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#1 miocean

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Posted 06 September 2012 - 12:55 PM

Hello all,

I saw my scleroderma specialist yesterday. Since it is a teaching hospital the first part of my visit was with a resident who is going into Family Practice. I think it is great that he is able to see people with scleroderma as it is so often missed or misdiagnosed, I only wish he had seen me when I was presenting or full-blown in renal failure instead of at this wonderful plateau and transplant phase I am currently in.

All the news is good. My skin score remains at 0 (down from 45) and my hands have slight curvature but almost full range of motion. My lung function seems to be stable but I will have a full work-up with PFT, 6 Minute walk and Echo in January instead of December. My current diffusion is 38% and I do get short of breath but I do not desaturate. Based on those tests a CT Scan and/or Right Heart Catherization may be scheduled.

My doctor still seems very concerned about the possibility of Pulmonary Hypertension, something she diagnosed me with right before the transplant but other specialists disagreed and all claimed they didn't get the right numbers from the cardiologist. I understand this can be a big concern with scleroderma but I will think positively and not worry about it. (Hey, I've come a long way!)

Another issue is my cholesterol which is a little high but my good cholesterol is also high so my ratio is good. I found a statin lowered it several points but made my legs ache to the point of not being able to walk. Interesting, the resident looked at the numbers and said he would recommend diet and exercise, possibly fish oil if approved by my nephrologist, that my numbers were not that bad, it was the scleroderma specialist that said something would need to be done about it. I will have a lipid profile repeated in a couple of months and then I will see. Because of the kidney transplant I get tested much more often than a "normal" person would although the further out I get the less frequent the testing becomes.

So all is well in scleroland for me right now, as well as can be expected. :emoticons-yes:

miocean
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#2 Shelley Ensz

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Posted 06 September 2012 - 02:00 PM

Hi Miocean,

I'm delighted for you that things went so well with your scleroderma follow-up. It is very impressive to finally have a skin score of zero!

:happy-day: :jump-for-joy: :happy-day:

Did you know that one of the side effects of Prograf is elevated cholesterol? So keep at it with your dietary measures but realize there is probably a limit as to what you can compensate for.

Good for you for not worrying about the prospect of pulmonary hypertension, unless they manage to "prove" it again. After awhile, I think we learn to just not let our nerves get all jangled up when they toss out this disease or that horrible possible complication...it's like oh yeah, been there, done that, already survived being threatened with this that and the other thing, so I dare dare double-dare you to raise my hackles by saying all those scary multiple-syllable medical terms! Eh? :P

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 miocean

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Posted 06 September 2012 - 07:05 PM

Yes, Shelley, I do know that my meds can elevate cholesterol. I also have a hereditary predisposition to high cholesterol but no history of heart disease in my family. You are so right about not getting all "jangled" when another issue comes up. Not that we should not take things seriously but everything is relative. :P

This forum helps so much in helping understand so many things, from the physical to emotional aspects of the disease. When I first joined I was so inspired by so many who dealt with scleroderma for years. I continue to be inspired by all of you who go through what seems to be tremendously difficult periods and come through stronger, maintain your sense of humor in situations that would practically destroy others, and open yourself in sharing your concerns and fears.



:thank-you:

miocean
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#4 Joelf

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Posted 07 September 2012 - 08:34 AM

Hi Miocean,

What excellent news about your skin score!! :emoticons-line-dance: I'm so pleased to hear that you're going through such a stable time at the moment with the exception of the possible Pulmonary Hypertension.

Shelley's absolutely right; it's so much better if you're able not to worry about the PH complication until it actually happens (if it ever does! ;) Easier said than done, I know!! ^_^ )

I'm really hoping that this improvement continues indefinitely for you and that you carry on having such a positive outcome.

Best wishes,

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#5 marsha

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Posted 07 September 2012 - 09:10 AM

Wonderful News Miocean,
Did you see the same sclero doctor as last summer? I really need to get on the ball and get back to mine.. Hope things keep up on the upswing for you
Talk to you soon,
Marsha

#6 miocean

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Posted 07 September 2012 - 04:41 PM

Marsha,
I have had the same scleroderma specialist since 2004 when I was diagnosed. I sought a consultant with another after my kidney transplant and worsening lungs to see if they agreed on treatment protocol. I only saw this doctor once and did a phone consult once. The PH possibility was the one differed on. The anti-rejection medications I take are almost the same as what would be prescribed for the lung fibrosis.

I see my scleroderma specialist 4 times a year and have for the 8 years that have passed. I see a pulmonologist quarterly as well. I now see my nephrologist every 3 months, my GI doctor as needed, a dermatologist every 6 months, gynecologist yearly and my primary for general health issues. If my lung function worsens I will seek a consult with the pulmonologist at the center. Hey, I won the "Most Ologists" Award! :emoticons-clap: which I believe since them some others here deserve more and I would be happy to pass on. :fairy:

:emoticons-group-hug:

I have always been compliant about seeing my doctors. I have been told I see them too much but I cannot eliminate any of them. Having this rapport makes it much easier to see them immediately when there is a problem. All of them are really good about getting me in right away. Making the quarterly appointments prevent having to wait months to schedule. I have emails for most and even the personal cell phone number for my GI doctor.

I also was very compliant with dialysis for the 5 1/2 years. I never missed a treatment, even though I was rushed to emergency immediately after one and hospitalized for 4 days, I never asked to be taken off the machine early. I have taken all of the medicines as prescribed with the exception of the statin and magnesium that were doing more harm to me physically and emotionally than good.

Now, I am not bragging (yes I am :VeryHappy: .) The reason I am mentioning all of this is if an organ fails and you need a transplant, one of the things carefully looked at is your compliance. A precious organ will not be given to someone who will not take care of it.

So, Marsha, schedule that appointment, especially with the cold weather coming in our neck of the woods :( and the issues you have with your hands.

miocean
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#7 Joelf

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Posted 08 September 2012 - 07:17 AM

I have always been compliant about seeing my doctors. I have been told I see them too much but I cannot eliminate any of them. Having this rapport makes it much easier to see them immediately when there is a problem. All of them are really good about getting me in right away. Making the quarterly appointments prevent having to wait months to schedule.
miocean


That's an interesting point, Miocean and I can fully agree with you about being compliant with my consultants. Of course having complete faith in my medical team does help, but I always follow to the letter exactly what they tell me to do as regards taking medicines and doing what they advise to help my condition (they are, after all, giving me the benefit of their experience with lung problems and Scleroderma and are not telling me to do things for the fun of it! ;) ) Basically, if they say "Jump!", I say "How high?" In return, I've found that they listen seriously to any suggestions that I make and don't patronise or treat me like an idiot (even though perhaps they should!! ^_^ :lol: )

Kind regards,

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#8 Amanda Thorpe

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Posted 08 September 2012 - 03:33 PM

Hello Miocean

Way to go girl! A skin score of zero, do you remember what it was like when it was 45? I can't actually remember what it was like to have that much skin involvement but at the time was sure I would never forget, ever.

I have never seen the point of worrying about what symptom may come next, knowing all about them yes, that's being informed, but worrying? Nope, not me.

Take care.
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#9 Margaret

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Posted 08 September 2012 - 03:39 PM

<<Hey, I won the "Most Ologists" Award! :emoticons-clap:>>

Hi Miocean ,

I am so happy to read that you're doing so well....been following your journey for years!!! :emoticons-clap:

I had to chuckle at the *Most Ologist* award.....just like Gareth with his Pulmonologist, Gastrologist, Rheumatologist, Immunologist, Endocrinolgist, Cardiologist!!! Appts are every 3-6 months each....all totally in awe as to what *this kid* could possibly come down with next!!! :emoticon-dont-know:

Do take care, Everyone.
Margaret

#10 judyt

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Posted 11 September 2012 - 06:21 PM

Hi Guys,
Just back in NZ after a week in Tonga seeking the sun and warm weather. It is winter there too because it is still in the southern hemisphere but it was warmer and sunnier and more laid back. We did very little more than eat, sleep and read and talk to other guests at our resort then it was time to come home to reality.

I have been obliged to add a new 'ologist' to my list, a Liver specialist although in reality she is a Gastroenterologist so I guess she just takes the place of the one I 'sacked' a couple of years ago!!!!

The reality I have to face now is my Liver Cirrhosis. It was discovered as an " incidental finding" when I was in hospital in February that I had Portal Hypertension and some cirrhosis. I got around to consulting this specialist in the last month and her opinion now is that I probably have Autoimmune Hepatitis. She described Cirrhosis as end stage disease (great!!!) and a precursor for liver cancer (terrific!!!). Although by the second time I saw her when she had had time to investigate the myriad of tests which have been done this year, that the Cirrhosis is slight at this time but definitely there.

My dilemma now is to decide what course of action I will take. Reading the posts already on this thread I have to agree with Jo and miocean that the best course to take is to follow what your 'ologist' recommends to the nth degree. No use asking for advice then deciding that I know better. I have a dilemma because years ago I was advised by another 'ologist' that I had a deranged liver function of unknown etiology but that I should NEVER consent to a Liver Biopsy. Now I have been told that the only way to be sure what is going on is a biopsy, and that will confirm the course of treatment. The other alternative is to carry on watching, having 6 monthly scans and cross our fingers. I really don't feel like putting myself knowingly in the path of Liver cancer but for the first time ever I find myself reluctant to consent to a recommended course of treatment.. I have the form in my purse and if I decide to go ahead I have to make an appointment and it will all happen.

I am sure there are others here who have liver disease of one sort or another so I am hoping somebody will reply with an opinion. From what I remember being told the treatment would be Azathioprine and Prednisone but how effective is that? Actually I can't see myself refusing the treatment and if I had been told I could start on that without a biopsy I would be quite happy to give it a go.

I wait with bated breath (no actually I better breathe easy :) it doesn't help to withhold oxygen) to hear what others have experienced.

Best wishes from a frosty Auckland day
Judyt

#11 miocean

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Posted 11 September 2012 - 08:10 PM

Yikes, Judyt, I was thinking of you when I wrote this as someone to hand over my award to and I can't believe that you have another major health concern.

I didn't know what Autoimmune Hepatitis was so I turned to our trusty medical pages.
Don't we have enough to deal with. :temper-tantrum:

Now I have been told that the only way to be sure what is going on is a biopsy, and that will confirm the course of treatment. The other alternative is to carry on watching, having 6 monthly scans and cross our fingers. I really don't feel like putting myself knowingly in the path of Liver cancer but for the first time ever I find myself reluctant to consent to a recommended course of treatment..


I am in a watch and wait program it seems. Upon initial diagnosis I had yearly CT scans of my lungs, everything was stable for 7 years although I had Interstitial Lung Disease (ILD) and then after the kidney transplant they worsened. Now there is a concern about all the radiation I've had :lol: so yearly scans will stop unless the PFT, 6 minute walk, and echo determine the need for one. Although a right heart catherization is the only way to really diagnose pulmonary hypertension, that will depend on the other tests as well. And...the medicines I take make me prone to cancer, and the only thing that can be done is a lung transplant according to my doctors.. :jump-for-joy:


Amanda,
I do remember what I felt like with a skin score of 45. I was so hard and stiff I could barely move. I could hardly open my mouth or smile. I could not bend down or get down on the floor yet alone get up. I couldn't bend my hands, I couldn't hold a pen, my writing was barely legible. I had trouble typing. I had to stop wearing my contact lenses because I, couldn't pull my corner of my eye to pop them out (gas permeable lenses.) I had to take baths only because I had a venous catheter for dialysis but couldn't lower myself into the tub so I would cross my legs as far as I could and then plop down. But hey, I had no wrinkles and tight thighs for the first and only time in my life! :emoticons-yes:


You know, you just have to laugh sometimes to keep from crying.

:crying:
miocean
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#12 Joelf

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Posted 12 September 2012 - 12:20 AM

Hi Judy,

Dear me, I am sorry to hear that you're suffering another health complication (I've missed seeing you on the forums this past week or so, but I'm so glad to hear that you've had a good holiday break).

Thankfully, at present I don't have liver complications, so can't advise you about that, but I am taking the medication recommended for you ie Azathioprine and Prednisolone. I've been on those drugs for about three years now and apart from a couple of problems with my liver enzymes and MCV (mean corpuscular volume) levels, I've had very little problem with the Azathioprine (I have blood tests for it every 6 weeks). Unfortunately the prednisolone does have side effects which aren't apparent immediately; apart from the weight gain, the latest one I've found is the most horrendous bruising from very tiny little knocks, but you can't have everything! ;)

It's quite a difficult decision to make about whether or not to have a liver biopsy; I can see why you would be reluctant. :unsure: I'm sure we will have other members with more first hand information about liver problems who may be able to advise you.

I'm wishing you the very best for whatever you decide.

:emoticons-group-hug:

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