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Found 5 results

  1. miocean

    Fluid Around My Heart

    My Echo yesterday showed fluid around my heart. Although I am not happy to hear this I am happy to possibly get an answer as to why I might be so short of breath lately. Although other tests had remained stable up until now my pulmonary function has declined (DCLO is down to 17%). My previous Echo in July did not show this fluid. I was taken off a diuretic in May due to the dehydration from diarrhea and need to go back on it. I also have to repeat the Echo in 2 weeks. I saw a new rheumatologist yesterday at Columbia Medical Center and like her but will continue seeing the one I have used for the past 11 years as well. I am working on getting a team of doctors at Columbia. Tomorrow I am supposed to repeat the 6 minute walk test and see a gastroenterologist. It's always something with this disease... miocean
  2. It seems like it has been taking forever (because it has been months) but I am nearing the end of my lung transplant screening at the 2nd center I applied to. The first center rejected me immediately due to extreme reflux and damage to my esophagus but the second one is willing to test further. I started this process around July and was told I would be finished in Sept. Here is the update on the current lung tests: My Pulmonary Function Tests were very similar to last year. I had a very slight improvement on my Forced Vital Capacity and a slight decrease in my Total Lung Capacity and Diffusion. The differences were very minor and my scleroderma doctor, pulmonary hypertension specialist and I are very happy with that. The numbers are not good, but no severe decline. I still desaturated on my 6 Minute Walk Test but walked 50 meters further! I think Pulmonary Rehabilitation and exercising more contributed greatly to this. Although I have finished rehab I have joined a gym and am continuing to exercise as I don't want to lose what I have gained. My Echo confirmed the numbers of my heart catherization in August or September where my pressures went down to 23 (normal.) My PH specialist is continuing my protocol of Adcirca, a diuretic, oxygen during exertion, and exercise for now, I will probably have another heart cath this summer. My CT Scan showed very little change from last year according to my PH specialist! This is great news because last year my fibrosis had increased and my lungs had started to honeycomb. I haven't read the report myself yet. This week I spent a 13 hour day from start to finish at the transplant center. A two hour commute to and from, six tests and a meeting with the PH specialist. I had the CT scan, a Sniff Test to see if my diaphragm is working (it is), a chest X-ray, an arterial blood gas test, EKG, Echo, and the appointment with the PH specialist. I am still very impressed with the organization and professionalism of this center. I have had experiences with 11 hospitals in the past including kidney transplant screening so I have a good basis to judge. I now have a neurological evaluation scheduled in a couple of weeks and maybe a few more interviews but the testing part is finished. Once these evaluations are finished the center will let me know whether I qualify or not. It was last year at this time that I learned about the increase in fibrosis and developed pulmonary hypertension, putting me in the position to see if I am a candidate for a transplant. I started the transplant process and medication for the pulmonary hypertension but also put out a lot of positive energy that my lungs wouldn't get any worse and did everything I could to improve them including the rehab and a series of breath work. I have been seeing a therapist and working on dealing with the stress and anxiety of all of this. It hasn't been easy, it never is as we well know... So now this part of the journey is almost over and an answer is in the future. I have found some new, better doctors. I also learned about the GI damage scleroderma has caused. I am amazed at the dedication my husband has shown, the time he has given up, and his unwavering support. Sometimes I think it is harder on him than it is on me. I will let you know what happens next. One way or another, it will work out. miocean
  3. miocean

    Yearly Tests

    Yesterday was a 12 hour day at my scleroderma center between travel time, tests, and meeting with the specialist. I had my yearly Pulmonary Function Test and afterwards compared my Total Lung Capacity (TLC) and diffusion rate (DCLO or Dsb). They went down: TLC from 78% to 61% and Dsb from 39% to 37%. Then I had my 6 minute walk. Last year I started at 98% on room air and at the end of the test was at 96%, walked 1533 feet and did not desaturate during the test. This year I started at 98%, at 4 minutes dropped to 88%, was given 2 liters of oxygen and at the end of the test was at 92%. I walked 1468 feet. This is a decline and I know from past experience that dropping that low usually means home oxygen therapy. I asked the techs if they though I would need it and they didn't think I would because I came up very quickly after getting the oxygen. After that came my Echocardiogram (Echo) The center lost power during the last picture of my test! Even though the machine was plugged into a "red" plug that goes directly to generator, it screwed up my test and it wouldn't upload. So that meant a long phone call to tech support, three other people in the room all telling the tech to do different things, and I am just thinking this is so par for the course for me and now I have ANOTHER story to tell about my mishaps with the medical machine. The end result is that my test would have to be read manually from the machine. My guess is that it will have to be done again. Fast forward a couple of hours to my appointment with my scleroderma specialist. She did not have the results of my Echo. Because of the decline in lung function I will need a CT scan of my lungs, no surprise. I knew that was coming. They were holding off on an annual CT scan because I have been exposed to so much radiation over the years, but now it will be necessary. Depending on the CT scan and Echo a determination will be made for a right heart catherization. I've already had 2 due to pre-testing for the kidney transplant so I know what to expect and I knew this was coming. She also gave me a prescription for home oxygen to use when "I am on the treadmill or doing aerobic exercise" (I do neither.) I said I understood that legally the script would have to be written due to the drop below 88% but that in all honesty I would not get this set up right away. I am going away and cannot get it set up before I go or where I am going. I have an appointment with my local pulmonologist when I return and will run everything by him, as well as another consultant. I brought up the calcinosis on my buttocks, something that has been an issue since onset 8 years ago and hasn't been given much attention and all of a sudden I became a patient of interest! My doctor is taking part in a research study on calcinosis. It is a 3 year study to track the development and severity of it in scleroderma patients. I have paperwork to read and sign, my doctor insisted on my taking it home and reading it very carefully. Basically it allows access to my medical information, there are no drugs involved, tests would be covered by my insurance, and I can withdraw at any time. I was asked if I had calcinosis on any other part of my body and I reminded her that in 2006 I had a biopsy done at my C-2 C-3 vertibrae for a mass that turned out to be calcinosis. I even made the medical journals for that one because it is an unusual place for it to form. She didn't remember so I pulled out my handy dandy looseleaf notebook, organized by organ or body part and whipped out pages of reports and tests from this. She made copies to look over and gave me prescriptions for x-rays of my buttocks and hands (so much for the exposure to radiation.) Then we went over the results of my bone density scan from November. My gynecologist prescribed it and went over the results with me then, in general things have improved each year since my transplant, except for a small negative change on a hip. I have been diagnosed with Oestopenia for several years. My gyn did not see any problems with the report but my scleroderma specialist did so I now have a prescription for Fosamax but cannot go on it until I discuss it with my nephrologist and will also run it by the others on my medical team and that won't be for a couple of weeks. So I now have 20 pieces of paper to add to my already way to thick file and plan on putting everything aside for a while since I cannot do anything about them right now and nothing is so important it cannot wait. Sometimes I just get tired of it all. All of it is starting all over again, the testing, the doctor's, more medications. I have diffuse scleroderma with total organ involvement, a kidney transplant, medicine that causes cancer to prevent rejection and causes even more GI problems than the scleroderma by itself, the only treatment for my lungs would be lung transplantation, blah, blah, blah, we all know the drill. I try to stay positive but other times I just want to say "I QUIT!" I know you are the only ones I can openly express this to, and know this is just temporary. If you have any advice, especially about the calcinosis study or the tests and medications, I appreciate it. miocean
  4. Amanda Thorpe

    How could you possibly fail me...?

    How could you possibly fail me? You’re supposed to be good to go from beginning to end, at least that’s what you come to expect and it’s certainly what they promote and imply if you do what you’re told! I did, I did! I went to the gym regularly, I was a jogger, I ate healthy, and I only smoked lightly for a couple of years. From the age of 30 I was acutely aware of Ma’s heart problems, first heart attack prior to 50 and to date 3 heart attacks and a dead artery (if I have to hear about the creepy dead artery that she’s walking around with in her chest so do you!) so I was always determined that I would NEVER have heart problems. Hey Amanda, how’s that working out for ya? Should have been determined never to have an autoimmune/ vascular disease instead but then I didn’t know they ran in the family prior to having scleroderma. Sometimes I feel like I didn’t know anything prior to scleroderma and now I know lots of things I don’t want to. Thanks to scleroderma I have myocardial fibrosis which put me into serious heart failure with a 2 year life expectancy in 2010. My ejection fraction was 32% (normal being 55-60%) which went up slightly in 2011 and according to my latest ECHO is now back to normal thanks to implantation of the biventricular ICD in late 2010. Clearly a good ECHO outcome, improvement is a great relief as I figured things would be bad otherwise, real bad, like “What wood would Madam like, oak or maple?” bad. If my ejection fraction had gone down/goes down despite implantation then “Madam wants maple.” So I was trying to think how do I actually feel about all this? About ending up with the one ailment I worked hard to avoid, heart failure, which I will forever be in because without the biventricular ICD my heart no longer works. About having tests every year, ECHO’s, pulmonary function test, gastroscopy and so forth, the results of which could indicate coming disaster, or that it’s actually arrived, or that, hooray for you, you’ve dodged the bullet...this time. How do you feel standing on shifting sand? In my early days I used to misquote that well known scholar F Gump saying, “scleroderma’s like a box of chocolates, you never know what you’re gonna get”. Turned out to be true. I still don’t know how I feel about all this after 5 years and the thing is it makes no difference. You’re gonna get what you’re gonna get, hazelnut caramel or coconut chew!
  5. miocean

    Yearly Test Updates

    Hello everyone, Well, the jury is in on all my yearly tests and basically I am doing as well as I can be. PFT: 55% lung capacity, 38% diffusion. They are now discounting a test from right after my kidney transplant where it went up to 43% as invalid and that means I have plateaued in the high 30's. Although that is not that great, it is great that it has stabilized. 6 Minute Walk: No desaturation, started at 98%, went down to 96%. This is very good because if I was desaturating along with the low diffusion it could be indicative of Pulmonary Veno-Occlusive Disease. (That was a new one for me and I am REALLY glad not to have it!) Echo: No signs of pulmonary hypertension. Slight enlargement of the heart and some hardening but probably no more that a person my age would have. No need for a right heart catherization. (Yea!) CT Scan:No increase in fibrosis since 2010 although there was a significant increase 2009-2010. No other treatment available since I am on myfortic as a rejection medicine and am on the highest dose. Lipid Profile: Off the statin for two months and my cholesterol has gone from 192 to 205, slight increase in triglycerides. I see the cardiologist next week and we'll determine what to do. The anti-rejection medicine I'm on causes high cholesterol. Kidney Transplant: Creatine is 1.2 and stable at 22 months out. Everything is going well. Skin Hardening: Softened to 0 from 45 on a scale of 0-50 over the 7 years of the disease. So, all is as well as it can be in sclerodermaland. I am following the typical pattern of diffuse scleroderma with sudden onset of symptoms and skin hardening, major organ damage, gradual softening of the skin and then a plateau. If I continue to follow the pattern I will stay where I am, but we all know how that goes and can only hope that it does. You all have encouraged me so much over the years, I hope this brings encouragement to others. miocean
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