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Busy With Transplant


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#1 nmdamgud

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Posted 04 December 2007 - 08:01 AM

hey all....

koan reminded me via email today that i haven't checked in here in quite awhile. so i thought i'd take a few minutes to explain where i've been hiding.

my sister was diagnosed as having common variable immune deficiency disorder, or cvidd, about 10 years ago and has maintained her health with gamma globulin transfusions monthly ever since.

about a year ago, her health started deteriorating. she was constantly exhausted, and her body was covered in bruises. she exhibited all the symptoms of lymphoma; however, there are NO cancer cells in her body...and they've biopsied everything. her bone marrow is only barely producing blood products: whereas we have a platelet level of about 120,000...she needs platelet transfusions 3x a week to maintain 6,000. her hematocrit is around 15. it should be in the high 50's or low 60's. she has no b cells whatsoever. however, (and here's the stumper)...she's massively producing t cells. and those are attacking everything else. there is no "diagnosis" because they have no clue what she has. she has managed to stump the mayo clinic doctors...and that's tough to do! (this seems to be a major talent in my family...not exactly a claim to fame you want!) the dr who is treating her at mayo attended an international transplant conference about 2 weeks ago...and presented her case. it stumped everyone. the only thing they all agree on is that she needs a stem cell transplant. they can't agree on what treatment should take place before this occurs, tho.

so the siblings got together and had a blood-letting party...to see if one of us matched her well enough to be a donor. against all the odds (there's that family thing again!), i won the lottery. as i am 12 years older than she is, and have "been exposed" to foreign dna (because i have children... learn something new everyday!), i was the least likely match. we should have known. :trumpet:

anyway. my sister and i have taken up temporary residence in scottsdale, az. we have been very blessed in that a friend of the family has given us complete use of a very nice condo (with no less than 4 heated pools and 2 hot tubs!) free of charge until mar 1 (we HOPE she's home by then). she had her first chemo treatment on nov 30th, and depending on her blood levels and the results of another bone marrow biopsy in 3 weeks, we will either be prepped for the transplant, or go thru another round of chemo first. they're trying to kill off those t cells so that they don't interfere with my stem cells. it's been an amazing learning experience...one i would wish on no one.

the people at mayo are just incredible. for a world class cancer center, there is an amazing lack of arrogance there. i thought we would be dealing with monster egos, however, mayo doesn't put up with that. if an employee is seeking only to further their own career, they're asked to do it elsewhere. their number one priority is patient care, period; and every employee there is necessary and important to achieve that goal. consequently, every employee is treated with courtesy and respect (imagine THAT!), producing happy, fulfilled employees. each of them feels they've contributed to the welfare of the patient. the rest of the medical profession could...and should...take lessons.

when the time comes, i will undergo a thorough physical; i have already been told that, being married and monogomous for 30 years, as well as never having used needles in my life, makes for a good donor. when they questioned my history, i told them i was boring...and was told boring is GOOD!
then i will undergo a series of injections for 5 to 7 days, forcing my bone marrow to mass produce stem cells, which will then spill over into my blood stream. they will then extricate them by aspheresis (very similar to dialysis...they run my blood out of one arm, through a machine that will scoop out the stem cells, and back into the other arm!) twice, and infuse them into my sister. the interesting thing about this procedure is the posibility of rejection...it seems my stem cells will try to reject her body...the opposite of every other transplant. i'm already having a talk with them. however, the better the match, the less chance of rejection, and we were a perfect 12/12 match.

meanwhile, our families do their best in nm without us, as life goes on. our husbands must work, and while my kids are grown, hers are only 13 and 11..and still in school. our husbands, her kids, and our mom will be here for christmas, i will hopefully see my kids and granddaughters sometime in january. it looks like the transplant will actually take place sometime between dec 27th and jan 10th. when i am done, i will then go back to nm to her house to take up residence and care for her home (her husband owns and operates a business and works long hours). mom has been doing it for several months already, with our other sis and i spelling her about once a month. however, she wants to be here in az with my sis during and after the transplant.

it will be a long road to recovery: 45 to 60 days in the hospital immediately after, in a specially ventillated/filtrated room; she will have absolutely NO immunities during this time and will therefore be vulnerable to everything. visitors will be required to wear gowns, masks, etc, she will be on a special diet, and no plants will be allowed. then she must stay here near mayo for 100 days after the transplant. she can then hopefully go home with follow up care by her local oncologist with monthly trips to mayo for up to a year. she will assume my blood type when this is over; IF her hair falls out from the chemo and radiation, it is entirely possible she could inherit my hair color and texture as well (she asked if she could have my dna for big boobs, too...they said unlikely. party poopers)!!

in the midst of all this, we have moved. my poor husband and son did practically everything w/o me...i found the new house, signed the papers, and left. we moved from the santa fe area to the albuquerque area, about 90 miles...(and back to cable internet!...although i'm not home to enjoy it). it will remain a house and not a home until i get back to it full time, but that's ok. we know where our priorities are.

hope you and yours are ALL doing well, and i wish each and every one of you a blessed holiday season. don't take your families for granted...enjoy them. remember to give thanx for the gifts that truly count.

and here's to a happy, prosperous, and above all, a HEALTHY new year to us all! :thumbsup: :flowers:

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#2 KoanYorel

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Posted 04 December 2007 - 08:32 AM

My prayers continue to go out for you all M'Lady damgud.

You brought me to tears this early morning. But that's a good thing I'm told.
(At least my face got washed. ha ha)

Press on!
The only easy day was yesterday.

...some do, some don't; some will, some won't (WR)

#3 DSTM

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Posted 04 December 2007 - 09:53 AM

Hi 'nmdamgud' Sorry to hear about your Sister,and wish her and you the very best in the coming months ahead.
You are both in our Prayers,and hope all goes well.Please keep us informed of the outcome.
I was touched by your story,as was Koan Yorel.















#4 cowsgonemadd3

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Posted 04 December 2007 - 10:41 PM

So sorry to hear this. Its been so long. I was wondering where you had went to.
I hope she gets cured!

#5 no one

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Posted 05 December 2007 - 12:34 AM

God Bless all of you involved there .

"Not everything that counts can be counted, and not everything that can be counted counts."

"Whoever fights monsters should see to it that in the process he does not become a monster"

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#6 nmdamgud

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Posted 17 December 2007 - 01:37 AM

thanx, guys!

i'll update here as i can. the chemo round went well; however, 6 days afterwards sandy came down with pneumonia and was admitted to the hospital. her white blood cell count is zero; she is therefore vulnerable to any and every infection out there... so she's in the hospital for the duration already. we were hoping she wouldn't have to be admitted until after christmas. i was notified on friday that we will begin the process for transplant this week as her blood levels aren't recovering. we're hoping to begin injections either friday or monday. they apologized for making my christmas uncomfortable (due to my neck trouble, i'm told the pain will unfortunately be worse than normal). however, i truly feel that i am blessed in that i'm getting to give the kind of Christmas present that Christmas is supposed to be all about.

hubby is due here tuesday nite; i miss him and am really glad he'll be here. it's been hard having no one to lean on emotionally. i make myself be bright and cheerful for my sister at all times. most of the time i have total faith that this is going to go just fine; however every now and then a small tremor of fear creeps in that this won't work....normal, i suppose, but just the same i'm looking forward to having someone to share those fears with, someone to keep ME positive! our mom will be here saturday with sandy's kids, her hubby will arrive next tuesday just in time for Christmas. we have 4 swimming pools here at the condo that was donated to us...2 of them are open and heated all winter. a friend who lives here i met online sent me a list of things to do with the kids while they're here, so there's plenty for them to do! i've never seen so many lights...i guess the citizens make up for the lack of a "white Christmas"! it will be fun to go out for drives at nite. every nite coming home from the hospital i notice more and more decorations up!

hope all are doing well, have very, VERY merry holidays!

blessings to all,

damgud

#7 KoanYorel

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Posted 17 December 2007 - 11:42 AM

Press on M'Lady - damgud

You and yours are in our prayers and thoughts here daily.

It's nice that some of the family will be able to gather together there during the Holidays.

Enjoy the lights and the sights around and about.

Tell your Sis to fight, fight, fight. Positive attitude - you know?

R,
Koan
The only easy day was yesterday.

...some do, some don't; some will, some won't (WR)

#8 MaraM

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Posted 20 December 2007 - 09:35 PM

Gosh, I just spotted this thread but what a wonderful, courageous and loving woman you are - you have my sincere admiration and very best wishes for both your sister and yourself.

Merry, merry Christmas and may it be filled with magic for you and all those you love!
Never let your computer realize you are in a hurry or just typing the last few words of a vital document.

While outer events might make one happy or sad, happiness itself is entirely internal, and at all times completely within one's power.

#9 nmdamgud

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Posted 22 January 2008 - 12:17 PM

i guess it's about time for an update!

dec 26th sandy (my sis) had several seizures and went into a semi-comatose state. we thought we were going to lose her. her brain had swollen so much it was pushing her uvula down her throat. a fungal infection was raging through her body. most of us are exposed to fungi daily, but we have the antibodies and immunities to fight them off continuously. she does not...and fungal infections are the number 1 killer of immune-deficient patients.

however, she pulled through it...we were at her side constantly, praying, reminding her how much she was loved and needed, etc....but it weakened her considerably. so the transplant has been postponed for 2 to 3 months...more if necessary. but scans and xrays (kid gets an mri weekly, chest xrays daily...and whatever else they need in between!) show the infection shrinking slowly. they are supplying her with everything she needs right now...red blood cells, white blood cells, and platelets. until about a month after the transplant, when she will at long last be making her own. it takes the stem cells about 8 days to find a "home" in her bones...and 12 to 20 to grow new marrow and start producing blood products. amazing, isn't it?

since this went from a 3 to 4 month ordeal to a minimum of 6...and likely closer to 10....month ordeal, hubby and i are moving their 2 kids into our home indefinitely. we are getting them transferred to the schools here (which are actually rated better), and as we have a 4 bedroom house and only 1 kid left at home, they'll each have their own room. and hubby and i will be together more than 1 or 2 weekends out of the month.

thank you all for your prayers, please continue them! we need every one of them...and are grateful for them all.

will update soon!

damgud

#10 KoanYorel

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Posted 22 January 2008 - 12:23 PM

Thanks for the update M'Lady Damgud.

I know and can say "prayers" and moral support continue from the BC members here for you all there.

Tell your Sis she has world wide support here - no doubt. Fight, fight onwards.
The only easy day was yesterday.

...some do, some don't; some will, some won't (WR)

#11 need TOS

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Posted 22 January 2008 - 11:54 PM

I just found this tread, and would like to say that your family is in my prayers, and in my churches, I called the prayer board 5 minutes ago. You now have a bunch of support from Akron, Ohio. I'll pray for you all continuously during and after the ordeal is dealt with.

Wishing you and you're family the best,
Steve
Forgiveness is forgetting about a past that could have been

#12 Teenage.Zombiee

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Posted 25 January 2008 - 01:52 AM

I wish you and your family the best :flowers:

Hope your sister gets well too. Reading about her made me cry. You and your family are in my prayers :thumbsup:

Teenage.Zombiee is back ! :halloween:





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