Monday, January 16, 2012

Six Months

"Healing is a matter of time, but it is sometimes also a matter of opportunity."
                                                                                                                                        -  Hippocrates (460 BC - 370 BC)


Today marks six months since I received my transplant. Another milestone that I'm fortunate to reach. Considering everything that's happened over the last six months, it feels like it's been so much longer. I still need to be patient: there's a long way to go yet. I also need to remember that disappointment is a big part of success...whatever way it manifests itself.

Just hope it manifests itself soon!

Saturday, December 31, 2011

2011 Was...

For me, 2011 was equal parts jubilation & dejection, triumph & failure, fulfillment & emptiness, discovery & loss...and rarely pain free. Quite the roller coaster ride, to be sure. There are some years that are a blurry fog; and other years that I remember pretty well. 2011 will be a year for which every moment will remain crystal clear for me. Well...at least for the time I wasn't under an anesthetic! So many people to thank....

First and foremost, Jessica, for the amazing gift she gave me. The greatest gift I've ever received outside of the one that put me on this planet in the first place. I've been living with the transplant for 166 days now (not that I'm counting). I'm more astounded and grateful each day at the courage and commitment it took for her to follow this through to fruition. 'Thank you' does not even come close to scratching the surface.

My brother Art, who came to be by my side & support me through the earliest and, in retrospect, the most difficult days of the transplant and recovery. The years and miles have separated our lives a great deal; but he was there to take care of me at my most vulnerable moments.

My sister-in-law Sissy, who watched over me, amused me and yet gave me the space I needed. I hope she had a good time exploring Seattle and didn't take much offense with her grumpy charge. I found her and my niece Brittany annoyingly yet amusingly positive & energetic.

The Butterfly Sisters, without whom getting to the transplant would have been much more difficult than it was...if not impossible. Despite performing disappearing acts worthy of David Copperfield or D.B. Cooper, I still love and respect them very much.

My family, who did their best to not make me laugh, when it hurt so bad to do so; and then who made me laugh, when I so needed it. I don't tell you all how much I love you all as often as I should.

Obviously, I need to thank the doctors, nurses, technicians and staff who provided such amazing care; and who showed such great understanding and compassion throughout. They did everything to facilitate my recovery and took great pains to make sure that I understood each step along the way.

Lastly, my friends, near and far, who sent flowers, cards, texts, emails, music...and jokes! Way beyond my expectations and far more than I probably deserved. You guys are the best!

And now...2012. Never been much for resolutions; and I'm still working on finishing what I started in 2011. The only thing that might be a 'resolution' is the commitment to learn to play guitar left-handed. Don't know if I'll ever have the proficiency I had right-handed; but playing guitar is something I've sorely missed. Just hope it doesn't take 30 years.

The motto I've had for months and which will continue into the new year is "No Going Backwards."

And now, to fill my time the way I projected months ago: Live...Love...Laugh.

That should keep me busy.

Friday, May 27, 2011

And This Disease Gives Me Another Bummer

Was just checking to see when the next...and last...Harry Potter movie would be hitting the theatres. July 15. Just about the time that I'm predicting the earliest time for the transplant.

No midnight showing for me. Well, at least I won't have to take ribbing from Adam again.

Sunday, May 1, 2011

OK...Wasn't Expecting That

I'd thought I'd seen pretty much everything this disease had to offer; but Thursday before last a new wrinkle appeared on the scene. That night came the nosebleed from hell.

I was doing my regular dialysis run and I was about two and a half hours in when I started have a nosebleed. Though it's not uncommon for dialysis patients to experience nosebleeds (due to the Heparin introduced during dialysis), this was the first time I had had a nosebleed during dialysis.

At first, I was going to try to finish my run: just pack it off and ride it out. Unfortunately, about five minutes later the blood flow increased...alarmingly so. Within a few minutes, I could feel a steady stream of blood pouring from my nose and it didn't seem to be stopping anytime soon...plus I could feel my ears plugging up (the blood was backing up into my throat and ears, making it difficult to hear). After a quick discussion with the charge nurse at the dialysis center, the dialysis session was terminated. Wish I had a picture of me holding a compress on my nose while Dai (a technician at the center, whom I refer to as the "Head Chef") was removing needles in my other arm and taping on some compresses there. Dai then treated me to a brisk wheelchair ride to the ER at Evergreen Medical Center. A place where I will come to understand what they meant on the TV show ER by the phrase "Treat & Street."

Arriving at the ER, I was greeted at the entrance where they confirmed who I was and did a quick vitals check (BP, pulse, temp) and had a plastic clamp affixed to my nose, ostensibly to try to control the bleeding. No effect...other than to divert the stream of blood to the back of my throat. Joy...

The preliminaries out of the way, I was rolled into the ER, put in a room and given a bib to keep me from bleeding all over myself. The usual questions came next ("Your name is...? Your date of birth? Are you allergic to any medications or latex?) followed by questions about when did the "symptoms" first manifest themselves, blah blah blah...and all the time I'm hocking up what could be best described as dark cherry Jello pudding. Don't know if you've had the experience of gagging on your own blood; but it makes talking a rather difficult. "No, I'm not allergic; but I do dabble" *spit* "Started bleeding 20 minutes ago and just kept getting worse." *hock...pitooey*

Believe me when I tell you that it was much worse than it sounds.

After what seemed to be a fair amount of searching around through drawers and cabinets, a suction wand was set up and the tech/nurse (not sure what her title was, she just introduce herself as 'Sara') attempted to suction some of the building fluids from my throat. After I gagged at her attempt (spewing some of that aforementioned pudding out at her), 'Sara' handing me the wand so I could do the suction my throat myself...while I continued to hold a compress to my nose...and hold a basin under my chin...and answer more questions, primary of which were "Do you have insurance?"

Actually, at this point (about twenty minutes in the ER), the medical 'staff' had disappeared, leaving me to wonder what the hell was going on. Then the "billing" lady came in. Haven't been seen by a doctor. Hadn't been assessed at all other than, yes, I did have a severe nosebleed. So there I am, trying to hold a compress on my nose and a basin full of black cherry pudding under my chin while trying suck blood out of my throat and at the same time rifling through my bag to find my wallet for my insurance card and ID. My conversation with the billing lady:
BL: "Do you want to take care of your copay now?"
Me: "Well, let's wait and see if they admit me."
BL: "Are they going to admit you?"
Me: "How the hell do I know?! I'm not a doctor!"
You can add a little bit of gurgling sound, kind of like when you talk before you spit when brushing your teeth. Well, Ol' BL, sensing my growing irritation, quietly left and then quietly returned with my cards...and then quietly left again. Having been satisfied that I wasn't going to 'walk the check' I suppose, I was then to be treated to the best care that Evergreen's ER had to offer. Which is to say, the very minimum possible.

About half an hour later, a doctor made his way in. After another ten minutes of chasing down the proper supplies, tools and protective clothing ('cause no one was getting anywhere near me at this point)...and another ten minutes figuring out that, yes, it was a severe nosebleed (posterior epistaxis technical terminology...but then again, I'm not a doctor). Next thing I know, I'm hearing the words: "OK...this is going to hurt a little" and something was shoved up my nose and as far back as what felt like my frontal lobe. Just a really fun sensation. I later discovered it was an inflatable tampon-like compress that my niece euphemistically refers to as a Rino Rocket.

I'd like to take a moment here to say something about healthcare providers and the way they express themselves during procedures. It's been my experience over the last few years that when I'm told "...this is going to hurt a little..." it generally turns out to really suck. Now, parents, you probably don't want to tell your kids this little fact, 'cause you probably won't ever get them to the pediatrician's office without you sustaining bodily injury...kind of like trying to give a cat a bath. But at least you'll be forewarned that there will be screams of outrage coming your way. In my case, I just count to ten: "One motherf@#*er...two motherf@#*er...three motherf@#*er..." and so on. It's a technique that I've honed in my time in dialysis. Doesn't ease the pain but it feels somewhat...cathartic.

Anyway, for the next hour I continued with the black cherry pudding and blood oozing out my other nostril, with some one popping their head in every twenty minutes or so to make sure I hadn't wandered off. An hour goes by and the 'team' returns. They decide to try to clot up the other nostril as well with some sort of coarse powder. "This is going to be a bit uncomfortable." Ummm...yeah. We've already established what that means. I gave them my best Chevy Chase imitation.

Another half an hour and I'm just oozing, not streaming. Good enough to be released. I clean my face of all the dried blood and I am handed my discharge orders. I'm told that I need to follow up with "my" doctor the next day; but "my" doctor (listed on the discharge orders) wasn't anyone I'd ever heard of...and their office was thirty miles away!! Thank you sir...please drive around.

So...there I was: dazed, confused, partially dialyzed, fairly uninformed, totally pissed off and trying to figure what I was going to do next. Fortunately, Tom answered his phone and my call for help once again. He arrived rather bleary-eyed; but agreed to drive me to The Spa and leave me in the care of the proprietor, Mama Mia Pam. Once there, I tried to make myself as comfortable as a person with an outsized, inflatable tampon jammed up his nose can be when he has to sleep sitting up, has a throbbing sinus (think mother of all sinus infections and you'll know what it felt like) and can't (or at least shouldn't) eat any hot foods or drink any hot liquids. Miserable barely scratches the surface of how I felt.

Next morning, Pam got on the tom-toms to friends and family to find an ENT specialist. Finding one in Bellevue who could see me right away (first question from them: "Does he have insurance?" I'll get into my rant about the country needing a viable national healthcare plan and Republican efforts to forestall such a plan at a later time). Having sprinted to Bellevue to the Overlake Tower, I arrive about 10 minutes late...to have to once again, complete a medical history form (and this will be part of the aforementioned rant, I promise). After a short wait, I was taken back to procedure room and had the preliminary vitals taken. And the doctor came in to see me.

I have to say that at this point that for the first time I felt I was in the presence of a true medical "professional." Dr. Kuntz was comforting in that she explained clearly what I was going to undergo, what I would probably be experiencing pain/comfort wise, how and why the treatment might escalate...in short, she treated me like an intelligent adult. Pretty refreshing.

Turns out I had a ruptured blood vessel in my nasal cavity. Dr. Kuntz had to cauterize the vessel...which was an interesting sensation, especially when she got close to bone and the shock ran through my teeth (had visions of Jack Nicholson in "One Flew Over The Cuckoo's Nest"). Anyway, a little while waiting to make sure that all was well (but for a little runny nose...with rose water), I was released to the care of the Mistress of the Spa.

So...what's the point of the story? The only point I'd want to make, other than how an uncomfortable life can be made even more uncomfortable, is that Evergreen's ER sucks. They didn't kill me...but they didn't treat me as an intelligent patient. I wasn't informed (which, at minimum, I should have been) or comforted (which I really didn't expect anyway) or made to feel that my care was more important than how I was to pay for that care. It wasn't that they were incompetent: they were mechanical. Perhaps that's a necessity in an ER...I don't know. Still sucks.

So, I'm a couple weeks on and breathing through my nose is slowly improving. A little better every day. Soooo much better than having an inflatable tampon up my nose. Looks a little better too...though looks have never been much of a consideration.

Saturday, April 30, 2011

I'm Acceptable

Received a phone call this past Thursday from Karla, the clinical transplant coordinator at Swedish Medical Center. She gave me the word...and the word is that I have been accepted for transplant at Swedish and will be added to their transplantation / UNOS list.

So what happens next? Well, first thing is that I have to have an abdominal ultrasound to make sure everything is in the right place (road map for the surgeons I guess). At the same time, my donor will undergo testing to make sure she still is also "acceptable." I really hope she doesn't have to do the 24-hour test again.

Bottom line here is that by sometime in July, I should be receiving a kidney transplant. My buddy Tom asked what I would do with all the time I'll have not going to dialysis...

Live...love...laugh...

Wednesday, April 20, 2011

Progress IS Slow

I haven't forgotten about this blog. I actually have so many thoughts and events and people that I want to share with you that it's difficult to know where to start...so I'll probably be jumping around a lot.

One thing I can tell you about the here-and-now (other than I really don't like being here at Funland) is that I have completed the first round of tests requested by Swedish Medical Center's transplant program. The tests included a whole battery of blood tests (19 vials drawn by my count), an EKG, an echocardiogram, a colonoscopy and a cystoscopy. Add in the nosebleed from hell (which I'll get into later) and I've had something jammed up every orifice on my body over the last ten days.

Happy! Happy! Joy! Joy!

Anyway, the first question from most people is "when are you getting the transplant?" In response, I reach back to the days when I used to ask my mother when dinner would be ready and she would respond deadpan: "When it's done."

In the case of the transplant, it will be after all the tests that Swedish requires of me and Jessica (my incredibly generous donor) have been completed. I spoke to Karla Rimmer (the Clinical Transplant Coordinator) on Monday. She was touching base, confirming with me that she had received all the test results except for the colonoscopy; and that she would pester the gastroenterologist's office to track down that report. Once received by Swedish, the results of all the tests thus far will be reviewed by the transplant team to see if additional tests might be required of me. I should know very soon if they need anything else.

Personally, I believe that  I'll be asked to undergo a stress test (last one was three years ago, which is a long time in dialysis years) and a head CT (due to the aforementioned nosebleed from hell). Only after I've been approved will they turn their attention to whatever tests they wish Jessica to undergo (which will more than likely include the one she so hates).

Bottom line is when I know, you'll know. Personally I'm hoping for sometime in the next six weeks. Perhaps on my birthday. It'd give me a reason to start celebrating it again. In any event, the process has to run its course...though I have to say Swedish seems to move a lot quicker than the UW did. That, at least, is a hopeful sign.

And I look for little bits of hope wherever I can find them...