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Biomarker for Diffuse Scleroderma skin has been discovered!


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Life is a bit of a roller coaster sometimes.....


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#1 Sandy B

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Posted 13 January 2011 - 03:23 AM

Hi All,

The last six months have been as the title suggests a bit of a roller coaster. Back at the beginning of August when I last saw my gastroenterologist, because of my on going gut problems, he felt stem cell treatment was worth considering. After the initial shock, I was inclined to agree with this, but he wanted to run it past my rheumatologist who seems to have the final say. Well I had a long wait until I was due to see him again, 8th December,(in the mean time,my mother was admitted into hospital with pneumonia on the 7th, so I was able to combine a visit two both of them on the same day.

The upshot of my rheumatology appointment is, that he felt at the present time I didn't meet the criteria for this procedure, but it might be an option in the future providing I didn't have any heart problems. I guess having mum in hospital distracted me from the disappointment I might otherwise have felt. But he did put my name forward for a research program which was being carried out. Basically it was an m.o.t. (like a car inspection) test for the heart, involving, ultrasound and MRI cardio angiogram, plus various blood tests etc. Well I jumped at the chance because I knew I would either come out with a clean bill of health or they might find something. Everything was arranged for Monday 10th January. Well after a four and a half hour visit, I had all the scans and the outcome is the latter, I have leakage from the valve on the right hand side of the heart between the atrium and the ventricle, but other than that there doesn't appear to be any other problems. I know PH was mentioned when the clinicians were muttering amongst themselves A full report will be sent to my rheumatologist once all the MRI images have been assessed fully and it will be up to him to decide whether I need any further investigations or need to start treatment, or whether they just need to keep a close eye on it for the time being.

I had a lovely email on Tuesday from the doctor carrying out the research, to say he was truly inspired by the courage and boldness I showed in dealing with my SSc, I wanted to tell him there are thousands of us sclerodermians all around the world which show the same courage every day and that I am not alone.

On top of this I have been experiencing oesophageal problems for a couple of months which are slowly getting worse, mainly with pain and food getting stuck in the area behind the breast bone. I did mention it but was told that the oesophagous looked fine when I had an endoscopy and barium swallow six months ago, but that they would be more than happy to see me back in the gastro dept. should I experience any more problems, (well yes I am, I am having problems swallowing, don't they listen??) So I guess I will just put up with that for a little while longer before I go back.

In between all this, sadly my mother passed away on the 23rd of December, she had been expected to make a full recovery, but then a the week before holiday she started to deteriorate and the last few days were very very difficult for her and she suffered a great deal, despite this, we did have some very precious moments together during that time and she put up such a brave fight to cling to life. The funeral was yesterday, I feel we gave her a lovely send off, which she deserved, so a very difficult end to one year and start to the next.

I do feel sad and I will grieve for my mother for a long time to come, but I do have a lot of happy memories to keep me going and treasure while I continue my battle with scleroderma and if I am anything like my mother, I will not give in I and will go down fighting right to the very end, bless you mum.

Best wishes and a belated Happy New Year to you all and I hope you are all managing to keep as well as possible and sorry about the extra long post.

Sandy B

#2 Jeannie McClelland

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Posted 13 January 2011 - 04:45 AM

Sandy, your post touched me deeply. I'm very, very sorry about your mum - she sounds like a wonderful woman if her daughter is anything to go by.

Warmest hugs and wishes,
Jeannie McClelland
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#3 Joelf

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Posted 13 January 2011 - 07:02 AM

Hi Sandy

Like Jeannie, I was very touched by your post and also by the courage you've shown over your very difficult health problems.

As per my PM I am thinking of you and your family and can understand totally some of the anguish you are suffering.

Best wishes

and

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#4 Buttons

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Posted 13 January 2011 - 07:05 AM

Sandy, I just want to say that I'm thinking of you because I know how difficult it is to lose a loved one at this time of the year. My own father died a number of years ago on New Years Eve.

You take care of yourself.

Best Wishes

Buttons

#5 NorthStarHope

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Posted 13 January 2011 - 10:54 AM

Dear Sandy,

I am so sorry for your loss, my mom also had pneumonia last year, and it was truly an ordeal, I thought I was going to lose her, with my sister having diffuse scleroderma and in and out of the hospital and my mother had fallen ill, getting through another day felt almost impossible, but everyday I thank my lucky stars that my mom is okay now, because it was not more than a few years ago that she lost her mom and her sister just a few days after the holidays. We were at my grandmother's funeral and there we were told my aunt was rushed to the hospital. Life is so sad sometimes , but somehow we find the strength to continue on.
Many hugs your way :emoticon-hug: :emoticon-hug: :emoticon-hug:

Please take good care!

northstarhope* :emoticons-i-care:  :thank-you: 


#6 Amanda Thorpe

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Posted 19 January 2011 - 04:22 PM

Hello Sandy

I am so sorry your mother passed away, particularly just before the holidays.

Take care and keep posting.
Amanda Thorpe
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