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Posted 4/5/2010 2:19 PM (GMT 0)
Ok first of all I want to apologize for being AWOL.  But I have good reasons for being lost.  Most of you know my husband has been ill and is a trooper still working 70 hours a week without much of a complaint.

Hes allergic to CONTRAST!!!  Man o man that is going to be heck from now on.  He had a series of tests over the last month and one test he came home and started to turn red.  smhair   By the next morning he had welts all over his body.  Hmmm couldn't figure it out.  Until the next week he went in for another scan.  This time the reactions was INTENSE.  Its been a week now and everywhere he had welts are now flaking skin like a bad sunburn or a snake shedding his skin.  So after steriod injects, steriod packs and steriod cream he's on the mend.  Plus the itching and pain that went along with this was insane!  So no more contrast! 

So far they have found out, He has a growth on his adrinal gland, hemotologist/onocolgist says it look textbook noncancerous. But this last scan will give him alittle more detail on it to see if we need a biopsy or not.  Which could be the cause of some of his hormonal defiencies plus a part of his major fatigue.

He has to go in for a sleep study but the sleep doc already told him he has it.  The cause they believe is his tonsils.  They are three times normal size. They even said his vocal cords are strained.  Thank god he hasn't been performing on stage since his shoulder surgeries.  So Tonsilectomy here we come.  So Sleep Apnea is another cause of his fatigue.

Regarding his elevated Red Blood Cells.  He had a complex test done that took 5 hours to check his oxygen in his blood.  Found out it SUCKS!  The man is oxygen starved plus his blood is severly dehydrated.  Doc believes hes part of a small population that needs blood letting done on a regular basis.  EWWW so midevil!  They better not bring out the leaches  skull

Plus the DX still stands on the Fibro, can't seem to explain that one away.  They believe his time in the desert triggered it.  That is one complex sydrome if you ask me.

Ok thats his update

Laurie

 

Posted 4/5/2010 2:34 PM (GMT 0)
Laurie
Your Husband doesn't have "Rendu-Osler-Weber disease" does he? Also if your Husband has sleep apnea, let me know I am more than familiar with having Sleep Apnea, and for some it can be a very difficult task in adjusting to PAP treatment! Anyway I might be able to be of some help to him!

Good Luck to You Both!

White Beard
Posted 4/5/2010 3:05 PM (GMT 0)
Whitebeard you will be the first I will email when the sleep study is over..lol You are the forum expert on this subject..lol I have never researched Rendu I will look into that when I get home from work tonight.

Laurie
Posted 4/5/2010 9:57 PM (GMT 0)
Laurie,
It figures this was the second post I went to so now I understand White Beard's comments on your other thread!

I'm so sorry to hear about your husband and his reaction to the contrast. I know my cousin just went through a whole bunch of tests prior to her surgery for breast cancer, and they found a cyst of some sort on her adrenal gland and she had to go back for more testing. Everything was fine on that end for her, so hopefully the same will be true for your husband. He sure has enough other things on his plate to deal with. Sounds like it's starting to pour there?

Ok, but the blood letting thing? smhair Maybe we shouldn't have joked about the vamps so much? Yikes! (I hope you don't take this wrong; I know it's serious but it's kind of interesting that we've broached this subject in other ways, isn't it?)

I'm still sending hugs to both of you. And wishing for nothing but the best of healing. yeah

PaLady
Posted 4/5/2010 11:55 PM (GMT 0)
Laurie,

If your husband needs to have "blood letting" done, can he just go to the Red Cross and have them siphon off a pint? Sounds funny, but... if that's possible, then he could help out at the same time. Just a thought... :-)
Posted 4/6/2010 2:21 AM (GMT 0)
PALady you are so funny yes it has to be related to all our talks about Vampires. But remember I still have the first season of True Blood so when you want to sit and watch them just holler.

Beth you must run with PALady..lol I wish he could give blood but he was in desert storm first time around and they say he can't give blood due to the contact he had with chemicals. But is he could of done that it would of been a great idea.

Laurie
Posted 4/6/2010 4:23 AM (GMT 0)
I will put in a vote for White Beard's knowledge on CPAP. That's how I met him is on a CPAP forum because of my hubby. Hubby was not going to go along with this 'crud' and wear some stupid mask to sleep at night. And he even put on the brakes over the sleep study. He said it was all some sort of voodoo that is conjured up to have the latest 'disorder'. This is a very educated man but it isn't something most people would choose to have to do.

When I went to that forum it was White Beard who answered my plea for help. He offered to and emailed my hubby to share his thoughts on the subject. Hubby said he got the email but I don't think he ever responded. BUT...he did get his CPAP unit, used it sparingly at first and now for about 6+ months uses it all night, every night. One thoughtful email from White Beard inspired him to help save his life...his apnea was that bad.

Thanks WB!
Chutz
Posted 4/6/2010 4:29 AM (GMT 0)
Sorry to hear your husband had such a bad reaction the the contrast, but at the same time I am relieved to hear about someone else who has the same issue I do.

Every time I get an iodine based contrast I too turn a bright red color, though I have so far avoided the welts, but a few days afterwards my skin also peels just like a sunburn. Of course the doctors all look at me like I am crazy and try to pawn it off on as just a bad flushing.
Posted 4/6/2010 1:03 PM (GMT 0)
Chutz I so understand where your coming from.  My husband is one tough cookie mentally and physically.  After I told him Whitebread said he should be able to keep his CDL license (which he rarely uses, hes a logistics supervisor) he googled (or had me) and found out he can still keep it as long as he follows all the rules.  For then he will be safer when he does get behind the wheel.  He only drives on rare occasions when someone is sick and they can't frieght out. Then when he went away on business he had to drive to become a trainer in the Smith System.

Jim so far the doctors have all looked at him like hes sane.  All of them say he highly allergic to contrast..lol  But I'm sadly glad someone else has peeled like a shedding snake..lol

Laurie

Posted 4/6/2010 3:54 PM (GMT 0)
Dear LLPLUV , hI I guess i started coming here while you were dealing with the serioyus challenges you mention .I hope your husband is doing well and you as well .Good luck to you friend Laurie ! Mikel
Posted 4/6/2010 7:48 PM (GMT 0)
Laurie,
Glad you were still able to smile at the vamp reference.

I didn't realize you were a mod on another forum. I thought you had just disappeared. sad But now that I know I will contact you when I finally get that DVD working (ok everyone, don't laugh, I have had a new DVD player sitting in a box for a year now! rolleyes ).

Ok, putting together Beth's idea and True Blood and your hubby's situation...do you think we have a basis for our own novel? Or the next season of True Blood? I mean, we could be on to discovering a new way to kill a vampire! idea True Blood from veterans who once again want to defend their country by selling their blood - with chemicals deadly to vamps - on the "true blood" exchange! smhair shocked

Now everyone knows how crazy I can be. yeah

PaLady cool
Posted 4/6/2010 9:11 PM (GMT 0)
Laurie


You know if he does get a sleep study done and depending on if he has sleep apnea and how severe it is. Being treated for it could very easily fix allot of the problems he has been having. Sleep Apnea can cause High PB, and diabetes, nocturia, night sweats, and a whole host of other problems. The myth that it is only middle aged over weight men that snore, that have sleep apnea, is exactly what I said, it is a myth!!!!. You can be any age, male or female any weight, fat or skinny, and you don't even have to snore to have it! ( most people that do have it, do snore, but you don't have to!) and there are 3 major types of Sleep Apnea, OBS Obstructive Sleep Apnea, Central Sleep Apnea, Complex Sleep Apnea, and one type can ( note I said "can") be caused by using opoid pain medications! So if your on pain meds you might be more prone to have a certain type of sleep apnea! ( Central Apneas) So if you are tired allot and maybe find that you are constantly getting up in the night and going to the bathroom, and or you partner, is constantly nudging you and telling to breath, or that your snoring to loud, or you wake up choking or gagging, maybe, just maybe you should see your doctor and ask about having a sleep study done! There is more to sleep apnea than just snoring, it can kill you, directly or indirectly!

Sorry Laurie for getting on my soap Box and doing a little preaching, on your thread. But if your husband does have it, getting it treated might fix a whole lot of things for him!



White Beard
Posted 4/7/2010 12:41 PM (GMT 0)
Your not on a soap box...lolturn   Many of the thing you stated he does deal with. Night sweats was a new one, hes always had severe night sweats and no doc have ever had an answer for that one they say to use a fan. smilewinkgrin  

We are finding out between the Sleep Apnea and the growth on his adrenal gland they are causing havic in his body.  The fatigue goes with both. 

I always wonder why there are so many Myths running around about Sleep Apnea.  As you have noticed people react so negatively to even checking for it.  It has way to many stigmas attached.

Laurie

Posted 4/7/2010 12:48 PM (GMT 0)
PALady you are so funny   yeah yeah yeah yeah

You have a great plot idea!!!!  yeah   I need to tell my husband that one when he gets home, he has the same sense of humor as we do. smhair

I was also AWOL for my forum.  Amy my co-moderator took care of it for us when I was gone. 

Get that dang new DVD player hooked up.  nono  Can't believe you have let it sit in that box so long.

Laurie

Posted 4/7/2010 1:15 PM (GMT 0)
Laurie, you have had to deal with so much! I just want to see you get to feeling better and your husband doing better before you start worrying about they Kidney Forum. But I am glad that you let us know how you are doing! Please keep us posted and as always, you and DH are in my prayers!
Posted 4/9/2010 8:21 AM (GMT 0)
Hi Laurie:

You are not the only one that has been MIA as of late. I have been also, but I think about you often and am glad to see you posting again. I'm so sorry that you and your husband are facing so many health challenges.

I have a SCS, so if you have any specific questions, I'd be happy to try and answer them for you.

Take care,

Lorie
Posted 4/9/2010 9:08 AM (GMT 0)
Hi, bluejet!

Hope Laurie doesn't mind that I say hello to "the other Lorie". It's been awhile since I've seen you post. Catch us up on a separate thread if you want to.

PaLady
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