Devastating hit

Hi everyone ....

Well ... yesterday at lunch time I had spoken with Joan, one of the transplant nurses. In our conversation, she stated that Debbie was still waiting on one test to return from PA, and that she didn't see any reason I couldn't start my logs to begin the final heave-ho. Well ... I was all pumped at that point, the final stretch, everything that had been done with the exception of this one test, had come back a go, and the team seemed very optimistic for my acceptance into the trial and to work with me as well. Then ... 4:15pm comes, I am in a meeting with my boss, Tina, and my cell phone begins to ring. I look at the number and immediately recognize it as Debbie's from UCSF. I told Tina, I really needed to take this call, she waits with me for a minute, then leaves the room as I believe, in hind sight, she heard my questionable tone change. Debbie stated that my PRA (Panel Reactive Antigen) had come back high, over the NIH limit. As she continued talking, I guess I was numb, as I missed some of what she said, and only upon my asking, "does this mean I am not eligible?" She responded that the cut off for this antigen regarding the trial is 50%, mine came back at 63%tile!! What did this mean? Where does this leave me? What am I to do, if all my doctors are telling me this is my only option right now, and I would be a fool not to take this chance .... what am I to do???

Well ... upon further discussion it is explained to me. PRA which is an antibody for which my only way of obtaining such a high level would have been from multiple pregnancy and miscarriage, as I have never had a blood transfusion, and this would have been my first and only transplant. The "anti-human" antibody ... Hillary explained in perfect terms to me upon my arrival home .... your body didn't want those little monsters in you, so it attacked, developing the antibody. She then proclaimed to me that she was "THE MIRACLE CHILD AHHHHHHHHHHH!!!" and I laughed through my tears. I was devastated last night, numb, exhausted from all the emotional stress of not only the transplant process, but all the family crap that has gone on in recent couple of years, since losing my mother.

What it means at this point. I was told, that although the NIH (National Institute of Health) makes the protocol guidelines and cutoff scores, this does not make me ineligible for transplant. ONLY the trial. The results of this trial may be public sooner than anyone thinks. Now, for the other depressing fact. It would appear that due to this 63% antigen factor, I will most likely wait longer for a suitable match with my donor, as well as a potential "desensitizing" treatment known as "plasmapheresis" or a treatment of cleansing my blood of the antibodies. This is something I still need to do some reading on, as it is all biology type stuff.

In a nut shell .... I am very down. This is something I guess I would rather have found out now, given the fact my health is failing, in spite of the results, I still have good kidney function, but I am uncontrollable and it gets worse with each passing week. I too, am sick, with no doubt, a strep infection, living with Hillary who had it last week, and all the stress, emotional and physical that has gone on in just the last two weeks, is catching up with me. I had to come home a couple of hours early today from work, as I couldn't swallow, couldn't keep my eyes open, hurt all over, and am just down. I would like nothing more than to curl up and be left alone.... for like 3-4 days until I could gather my strength again and come out fighting.

Suggestions were made to appeal to the NIH, but Hillary had the perfect scenario for that one. She stated that the NIH is government driven, thus our illustrious FDA. When in trials, they want the best of the best, the people that are most likely to prevail as "success" stories, not the possible rejects such as myself. (Also a risk of the elevated PRA - rejection), therefore, they make the cutoff at that 50% mark, the good 50 stay, the bad 50 go. In spite of this thought process, it is not uncommon 30-40% of all transplant patients, not just for the islets, are likely to have an elevated PRA. So ... that gives me continued hope.

I just need some time to rejuvenate my energy, my strength, my mindset. I feel like I have been beaten up and thrown out with the trash. I need to refocus and I have already started on that. I was told by Debbie, that wonderful little woman who has worked with me for the past 8 months in this process, very upset about having to make the call to me. Telling me how "excited everyone on the floor was to be working with someone like me who was driven, and 'not a whiner' ... that made me laugh!! The doctors and nurses alike all were just so optimistic that I would be a "go" and then this .... have offered up to answer any of my questions and help offer another alternative. I can't help but think that perhaps Doc Peter has eyes for an entire pancreas transplant ... lol ... I know ... I still have to wait for the most difficult of donor matches. But ... I see this as all too possible if I undergo the treatments to help cleanse my system of this antibody ... Hillary asked me this evening if that was something I was considering ... and I responded Yes ... even if it fails, I have the opportunity to gain more controllable blood sugars again, without the drastic, dangerous drops that take me down so hard I lose whole days, and often times a weekend, just coming back from one of these bad episodes. I am tired, and I am not sure how much longer I can keep up this rate of enthusiasm. I want to continue life, but I don't want to do it restricted to my home, or unable to work, and carry on with my simple pleasures of human connections.

So ... fund raising will continue for a while .... I hope to have some input from my new friends, Doc Andy, Doc Peter, (can't remember the names of the other two doctors, but they too, very personable), and of course, Debbie and Joan, who I could feel their disappointment in my being denied into the trial, would keep me in the front of the "what about" list, and hopefully, together, we will come up with a fix for me .... at this point, I would settle for just a patch!!!

Please keep the faith in my pursuit of accomplishing better health in living with this dreaded disease. I have seen the science come a long way in 37 years, as the endocrinologist in SF said, "you must remember the old days" .... LOL .... an appreciation for my long trip perhaps?? .... and the knowledge I have gained thus far. I look to learn even more, but have to admit, this biological breakdown gets mighty confusing the more in depth it gets.

Be well, please remain faithful on my behalf, as well as those kids to come after me!!

Peace and Love
(and a hug tonight too!!... as I could sure use one)
et

Latest Fundraising Effort

Hi ... a photo of the bracelets which are the latest fundraising effort.
They are baby blue; with small handprint (indicating Juvenile) and the words Hope for a cure!

They are $3 each and are considered an adult large .... fits most comfortably.
Please help .... as stated before ... all proceeds go toward travel expenses and anything left over will be donated to the JDRF ... the organization who backs so much research for this dreaded disease.

THANK YOU !!!!

Bracelets can be ordered through me here on the blog or my FB page, or through Hillary, and/or myself personally. Order 10 or more and we will pay postage.

Welcome this weeks Guest Blogger

Please Welcome, my friend, coworker, travel companion, baby-sitter .... you get the picture.

It is with heartfelt gratitude and appreciation that I present to you this weeks guest blogger, she has stories to tell .... given her fear of needles, the business in which had to be dealt with, and the long travel day in both directions .... I HAD A BLAST!!! Thank you .... do it again??? :D

So please give her a warm response ... lol ... and enjoy your musings as I try and get some photos off my camera. It has been a HELLACIOUS week and now I am sick, Hillary is sick, and tomorrow is Monday .... again.

Peace and Light
et

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Without further adue .... Heeeeeeeeeeerrrrrrre's Deb-Deb !!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hello to all friends, family, and followers of Eliza’s incredible journey. My name is Deb Schultz, but a few refer to me as “Deb-Deb.” I’ve decided to accept the invitation made by Eliza to guest blog for her this week. It’s the least I could do for her following our trip and the week she’s had. My question is, “can you suffer from jet lag if your vacation didn’t even involve an airplane?”

I’ve only had the honor of knowing and working with “Lizer” (as I call her) for the past 3 ½ years. At first, I preferred to keep my distance. I just worked quietly and listened. She sounded pretty tough sometimes, maybe had a hard edge to her. That’s probably why I didn’t know until the last year or so about her digestion … shall we say issues? Let’s just say that Lizer isn’t like the gals back in MN who I chose to be friends with. One afternoon prior to heading out to the back yard at work to take a break, she turned to me and said “pull my finger” as she pointed her crooked little index finger in my direction. Well, I’ve only known of men to actually expel when fingers are pulled, so I was curious as to why Lizer would tell me to do this. So, I did ~ HELLO!!

Now, fast forward to Lizer inquiring about her potential involvement in the Islet Transplant Clinical Trial via e-mail one weekend approximately six months back. She came to work that following Monday and informed us that she had e-mailed someone about becoming involved and that potentially it could mean a road trip to San Francisco. I do believe that I immediately shot my arm up like “oooh, oooh, Mr. Kotter” fashion, and said, “count me in ~ I’ve never been to San Francisco!” You see, I’ve always been up for road trips to places I’ve haven’t seen. Most of the trips I’ve been on have been with my husband, but I just had a feeling that Lizer and I could have a good time. Well, last week it came to pass…the trip to San Francisco that is.

I packed for every possible scenario. I had my GPS bitch for assisting us in finding our way, I had snacks (in part thanks to Kate, a very thoughtful
co-worker), I had my beading supplies, and a good book, but I also had my can of spray. The one that was a powder fresh scent and within easy reach while riding shotgun.

We left Chino Valley area close to 6:00 a.m. Saturday, March 6th. Approximately 13 ½ hours later we were driving across the Bay Bridge, paying our toll to enter into San Francisco. We hadn’t even listened to the radio at all the whole day. I didn’t even nap! My husband would be the first to tell you how unusual that is. I’m usually propped up against the window with my travel pillow and snoozin’ away within 30 minutes of a long road trip. We only stopped a couple of times along the way to grab a bite and then void. The closer we got to our destination, the more pumped I could feel myself becoming. Lizer shared a story about a trip she had with her mom and Hilly where her mom kept answering Hilly’s question of “are we almost there” by saying “we’re creepin’ up on it.” Eventually it was determined that Lizer’s mom had been reading the map upside down! They had been creepin’ up on their destination for quite a while! The last two hours of our drive were definitely the longest. We were beginning to get a little tired, but Lizer believed we were oh so close. Then, all of a sudden, there was the Bay Bridge. We didn’t expect to have to pay a toll to cross, but when we voiced our surprise at that the toll, the toll booth worker exclaimed, “welcome to San Francisco!” … and so it began.

We had an agenda to some degree. Monday would be “meet the staff” at the hospital. We HAD to cross the Golden Gate Bridge at some point. I had a few addresses for bead stores if time permitted. We both wanted to eat in Chinatown. Lizer wanted to see the Pacific Ocean for the first time. We both wanted to eat seafood. Lizer wanted to walk around Haight-Ashbury area, and I had no clue what that even was. Oh yeah, we were gonna take S.F. and cram it into our agenda for the next week.

Some of the highlights as I remember them are when we arrived at the hospital to meet the staff and we’re on the floor we’re supposed to be to meet Debbie, the staff person that Lizer has been e-mailing with and talking to on the phone for the past six months. Problem is we just didn’t have the room number of where to meet her, so we’re inquiring with a passerby. Then, from some number of rooms down the hallway to our left comes this voice that says, “I think I know that voice, is that Eliza?” Sure enough, here comes Debbie around the corner of the doorway with a big grin. Just so you all know, this wasn’t the only time Eliza’s voice was recognized before meeting someone personally. I don’t even want to share the details about walking on Haight-Ashbury window shopping when Lizer announces how clean the window of this bistro shop is where they have bistro tables inside next to the window as she starts to feel the glass, to which there wasn’t any. It was wide open. When she realized this, she cocked her head back (you know that way she does) and begins to cackle. Before long everyone sitting in that window area inside the bistro enjoying their coffees, etc. were laughing right along with Lizer. She just has a way of attracting a crowd occasionally. I continued to hear them laugh as we ventured down the block.

At the risk of making this the longest blog that Lizer has posted to date, I just have to share about the day she almost killed me. Oh yeah, that was when we got lost, the GPS bitch wasn’t helpin’ us out so she got unplugged and shoved in the glove box, and Lizer made a left-hand turn (apparently illegally). Neither one of us saw the huge signs prohibiting the left-hand turn. However San Francisco’s finest informed us, after pulling us over via a bull horn, about all three of those huge signs in addition to a plethora of other S.F. tidbits in the 30 minutes he chatted with the two of us. You’ll be happy to know that Lizer batted her baby blues and no ticket was issued. FYI - it was a double fine zone as well.

There are so many more of these stories that I could share, but if I make this blog that much longer I’ll be hearing about it from Lizer (‘cuz she’s gonna have to cut and paste it in sections to her blog site). Let’s just say that the goals of the week were met. Lizer hasn’t yet received word on all of the tests performed, but she’s still in the running. As great as the trip in itself was, unfortunately Lizer’s re-entry back into life in Chino Valley this week has been tough to say the least. It is when I hear of all the struggles of her week that she’s dealt with in addition to living a life with Type I diabetes that my heart just grieves for her. How much more can one person take? If anyone deserves this opportunity to change their life for the better, it most assuredly is Lizer! I say “bring it on!”

As a side note: Lizer? Thanks for having the courage to inquire about being involved in this transplant in S.F. Thanks for not killing me last week while on our virgin journey. Thanks for the phenomenal conversations. Thanks for just being you. I am believing that you will receive this transplant, it will be timely, it will go smoothly, and you and I can build on this friendship for many more years to come!

Bring it on!
Deb-Deb

Could someone tell me what day it is??

Hi All!!

I believe it is Thursday.

I got an email from Joan at UCSF today, telling me that some of the tests are still pending (most likely blood according to Kathy - Thanks) but that everything that has come back so far is okay.

Dad is alert again today, cranky and still not knowing why he is there. I left at 6 as I had to pick up the dog, and Hillary is still there after her shift. I am so tired that I feel like I am moving, even when I am not. I have been fighting this nauseating feeling off and on all day. I don't know if I am getting sick, or it is just all the stress of the last 14 days and no real time for me to process all that is happening. I am being told, and I know that I must do this, but it is so much easier said than done and that is I need to reduce my stress levels and TAKE CARE OF ME!!

That is all I can handle for tonight ... hope to have my camera back tomorrow so that I can perhaps post a couple of photos of my trip to SF. All I really want right now is to crawl in a hole someplace where no one can find me and just sleep .... just nonstop, no emergencies, no stress, no one needing me for anything ..... for just a day or two. I am beginning to feel extremely overwhelmed..... and with all that is going on now, how can I possibly try and push the fundraising, the yard work, my work, my continued education, etc ..... my juggling act is beginning to have balls flying everywhere.

To all I wish a peaceful and comforting night!!
Peace and light
et

Just an update

Hi ~

No word yet from SF. I know that no news is suppose to be good news, but was hoping to hear as I was told by Monday or Tuesday. I will wait another day or two as it isn't like I have my hands full at this moment.

Just in from hospital. Dad took a 360 degree turn for the worst last night only moments apparently after I left the room. He was agitated upon my leaving and I felt it best that he get some rest, and asked the nurse to keep an eye on him and perhaps check to see if he wanted something to help him sleep. It would seem the Ativan backfired as I was told it often does in elderly patients. He became even more agitated and then became combative which of course required more meds to offset the Ativan. They gave him Haldol and Fentynal. Upon my arrival this morning (late) he was out cold and unresponsive to any sort of stimulation without great irritation and agitation. He was mumbling all sorts of weird things. So I let him be and returned to work as he was out cold, falling asleep mid-sentence. Needless to say, they had to cancel the MRI of his abdomen as he needs to be able to comprehend directions and be alert. I did speak with the kidney doctor at this time. She seems to believe that although the MRI will be much better than the ultrasound, it is still not optimal given that they don't want to aggravate the kidneys with contrast dye (which is very hard on the kidneys). Seems to be theory that it could be cancer. If so, then I am correct in my call that I do believe he is about to do his journey to the other side. It is not like I don't know the classic signs, this isn't the first time, the second time, or the third time, recently, and in my lifetime. I felt bad leaving him tonight, as I don't care who you are, or what you may have done in your life, I don't believe anyone should have to die alone. Hillary called the hospital a few minutes ago to ask them to call her should they need her assistance during the night. He listens to her, and she has a knack for calming him down and making him know that it will be okay. She is scheduled to work tomorrow and they moved dad to the fourth floor this morning (out of ICU) and that is her floor so she will be able to check on him and do the oversight. She told me this evening that I need to break, as I look like crap, feel like crap, and have had multiple stress related high blood sugars since returning home on Saturday.

Ok .... I need to go to bed, it is ten and I still have to work.

Hope to have an update on the testing from SF and if I can start the last 30 days of logs.

Be well !!
Peace and Light
et

I hate Monday's

Good evening all,

Okay ... well, it is 8:00PM, I left the house at 6:30 this morning. I have been to the hospital twice today to see my dad and talk with the doctors, they located my camera in NV and will be mailing that back to me, and .... I worked my 8 plus hours .... very chaotic given what was there, and what came my way, in regard to not only work, but attitudes for something I didn't do as I was not even there last week. Just sort of took it all in stride and tried to deal with it all as it seemed to hit me. I still have some work to do here to drop off at one facility tomorrow before I head back to my office to deal with my work.

No call from the transplant nurse today. I hope that one more day will get me my call, and nothing is or has come back as non-qualifying. Will keep that special thought and prayer in the back of my mind for tomorrow.

Dad update - Work up tests came to the same conclusion that was made back in 11/08. He is not a surgical candidate. They will not operate due to the fact that his kidney function in now shot, his heart is 99% blocked, his carotids are 70% blocked on both sides, he had no viable leg veins for harvesting on for bypass, and would no doubt either die on the table, or end up on a ventilator. He does not want that as he feels that is not life. I give him credit for that. He has also developed some sort of internal bleed as his blood numbers are dropping. As I was getting ready to leave at lunch time I/we were approached by a case manager who provided info and applications for long-term care, tonight, I addressed this as well as a hospice option. Dad feels that he will think about it, but I do believe, as he verbalized it to me that he is going to die. :( I just can't believe, and am still not positive that he is comprehending all of it, that he is (perhaps in a brief lucid thought process, that he is aware of the severity of the situation given that he told my cousin Nancy that he was going home in two days. So in the morning I will see how he responded to the transfusion. He understands that the hospital's job is to keep him alive, period. A nursing home will do pretty much the same. A hospice setting will allow palliative care, comfort, allow him to go naturally on his terms (or at least his body's) and keep him comfortable as well. He understands and told me that he and my mother had discussed all this prior, I often wondered how much of this type of conversation he comprehended. I know that sometimes he can tell a story that seems very believable, and then in a split second that lucidness is gone and he is off on some other sort of tangent or tall tale. Other care people also saw this in the last 48 hours and stated "dementia. " I will do what needs to be done to make sure that his final days are as comfortable as possible, but see no real reason to prolong the ultimate outcome by allowing costly, and non-useful tests on a man that can not be fixed and for the monetary gain of the healthcare system. I believe in helping ourselves die with dignity, we do it for our animals, why can we not do it for our elderly, critically ill, fatal diseases without being negligent about it, or making it sound like a horrible thing?? I certainly hope that when I am done with my fight, and I have nothing left to give, that someone helps me to pass over to the other side with a little dignity and comfortably.

That is my soap box for tonight .... Hillary and I have done all we can do on our own for today. God willing, tomorrow is another day, and we will tackle what happens then .... then.

Sweets dreams all my angels ....
Peace and Light
et

I'm home

Hi Everyone!!

Arrived home yesterday about 1 ... Deb's husband Tim came and picked her up at my place which was way cool as I was wiped. Got all my bags in, reconnected with Maggie, started the wash so I could prep for work tomorrow, etc. I spoke with a couple of people upon my arrival and attempted to connect with my father to let him know I arrived safely and that I brought him some salt water taffy only to discover that he did not answer his phone. After a couple of hours, I tried again, then worry set in. I called and checked with my cousin Nancy and her friend Brian and they said they had not seen or spoken with him. I let another hour go by. Called again, no answer, threw Maggie in the car and headed to his place. Upon arrival we found the door locked, blinds open, looking like he had been in there, but no where to be seen. I didn't have a key to get in and Hillary was working. I went to the hospital, got Hillary's key and returned very unsure of what I may find. I was worried and pissed at the same time knowing that he had asked to be taken to the casino today with Hilly. Anyway .... got in ... no dad. Maggie was sniffing all over as if something was amiss. Anyway ... It seemed as though he had just gone out ... but I was questionable as the kitchen light was still on and his jackets were still hanging on the chair. I had Hillary check with the ER who had told her he was not there. Apparently, however, he was there and had been rushed to the cath lab and then admitted to CICU where he remained until this morning when I finally got a call from a nurse stating that he had called EMS yesterday for crushing chest pain. He is now critical but stable and being kept comfortable until a consult tomorrow to determine if now they can operate. Not sure why as in November 2008 he was deemed an unviable for surgery. He has known cardiovascular disease, and has been on the decline since prior to my mother's passing. I know you have heard me complain about the care of this man in recent months being noncompliant with his meds and still smoking and eating crap in my opinion. So I sort of gave up arguing with him as he is a big boy and capable of making his own call.

Hillary and I had a chat with him prior to me taking Hillary home earlier and he stated that he and my mom had discussed the matters at hand today, and he seemed fairly clear on what was going on in that aspect. So .... I guess ... tomorrow, Hillary will be working on the 4th floor and readily available to meet with the doctors should they present and not give me enough warning to get to YRMC with enough time. I will have some flexibility this week as I have to travel between campuses to cover for the other coder who is on vacation.

Anyway ... I am home.

My trip to UCSF went totally and completely without snag!!!! I was thrilled, they were thrilled and totally enthusiastic about me participating in this trial. With only 8 people taking place in SF I am holding out hope my tests pass the smell test. If they do, I will be required to do 30 days of logs at 3 levels of testing. All requirements for the trial via NIH protocol. If and when those are completed and data entered into the data base, I will be placed on the list. Then ... it is wait. Deb made comment that at the rate they drive in SF and that most donors were/are local that they must get a donor a day and my wait should be fairly short.

Below is a photo that we had taken on the Golden Gate Bridge the day after my discharge ( I think). I took in so much information and so many sight stimulation that I am not sure I remember it all. Certain things .... LMAO .... will be permanently burnt into my brain. If you get the chance, check out FB page of Deborah Schultz and her SF photo album. she posted many photos from our sight seeing adventures, as well as a few very unflattering photos of myself .... Gee .... Thanks Deb-Deb!! We had a wonderful week, lots of laughing, in spite of the business at hand. I hope to have some good news in that respect in the next day or two. As for my dad, only God knows at this point. He seems to have a good hour, then a bad hour, and having done this many times before, know that means nothing in the scheme of things.

(The photo went up above) I really don't like laptops.

talk later, and again, thank you for the continued support and prayers!!

Peace and Light

et

Miss Maggie is depressed!!
Hillary says Mags has been moping around since I left. Waited three days to eat her last dinner and basically has been in this position.... on m y bed just waiting for mama. I feel bad ... had no idea she would respond to my absence like this. I have gone away for a weekend and she was a little down, but not like Hillary is telling me. She has been on my bed today since 7:00!!

I hope there is no puppy prozac in her future .... LOL

I will be home soon!!!

Discharge today

Hello Everyone!!

Thank you for the continued prayers .... I think they are working in my favor. I am totally exhasted as the last 36 hours have been packed full of tests. On Tuesday, day 1, I had an X-ray, an ultrasound (which took 90 minutes), and a GFR (a kidney test which lasted about 6 hours). They removed more blood from me than I can ever remember being sucked out at one time. I was sporting 2 IV lines as they needed one just for the push of a drug called Omnipaque, which is only secreted through the kidneys, to test my kidney function. Today, I had to undergo what they called a MMTT (mini meal tolerance test)..... that sucked!! I had to half my insulin intake at 6 this morning, and remain within a range blood suger wise, then at 8:25 we stopped my insulin intake completely and I had to drink this Boost crap which was pretty disgusting and had to suck down about 20 oz of the stuff in 5 mintues. From there, we had to wait 60 minutes, check my blood sugar to see how high it went, and remove more blood, again at 90 minutes and then one last draw. By the end of the 90 minutes my blood sugar was 549!! They were checking to determine if I had any production of C-peptide and glucogon. There is a range that I must remain in or I will be disqualified. It seems to be the general consensus that all looks VERY good for me to participate.

I met, in the 36 hours I was inpatient, the entire staff in which would take part in my care as a transplant patient. Deb met the two surgeons and the two nurses involved in the preliminary screening which has gone on for the past 6 months. I signed my consents, and took part in a Q&A on Monday. Today, I met the endocrinologist who will over see my care as part of the study, and yesterday, the nephrologist (kidney) who did the GFR. She happen to be from CONN. All of whom 1 came in contact with were professional, friendly, and very workable, even with my warped humor.

I will and should hear about results in a few days, maybe before I leave the SF area, if not by Monday or Tuesday of next week. The sort of depressing part is that I still need to complete 30 days of logs and not until that is complete, and can't get started until I get the call about the results of all these tests. After the logs are received and entered into the NIH data base will I be placed on the list. Deb's theroy is that I won't wait too long for a donor as the way they drive around here people must be dying at a pretty good rate. We were told that most of the donors have come locally. The whole process of how they extract the cells and the sensitivity involved in the handling of the pancreas given its fragility, is facinating!!!

Okay .... well ..... I am going to head to bed now, it is nice to be back to the hotel, having heat now after 3 nights without it and being told this is the coldest some have recall of being in SF.

Hope to post again when I get home this weekend with some photos of the area and some more info on if I got the call before leaving the area.

Thanks again to all who have continued to keep me in thier prayes. I can't thank you enough. Also, the whole staying in a hotel for 45 days is not going to be doable, so having been here to check out the area and where the hospital is located, I am thinking maybe an extended stay or monthly rental.

PEACE and love
et

SF Update

Hello everyone!!

Well ... th1ngs are go1ng very well. We are do1ng a lot of laugh1ng over little things. We were introduced to San Francisco's finest today after leaving the hospital. I apparently made an illegal left hand turn ... LOL....no ticket cause Deb said I was batting those baby blues and he let us go... after a lot (30 freakin' minutes) talking and telling me that it would have been a double fine. Whatever !!! I apparently could have "killed your friend." She didn't see anything either ... so we laughed cause what she don't know won't hurt her.

The meeting went very well. Met all the folks that I have been chatting with for 7 months as well as both surgeons. VERY nice ... to talk to and look at!! They were very anxious about the whole process and I learned a little more about it. I did tear up a little while signing the paperwork, not sure why, but a sense that my mother was with me, or I wished that she was, came over me. Anyway ... it was a very informative and postive experience. I check in tomorrow at 7:45 am with tests to be run, labs first thing, the kidney function test tomorrow, and then the MMGT on
Weds, which will no doubt make me ill. I will try and explain it better in a few days.

We have taken a shitload of photos. We did the Golden Gate yesterday, bocu buck homes yesterday and today, shopped and ate on the pier and spotting the Pier 39 Sea Lions!! Too cute!! I am surprised it took me until today to get stopped by the police as I have made a few illegal U-turns. yesterday we checked on a new hotel, walked a bit on the beach until the wind/sand facial turned us around. It was a beautiful day but a wee bit windy. If this is as good as it gets warmth wise, I am only good for visiting. I haven't seen the Hippie area yet, and I so want to. Yesterday we had breakfast next to a medicinal marijuana smoke shop ... of course I took a pic!!!

Got to go to sleep early as I am wiped, and a little disorganized. Deb said to me earlier I wasn't wrapped too tight .... LOL .... hmmmmm.....what do you think she is insinuating????

Ok .... will try and touch base in a couple of days ....

Peace and Light
et

Heartfelt thanks for all the prayers and well wishes

Hello,

Well ... one more day of work, and packing, and laundry, and hopefully a little sleep before Deb and I hit the road on Saturday morning at the crack of dark. I am not nervous, not scared, just anxious to get things moving. This is hopefully the last phase before that any moment call to say they have a donor for me, a perfect match.

I am going to take the next week to try and regroup, reassess, regenerate, and calm myself from within. There is no better place for me to accomplish this than on the ocean. I find being on the ocean calming, a sort of place for me to worship and put life into perspective .... which is something I am so overdue for and in GREAT need. I am sure that Deb and I will have a lot of laughs .... and maybe some tense moments too, (I drive a Toyota), but we will be just fine. This is a new experience for me. I have done a lot of traveling ... but never like this. I have always been alone, with my mom, and/or Hillary ... you know, people who really know you and can tolerate you good or bad. Get ready Deb ... hehehee ... I have never been called a bad house guest, but as J&P can attest, there is usually some sort of ailment happening with me that makes a trip anything but dull.

So ... it might be a couple of days before my next post, but please know that I take all the well wishes, good vibes, and prayers with me as I will need them to get through this. I knew this was going to be difficult on an emotional level, but didn't realize that it would affect me as it has. Perhaps it has a lot to do with all the personal changes going on .... my new job role and duties, so much added responsibility and not having any "me" time. I am going to make this next week ... ME time!!

Again ... we will travel safe in hopes of reaching our destination by dark on Saturday evening.

Peace, Love, and light!!!!
et

Feeling very overwhelmed ...

but too totally exhausted and blank to do anything about it.
I have been teetering on the edge of low all day, not really sure what is going on. I ate, waited to bolus, duel waved my boluses .... and still ...

I had to take my father to the doctor today ... complete and utter frustration!! Both with him, and the neurologist. Apparently my "social situation" meaning my family and the fact no one will deal with or help me deal with the situation with my dad, leaves me with the choice thus far of .... a court order to put him in a home. I will not do that .... sorry. So he will remain in the apartment until something happens..... question is ... who is it going to happen to first??

I am too tired to get down and dirty tonight. But .... I am having doubts.

Maggie is barking at me ... I will rethink and check in later. The trip is a go. I should know more in a day or so.

Thanks to all who have been a constant of support!!!
My emotional state really has depended on it!!

Peace and Love
et

Guest Blogger

I would like to introduce a long-time "childhood" friend to be my guest blogger today. Please Welcome, from MA, my friend Debbie Shanks (Doyle). Deb is being too kind here in my opinion, we were your basic 70's and 80's teenagers, better than most I think. Please read her views on past and present.
HEEEERRRRRREEEE'S DEB !!!


So, this is my first attempt at being a “guest speaker” on Binky’s blog, I thought about what I could write,, but finally just figured I would start writing and see what happens.

I was out country line dancing recently with my son, his girlfriend and my daughter. We were having a good time together when Colleen, my son’s girlfriend, said my son, Rick, was acting weird. I looked up to see him stumble backward as he was walking towards me like he was drunk. As he is not a drinker, I became concerned. I asked my son what was up and he said that he was low. For those of you who don’t know my son, he has also been “blessed” with diabetes. He had a handful of candy and started to unwrap a piece. I looked at my son and noticed he was not really focusing in on our conversation or the questions we were asking him. His gaze was far off and it was as if he couldn’t really understand us; basically because he was not really able to. When I asked him what his sugars were, he just kept saying he was low.

As we had just completed a dance where you switch partners throughout the song, I went into the bathroom and got a paper towel to wash Rick’s hands. I instructed him to check his sugars with his meter. It was then that Rick focused enough to tell us that his meter was in the car. Stephanie, my daughter, took him outside to check his sugars. As he was leaving, Rick whispered in my ear that he forgot that he had some sugar in his car, and he sounded like he had way too many cocktails. His voice was slurred and he spoke slowly. When they returned, Steph told me that Rick’s sugar was 56 – yikes! This was after eating a bunch of candy. For those of you who don’t have or live with someone with diabetes, this is pretty low. He must have been pretty darn low before he went out to the car and it is no wonder that he was unable to focus; there was no sugar getting to his brain.

Why do I write this story? Well, the next day when I read Bink’s blog, she explained what it is like when one with diabetes is low. Is this a coincidence? I think not. What is different is my knowledge of being with someone with diabetes. When I hung out with Bink, I was totally in the dark. If she was to stumble backward when she was low, I probably would not have noticed. If she was mumbling or unfocused, I would have thought that she was goofing around. As Bink has mentioned, she was not really forthcoming about her diabetes, but neither was I forthcoming with finding out more information. I could say that as a teenager I was unfocused on anyone other than myself, but that would only be part of it. Another part was probably Bink’s unwillingness to feel “different.’ As teens, nobody wants to be different. So as far as that goes, I have to respect Bink’s motives of not sharing, along with my teenage self absorbance for what they were at the time. The old saying, “if I knew then what I know now” certainly would apply for both of us, I suppose.

What is it like to have diabetes? I don’t have that answer. What is it like to live with someone with diabetes? That is something I can tell you about. I would think it is frustrating, scary, tiring, and a general pain in the neck to live with diabetes. Well, guess what? It is frustrating, scary, tiring and a general pain in the neck to live with someone with diabetes. When my son was first diagnosed, I hovered over him like a shadow. Needless to say this got old fast for both of us. He needed his space and I needed to give it to him. It was one of the hardest things I have ever had to do. I have promised my son that I will “back off” and it has been extremely arduous. I should not have promised something that I can’t really follow through with. It is pretty hard to “back off” when you watch someone you love constantly live in the “denial” bubble. I have to stop myself from demanding that he eat an apple instead of a piece of cake. I have to stop myself from begging him to keep his sugars in control so that he won’t do permanent damage to his body. I have to let go and let him be his own advocate. I must let go when I don’t feel like he is advocating well. If I don’t let go, then I will loose him. The kicker is, if I don’t pester, I may loose him earlier than was necessary. To put is bluntly, diabetes sucks for all involved.

Now that I have played “true confessions” it leads me back to our favorite blog star - Binky, or for some Eliza - and her extraordinary upcoming adventure. Bink is willing to put herself through procedures that will not only help her out, but will ultimately help out all people with diabetes. In essence, Bink is paving the way for me to have my son around a lot longer. It is critical that we find a cure for this disease. Without brave pioneers like Bink, progress would not occur. Am I excited that Bink is going to have a healthier life? You bet your buttons. Is her procedure going to help out my own son? Well, you can bet your buttons on that too. I personally have two very important stakes in Bink’s upcoming procedures. Love is a very important influence in ones life. I can say that I love that Bink is doing this for herself – unselfishly- and am proud that, in the process, she is helping all the other people in the world that have diabetes. It is because of pioneers like Bink that science can move forward in the right direction.

I am very excited with Bink’s recent research (via her cousin, I think) that give statistics of people that have had the procedure she is going to have and have been living without diabetes for many years. I, like all of you, know that Bink’s life without diabetes is going to be just awesome! I can’t even imagine what it is like waking up in the middle of the night low. I am very excited for the day that Bink just has distant memories of doing so. I am excited for the day that Bink can eat what she wants and not worry about it spiking her sugars. I am looking forward to Bink being able to go for a walk and not worry about packing an extra snack “just in case.” I am also looking forward to continuing to read this blog with all the glorious updates that Bink will be writing as she experiences her “new” life without diabetes. It has been so long since the days when she has not had to prick her fingers that I wonder if she will find herself doing it out of habit? I suppose Bink will be the only one to be able to answer that question, but yippee for that day!
So, this is my first attempt at being a “guest speaker” on Binky’s blog, I thought about what I could write,, but finally just figured I would start writing and see what happens.

Oh, I forgot to warn you all, but I imagine you have figured out, that I have the gift of gab. That is one of the reasons Bink and I have always gotten along so well lol (did I do that right Bink?) I better end this post as Bink may not want to talk to me if I continue on (and on, and on…)

I will complete this “guest” blog with an enormous thank you to the scientist that continually pursue a cure for diabetes and a big hug, kiss, and undying gratitude to our friend, Bink/Eliza, for her willingness to grab the science “bull” by the horns and “ride” it all the way to a cure. Rock on my little buddy!

Love ya,
Deb (from MA)