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PrincessB

Astis Trial

8 posts in this topic

WARNING - this is long!

 

Hi everyone,

 

I got out last Saturday after 19 days in hospital, boy, did it feel longer than that!

 

On day 1, they put a catheter in my chest that they used the whole time I was there to give me drugs. It feels uncomfortable, but you get used to it. The next day, nothing happened. On day 3, they started four days of chemo and on day 5 they added another type of drug for three days to suppress the immune system. I didn't have any side effects from the chemo, but the other drug gave me a fever which wasn't much fun. Then on day 8, they gave me back my stem cells. While they were being given through the catheter, I could taste and smell something, it was strange (they said it was like artichoke, but I'm not convinced, I can't put my finger on the flavour).

 

At this stage, I was put into isolation and from then on, I was waiting for my white blood cell count to start going back up. I was at pretty much nothing for 8 or 9 days and was very lucky in this time not to get any infections or anything. I experienced sickness, diarrhoea, a skin rash and a lack of appetite, but I got off very lightly. During this stage, I had growth factor injections to kick start my bone marrow, and three transfusions each of red blood cells and platelets - thank you so much to all you donors out there, I can't give blood anymore but keep up the good work and encourage your friends and family!

 

The worst part about my time in hospital, particularly in isolation, was the loneliness and boredom. I was warned about it, but you can't really prepare yourself and I spent a lot of time crying! The happiness I felt when they said that my cell count had made quite a big jump one day and then a really big one the next and they were able to tell me when I could go home can't really be put into words. It's so good to be home.

 

I have had one out-patient appointment at which they checked to make sure my bone marrow was producing cells well on its own, and I will have one more in the haemotology department before they hand me back over to the scleroderma doctors. It will be six months apparently before we can hope for any skin improvement, but hopefully my lung scan in three months will show that the interstitial lung disease has been stopped in its tracks.

 

Sorry this is so long, I just wanted anyone interested in this treatment to know what happens. If anyone ever has any questions, just send me a personal message.

 

Hope you're having a good day x

 

They'll never read this but THANK YOU to my mum, Ian, my dad and Rich for their love and care, and to the doctors and especially the nurses at the Unité de greffe de moelle at the Hôpital de Hautepierre, Strasbourg.


Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

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I've been wondering how you were doing, so glad to hear that things seem to have gone well. The 19 days must have been horrendous, makes me feel ashamed about my whingeing when I go in for 4 or 5 days for Iloprost! Keeping my fingers crossed that the treatment has worked for you,. Hope you continue to enjoy your freedom.

best wishes

Lizzie

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Congratulations on your stem cell transplant, PrincessB!

 

It sounds like quite an ordeal but I'm very glad you didn't have any complications. I hope you start to improve now, and continue to do so.


Warm Hugs,

 

Shelley Ensz

Founder and President

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.

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You are so brave!

We are rooting for you, your health and remission.

 

hugs,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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So glad everything went well, PrincessB and thanks for sharing so much detail about your procedure. Sounds like a positive experience overall, in spite of the low moments. I hope the results eventually prove to make it all worthwhile. Keeping my fingers crossed for you and sending lots of hugs.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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PrincessB,

What a wonderful report on the whole process of your stem cell transplant. I'm sure it hasn't all been a picnic. But my wish for you is that once your recovery is complete is that you have many, many picnics in your life. Take good care of yourself.

 

xoxo emmie

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Princess,

Thank you so much for taking to the time to give us a recap of your experience. It was very interesting and encouraging. You were very brave and the crying was just a natural reaction if not drug induced for that matter. It sounds like you were well taken care of and had a lot of support.

 

I hope you continue to see improvements and look forward to your next update. I want to read more good stuff.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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