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scragporter

Undergoing Stem Cell Transplant

69 posts in this topic

Craig and Sharon ,

 

Thanks so much for the updates. I have been out of town for the Holiday and did not get to read everything unitl yesterday. I am so glad that things are going well! It is great..I love the updates.

Again thanks for keeping us informed.

Nina Lynn

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Well today is Day 6 we have two more days until we should see the white cell count start to go in the right direction and we are still fever free touch wood. Scrubbing the room down with the sani wipes is working. Sharon hates the smell so I try and do it while she is washing. We try and keep the clutter to a minimum and wash our hands continuously. Sharon’s platelet count is low and they are going to recheck it later today to see if she needs some platelets transfused to aid her clotting. She feels good and appetite is returning.

 

Well Snow has hit Chicago and is obscuring our view of Lake Michigan. I might have to borrow Sharon’s heated gloves on my expedition back to the Hotel later. At least she doesn’t have to worry about the Raynaud's and cold in her sanctuary that is the Northwestern.

 

Here is the link to our blog from ISN's Scleroderma Story Collections page:

 

Sharon's Stem Cell Transplant Blog, "Spreading our wings in Windy City". Sharon and Craig.

 

Thanks for all your messages and well wishes.

 

Craig and Sharon

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Sharon and Craig,

 

Thinking of you today for tomorrow. Have a good night.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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We had high hopes for today but I guess giving birth to a new immune system can vary from person to person. Sharon’s white cell count is still 0.1 and no neutrophils so we continue with the isolation and hand washing. Still no fevers or signs of infection touch wood. It feels like skating on ice each day getting nearer to the edge of the pond where you can be safe and worrying any minute the ice could break and you are going to have issues. On the menu today we have blood ordered to rectify a low hemoglobin and an infusion of platelets to get this clotting factor up. Sharon feels great and is being very patient. I showed Dr. Burt the Immunologist performing Sharon`s stem cell transplant the medical resources on this site as he wasn’t aware of it.

 

Thanks for your support

Craig and Sharon

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Hi Craig,

 

Every minute post transplant without an infection or setback complication is a great step forward. Here's hoping this is another day towards better health for Sharon!


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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Sharon and Graig,

 

Taking one day at a time must be difficult but it is what we have. Keep us posted and wish you well always.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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Hi, Sharon and Craig

 

I just wanted to stick my hugs in here some place. I am thinking about both of you with very warm thoughts (completely sanitised, of course).


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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I remember only too well how I felt on the first day there was a possibility that the count would have gone up - in fact, mine went up and then fell again, before going up again properly, which is very common too. Every day in hospital can seem an eternity, but you'll get there. I'm thinking about you, B x


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

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Hi,

 

Day 9 is here and the white cell count is at 0.2 up from 0.1 a move in the right direction but a long way from where we need to be safe. Dr Burt checked under the microscope blood smears and they showed white cells too immature to count but are developing and our immanent arrival of the new immune system is in sight. Princess B and other transplant recipients what changes have you seen post transplant and how quick did you recover?

 

Finally today couldn’t stand the hair issue any longer as it was getting annoying as it was falling out in clumps and getting everywhere and itching so bad. With the platelet counts being so low shaving was out the question so Craig cut it with scissors and then trimmed the rest with clippers. It feels much better now and my collection of hats will be put to full use.

 

Sharon

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I can't believe you still had your hair! I lost mine exactly two weeks after the chemo to stimulate the stem cells. Hope you're not feeling down about it, I know I was devastated. It seems like it takes forever to grow, but to look at me just over a year later, you'd just think that I decided to have a trendy new bob.

 

The scarring to my lungs has healed itself, the skin on my forearms, chest and hands have all become softer and more pliable. Even my face is becoming plumper again. I wasn't very badly affected though, my skin score was only 15 I think, the lowest possible to get on the trial. I also hadn't yet felt the effects of the lung changes, but it was getting worse quite quickly.

 

I was back at work a month after I got out of hospital, I started back full time, then my boss encouraged me to work only in the afternoons, which I did for a couple of months. Physically, I felt OK throughout, terrible diarrhoea in hospital of course and some sickness, but once I was out I felt better. I was a bit depressed at times about my hair (you'll probably think I'm vain, I should have been worrying more about my health), but in about April this year, really started feeling positive and more energetic again (I had the transplant in September 2007).

 

All good things basically! I'm cheering your white blood cells on, come on you little beauties!!


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

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Princess B

Thankyou for your lovely reply I was pleased to hear about your progress and the fact you went to back to work a month following transplant, I too am looking forward to going back to work but it may not be that soon as I deal with sometimes infectious patients. How good were you with following guidelines when discharged with regards eating out? Diet? avoiding infection? Did you get any post transplant infections?

 

Losing your hair as a woman is a big deal but I realize that in time it will grow back. At present I have mouth sores and neupogen shot pain which unfortunately go with the whole process of which I'm sure you are aware of. The nurses and doctors have been fantastic I could not have asked for better care. Also with this unit you can go out of your room and walk the corridors thus getting some exercise and a change of scenery.

 

My skin scores were 22 so I will be interested to know what they would score me now, my skin is softer and more pliable for the first time in years my skin on the back of my hands is wrinkly sounds awful to some but my skin was so taught you could not even pinch it. I am working on getting my hands into better shape but they are loosing up somewhat.

 

Craig, my husband has been fantastic he's definately "my rock" i cannot thank him enough for all the wonderful support he has shown me throughout his treatment.

 

Thankyou for your support we want other people with systemic scleroderma that there are treatment options out there preferably before the disease progresses too far.

 

Waiting patiently for an imminent arrival of a new immune system or "little beauties" to arrive.

 

Best wishes Sharon

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Sharon,

 

I am glad things are going well. I am sorry about your hair. I guess it is a way to try new short styles when it starts growing back. :) Thanks you for keeping us updated. I love reading your messages.

 

Lots of hugs,

Nina Lynn

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Sharon,

 

That is wonderful news about your immune system kicking in!! Sorry about your hair. The good thing is it will eventially grow back. Thanks so much for keeping us updated.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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I am so glad to hear you are progressing in the right direction. I'm sorry about the hair but I bet you have quite an assortment of cute hats to wear. If not, you can have that be your first shopping trip when you are kicked loose.

 

It is because of your blog and information that I plan on trying to see if I am a candidate for this when I see my new doctor in February. My lung issues are starting to worsen and if there are no other options than this and he feels it's the way to go then we'll see. Your blog and your information have been so helpful and encouraging.

 

I so hope you continue to do so well. You are in my thoughts and I send nothing but good wishes your way.

 

Warm hugs,

 

Peggy

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Thankyou for your lovely replies,

We are so pleased that sharing our treatment has given others with scleroderma an insight into this treatment and hope others get the chance we have had. I have a friend also with scleroderma who is eager to see my results from the stem cell transplant as she also got randomised to chemotherapy control arm. It's important to get the treatment sooner rather than later the stronger you are the better you will deal with the teament regime. Preventing the complications from becoming permanent was a great insentive for me.

 

Today is day 11 post transplant my white cell count for the first time is coming up more substantially they are 1.4 on there way to the 4.5 we need, Dr Bucha who works with Dr Burt's says they are very elegant in there arrival like ballet dancers slow but perfect. I have finally been disconnected from my continuous IV. Most of my meds can now be given orally it's so nice to be free with out being tethered. I still have the central line so they can draw the daily labs and give blood products as needed.

 

 

I am slowly getting used to being bald and now I am free of bad hair days!! We still await more white cells to arrive so I'll be out of the neutropenic range. We continue to be cautious another weekend in hospital watching the brutal Chicago weather from the 15th Floor window, I'm actually not envious of being out in that weather.

 

Finally I would like to thank Craig for his ever loving support and care. He has been truly fantastic from the time I got diagnosed with scleroderma, he has been instrumental in the treatment that I have received and supporting me, my advocate and loving husband although he still won't even give me a peck on the cheek because of germs!

 

Shazza x x x

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Well done Craig, and all the other halves out there, who help us through!

 

My cheering them on is helping, I'm glad to hear :) I didn't have mouth ulcers actually, I did have a skin rash for a while, I'd forgotten about that, it was all over my feet and hands and legs, but they gave me some medication for it and it cleared up. Since I left hospital, I haven't really been ill more than a normal person. I take antibiotics and an antiviral every day to ward off illnesses. I was in hospital with gastroenteritis in September, but it was a precautionary measure. I haven't been told to change my diet, so I eat everything I did before, including shellfish, whatever. My appetite came back very quickly, even in hospital I was hungry, the nurses couldn't believe it. The food was awful though! Is yours all heat-treated too? The only meal I looked forward to was Coco Pops in the morning, the rest of the time I ate white bread and Coke. When I got out, all I wanted to eat were salads and sandwiches, all the cold food I hadn't been able to have.

 

My boyfriend would sterilise his lips so that he could kiss me, and his neck so that I could nestle in for a cuddle :)

 

Keep up the good work little beauties!


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

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Well this is Day 18 of being hospitalized and Day 13 post transplant, my white cell actually went up to 2 but today they dropped to 1.4 I was disappointed as they were going to discharge me today. Like princessB said that it's not unusual to drop and the rise again. Patience is a virtue!! Dr Burt did however allow me to leave the unit to go to the cafeteria, it was so nice to escape and get a change of scenery and a hot coffee. Apart from that I'm feeling great, eating well, the diet that your allowed is a lot less stringent they will let you eat salad! Hopefully Day 14 tomorrow I'm hoping to discharged back to the hotel. Thanks for all your wonderful messages.

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Hi Sharon,

 

Oh yippee, tomorrow will be a big day for you!!! Congratulations on making it through this phase. I bet you'll love your new "hotel hospital".


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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Freedom!!! The day has come Day 20 of hospitalization and Day 15 post transplant and Sharon has the all clear for discharge to the hotel. The central line needs to remain as it’s a tunneled catheter and the platelets are not high enough at present to remove it. The white cell count yesterday was 1.3 but today its 12.2 what a response. We visited the Hospital Chapel yesterday and asked for some divine assistance something helped. Sharon says she is," Looking forward to breathing some cold fresh Chicago air and embracing my cooking". I Hope her new immune systems up to it !!

Thanks for your support

Craig and Sharon

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I'm so very happy for both of you!!!

 

Christy


Love makes the world go around!

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Craig and Sharon,

 

That is great news!! It is wonderful to hear things are going so well!! I am sure things will keep improving. I went for lung test and CT scans today. They did not say anything about my CT scan but she did mention my lung scores were lower than three months ago. They give me a breathing treatment and it did bring them up some. I guess I will have to wait till the doctor calls to get the final results. Thanks so much for keeping us informed!! We are doing a happy dance for you!!

 

hugs,

Nina Lynn

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What wonderful news! You will truly have something to celebrate this holiday season! I wish you all the best on your new life that's ahead of you that is hopefully free of all that scleroderma does to you. You are a new and improved on your way to a while different life. I so envy you and am so happy for you!!

 

Warm hugs,

 

Peggy

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Hello,

 

My daughterwho is 11completed years .is suffering from scleroderma on medication since 5yrs.pretty looking girl has become partially cripled. So after going through few opinions we decided to go for stem cell transplantation. Since we stay in remote area of India with a few knowledge of doctors we are going for stem cell transplantation in a couple of days. You must be well knowledgeble regarding this therapy. Can you give me the procedure and period of treatment and success rate regarding it. I have a great gratitude if you reply for me, since having 11 years old girl with mental agony this will be helpfull to me.

 

thanking you

 

Dr. Damayanti,

M/o Ashu

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