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Reply with quote  #31 
Hello, my name is Tammy I am a mother of an 8 year old girl who has recently began vomiting about every 10-14 days.   She becomes very nauseated, usually at night or early morning, vomits usually once goes back to sleep.   I am curious if anyone has ever heard of  a mild case of CVS?  From what I have been reading most of the time it is multiple times and very forceful.     I began to notice this in November, but brushed it off as a mild stomach bug, but in December I noticed it to be about every 2 weeks so I began tracking and sure enough it is usually day 11-14.   Symptoms are the same, I can't put my finger on one trigger, she doesn't really complain of a headache when it occurs.  She does have a constipation problem.   

I appreciate any information any of you can provide.

Thanks
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KRSYNENA

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Reply with quote  #32 

Hi there, you may want to post on the main forum it is geared towards more pediatrics  cases.. this forum is geared towards adults,although alot of us go back and forth bc information applies to all but you may get more replies over there.. ok sorry for rambling.. my daughtrer has mild eopisodes of cvs but only in comparison to others.. she has more frequesnt attacks...once a week and goes to once a month but she only is sick for 3-4 hours and vomits about every 5 min during this time.. i guess some consider that mild and she has the migraines and the abdominal pain alot.. i dont know if that helps any..feel free to email me.. has she had any tests done??


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Reply with quote  #33 

My name is Candis Martin! I am 23years old and have had CVS since I was an infant. I was diagnosed with CVS  by the Mayo clinic when I was 12, after every test and visits to to alot of doctors! Although CVS usually turnes to full blown migraine's after adolescence,it has not turned into that with me.  I still have full blown episode's of intense nausea and vomiting. Even though I have been diagnosed with CVS for awhile now I still have a hard time finding a doctor that knows much about it or who will dare to treat it. My mother has spoken to Dr.Fletcher who recommended Dr.Olden and we actually drove to Alabama  to see Dr.Olden who treated me to stop an episode with *mg of lorazapram slow push with a IV drip!  It worked with in a week my episode stopped! But I continue to have episodes! Dr Olden is a great doctor but, is too busy to be able to help someone out of state with CVS. Not to mention It gets very expensive to make special trips out of state to been seen by these Doctors when you are having an episode. I have tried to find a doctor in the state of Texas that can treat me and knows how so I can live somewhat of a normal life, but so far it has been ineffective. I recently saw a doctor in Dallas that knew nothing about CVS, but I was desperate to have some one help me! He asked me what  Wanted him to do? I told him about the treatment Dr Olden did. He agreed to try it but added in another drug he wanted to try with it, I had a bad reaction to it. It has not stopped this episode and I am unsure If I should go back to him or not! I am not speaking bad about any doctor. I know that not many doctors know how to treat this and are unsure of doing so because they don't know much about it.   If any one knows a doctor in Texas that knows how to help me maintain this please let me know? I am currently in a cycle! I need help!



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jessever

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Reply with quote  #34 
Hi Candis, you are my non cvser sons age, so you surely have my attention!
Have you called the CVSA office for a Texas referral to someone already treating CVS , andrecently?  There might be someone.But since you live in Dallas,have seen a couple of CVS specialists and must have records to share, whats wrong with the doc you just saw in Dallas?He asked the  important question-what do you want me to do?I like that a lot.And most docs dont know CVS, theyre all still learning, all over the world. They all read the same guidelines and medical articles you can find here, and take an educated guess on what to do for you. Fleisher said:just find one who cares.Then they call the long distance specialists, no traveling in episode. So educate him.(Iwrote a bunch of posts in october and november 07 about this, to some newbies, its working for me.) The meds are hard to sort out for each person, the illness changes over time,  and you end up-so stressful-being one of the experts here.Put  Fleishers 41 Adults  articles and the  empiric guidelines at his fingertips, hell read it.Oldens office has a great article he wrote with  a chart of all the preventive/rescue/hospital meds used in CVS. (Ill try to link it for you, Idont do that well.)Dont cut Dallas Doc loose yet, unless you  just dont like him.He could be a gem, seems to be  asking,trying..
 But Im concerned you keep cycling, do you have any rescue meds? Do you sleep and wake again nauseous? Are you alone?Let us hear from you.
Sorry to give you chores to do when youre sick, but its a texas two step:you send him important stuff to read from the world of medicine,  then call him for an appt. in a few days time, he reads up,he can better help you each time, soon it gets better-though for  our chronic disease, its never fixed,just managed.(Theres  actually an old,old joke that this is why its called "practicing " medicine)
Hope this helps.Good luck,a warm welcome, keep posting.



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Jessica- 60,Monterey,California, diagnosed last year.
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Reply with quote  #35 
Jessever,
Thanks for your help and concern. I guess the only reason that I am unsure of seeing the doctor again that I saw is that he wanted to put another drug into the adivan mix, and when it didnt work  and I had a bad reaction to the other drug, he said that it couldnt be that other drug that he put in it. He said that we may need to cut back on the adivan!  That scares me that he is so confident to treat me but wont use the treatment I gave him the empiric guidelines from Dr.Flecher! It also makes me nervous to teach a doctor how to treat me. I am currently not on any meds but pherengen and lots of liquid vitamins! The doctor I saw did give me IV fluids when I was in the hospital for the adaivan treatment  Monday Jan 14. I do not have any rescue meds and I am not sure what those are. My nausea is so random. I wake up in the  middle of  the night and ill be nauseated and throw up, or ill get nauseated in the night or in the morning and throw up. I am currently in a cycle where I am getting sick at least once every other day. I am constantly fatigued and the nausea is so speratic. I have a good job in Downtown Dallas and I am in fear of loosing my job because I keep getting sick. I show up to work sick and they send me home. I resently threw up in the office trash can infront of the office staff. It just hit me and I didnt have time to go to the bathroom. I was so humilitated. I dont live alone, I got married in March07. I feel bad for my husband having to deal with me and all this stuff so early in our marriage. He has been patient, but feels helpless he doesnt know what to do. I cant really talk to him about all my feelings and discouragement with CVS because he gets frusterated he feels that he should be able to fix it! I am so glad I found this website. I have not given the doctor the 41adults article by Fletcher. I might try that.
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Reply with quote  #36 
Quote:
Originally Posted by Horanimals
Your name: Who is the CVSer in your family and what is their age? Please tell us your story, and how you came to be here: In my current or ‘previous life’, I am/was a:
Greetings: My name is Deborah (SoSoSick) I am 52 and have been struggling with this illness for about 10 years w/out a diagnosis until 2 weeks ago. I went through everything that you guys have written about; drug seeking and the fact that I'm on narcotics because of severe back problems gave them plenty of ammunition. I was either seeking/going through withdrawal or it was all in my head because my back problems robbed me of a lucrative career and disabled me. Once I took a chance and went to a primary first who promptly put me in an ambulance, told the EMS people that I had a drug problem and when we reached the ER they put me in a holding cell for 6 hours and left me pleading for help. I've also been diagnosed with epilepsy which means that even if I have a good day, I still can't leave the house so I see very little of anything but the 4 walls of my bedroom. I am certain that I have CVS but... I have severe sweats & chills simultaneously, as well as weeks after each episode, that are so debilitating that I have to stay in bed, huddled under towels that my dear husband recycles for me as he does the sheets, etc. The bed underneath me is so hot that it feels like an ironing board and the chills are so bad that as I am sweating I also have chill bumps. Lately my CVS is so bad that I can't really verify a cycle. I have been sick this time for 7 weeks so far. Out of those 7 weeks I've had 3 very good days w/o any symptoms which is a God send because I lie in bed questioning myself as to whether I am really this sick or am I being lazy. I've been in bed for so long that when I get up to go to the bathroom I immediately get light headed and feel like I'm going to pass out. I have to sit on the side of the bed for a minute before I move. Then the sweats and chills become so bad that I run back to the bed to get back to my towels. I have been known to fog up cars and once even our entire house. I know that sweats and chills are some of the symptoms that Dr. Fleisher mentions but my question is, has anyone else experienced these symptoms to this degree? I'm trying too discern whether or not I have another issue. Rest assured this has nothing to do with menopause. I would desperately like to know if anyone else had experienced these symptoms with CVS that are this severe. To all, I wish you the longest recovery phase possible.
SoSoSick
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Smokeater42

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Reply with quote  #37 
Deborah, mine are like yours, i don't leave the house except for Dr's Appts. and i do as many of them my phone web cam or Emails as i can, i cycle every 2 to 3 days and am on 23 different meds, this gets pretty old after awhile, i have been fighting this illness from hell for over 15 yrs
Hope your feeling better and welcome to your CVS Family
Heave hoooooo
Smoke

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When you have CVS life is one puke after another
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Reply with quote  #38 
I honestly couldn't believe it when I ran across this site last night. My wife was suffering from this when we started dating back in 1995. I don't think she has had a period of 90 days without a major episode since we married. Some of the episodes have lasted two weeks. We spent most of August and September 2004 at Mayo Clinic in Scottsdale and they never even mentioned this syndrome. Same thing at Loma Linda in 2005. No mention of CVS. I'm absolutely shocked by this. I am also greatful to have found this site. 

She is recovering from a 5 day episode right now which required a 7 hour ER visit last night. I'm going to let her speak for herself here when she's recovered from the massive Ativan/Phenergan/Demerol coctail that was necessary to bring the vomiting and pain under control.

This disease has worn us both down considerably over the years. I sometimes think I see the hope in her beautiful blue eyes start to fade and it scares me. The misery (including fever, sweats and chills) she is suffering breaks my heart.  I'm going to continue to do whatever it takes to help her as long as we live, but it seems like we have hit so many dead ends and the nonchalant "there she is again/drug seeking" attitude we had received occasionally at the local ER here has caused me to raise some major hell down there which hasn't made me very popular but I couldn't care less. At least when they see us coming in they may not always be glad to see us, but they do pay attention and she gets help. They know that they can't just put her in a room and let her twist in the wind for three hours. Thank goodness for this forum. Reading the posts has brought some hope.

________________________________________________________


Hi, My name is Amy. I just woke up from an all night ER stay and am loaded with Demerol,ativan and phenergan so please excuse the spelling and grammar errors. I actually do have a 157 IQ, but you wouldn't know it after the fog I'm in today. In desperation, my husband stumbled across the CVS web sites hoping to find some sort of answers and hope after over 11 horrific years of agonizing bouts in the ER. I suffered from mysterious episodes of agonizing abdominal pain and uncontrollable retching on a sometimes weekly, monthly or bimonthly basis. No ER doctor had a clue what was causing these episodes. I was accused of drug seeking, off handedly diagnosed with post traumatic stress disorder, sent to shrinks of various kinds, sent to rehab and then a pain management clinic in California, prescribed at least a dozen different kinds if antidepressants, anti anxiety medications and even had a hysterectomy at age 35 in hopes that it may relieve some of the pain. Due to this illness, I have lost several jobs and am currently unemployable. Luckily, I am also a graphic and fine artist and can generate at least some income at home. We have spent hundreds of thousands of dollars in medical bills to no avail.
My husband and I went to the Mayo Clinic twice and was sent home with no diagnosis and no hope. The next drastic step was to find a surgeon willing to open me up like a Thanksgiving turkey in hopes of finding some obscure disease. However, I'd dwindled down to 87 lbs. was dependent on narcotics to control the pain and was at too high a risk to undergo surgery. At one point, I went to see an allergist who put me on Prednisone and daily shots hoping for some relief. I even went to see one on the top Neurologists in the country with no relief. I suffer from profound depression because I have been through the medical mill as you can imagine. At one point, even my husband turned on me accusing me of not doing enough to get help. I even sought holistic medicine, acupuncture, massage and a host of other therapies desperate to get my life back. Needless to say, suicide crossed my mind many times. I even had a secret, lethal stash of narcotics as a last resort in case I got to the point that death looked a whole lot less painful than life.
After looking into some CVS websites, it was like looking at my reflection in the mirror. I realize that there may be no cure, but CVS is a medical syndrome and I am actually not crazy or drug seeking . I am a human being in
desperation, agony and, until now, completely hopeless. Now I know that there are thousands of people like me who have been through the mill as well. There is hope and understanding. There are doctors who know about CVS and who understand the profound agony people go through.
The retching and pain are only part of the suffering. The real suffering comes from the medical profession and the ER staff who look at you like some sort of freak just out for a quick fix. The ones who leave you for hours in a dark room retching and moaning. The ones who ignore you for so long that your veins shrink from dehydration and they end up sticking you over and over to get an IV in. I have had to wait for help for so long that they had to put an IV in my legs and later in my neck. Had they taken me seriously, all of that could have been avoided. I have wretched so violently at times, I started vomiting blood. THAT finally got their attention but I nearly had to die to get the timely help I needed.
If there are any other people out there who know the agony of CVS or have some advice, Please contact me. I feel so alone.
Currently,we are trying to make a trip up to Missouri to see Dr. Fliescher to see if he can help. I live in Durango and it's a long trip but I hope it's worth it. Wish me luck! 
Yours Truly, Amy the Hurl Girl 

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Reply with quote  #39 
Hi, my father has had CVS for the last 31 years however he was diagnosed only a couple of years ago. He is now 70 years old and is in the midst of another episode for which he has already gone to the ER and been hospitalized for several days (and is still sick).  He's had more episodes than any of us can keep track of and has had a variety of tests and "treatments". It's bad enough for someone to have to go through what he has, but it compounds the injustice  to have to deal with ignorance and inappropriate care. We're very hopeful that he now has a doctor that will be able to help him.  I've talked to him about info that's posted on this site from time to time and he is very interested in other people's experiences. He takes comfort in knowing that his symptoms are not unique, however it pains him that other people are also suffering. 


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mahler1987

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Reply with quote  #40 
Candis,
You keep saying you had a bad reaction, but you don't describe what it was.  Could it perhaps have been an expected effect from the medication.  Dilaudid ... a pain med often used with ativan in treating cvs causes some weird feeling effects intially, demerol or morphene too.
Zofran, phenergan or compazine.. are  antiemetics used in treating cvs.

Sounds like you have a physician who is willing to try and treat you.  Physicians can consult with the medical specialists such as Dr Fleisher free of charge and help develop a working treatment plan for you.  Don't be dissuaded simply because he is trying to help.

Keep in mind if a patient has no known allergies or sensitivities... how can a physician be held accountable for an undesirable reaction to a drug.    Was it an allergic reaction, a sensitivity , a side effect, or don't  know.

Pattie

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I may have CVS but CVS is not me.
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Reply with quote  #41 
Hi everyone,

First and foremost, I may have posted here a while back (November 2007) after my next to last relapse (just finished one, at least I hope it's done) so if this information is old news, please disregard.  Then again, it may have been to the CVSA so, anyways...

My name is Marc and I'm a dad of 2 great little boys aged 2 and 4 and the husband of a wonderful wife.  I start with this since these are the only things that keep me going when I'm on my 4th or 5th day of non-stop vomiting.  At that point, you can usually find me anywhere between my bath and my bed, sometimes right on the floor and I'm happy to not have to explain why, you are all very aware of the exponential effects of time.

My first memory of this was 22 years ago when I was 18 years old.  I was on a trip with a friend and we had gone out the night before.  I had a few drinks but nothing close to excess (more lack of money than intent I'm sure) and had some food before hitting the sack.  I woke up the next morning vomiting and of course I chalked it up to booze and bad food.

We were staying in a hotel at the time so I told my friend to go on without me and visit his family and friends (he had just graduate from the RCMP).  When they came back that night, they didn't like what they saw.  They pondered flying me to Fredericton by helicopter (we were in armpit NB at the time) since driving at this time was out of the question.  They got me some Gravol (very good response to nausea and helps you sleep) and whatever else they could think of.  After the second day, we had to drive back home and I wasn't feeling any better.  We happened to drive through a snowstorm the whole way back, drifting on and off the road, my worst fear was my friend losing control and ditching the car while leaving me the only conscious one to save the day.  A kitten could have easily mugged me at that time so moving myself and another grown man was not very likely!

We finally made it back and I figured it was food poisoning.  It wasn't until a few months when the symptoms started coming back and, upon feeling any nausea, I would always take a Gravol and go to bed.  It would work 80% of the time which was great but now, it's about 20 or 30%, still something to try but no longer as effective for me.  I still take it every time but the 20-30% success rate was in regards to stopping it before it took its toll.

Since then, every trip I take, event, major outing, I worry.  I was so terrified that it would happen on my wedding day (imagine canceling for that) that I smoked pot in the early AM to heighten my appetite and hopefully diminish the chances of it occurring.  It worked well and I was fine by the time the ceremony started.  I'm not a drug user but when it came to my wedding, I had people from all over N.A. just for this event, I couldn't let this happen.

I have had too many episodes to mention but they seem to be getting worse.  I had a good run of 5 years without anything but as of November 2007 and last Friday, my luck ran out.  I just discovered CVS and I'm so happy to know that it's something tangible that I can share and learn about.  As awful as this may sound, it's good to know that others suffer as well just for a point of reference although I would never wish this on even my worst of enemies.

It's now having an effect on my marriage, my wife being stuck with the kids, trying to keep them quiet so that Dad can rest.  I actually had my mom bring me to her place to let my wife deal with the kids without having to deal with me.  I can see how angry she is when the symptoms appear and of course, that doesn't help my little psych mechanisms and stress filters.  I'm feeling better today but she acts as if I wronged her badly and that it's my fault.  I should watch what I eat better, deal with my stress better, exercise more, etc., etc., etc.

Anyway, It's good to know you are all out there somewhere and I hope I can provide some helpful information as well.  I look forward to reading all your posts and perhaps picking up a few tips (and maybe give a few) that will help out.  Until then, keep your food down and your chin up, tomorrow is another day!



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Reply with quote  #42 
HI I just joined the forum yesterday, I dont to be too lenghty, I kinda have more questions than enything.
well first about me I have a husband 2kids, one with autism, the other bipolar. One dog and 2 kitties.
about a year ago I went in for testing because it was thought I had ulcers, since I did when i was a child. The edg showed a hernia, which the gastro is not worried about. Even at theis time I still felt reletively fine, they started me on protinix for acid reflux, yes it helped a lot. but come july is when I hit rock bottom as if it was overnight. I  couldnt eat anything, couldnt keep anything down, this when on for a few  months, was phenrgan, reglan. Oh yeah they did a test to see how fast your stomach empties, and mine was very slow, so i have to reglan. I just saw him(gasto) last week he said I have gastric paresis. what is the difference between this and cvs?
In total from july til about thankgivivng I lost 40 lbs. and can only eat certain foods or I will get verysick. I have mangaged to put 20 lbs back on by eat more of the foods that I can tolerate, Im not very knoweledgeable about this disease, and would really like to why it felt like it came on all of a sudden?
On day fine, next day not? Imean i was fine, I did have theheartburn, but the protinx helped that, the vomiting came on suddenly. It has slowed down a bit this year so far. ANy how thats my story and help would be greatly apppreciated thanks so much....Sheryl
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Reply with quote  #43 
Hi everyone!

I just wanted to say hi and let you know a little about myself well my name is justin Im 25 years old,I have a wife and two kids. I've been sick going on 4 years now I didnt get a diagnosis of Cvs until JANUARY OF THIS year,up to this point I have been having my attacks on a daily basis, my dr. wasnt sure what the cause of my nausea and vomiting was coming from they had diagnosed me w/ barrettes esophagus,esophagitis, a hiatal hernia, dysmotility syndrome,Ive had my gallbladder removed in 12/07 and a bleeding blood blister in my small intestine.I have severe bouts of dehydration along w/ steady weight loss. any info that could be given to help in anyway would really be appreciated. i also take zofran,phenergan,protonix,morphine anyone heard of that combination for treatment with cvs. thanks justin25
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Reply with quote  #44 
Hello friends,
       I'm so relieved to have found the CVSA website and this message board, on behalf of my daughter, Kelly age 27, who has suffered from this mysterious illness since she was a little girl. 
       As a loving mom, living 3000 miles away from her, I worry about her constantly, and feel so helpless when she is suffering from an attack. Finding this site and a "real name" for what she suffers from, will be a wonderful source of help for us both.
       She has seen several doctors, and has had all the gastro 'icky' tests, and I think she's been accused of being a hypochondriac or drug seeker as well. I hope she can find a Dr. in the Minneapolis, MN area that's aware of CVS. If anyone knows of one, email me, please.
        As a child, Kelly always had a nervous stomach. Whenever something really exciting was coming up....Halloween, parties, fun camping trips, etc. she'd be nauseous and throw up, but then she'd be OK after that. She also had severe abdominal pain when she had the stomach flu. She's curl up fetally and wimper, "owie, owie, owie" for hours on end. I was clueless in how to help ease her pain, and I'm sure on occasion, I thought she was exaggerating just a bit. Now, in her adulthood, I feel awful that she still has the severe pain when she's nauseated. 
       I think things got worse when she started college and got very stressed about big tests. She sets very high standards for herself, is a perfectionist, and has always been an exceptional student from K-12 gr. and beyond. I've noticed, after reading several posts here, that that seems to be somewhat typical in CVS sufferers.
       To answer your "meet me" questions;  I'm 48 yrs. old, married to a great guy, and mom of 3. Kelly's my oldest daughter and I was a single mother until she was 10 yrs., before I married in 1990. Then we had Ethan 14, and Elizabeth 12yrs. They are all the joys of my life!
     Elizabeth did have an episode/anxiety attack one time, which reminded me of old times with Kelly, but she doesn't seem to be a repeater at this point, thankfully. As far
as inherited illness possiblities go, Migraines and BiPolar Disorder is on my mother's side. I suffer from SADD (living in Alaska, winters have only 5-6 hrs. of daylight) and some anxiety issues as well. I am also extremely sensitive to motion. I always take Bonine for flights, boats, or trains, and I absolutely cannot go to a surround theater, or watch my kids play "Guitar Hero" or racing games on TV. If your CVS kids play these video games with lots of motion, I'd think about it possibly being a trigger of episodes in your child.
      Thank you all for your open discussion of this mystery illness. It is a miracle that I found you!
  I hope you Feel Better!     Tammy (momofkelly)
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Reply with quote  #45 
Hello my name is Tralena and my husband has CVS. I didn't know about this website until real recently. When my husband was first told he had CVS I couldn't find any helpful information about it. His mother said he was always sicker than most children he would throw up before sports games and other events. He would also miss more school than her other children. My husband and I started dating when I was 16years and we have been together for 9 years. We have only been married for 4 years. His CVS was really really bad when he was 17 years old. He lost so much weight in 3 months I think it was 60 lbs. Any ways I am getting to that age that I want children, but I keep getting scared. I need so much more information but every thing I find says it is based on each individual with CVS and although the signs may be similar it affects each differently.
Things will be tolerable and then he ends up in the hospital again. He just tore his esophagus the last time and was in the hospital for days. I would like to mention it was Valentines day. The doctors were really worried he would get an infection and they would not be able to get rid of it. They had us on the surgery floor just in case it wouldn't seal on its own. He also managed to get an air pocket in his chest. The nurses kept asking him if he was stabbed by a knife, because they had only seen the injury he had from stab victims. He managed to seal off on his own and no surgery they said it was life threatening and had him on IV's with antibiotics, potassium and saline, respiratory treatments every 4 hours and so so much more. Usually when we go into the ER he gets released a few hours later after Iv's and nausea medicine.
For the last year and a half he has been trying to get himself better at home with out going to the hospital because he was taken off of insurance and we can not afford it. He has been vomiting blood for at least a year and a half off and on now. The last ER doctor before this hospital visit said it was just stomach lining and he would be fine. So my husband refused to go when he would see blood. I have been a nervous wreck for so long now.
I know I have been going on and on now, but I do have a question.
Will we be able to ever live a normal life? Is there any thing that someone has found that helps better than most that we may not know about? Also my career is starting to take off and life is good excluding the CVS. If we decide to have children (my dream) will they have CVS and what are the odds?
If any one can help me have a clearer understanding I would appreciate it.
Thank You for your time.
Tralena
PS Sorry for the book
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