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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.



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Hi Miocean,


My goodness gracious. I just want to put my arms around you and give you a great big, comforting hug. I'd love to be able to say, "On the positive side..." but it is really hard to think of a positive side in this situation. Doesn't it seem like you just overcame all this stuff, only to have it come bouncing back again?


I say, go ahead and just quit, at least while you are on vacation. That will be a truly delightful, x-ray free zone. Oh no, wait, you will get even more zaps at the Security check points!

I understand the concern about too much radiation; I am pretty sure that with just one more test I will become glow-in-the-dark.



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Oh dear mio,


I am so sorry to hear about all of this and hope that you are able to rise above it all!!! On the one hand it is great to be somewhere there is access to a Sclero centre and people to consult who actually know something about what can happen, but sometimes I think I agree with you that it is easier not to know.


I have a friend who doesn't want to know and won't even let her general practitioner take her blood pressure in case there is something wrong - I can't get my head around that one. Actually, as I am writing this I just wonder WHY she goes to the general practitioner at all. I know that recently she had a fall and needed some first aid but apart from that, why bother the poor man if you don't want to know?


Anyway, we are not in that category and like you I think it is better to know, particularly if there is something that can be done to help. I guess as far as the calcinosis goes, there is nothing much to help you so it is a case of hoping that the research you are contributing to will help others in the future.


I hope you can enjoy your holiday and get some sun and warmer air for a while and that when you get home you feel the benefit of it.


Best wishes


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Dear Miocean,


I'm so very sorry to read your post and although Pollyanna is my middle name and I try to be positive all the time, I agree with Shelley that it is hard for you to be positive at this moment.


I can advise you about Fosamax (alendronic acid) as I've been taking it once a week for three and a half years (like you I have osteopenia in my hips). The worst part of the medication is that I have to take it first thing in the morning on an empty stomach before any other medication and have to remain upright and not have anything to eat or drink for 30 minutes after taking it. I've not suffered any side effects from it, though.


I really hope that you enjoy your vacation and that things do improve for you very soon. :emoticons-i-care:




Best wishes,

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Oh my, miocean;


What more can I say? :emoticon-dont-know:


Like Shelley, I want to be right behind her, to give you even MORE :emoticon-hug: s; we can never have enough of those...

I am SO glad for you, that you are going away to have some time to just unwind/relax, especially after your grueling day at the Scleroderma Center.


Any who have put in shifts at a medical facility can truly empathize with you, on how wearing it can be; yet to digest/cogitate after a day like you had, it absolutely is the best time to let it lie right there until you pick it all up, at a future time and of your choosing.


That is why it is so advantageous, to have the working knowledge YOU do; after all this isn't your first day at school! However, I sure can understand how a "Calgon take-me away" would be nice too.

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Hi Miocean


There is nothing that I can say that would really help with what you are having to cope with after all you've gone through already but just want to say I am thinking of you.


When my daughter is feeling a bit down I always send her a very big hug & cuddles so I'm sending one to you & hope you feel a bit better soon.


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Sorry Miocean but if you quit we all quit which would mean no forum providing top notch information and heartfelt support for people with scleroderma and associated conditions. It would mean no personal stories shared that give hope, a sense of belonging, inspiration and a good old fashioned laugh from time to time. So you see, oh dear one, you simply can't quit!


I hope that now, a few days on from your initial post, the desire to quit has gone?


Take care and keep posting!

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Dear miocean:

What a bad day for you. Lots of hugs and special care are being sent your way.

As far as machine malfunctions, my first day of radiation for breast cancer the machine malfunctioned and I apparently got a larger dose that I should have. We trust in our doctors and machines and 98% of the time our trust is well-rewarded. Where would we be without them?

But I'm glad you can participate in a study. That may bring some new relief and meds?

I have started a new binder for all my tests and meds and labs and etc.etc.etc. I may need some of those stickers doctors use for all their folders.

I'm just beginning issues with calcinosis so have no advice - just warm thoughts.

More Hugs

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Thank you all for your kind thoughts and words of encouragement. I was just at one of those low points and knew that you were the only ones who would truly understand.


I have noticed more shortness of breath upon exertion so the change in numbers doesn't really surprise me too much. I hate home oxygen therapy, dragging that long canula behind me and feeling like a dog on a short leash. I hate going out in public with a tank, making my illness so obvious, thinking that other people will feel sorry for me. However, I am having trouble with SOB,and that doesn't mean crying for those that don't know the code, it is Shortness Of Breath. I am noticing I have to stop and catch my breath more often. I do know not to panic, how to do pursed breathing, to stop and rest and walk at my own slow pace.


Kay Tee, there will be no medicine for the calcinosis study, it is more of a tracking program. The only thing that can be done for calcinosis is surgery to remove it and even then it can come back. My areas are fairly large and with a weakened immune system from the anti-rejection medications I feel the surgery would be more risky than the discomfort.


Well, Amanda, if you're not quitting, I'm not quitting....


Being in the sunshine and warm weather has made me feel better.



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  • 2 weeks later...

Hi Miocean,


You mention something rather important, which is that the technical abbreviation for Shortness of Breath is SOB. As you know, that is the way medical professionals use it, too.


I was very upset when I first requested my medical records, only to find my doctor's notes saying "SOB!". I thought, well, huh, and same to you, buster. And I was so brain fogged that it took quite awhile for me to actually figure out that it wasn't a personal insult <sigh>. :emoticon-crying-kleenex:


Those of you who need to decipher your medical records may want to study Medical Abbreviations, Jargon and Terms by MedicineNet. Some terms you would hope are not in your records include AKA which does not mean "also known as" but rather "above the knee amputation". HA is not good humor, but rather "headache". O.U. does not mean you are due for a reimbursement for poor medical care (HA!) but rather "both eyes".


Enjoy your dallying around through medical jargon. :yes:

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