Thursday, December 27, 2007
She did have a good session with a physical therapist friend, who now practices Cranial/Sacral/Energy work, and hopefully she can start getting more of this kind of treatment, and maybe some specific type of acupuncture to help will pain soon. But the holidays are a tough time to get things to happen, unfortunately. Our friend Kelley, is one tough cookie. Hopefully more positive news to report next time.
One last thing, a fundraising raft trip on the Yampa River has been offered by the owner of O.A.R.S. This will be a 5 day trip, launching on May 22nd, at a cost of around $850 per person. All profits will go to Kelleys account with the NTAF. Please reply to this blog if you are interested in finding out more about this trip, and/or reserving a spot on what will undoubtably be an unforgettable experience.
Monday, December 10, 2007
The big winner and giver of the evening was Jeff S, who acquired a stunning watercolor of women outrigger paddlers in Hawaii, donated by Ronaldo Macedo of Maui. This auction item was coveted by several in the crowd, and the bidding reflected the passion this piece of artwork inspired, I think in large part because of how much it evokes the spirit of Kelley. The final bid topped out at $3,700.
We visited with Kelley today and shared some stories with her about this event she so much wanted to be a part of. She wants everyone to know how much she appreciates the collective effort and generosity displayed by the community that contributed to this event. I think it’s getting a little easier for her to receive, but the success of this event was bound to be overwhelming for her.
To me, Kelley’s daily life still requires a monumental effort. She is of course being very proactive in her recovery and learning to cope with her disability and medications. But it comes with a price, which manifests as nerve pain that cycles around on a continual basis. The exercises and therapy she needs to do to make this get eventually better, makes the nerve pain worse for now. She has experienced some ability to get muscles in her leg to fire and move. Although these movements are currently minor, they are still very encouraging and she is determined to work as hard as it takes to keep it coming back. Her strength and determination continues to inspire.
I believe planned visits are very good for her and are welcome during this time when her pain is not so intense she can’t interact, but present enough for conversation and visiting to be a welcome distraction. Visits should be planned with her in advance, and may be cancelled on short notice if conditions (pain/fatigue) change for her. I have noticed that Kelley still wants to be a considerate hostess, sometimes at the expense of her own well being, so folks need to be especially sensitive to subtle clues. Weekdays are probably the best time, especially while Kurt is at work, and evenings are generally not a good time.
Next few weeks will bring several follow-up tests and examinations to monitor her condition and progress. We will keep you posted on this, as well as on future fund raising events planned for late january down in bay area.
Tuesday, December 4, 2007
Make Checks Payable to:
NTAF Southwest Catastrophic Injury Fund
Note in memo section: In Honor of Kelley Kalafatich
Send to: NTAF
150 Radnor Chester Road, Suite F-120
Radnor, PA 19087
We would prefer you make your donation by check, because these are only charged a 4% processing fee, however
to make a credit card contribution (with a 7% processing fee) you can call NTAF at 800-642-8399 or visit www.catastrophicfund.org. If you want an acknowledgement of your contribution please request a tribute gift form by email to email@example.com. We have also prepared some fundraising flyers that we will be sending out through an email campaign. If you would like an electronic version of our flyer to send to other friends that we did not contact, again email this request to firstname.lastname@example.org. We will be providing future information on this blog regarding our fundraising goals, and progress on reaching those goals.
Thank you for your support, and providing the foundation for Kelley's recovery,
Kelley's Core Support Group
CONTRIBUTIONS ARE TAX-DEDUCTIBLE TO THE EXTENT ALLOWED BY LAW. THIS CAMPAIGN IS ADMINISTERED
BY THE NATIONAL TRANSPLANT ASSISTANCE FUND, A 501(C)(3) NONPROFIT PROVIDING FUNDRAISING
ASSISTANCE TO TRANSPLANT AND CATASTROPHIC INJURY PATIENTS. INFORMATION: 800-642-8399.
Kelley is home. We are currently in this mode of figuring everything
out. Thanks to you, we have a new home, new beds, new everything.
There is a learning curve. Kelley has to get into a pretty
disciplined routine for herself, all in these new surroundings. I
want to ask that we help support that the rest of this week. She
needs plenty of quiet time to think and to get organized so that her
new routine is not stressful. She knows what she needs to do.
Monday, December 3, 2007
Friday, November 30, 2007
Wednesday, November 28, 2007
Yesterday, Kelley's blood results came back. The absolute very last test of very many, all negative so far. She was the one who asked for this final test. The result showed positive for Schistosomiasis antibodies. Schistosomiasis is a water transmitted parasite that isprevalent in Africa and S. America, but virtually unknown in the USA.Please Google "Spinal Schistosomiosis" to understand more about this. Everything fits her symptoms and findings. It also explains some non-typical TM results in her MRI scans. Furthermore, the Schisto parasite could also be (is probably) linked to her liver cyst and maybe even the fibrous tumors found in her reproductive system. I'll repeat a'maybe' on that last one, but there are documented cases.This is pretty bizarre, and some of the doctors at UCD are excited about it. They plan to make a special case study of Kelley. I think that this will help her get more proactive medical attention from them. Happy about that. Kelley and I feel some relief that the cause has been found and that additional proof points away from other diseases such as Lupus or MS. Today was Kelley's discharge date. It has been postponed for almost another week. She will be treated with a drug called Praziquantel and also more steroids, all orally. This treatment should kill the parasites if they still exist in her body. The treatment can cause additional swelling in her spinal canal, and thus the steroids. It is a critical enough treatment to require further monitoring at the facility. Please help make this another quiet week for her. Thanks for everyone's support! Kelley has an awesome attitude, and I know that our support helps to fuel that fire. Kurt (p.s. Kelley had been telling all of us and the doctors from day one that she was concerned that this might be related to what was happening to her. She knew she was exposed to this parasite when she did the Blue Nile expedition 3 yrs ago. Thank goodness she showed the tenacity we are all familiar with, and insisted they do this test! Even though previous doctors she had talked to about this, had dismissed her theory. Sue)
Monday, November 26, 2007
Wednesday, November 21, 2007
Janice, Howard, Teal and others in Coloma are setting up a fundraiser at the Sierra Nevada House in Coloma for Sunday, December 9th. There are donations coming in already for an auction! Howard is generously donating the restaurant for the festivities. Please contact Janice if you can help or donate, and of course; please come! I will post more details as they are known!
Janice's e-mail is email@example.com!
Please have a happy thanksgiving and be thankful for all that we have; including KK, in our lives!
Thanks and love to you all!
PS! Did you see what the cleaning crew did to the house? Amazing! Thanks construction and cleaning crew!
Monday, November 19, 2007
Leave it to Kelley to have a group of friends happy to take a Sunday to clean a musty and dusty house !!! Patti Boyer, Sandy, Darin O and Cheryl V armed with their favorite cleaning supplies, evicted the spiders, shook up all the dust and washed the place from head to toe. The supervisors, Jody and Carol, approved of our work and gave us the okay to go... Lance and Jim started early on the ramp and made plans for the bathroom renovations. It was fun and heartwarming to go through the house and listen to people telling how they knew Kelley and adding some fun story about her and her kindness. I loved the story about how Carol found Wilbur at the nurses station while Kelley was taking a test !!! The house is a god send, it is a Tahoe-type cottage in the woods surrounded by the city. There are 2 on site gardeners in goats clothing and plenty of room for Wilbur to roam. Very peaceful. Thanks again to the cleaning crew You Rock !!! Mary Ellen
Saturday, November 17, 2007
Comfy, not to ugly couch
Dining room table for 4 to 6 people
4 dining room chairs
front loading washer/dryer
pillows both bed and couch
light weight outdoor patio table with 4 chairs
bedroom table lamps
one standing living room lamp
Small lightweight book case
Small computor work station
What we think we have:
Lightweight end tables (number?)
Thin rug for living room
From Lisa and Sue
Space foam topper mattress
Friday, November 16, 2007
Rumor has it that KK is already doing wheelies and jumping curbs in a wheelchair. Hopefully, she will master the art of wheel chair acrobatics in just enough time to walk out of it! Her estimated release date (hospitals are like prisons as far as I am concerned) is November 27th. The docs are still working to figure out the best non-narcotic pain meds as nerve sensations are still causing KK quite a bit of discomfort. KK is working on visualization techniques, meditation and other non-western types of pain management. She still needs quite a bit of rest and the Physical Therapy wears her out. We appreciate everyone's sensitivity to KK's need to rest and those of us who are "first string" caregivers also need to remember that this means "us" too.
I have organized a cleaning party for KK and Kurt's new house on Sunday at 9 am. If you can help out and haven't already contacted me; send me an e-mail and I will forward you the directions and other information. My e-mail is firstname.lastname@example.org. I really appreciate the response!
Love to you all!
Tuesday, November 13, 2007
Kelley and Kurt have a house to move in to. Lance will be doing some alterations this weekend and there is help needed to clean up the house! I am trying to put together a list of people available to help out. Sounds like Sunday will be the best day. I am not sure that I will be able to make it; but I will be sure this all gets organized. If you can help, please send Sue and I an e-mail so that we can coordinate it at email@example.com and firstname.lastname@example.org.
Thanks to friends things are coming together to get Kelley out of the hospital as soon as they will let her.
Thanks again to everyone!
Monday, November 12, 2007
THANKS SO MUCH FOR CHECKING IN ON KK and for the e-mail response! It is truly incredible. I am forwarding your e-mails to Kelley and when she feels better; she will start to catch up. The goal now is to get her through REHAB and out of the hospital.
She is working hard in rehab, getting a little sore and resting! THANKS SO MUCH FOR GIVING KELLEY HER SPACE TO REST and ADJUST! I will post something as soon as she is ready for visitors. Right now she is appreciating the time to rest and recover; but loves and misses all of you! She looks forward to seeing those of you who will be able to visit in the coming months and e-mailing those of you far away.
Right now the big push is to find a house for Kelley and Kurt in Fair Oaks or Folsom. If any of you have any leads or reliable housing suggestions; please call Sue Norman at (530)400-9888. We are hoping to find them their own place with one or two bedrooms that is wheel chair accessible or convertable. Thanks for any ideas!
There is reallly no way to know what the future will hold for Kelley's recovery. It will be a day to day adventure for her and as you know; Kelley will be putting all her energy into healing!
We are still exploring the best Trust/Non-profit fund raising/account options and will let you know as soon as somthing is final.
Thanks for all your love and support and the e-mails!
Friday, November 9, 2007
Kelley will be in intense physical therapy for the next few days! The nurses will only allow family during her physical therapy hours. Kelley will be tired. PLEASE RESPECT KELLEY AND HER NEED FOR PRIVACY AND REST!
THANK YOU! Thanks again for all the love coming Kelley's way! She feels it!
I will keep this short! I am in KK's new room. They have moved her to rehab in room 515! She is doing much better, but she is TIRED! I don't know how to emphasize in a supportive nice way that KELLEY NEEDS SLEEP; NOT VISITORS! There is a constant stream of visitors; all very much appreciated; but with rehab and tests and moving rooms there is no time for KK to sleep and just have some peace. We all love her and want to see her and support her. There will be plenty of time for that!
They are doing another CAT SCAN tonight to check a spot on her liver and make sure it is not a parasite that she brought back from Africa. This is unrelated to the transverse myelitis.
KK's attitude is as you would expect; AWESOME! She just needs a little space to get used to some adjustments and catch up on some sleep.
Thanks for your understanding and ALL YOUR LOVE!!!
Tuesday, November 6, 2007
Sunday, November 4, 2007
Great news tonight! KK is doing great! Her attitude is awesome. She is not in pain and looking good! They have moved her to a new and bigger room that was originally for three people and now is only for two. At this time; she has it all to herself!!! She is enjoying it while she can and it is luxurious for a room.
HER NEW ROOM is 5139-02( the 02 is for bed 2) and her number is (916)703-8540!
It looks like KK may be up for visitors this week!!! Keep checking the blog!
Thank you all!!!
Kelley had a bit of an up and down weekend while they kept adjusting pain meds that would work without making her nauseous. Whatever they did today seems to be working well. Kelley got into the wheel chair and had lunch with the "girls" in the cafeteria. Still no more real news regarding the tests they are currently doing into causal factors. But she was feeling the best today then she has in quite a few days, and that is huge. All for now, Sue
Saturday, November 3, 2007
KK's pain seems to be under control and Kurt and KK are ready and open for visitors this weekend! Yahoo!!! Now that the pain is being managed KK can put her energy into healing!
You all have been amazing! KK and Kurt are so blessed to have your love and support!
If you need a user id and login to post on this blog you can use mine. Just give me a call and I will give it to you.
Again, thanks for all your understanding and support on the days that she was not up for visits.
Please check this blog before you come to look for changes or updates. We all keep this blog updated.
Thanks again and love to you all!
Friday, November 2, 2007
Thanks for checking in on this blog! We are hoping to use this to give day to day updates on how KK is doing and start to network together; both for support for her and support for each other.
PLEASE, PLEASE, PLEASE at this point DO NOT come to the hospital! KK and the family appreciate immensely how much love and support you want to shower on KK. The absolute BEST thing for her right now is time to rest, heal and figure out how to deal with the pain.
PLEASE, PLEASE DO...send cards, romantic comedy or happy DVD's, or your favorite book on CD, and if you wish money to:
Kelley Kalafatich c/o
You can send cards and letters to the hospital at:
Kelley Kalafatich East#5, Room 33, Bed #2
c/o UC Davis Med Center
2325 Stockton Blvd
Sacramento, CA 95817
or to her home address at: c/o Kurt PO Box 322 Fair Oaks, Ca 95628
Her e-mail is: email@example.com
CURRENT UPDATE AS OF 9 AM on November 2, 2007
KK is still trying to get the pain drugs under control. She is resting and her team of pain doctors is trying to find the right combination of meds to keep her awake and alert and out of pain! Progress towards this goal is good and it takes time to get the drugs in her system and see how she reacts.
They are doing another spinal tap later today. They are still trying to identify the specific antigen that is causing the lesion/inflammation on her spinal cord. At this point, the lesion is in the lower lumbar spine and she is still paralyzed from the waist down. The prognosis is still unknow. She may get better; she may not and she won't be out of the woods for it getting worse for another week.
We can not express how much Kelley, her core caregivers and her family appreciate the love and support of all of you!!!!!!