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Undergoing Stem Cell Transplant

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Happy Thanksgiving to all, we could see our boys on the web cam back home which made it special for us.

Well I am still Neutropenic which means I am susceptible to infection but each day is getting easier my glands have gone down and the nausea is easing with the new anti emetic and have started eating more. Generalized weakness and lethargy is an issue but I am still allowed to walk with a mask and gloves three times a day in circuits around the BMT unit. Another patient coughed when we were walking which made us panic and we both held our breath and walked in the opposite direction as fast as we could manage. We both have a germ paranoia Craig cleans the room down regularly with sani wipes and we both constantly wash our hands. The days are long but try and keep busy and prevent the boredom from becoming too much.

Cheers Sharon and Craig

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Yeh Sharon!!

 

They wouldn't by chance have a scrabble game there all nice and sterile would they or maybe a computer scrabble to help prevent cabin fever and boredom? What things do they have for you to do?

 

Caring thoughts,

 

Judy


A happy heart is good medicine.

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Hi, Sharon and Craig. Just wanted to let you both know that you have been in my thoughts. This is exciting and scary business. I am just glad you are able to be together through this. Hugs to both of you.


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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Hi,

Thanks for your kind thoughts another day towards a brighter future. I am already seeing some changes 4 days post transplant most noticeably the skin on my hands has started to soften and I can see wrinkles where it was taut before and my fingers are now able to extend further. I think a similar thing is happening to my face as I have a different sensation to my cheeks. The Occupational Terrorist/ therapist is working hard on my range of motion and the looser skin is wonderful to see. My leg swelling has vanished and seeing normal ankles for the first time in a long while. My breathing feels ok. My white cell count is 0.4 with no fevers I start neupagen shots again tomorrow to get the new immune system working quicker.

 

Thanks for the scrabble idea we have a lap top and the rooms are large with plasma screen TVs, films and also internet keyboard attachment and a pull out bed for visitors to stay. The 15th floor of the Northwestern yields me a striking view of Lake Michigan, John Hancock Tower and Oprah's penthouse in the water tower seeing the mist this morning covering the sky scrapers was very different to the vistas of Arizona. At night Craig says it looks like a scene from the Blade Runner movie.

 

Thanks for your words of encouragement.

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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

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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

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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

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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

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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

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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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