal with your chronic illness.  You can allow it to take over your life, or you can relegate it to the corner of your life that choose to give it to.  It doesn't have to take over, but you can learn how to live a good and healthy life and gain control over it, especially now since your doctors know exactly what they are working with, they will continue adjusting your medications and getting things right until you feel as though this disease is only one more facet of your life and not the whole thing.  I can't tell you how much better I feel after having my meds more adjusted!  I feel as though I have a life again and I've been able to return to my school and my work and teach and run the school with a new attitude and outlook and even though I still go home tired and needing the bed, I'm able to function and live my life once again!  Last year at this time I was totally unable to do this!  I was doing nothing more than filling a chair!!!

So, although they are small victories, Sue, they are still victories nonetheless!  You need to see this for the victory that it truely is.  You're sick, you knew that.  But it's best to finally have it oficialized so that people can understand not just your circumstances, but also your behavior.  It actually clears the air and the way for IMPROVEMENT!!   You'll see, once you get over this shock, you will find that many things will change for the better, trust me!!!

One of the first benefits, Susan is that YOU HAVE NOW PASSED THROUGH THE WORST PHASE!   Congratulations!  You are now past the most difficult phase of our walks as masto patients, that of getting a diagnosis!  Things will greatly improve from now on!!!

So, Susan, what you and your family need to do is to throw a Diagnosis Party!!!  Not celebrating that you are sick, but celebrating that finally they have put a name on it and that phase of your life is finally past you!  This is a GOOD thing!

I'm only partially diagnosed and I can tell you that I am planning on having a nice big Bar-b-que celebrating it when we finally get my full diagnosis in!!  I've got another BMB to do and some other exams as well!  So, I plan on celebrating the END of the SEARCH when we finally get those tests done and in!

So, don't get depressed, Susan, but celebrate!  CELEBRATE LIFE!!!!!

Thanks all.  I just read your post on grieving Josie. I guess I am in the Last 2 stages.  Trying to reclaim my life, but the new version.  It's funny but seeing the team at the NIH was like going home. I know they get it. Even if the joke is I  different than even most of their masto patients because my spots are different etc.  Even when I got a brief " lecture" on not using me epi pen when I should. Dr Wilson, Linda, Daly and all the nurses are awesome. It's coming home that sucks to be blunt.

I know we have to advocate for ourselves, that is how I got this far. But I am tired, no weary, of it. I will keep on because I have no choice but it sucks.  I want someone near me to say " this is what you need" or "I understand" even if they don't.  I am blessed with friends who care and give me support but I feel very alone in this in my real life. My mom was with me  and was able to ask Dr Wilson all the questions she wanted to so she would understand. But if you arent living it, you just can't    Don't misread this. I, too, am a type a personality who hate needing people to do for me when I have always done for others. I'm not good at taking help. But I'm trying and trying to understand my new life and how to be "normal" or the new normal. I am definitely not medicated  correctly right now and I am frustrated beyond belief  with it.  

Beautifully put Joan!!! Hey! I just was able to justify not making the bed! There is scientific proof that bedbugs have a harder time surviving in beds that are not made !!!! A made bed can hold in the darkness/moisture from the sleeper. A non made bed is exposed to light, dry air, etc and its much harder for the lil buggers to survive. Of course this is totally paraphrased in Sandi language!

Hiya ,

meds wise the things that jump out at me is that you aren't on a mast cell stabiliser . ketiofen is used by many for this before gastrocrom ( sodium cromgualte )

Also , zantac can resasonably be 300mg twice a day . most of us are on this dose . esp if we have gastro problems

You didn't say your singulair dose 10mg twice a day is a good starting point

When you are having a reaction , you need a plan fo r medication and a plan for your local ED . I imagine you have seen the blank look when you have mentioned masto

Allegra was too corn flour rich for me . In terms of reacting it may well have been the journey etc . Allegra comes in liquid with you , so maybe trying it that way . many of us have to sneek new drugs in in low doses so our masties don't notice and gradually increase the dose .

I am also a recovering type a . I love the bed bug thing It has taken me time to not try and get stuff done . I know i cant ( BUT ) !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am doing better with domestic help as I am not having to sit amoungst chaos xxxxxxxxxxxxxxx

You are right that you have to live with it to really understand .  It has taken time for my family to really get it . They love me and try That helps .

For a while i felt I could " decide" when to have my Epi pen and i was ignoring my serious symptoms until It was very late . It was my only control over it. One time the parmedics told me to use it sooner than i would ahve and it worked and I was less sick overall and recovered quicker . So , I got it xxxxxxxxxxxxxxxxx I am not Epi happy now . But I know when im sick and i trust that feeling . That way I can keep myself safe

How are you doing with sussing your triggers ?? As this is the biggest way you , can reduce symptoms it took me a good while to find mine but now i have I am avoiding a lot of reactions

hugs
Josie

Hi Ramona,

Last year I had to pay for my own travel.  I believe the first visit is dependent on the patient and then if they are asked back the NIH pays for travel.  I could be mistaken, however, so I would double check with Daly or whoemever you are in contact with.  They may be able to do full transportation if you explain your situation.

My mom was able to stay at the lodge there as well this year.  It was free except for her meals, which the guest is responsible for.  She said it was quite the nice place. Visiting hours are very lax so she could come and go as she pleased.

The 2nd study was under the GI center - testing for stomach acid and reflux in people currently on drugs to stop it, but are still having issues.  I don't have the name here at work - I'll try and find it at home tonight in all my paperwork.  Its actually a much longer study than I was able to do - I was glad to do the extra 2 days with them but they do up to 5 some times.  They like masto patients for that study because of the GI issues.  If I can't get the Bravo test they would like done here locally I may call them back.  I know in my heart I can't get it done because I have no insurance but I guess I will check on price anyway.  

Let me know what you decide - I really like Dr. Wilson and his staff - What does the IA study do?

Susan