*i added some pictures in previous posts - you will need to scroll down to view*
Number of Days on the List: 31 (ONE ENTIRE MONTH!)
So…still here and still waiting. Day 20 (+/-3 days) came and went without any potential donors. Everyone here says that winter months are often slower when compared to other times of the year – I guess it’s waaaay too dang cold to go out and do something stupid that could get you or another (most likely innocent) person killed. My heart still skips a beat every single time my phone rings and/or vibrates with an Indy area code . Is this it? Am I really going to be that much closer to getting my long awaited all you can eat Indian buffet, unlimited potstickers, gyros, doner kabobs, anything Thai, and the list could really go on and on...? Will this be the call that’s going to turn my world upside down and all around (this time for the better!)? As I watch the news or hear sirens, I also can’t help but wonder, will that result in a match? I know, it sounds goofy and even maybe a little insensitive and/or inconsiderate as I wait and hope for this most precious gift of all. Yes, someone does have to die and yes, some family out there will lose someone they hold dear, someone precious, someone whose life was cut way too short. I will never forget that. For some, this can leave an atrocious taste in their mouth. I’m not quite sure if it’s guilt, sadness, some other emotion, or maybe a combination, but at this point in time, I’m not allowing even the remote possibility of that weighing heavily on my heart. Don’t get me wrong nor prematurely jump to the conclusion that I am heartless and inconsiderate. It is quite the opposite. I will forever be grateful for what my eventual donor chose as their last wish and/or what their family chose on their behalf. BUT they will not die because of me. Instead, I will live because of them. Although they are no longer among us physically (mind and body – what makes them, well…them), their spirit and memory will continue on.
This would be a great time for me to chime in on the importance of organ and tissue donation. I promise to keep it short.
Organ donation is “the ultimate selfless act”, and it does not cause death. When a person enters the hospital, all attempts are made to keep them alive. The team attempting to save a life is not the same team procuring the organs. Roughly 6,700 people die each day in the US. Clearly, some of those deceased are organ donors, and clearly, a number of those do not qualify to be organ donors. Still with statistics like that, you have to wonder why anyone dies waiting for organs. People die, we will all die. Those 6,700 people are going to die regardless of organ donation.
AND – Just signing a donor card and/or having a driver’s license with an “organ donor” designation may not be enough. Discuss your intentions with family and friends, as they are ultimately the ones to make that decision.
SO – “Don’t take your organs to heaven, heaven knows we need them here”
RECYCLE YOURSELF!
See, I told you I’d be short!
Sorry for the lack of updates. I’ve had additional company here in Indy for the past week. It was fun all being together again, and I was definitely sad to see them leave :'(
*sniffle sniffle sniffle*
Moving on – So what’s up with my hair?!? Check out the slideshow towards the top of this page. I was a little freaked out going into it and made sure to bring plenty of tissues. I thought it was going to be hard. Yeah, yeah, yeah…I know, it’s just hair. BUT taking over a foot off all at once is pretty drastic. Since the initial whacking a week or two ago, I’ve already gone back in once to take even more off, and I’m sure I’ll be back for more if I'm feeling up to it. Surprisingly, I love it!!!! Absolutely love it!!!! The only criteria was to allow for the following three styles: fauxhawk, all brushed and pieced forward, and for the allowing of a major side part.
Last but not least - Medically, things have been ok, I suppose. It’s been a major case of SSDD (same shit different day). Although I must add, as time passes things just seem to get harder and harder as symptoms (both new and old) continue to worsen. I’m throwing up/aspirating in my sleep, my ostomy output continues to become more and more concerning, and infection(s) is looming like always. Any attempts at eating are not getting digested or absorbed, INCLUDING non-IV meds. My Coumadin level is too low and is not responding appropriately to increased dosages. I’m told this is common with small bowel/multivisceral pre-transplant folks. Seizures have also been a big issue lately, as well as blood sugars. In the past 2 weeks or so, the itching has gotten out of control (not Shingles-related - although in the past 3 years I've had it 3 times). Additionally, the hard masses in my belly continue to increase in size. I have a huge mess of calcified stool sitting in my colon and small bowel. My Jtube site is a mess and pressures are getting so high that intestinal contents continue to explode from around and from within the tube. Basically my gut is a massive cesspool. My weight cannot drop anymore…NO NO NOPE. My body needs to hold on a bit longer. Let’s see…what else is there to report? You know what, I’m not even going to make an attempt at saying anymore (at least not right now – my fingers hurt and I gotta take a breather). There is just too much. Hopefully it won’t be much longer and in the meantime, I can remain active on the list. I'm ready for the nightmare portion of this odyssey to end and for a new and hopefully much better leg to begin. It won't come right away. I do know that. The next year will most likely be hell, but if I can keep the lights on upstairs, I will get to the light at the end of what's become a very long tunnel. AND there better be an Indian buffet there and waiting for my arrival. heh :P
Happy New Year! I’m hoping this will finally be my year and hope everyone had a great holiday break.
Sweet Dreams,
Sara
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