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kiwimum03

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About kiwimum03

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    New Zealand
  1. kiwimum03

    Scleroderma Esophagus

    Thanks for your lovely message Sandy, I am sorry to hear you have been having a hard time with gastro issues too. I do hope your new medication can help. I have tried drinking milk, but am not having much luck with dairy, it gives me diarrhea unfortunately, I don't know if it is the milk or the fat. But I will keep chugging along :) thanks again,
  2. kiwimum03

    Scleroderma Esophagus

    Hi Judy, I am definitely going to ask the doctor when I see them for my biopsy results about alternatives to Motilium. I also asked about the meal replacement last time as I am already anemic (I have been for years, which I have been told is due to chronic disease, I have microcytes which are small and pale). They were a bit reluctant to give me meal replacement as I have been vomiting, but honestly I need something. Even if half of it stays down that's better than nothing. :) But I have faith, it will all get sorted, hopefully sooner rather than later. Thanks for your support :)
  3. kiwimum03

    Scleroderma Esophagus

    Hi Judy, I have been on Domperidone previously, but unfortunately I can't take it as I have (for some unknown reason) abnormal lactation and prolactin levels. The Domperidone pushes my prolactin levels even further up, into the 3000's, so I can't take it. It did help me though at the time. It's been about 3 years since I last took it and my stomach empyting has gotten worse, not sure what else you can take for it though? I tried to eat a bit more today, but it was no use. All I got was a sore bloated tummy, epigastric pain and vomiting and chills. I can only eat crackers or small amounts of plain soup, not that I mind as I don't have much of an appetite anyway. But I am happy they didn't find anything nasty in the gastroscope, that does ease my mind a little. Hugs,
  4. kiwimum03

    Scleroderma Esophagus

    Thanks for all the warm thoughts. I went in this morning (Judy, I ended up at Middlemore in their new Gastro wing, very nice!) Unfortunately the scope didn't show anything, not even signs of GERD, which I found surprising. So now I have to wait for the biopsies to come back. I am not sure where I go from here. I have now lost 5 kgs in total, and still have tummy pain, slow stomach emptying and hardly any appetite. It's not losing the weight that I mind about (as I can afford to lose it) it's just the way I am losing it and why. I do know there are more tests they can do, so hopefully now I am in their system it will move along a bit faster. Thanks again for your support. Hugs.
  5. kiwimum03

    Scleroderma Esophagus

    Just a little update, I received a sudden call yesterday from the hospital to go in for a Gastroscope on Monday morning. Hopefully we can get to the bottom of this. Thanks for all your support.
  6. kiwimum03

    Scleroderma Esophagus

    Thanks Margaret, Shelley and Lynn for your replies, I am totally open to any suggestions of what this could be, I guess by writing about it I was hoping someone would read it and go "Oh, I have that too!" , just so I could know what it was :) I went to the general practitioner this morning and he sent an urgent letter to the hospital for a referral. Finger crossed it goes through soon. He gave me some electrolytes and nausea tablets you put under your gum to disolve in the hopes that I can tolerate more food. I managed to keep some electrolytes down today. yay! Lynn, I am pretty sure I haven't been bitten here in New Zealand, but I was in Malaysia over holiday and I managed NOT to get bitten the whole time, except on the last day I got 2 mozzie bites, which were super itchy, but I never had any problems...but that does make me wonder. (I am on antimalarials, so that would cancel out Malaria wouldn't it?) The doctors in the ER were aware that I had been overseas in the last few months though. I am super tired, so going to have a wee rest now. Thanks again for the replies, I really appreciate you all taking the time to read my post. Hugs,
  7. kiwimum03

    Scleroderma Esophagus

    thanks Jeannie, I will let you know how I get on. I had two episodes today where I just couldn't stand up anymore from muscle fatigue and ended up sitting on the kitchen floor, I think I might just need a bag of fluids or something as the electrolytes make me feel sick. Not a fun situation, hopefully the doctor tomorrow will see the gravity of the situation. thanks again.
  8. kiwimum03

    Scleroderma Esophagus

    Hi everyone, just me...............yet again :) Last month I posted about my purple nails and pressure and pain in my chest which ended me up in the ER. Unfortunately I am still having problems and am still yet to see the Gastro Specialist. I have had 17 "attacks" in total since May 12th and have also lost 4kgs (8.8 Llbs), as now every day I have no appetite and can only seem to eat one meal and if I eat any more it will come up. Also struggling to keep fluids down. I went and bought myself some electrolyte powder as I have been getting dizzy and very "floaty" feeling. I have booked myself in to see my general practitioner tomorrow to see if they can hurry up with the Specialist. My question is, do these problems sound like the Esophageal problems one gets with Sclerdoderma? My eating and drinking problems are daily, and my "attacks" happen randomly. I can go 4 or 5 days without having an "attack" or I can get them two days in a row. The attacks still go the same, sudden queer shaking feeling in my esophagus, hands instantly turn blue, right hand shakes, internal chills, jaw locks, then teeth chatter and my tongue doesn't work and I can't form words or talk for about 5-10 mins. After that I have terrible gag reflex and then vomit intermittantly for up to an hour. I get pain in my epigastric area and my back. Totally frightening, but have learnt not to be anxious during these attacks as I know they will pass after 20-30 mins. Daily I have chronic nausea, no appetite, liver, and upper LEFT abdominal pain. Okay I am going to stop my ramble now :) thanks for listening.
  9. kiwimum03

    Right Heart Catheterization experiences

    Hi All, just a little update, I saw the Cardiolgist on Thursday and after all my worry, they do NOT want to do the right heart catheter right now. They are going to do another Echocardiogram first and then decide. As I have no shortness of breath they didn't really want to do an invasive test. But the Cardiologist did say they would keep a good eye on me, as sometimes by the time the Pulmonary Hypertension is producing symptoms it has been there for a while, and he would like to catch it early if it is going to present itself. Smart man. thanks again for all your help and advice on this subject. Hugs,
  10. kiwimum03

    Right Heart Catheterization experiences

    Thanks Craig and Miocean for your replies and advice, It's good for me to have an idea of what to ask the doctors. Now I feel am fully prepared :) Judy, you make Auckland Cardiac unit sounds quite pleasant :) ......and it's only 25mins away from where I live, so thats a bonus! I'll let you know what happens after I see the specialist. Hugs to everyone!
  11. kiwimum03

    Right Heart Catheterization experiences

    I just wanted to thank everyone VERY much for sharing their experiences with me. It has helped calm my nerves about this subject and now I feel if the Cardiologist does press me to have the procedure done then I will be "ok" with it. You were all very honest and descriptive which is what I needed! You told me the "in's and out's" of the procedure, which was really good to know. I am a step by step kind of girl, and need to know everything! Amanda...........thank you for being very descriptive about the shaving....LOL...something I hadn't thought about, until now, but good to have a heads up on that subject :) Judy, I am in Auckland, so I presume that is where it would be done. I don't see my Cardiologist until June 17, which is when they want to review my file and see if they need to do this test. They talked about it 6 months ago, and again when I was in the hospital 2 weeks ago, they were all for going ahead with it, so we will see. I just want to be mentally prepared, as I freaked out when they talked about it the first time. Thanks again everyone, I appreciate you all! Hugs
  12. Hi, when I was last in the hospital two weeks ago they were thinking of ordering a Right heart Catheterization. Now I have been called up to see the Cardiologist as an outpaitent in 2 weeks time, and I am pretty sure they are going to bring the subject up again, wanting me to have this done. I know I am probably being silly, but it sounds really scary to me. My father had it done years ago and his catheter snapped during the prodcedure. Now I know he had severe blocked arteries, and that was the cause for the catheter to break, but I am a little freaked out about something going in my body to my heart. I know the doctors do this procedure all the time, so it must be safe. I am just wondering from those of you who have had this done, how you found it and how it felt? I know everyones experiences are different. I just tend to worry alot about things, even if I don't know if I need to ! thanks!
  13. kiwimum03

    Pressure and pain in ribs and chest

    Thanks for your thoughts and great comments enjoytheride, I have had to eat very small meals so I can take in more fluid which has helped my dehydration thank goodness. I also now dont' drink or eat anything cold, that helps too. Thanks for your suggestions.......hopefully I get my gastro appt soon. fingers crossed x
  14. kiwimum03

    Pressure and pain in ribs and chest

    Thanks Shelley and Sandy for your replies, I have had no more attacks (eosophagael spasms?) since Thursday night, but am still unable to eat or drink much without it floating back up and I am very nauseated in the mornings. My lips are cracking so I suspect I am a bit dehydrated, so I will go back to the doctor tomorrow as I have high blood pressure and I am worried about the effects of dehydration on my kidneys amongst other things. After a bit of reading I am wondering if the Vagus Nerve might be involved when I have my attacks as that might help explain the blue hands and uncontrollable teeth chattering, purely me just theorizing of course! Sandy, I have had a bit of wind, not too much, and in the beginning of my attacks I didn't but now I have been getting terrible gripe pains midday, but I am swinging from constipation to diarrhea, so I don't know about that. I am only eating vegetable soups as anything more solid just doesn't seem to want to stay down. The other problem I have been having at night is that I feel like I have something stuck in my throat, almost like the back of my tongue touches my throat and I can't breathe, even though I can. Then my food comes back up and the sensation goes away, so I guess that is just the food sitting just under the larynx or something........again speculating! (which is all I can do :) Thank you all for letting me vent and chat, it is extremely helpful and encouraging to have such support. Hugs
  15. kiwimum03

    Facial scarring...out of nowhere?

    Sorry you are having so many skin changes Pam, I too have changes on my face, and I am not happy about it, i don't want to look different either! I have yet to see a dermatologist about it yet though. I keep meaning too, but I don't know whats holding me back. I would also be interested in anyone elses experiences with Methotrexate as my rheumatologist suggested this on my last two visits and I just don't feel ready yet, I don't know if its because I don't have a proper diagnosis or I just don't want to put any more pills into my body. Big hugs xo
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