Posted 18 November 2008 - 03:11 PM
I guess first off I should mention that I am more than thankful for having the honor of being able to come here and share with each and every one of my fellow sufferers.
I think you all understand what I am trying to say. That's what is so wonderful about having this site to come to ~ you know in your heart of hearts that everyone here understands where you are coming from. Much unlike the people we have to interact with in our routine lives. I've had some pretty unfortunate experiences these past weeks. And now...well now I need to just get it all out.
Some of you know that I have a condition (caused by Scleroderma) called G.A.V.E. I really don't know the exact words connected with the individual initials (Gastro A... Vascular Ectasia) or something very close to that. At any rate, it's fairly rare in "younger" individuals I am told. I was told that this condition has been seen in "elderly" individuals (i.e. 80s, 90s) and there is not much done about it as the individual is expected to pass away from some other factor. I am...just turned 60 years. old. I have had this particular condition for over 9 years now. I have no real way of knowing when this began, only that the bleeding which is caused by this condition started worsening in 2000. I was hospitalized in 2000 when my hemoglobin was 6.2 ~ I had three transfusions and was told to go to a gastro. doctor.
At some point it was decided that the blood vessels in my stomach that were weeping should be cautorized (burned) in an effort to stop the bleeding. Over the next several years I had this procedure done approximately 5 times. Because that did not seem to be holding (for more than a year) ~ I ended up back in the hospital this past December (2007) with a 6.4 hemoglobin. I was also told that I had pneumonia. I was told that something had to be done, and it was suggested that the only way to stop the bleeding was to remove the section of the stomach that was bleeding. So...I had that done in January 2008 ~ at that time I was told that I had one very small section, very near my esophogus, that remained and that they would have to keep an eye on that area. Well, I sustained a 13.2 hemoglobin for nearly seven months.
Over the past two months I have begun to have noticeable problems ~ I was vomiting blood clots. I had another endoscopy this past Thursday to see what was going on. After the procedure I was told that the "small" spot was now much larger ~ they went ahead and cauterized that area. The doctor said he burned it as much as he could ~ and that he could not do anything more for me. He is referring me to a stomach specialist at Jefferson Hospital (in PA).
I guess I just need to hear what others think about this. I'm still in somewhat of a shocked state ~ hearing there is nothing more they can do is a little scary. Particularly since last night I again threw up lots of blood, which makes me believe that the "procedure" did not work at all. I don't know what to do at this point. I feel terrible, but I also don't want to call the doctor since he said there is nothing he can do. I feel lost and scared. What would you do? I guess I need to get into Jefferson, but then what? Boy do I understand the term, "Fear of the Unknown."
Anyway, thanks for letting me vent ~ I appreciate everyone here and I also realize that many of you have daily lives that involve much more suffering than what I am presently going through. You all amaze me with your wonderful "SPIRIT" that you share.
Posted 18 November 2008 - 05:26 PM
I am so sorry that you have had to go through so many procedures and hospitalization with no positive results. Darlin', you have every right to feel lost and scared.
Has the same doctor been handling all of your procedures? Have you seen other doctors in other facilities? Sometimes it takes a new set of eyes and knowledge to find the solution. If you havven't already, please see another doctor. What you are going through doesn't seem to be something that you should have to live with.
Warm, comforting hugs,
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Posted 18 November 2008 - 05:54 PM
Very sorry to hear about what you have been dealing with. I do not have GAVE but there has to be other things that can be done. Can't believe a doctor would say that and send you home to bleed again without some guidance as to what to do in the meantime. Please call your Rheumatologist and ask him/her or your primary doctor for help. Please call them and keep us posted. Nina, am so sorry some of the medical professionals can be so cold. Will keep you in my thoughts. Should you read this tonight and you are still bleeding, go back to the hospital or at least call them to see what you should do. Surely someone can help.
With gentle thoughts,
Posted 18 November 2008 - 07:41 PM
Your situation really touched me and I wish I could do something to help you. There has to be a specialist in the upper northeast area that can offer you another option or form of treatment. Maybe a search on the internet and making phone calls will turn up specialists familiar with treating G.A.V.E. conditions similar to yours.
You have every reason to be concerned. I am hoping the best for you and I will be thinking of you.
Posted 19 November 2008 - 12:44 AM
I am sorry you are still having these difficulties. You got most of the words right the second one is Antral.
Gastric Antral Vascular Ectasia (Watermelon Stomach)
Hope these links will be of use to you and others who may be interested.
I do think it is a good idea to see the specialist your doctor recommends. Several members have had similar situations and eventually got things under control. Big hugs to you and good luck.
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International Scleroderma Network (ISN)
Posted 19 November 2008 - 02:25 AM
I too have GAVE- Gastric Antral Vascular Ectasia. I was diagnosed with it when I was 47. I am now 51. I have only had two major bleeds. I am so sorry to hear of all of the problems you are having. I see a rheumatologist at Johns Hopkins University. She has referred me to a GI doctor at Hopkins. I go to see him in December. Did I notice that you live in Delaware? Hopkins isn't too far from there, is it? If you want to email or private message me feel free to do so.
Posted 19 November 2008 - 02:44 AM
I feel so bad for you and will keep you in my thoughts morning and night? From a medical perspective, did the gastro doctor by any chance biopsy this *spot* in your esophagus? There are several reasons for lesions on the esophagus.....most can be treated, too. I hope the next doctor is more proactive and not take such a pessimistic veiw.
Take care, Everyone.
Posted 19 November 2008 - 06:28 AM
I too am so sorry you are suffering so much with "watermelon stomach" (GAVE syndrome), which I also have. I was 39 (now 50) when I was diagnosed with it. It took almost two years to get it under control (10+ argon laser procedures, blood transfusions and iron infusions). But I have been doing quite well for a good while ... so there is hope! Since GAVE syndrome is more rare with scleroderma, only 5 people in my scleroderma group have it .... one young lady had part of her stomach removed too several years back and is doing well.
For me and the others who have GAVE syndrome in my group, there is chronic bleeding all the time. For the past 3+ years I have maintained at 12 or 13 point hemoglobin. However, my iron and especially ferritin count (measures how much iron is stored in your body) has always been low ... right now mine is only 4 ... I believe it should be 20 or more.
I agree wholeheartedly with the others who recommended that you connect with a teaching hospital that has doctors who specialized (and do research) in scleroderma. I am blessed to be near UCSF in San Francisco. There are several doctors there like that ... I just had my yearly appointment with doctor. Connolly at UCSF on Friday ... she was a wealth of information! I also have my PFT and CT scans done there and see doctor. Golden in the interstitial lung disease clinic for my pulmonary fibrosis. It is comforting to me to go to doctors who understand scleroderma and are up to date on the latest research. So if you can go to Hopkins, that would be so great for you.
Please take good care of yourself ... let me know if I can be of further help!
Posted 19 November 2008 - 07:34 AM
I am sorry to hear about your problems. I have no insight on GAVE, but hopefully the others can help you. I hope things get better!