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In shock - literally and figuratively! (Read 4552 times)
gnbailey
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In shock - literally and figuratively!
05/04/11 at 06:29:53
 
Well, I guess I am in the middle of what you all call a flare.  I was given a quick diagnosis of IA and I had been OK on the antihistamines but for the last 2 weeks I have taken a nose dive - very unstable.  I saw my allergist for and he thinks I need to be worked up by a Hematologist - I totally agree!   He has referred me to a Hematologist here in Dallas at UT Southwestern Medical Center - our research hospital.  The Hematologist takes care of all masto patients in the area BUT he cannot see me until June 9th!  I really don't think I am going to be able to maintain myself until then!  I am in SHOCK!   Angry

I am still waiting to get results back from the Carcinoid blood work but the urine for 5-HIAA came back normal.  (The doc did not call me with the results, I had asked for my first allergist to fax me my chart and the results happened to have been sent to him.  He never called me when he received them!)

So frustrating - not to mention scary!!

Thanks for listening,
Gaynell Smiley
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jbean
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Re: In shock - literally and figuratively!
Reply #1 - 05/05/11 at 10:20:52
 
Sorry to hear you are going through this.  I just went through this a few weeks ago.

Can you talk to your allergist to see if he can get you into hematology earlier?  Maybe let them know how unstable you are?  It is worth a shot.
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Lisa
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Re: In shock - literally and figuratively!
Reply #2 - 05/05/11 at 11:29:35
 
Hi Gaynell,


Don't be in shock, sweety, this is, I'm afraid, how it is.  Some of these doctors don't get too ruffled and in a way, they've got a point.  You see, Gaynell, hematologists deal with some pretty deadly stuff out there and if you're not working with a cancer, then they figure you can wait your turn.  And if you do go and put masto on the same line as lymphoma or leukemia or another blood disease or cancer, they are right, it's really a very benign disease and you're not in need of urgent care.   Well, up to a point.  

You see, unless your hematologist really understands masto, and the anaphyactic end of this, he's not going to feel too concerned about your situation cause if you're not showing aggressivity and your doctor hasn't spoken personally with him informing him of the urgency then he's not going to think it's so urgent.  He'll just chock you up to being yet one more freaked out patient and hematologists deal with almost nothing but freaked out patients!!  They tend to develop a rather thick skin, like oncologists do.   Until they find themselves or one of their own in that spot, they don't really know how it feels to be on our side of the desk!!!    One of my doctors saw his wife die from pancreatic cancer and he fully understood my fears when I was having to push my way towards the operating table for my open heart surgery!  He knew well what I was going through cause he'd only lost his wife 18 months prior to my being his patient!!  So, he helped me a great deal to find balance in the midst of it all.

So, Gaynell, take this as a bit of comfort in a way, for if your case were really dire your doctor would have personally contacted that hemotologist pressing him for an immediate opening!!  

Yet, here's also part of the mentality with doctors....they have plenty of other patients who are in just as much need as you are for attendance.  Everyone has a personal reason for why they feel their case is more urgent than the next guy.  However, as the doctor, he knows whose disease is indeed more pressing and he will give priority to those patients who need it.  Yet, his thoughts are these, even with his own patients - if you are in a bad spot and you REALLY are in an emergency THEN GO TO THE ER!  

It isn't that the doctors are blowing us off,  Gaynell, they are only being realistic about it all.  They must give priority to the cases which are urgent and deadly and the rest just must wait their turn.  My hematologist has a wait of over 2 months if I want to see her and even then, she's mostly useless since she's so lost in treating me!!

I remember hearing a comment made of one marriage counselor to another in that the one said to the younger, less experience counselor that it took more than a day for that couple to get their marriage into the shape it got into and so if it took them this long to get there, waiting just one more day isn't going to make a difference!  The younger counselor was creating problems within his marriage because he would get phone calls from clients who were fighting in the middle of the night and would insist that they needed him to help them!  Well, after that advice from his colleague, the younger counselor woke up to the reality of the situation and began to tell his clients that they would have to work out their fight and see him in his office instead.  (The money wasn't worth what it was doing to his own private life and marriage!)


So, Gaynell, it isn't that the doctors don't care - they do, but unless your doctor feels that you are in real danger, they often won't try to open those doors so quickly.

Now, don't think I'm not understanding how bad your attacks are, but even this is something that many of us learn to put into perspective.  I had one masto patient who was in this for over 20 or more years come out and tell me, Look, Lisa, if you've not died yet, then you're probably not going to any time soon!!   And you know what, she was right!  In the beginning those episodes of mine freaked me and my family out, now, after they have seen how some of my reactions are and we know what is going on, they aren't so phased and neither am I.  Yes, it's anaphylaxis and it's not a picnic and the POTENTIAL is always there for it to get bad.  Just listen to some of Ramona's episodes and it will cause your hair to stand on end cause she's had some really close calls.  But for the majority of us, we have lesser degrees of reacting and even though it's scary as all get out, they are still not always life threatening and this is because our reactions are not IgE mediated usually.  We have different degrees of anaphylaxis and so we may not have the severe life-threatening reactions.  They freak us cause we've lost control of our bodies, but with time, we learn that perhaps all that freaking is not so necessary and we learn to calm down and ride the wave until it's over and then return to our somewhat normal lives.  

So, Gaynell, I'm truly sorry for all you're feeling and going through and I hope you can get to see the hematologist quickly, but be patient, it's only 3 or 4 weeks away and you'll see him soon!!!   When I tried to set up an appointment with my dermatologist, her secretary told me only after AUGUST!!!   THAT 4 MONTHS FROM NOW!!!   Gosh!! Undecided


Lisa
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Riverwn
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Re: In shock - literally and figuratively!
Reply #3 - 05/05/11 at 16:02:31
 
Hi Gaynell,
Another thought here... you were referred to that doctor but do you know anything about him? I might suggest you go to S D Anderson Hospital where they have experience with mast cell patients--they even do research studies like NIH does there. I googled the hospital, mastocytosis and doctors and here is a name that comes up in every link--    Hagop M. Kantarjian, M. D.  He seems to have a lot of experience with mast cell diseases and he runs most of the masto research projects there. He has quite an impressive profile here;
http://faculty.mdanderson.org/Hagop_Kantarjian/Default.asp?SNID=150059961
Hes in Houston so you might try calling his office and seeing if you can get in to see him. (Say you were referred by your Dr, they wont refuse a referrel).  Either way, let us know how you are.
Good luck!!
Hugs,
Ramona
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gnbailey
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Re: In shock - literally and figuratively!
Reply #4 - 05/06/11 at 12:02:48
 
Hi guys,

Well, I feel very blessed!  Persistence pays off, yesterday at the end of the day I called the Hematologist's office again and they had an appointment available for this morning!!
He is at UT Southwestern Medical Center, our research hospital here in Dallas.  He is doing some blood work:  Sed rate, IgE, another tryptase, high sensitivity C reactive protein, Deaminated gliadin AB IgG, and endomysial AB IgA.  After getting these results, next week, he will decide if the picture leads him towards a bone marrow biopsy or not.  He did say that he would consult with the other mast cell doc, Dr. Gruchalla, and together chip away at a diagnosis.
He did say that the 15 pound weight loss was due to an increased metabolism rate due to the heightened state of reactivity I have been in.
Have any of ya'll had that drastic of a weight loss when you flare?

Ramona, thanks, I was also trying to get into MD Anderson but they said that I had to have a diagnosis of cancer to be treated.  I know that there are several masto docs there and I will continue to try if I don't end up with good results here.

Thanks again all for your help and advice!!!  This forum is SUCH a lifesaver!

3 days without needing my epi!!!   Smiley

Gaynell
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Joan
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Re: In shock - literally and figuratively!
Reply #5 - 05/06/11 at 13:41:27
 
When I first started having degranulations, but before I'd seen any specialists, I lost 12 pounds in a couple of weeks (I weighed about 115 before the loss).  At 5' 4" tall, I looked like I had something really scary, and I did, but I didn't find out for many years after that!  I had cut my diet back trying to figure out the triggers that I was sure were food allergies, so that accounted for some of the loss.  I also know that with the constant tachycardia, adrenalin pumping, and histamine flowing, the onset of the reactions were also a cause.  Once I got on helpful meds (doxepin at that time), the weight came back.
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Re: In shock - literally and figuratively!
Reply #6 - 05/07/11 at 02:28:29
 
Yep, just got through with the weight loss thing.  Lost 8 lbs in a week and a half.  Wondering though if a lot of it was water loss from dehydration, as I fattened up again soon thereafter!

A cancer dietician advised me to have a LITTLE extra weight, just in case I have something like this happen.  In general, people with chronic conditions do better with a little reserve on them.  When you have a neoplasm, it's not the best idea to be stick thin for this exact reason.

When I get really bad, it seems to help me to drink Ensure.  That way I get the nutrients without activating the gi too much.  I am not allergic to soy, so sometimes that helps.  I also drink Pedialyte when I get like this to keep the salts and sugar in me and keep dehydration at bay.
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Re: In shock - literally and figuratively!
Reply #7 - 05/07/11 at 02:43:58
 
Hi Gaynell,

Yes, when I first got ill, I lost about 20 lbs in 4 weeks. I looked great (as in I like the really skinny look), but who cared since I was too sick to go anywhere! LOL
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gnbailey
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Re: In shock - literally and figuratively!
Reply #8 - 05/07/11 at 05:14:47
 
Yeah, this weight loss is so weird to me!  Normally I would be so excited to have lost this weight - but I guess my "normal" is now a thing of the past.
I truly cannot believe how quickly everything has changed for me!  This disease - whatever my final diagnosis ends up being- has changed my life overnight!

My daughter is an actor and we spend a lot of our time flying back and forth between Dallas and Los Angeles.  Now, I have now idea if that is going to even be possible for me!  She has a film that she is shooting starting May 24th and I don't even know if I am going to be stable enough to even get her to LA!

I just need to learn how to deal with all of this!
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Joan
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Re: In shock - literally and figuratively!
Reply #9 - 05/07/11 at 07:44:25
 
The most important thing is your health and to get you stable.  The stress of flying back and forth between Dallas and LA can be grueling!

Is it possible for you to line up someone to fly with her on the 24th in case you can't go?  Even if you are well enough, just having a back-up in place could relieve some stress for you.  A lot of college students will be off for the summer by then, or maybe another relative or friend would be willing to go until you're okay.

If you can't find someone to go with her, your doctor might be able to prescribe some extra meds to help you get through it.  For example, my doctor told me to start 10 mg of prednisolone a few days before I leave on a trip, and to continue it until I get home.  You don't want to do that very often or for months at a time, but short term, it might get you through.  Of course, that was just an example, and you should ask your doctor what to do.  

I also asked mine what the maximum doses of H1 and H2 antihistamines are so that I knew what I could take if needed.  BTW, regarding Allegra, most people take the 180 mg. time release.  They shouldn't be broken, by the way.  The 60 mg. are not time release, and they may be split.  The maximum dosages are really high, so do ask the doctor.  You may need more than normal or a round of higher dose prednisolone to break this flare.

Good luck!
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Joan
 
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Re: In shock - literally and figuratively!
Reply #10 - 05/09/11 at 08:14:57
 
Hi gnBailey!
Congrats on the days free of reaction--youre learning!  Remember with the slightest reaction to grab an extra antihistamine--try not to let it get to the level of using your epi IF you can. If that doesnt work, take your emergency prednisone--call the DR and make sure he knows you did it. A one time dose doesnt have to taper off--less than 5 days on,  no tapering ok... tthat will take over an hour to take effect but that should make that reaction stop flat. iIf not or if you have throat swelling  or trouble breathing, Dont wait--hit with your epi and call 911... Youre doing Great!!

Joan GREAT advice there!!
love ya
Ramona
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