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Undergoing Stem Cell Transplant


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#21 Lucy

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Posted 29 November 2008 - 06:34 AM

Hi Sharon and Craig,
So happy to hear all is going well. Can you please tell me what are the numbers you are looking for in your blood work. Is it white blood cell count only? Also what are they now and what do they need to get to before you can go home? Just checking against the high dose Cytoxin number I have.
thanks
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#22 aka79

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Posted 29 November 2008 - 01:50 PM

Wow, that is great news!!

Thanks for keeping us posted and sharing your experience. I love reading this thread and finding good news everytime!! It makes my day and I'm sure gives a lot of hope to all of us in the forum!!!

Warm hugs to you and your husband!!!
Ana

#23 scragporter

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Posted 30 November 2008 - 06:30 AM

Hi Lucy,
Dr Burt is very cautious with his patients and insists on coming in every day to review what’s going on we even have his cell number if we need anything. He draws labs daily unless we have a fever or other abnormality.
The labs that are drawn every day are a renal panel CMP which monitors electrolytes like potassium and magnesium these are replaced as needed. The other lab is a CBC or complete blood panel which monitors the red, white and platelets cells. A hemoglobin part of the red cells are checked for anemia a number above 9 is good we dropped once down to 7.8 and she had two units of blood which are specially treated. Sharon’s platelets are low a normal count is above 100 this is normal post transplant these deal with clotting Sharon is careful when brushing her teeth these have yet to need replacing. The white cells which fight infection are counted as part of the CBC a normal white cell count is 4.5 -10 , 4500-10,000 white blood cells/mcL (cells per microliter) Sharons count today is 0.1, Neutropenia is when the neutrophil or the weight cells that eat infection are below 2000. Sharon’s are too low to count so you have to be a germ a phoebe and wash your hands all the time. The Northwestern has a reverse air system for the whole floor as well as individual rooms usually most BMT units have only individual room and you are isolated more we get to escape for walks three times a day. When you enter the department you come through it seems an air lock with two sets of doors neither will open without the other being closed first. It’s like a scene from 2001 a space odyssey without the space suit you get gloves and mask instead. Sharon’s doing well today no fevers and her appetite is coming back and she is feeling a little stronger. We keep marveling at the visible changes to her skin and the simple things she can now do that were difficult before.
All the best Craig and Sharon

#24 Lucy

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Posted 30 November 2008 - 07:35 AM

Thank you Craig and Sharon for sharing your info. I am just at a point of starting to consider/investigate Stem Cell. It is an option available to me. I understood all the info and numbers you provided Wow is all I can say at this moment. I got the message you really need to pick your facility.
Thanks again so glad to see you are a team working together to get through this.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#25 Peggy

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Posted 30 November 2008 - 04:57 PM

I sent you a private message with some questions. I just want you to know how happy I am for you that things are going so well. I hope that it continues to get better each and every day and that you will get stronger and continue to see such great results. You are blessed. Thank you for keeping us updated.

Warm hugs,

Peggy

#26 ozzy69

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Posted 01 December 2008 - 03:30 AM

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

#27 scragporter

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Posted 01 December 2008 - 08:05 AM

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

#28 Shelley Ensz

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Posted 02 December 2008 - 09:10 AM

Hi Craig,

How is it going today?
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.

#29 canon

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Posted 02 December 2008 - 03:43 PM

Sharon and Craig,

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

With gentle thoughts,

Judy
A happy heart is good medicine.

#30 scragporter

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Posted 03 December 2008 - 05:57 AM

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

#31 Shelley Ensz

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Posted 03 December 2008 - 10:32 AM

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.

#32 canon

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Posted 03 December 2008 - 03:47 PM

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.

#33 jefa

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Posted 03 December 2008 - 08:54 PM

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)

#34 PrincessB

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Posted 03 December 2008 - 10:58 PM

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?!)

#35 scragporter

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Posted 04 December 2008 - 07:27 AM

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

#36 PrincessB

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Posted 05 December 2008 - 12:27 AM

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?!)

#37 scragporter

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Posted 05 December 2008 - 07:27 AM

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

#38 ozzy69

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Posted 05 December 2008 - 01:59 PM

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. [b] :) Thanks you for keeping us updated. I love reading your messages.

Lots of hugs,
Nina Lynn

#39 canon

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Posted 05 December 2008 - 07:05 PM

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.

#40 Peggy

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Posted 06 December 2008 - 07:58 AM

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