One month out! Today is one month since the surgery. I am really close to being back to normal. Funny I thought I wouldn't have much else to say about things (what's to say about normal?), but then, this post turned out to be quite lengthy. I guess it's because it finally feels like "after."
Let's talk real life, first. I went back to work almost 2 weeks ago on the Friday of week 3, the week we traveled home. That put me working a full week on week 4, which was last week, and again this week, which is halfway through. All of this is fine - I'm not having any trouble sitting and standing all day, and my concentration and work habits are absolutely normal. I don't feel any different, really. I have to select work clothes that have a certain amount of stretchiness to be comfortable, but not an entirely different size. At home I'm able to do most things like laundry and vacuuming, but I move carefully so I don't strain anything. I stay away from lifting or moving anything heavy. Tyler got me started on Marie Kondo's "The Life Changing Magic of Tidying Up" so that's been my home activity here lately and will keep me busy for a while! But overall, I think Dale and Tyler would agree that I'm the same Anna.
Next is training. I started going back to the gym last week according to my normal habit of Monday, Wednesday, and Friday morning before work. I've continued this week. I don't to a lot at the gym, but getting back to the habit and the mindset helps a lot. My kettlebell is 4kg, for presses and get-ups. My barbell is a PVC pipe. My bodyweight exercises bird dogs, Cossack squats, and hanging on a bar. I also do Original Strength rocking, head nods, and crawling. Stretching and a few easy yoga poses round things out. All of this seems good for keeping mind and body linked together and helping the muscles figure out what's working and what needs to learn to work better. I noticed that the middle of the rectus abdominus on the right side doesn't contract like the left side. It does twitch a bit, so it's trying to wake back up. I can still roll up on both sides so it's not a major deficiency. I still feel like having a strong back from deadlifts was the greatest advantage in recovering from abdominal surgery, and that's my biggest physical ally now as I start moving for strength again. I also practice breathing during training; I noticed that my breathing suffered a bit just after surgery, becoming more shallow and chest-centric rather than diaphragmatic, and I still have a little pain around the bottom of the right lung when I take a deep breath. The surgeon said this would last a few months. Slowly I'm getting back to a better breathing pattern. I've been walking 1-3 miles per day, with my longest walk at 4.5 miles last Sunday. No problems there. The only problems with walking for exercise are that it takes a lot of time, and that it's hot outside. But walking is gentle and natural, and good for building stamina back up and keeping everything flowing. We should all walk daily. Still many to look forward to, such as riding my bike again in another a week or two, beginning to add weight to my gym training in another two weeks, and probably having a little bit more energy to get through the day. All of this will be more "getting back to normal" but with the new addition of the experience of building back. That will be priceless, having this new first-hand knowledge of the process of rebuilding. I'm learning a lot from Dustin as we navigate that process, mostly because he knows so much about training and movement, but also because his current path is similar.
Physically other than exercise, I feel really good. I'm quite amazed at how much I feel like myself with really no major differences. I am tired at the end of the day and I have been sleeping quite soundly the past 2 weeks, but I wouldn't say I'm fatigued or easily tired. The incision is not painful at all. Really it's just a red line on my belly on the right side from just above my belly button to about my right hip bone. It's softening up and I've been using Mederma and Vitamin E oil on it. If I press on it there's some hardness around the incision, but not lumpy or swollen. The right side of my belly is still maybe an inch bigger than the left. Hardly noticeable. I expect this will be gone in another month. I can roll around, sleep on my stomach or sides. The rest of my body is completely normal, with no sign at all that surgery took place or that we're now operating on one kidney. One kidney is enough! My weight is still down 6 lbs total since before surgery, and my appetite is still less than it was, but that corresponds to my activity level.
Medically, the labs confirm the feeling that one kidney is perfectly adequate and I'm healthy and recovering. The labs at the post-op check were all as expected and I've had no need to re-check everything. My blood pressure was running just a bit low last week so I checked in with the nurse coordinator and with Seth. Both said, no problem, your kidney is getting used to the new normal, and low is better than high. If it gets lower just increase water and add a little salt to food. This week it's been back up just a bit to 110/65 or so most of the time I check it, so that's great. Can't ask for better than that. My resting heart rate is still in the low 50s as it has been since I started bicycling over 10 years ago. Long term prognosis for bloodwork, etc. is no different -- actually, it'll get slightly better over the next year or so as the kidney grows in size to take over 75% or so of my previous kidney function with two. And that is plenty for health.
The last category might be my mental state. That, too, has been a pleasant surprise in how I adjusted to being back and this big mission being completed. Maybe it's that I've done so many military trips, training courses, vacations, physical training certifications -- all have a before (preparation), during (execution), and after phase. Back to life, resuming activities, and looking forward to what comes next. I do get to have neat conversations with people about the whole thing; people who knew about it beforehand, or saw it on the news, or have heard since I returned. Many people have a family member who is on dialysis or has some sort of kidney disease. I'm glad to have some helpful information for them. People relate to me the same; perhaps some are impressed with this thing, but not to such a degree that they treat me any differently, which is good. Everything is normal but there is a bit of inspiration around here and there because of it. That is a neat thing. As for the impact, that is a harder thing to grasp and I think that's going to take a while to sink in. I always love to hear how Dustin is doing and I smile every time I think, "We did it!" and how it's all gone well. Odds have always been greatly in favor of a good outcome, but it's by no means guaranteed, and there are dozens of setbacks that could have happened and haven't. Smooth sailing so far. He's still recovering from surgery also, and the medications are a big deal (and not something I have to deal with), so this second month might be greater health gains than what has occurred in this first month. But the hours saved at dialysis, the ability to move forward in life past the transplant event, the better health and family time... all huge wins. Giving this gift to Dustin and Kenzie's son Bennett was always a huge motivator for me, because I think of Tyler at that age and how much he needed and loved his parents. So I definitely love to see that, and I think that one will sink in more over time. I think as far as impact on people the one that easiest for me to grasp is relative to Dustin's mom, Debbie, because I can imagine what it would feel like for someone to help my only son to become healthy again. I'm really, really happy to be able to give that gift.
I keep saying that I'm so, so glad I did this. Still very grateful for all the help and for the team that pulled this off, both the medical team and everyone on the support team. Very grateful for the support of family and friends and co-workers. I'm grateful for StrongFirst and StrongFirst family, without which this wouldn't have happened (and, I would not be so strong and healthy!). Overall it still feels a bit too soon to summarize what I've gained from the experience, but I can say a lot of it now. First is a whole new appreciation for kidneys and health. Second, and related, a much better understanding of my brother Seth's work as a nephrologist and being forever grateful for his guidance in this process, as I wrote about in a past post. Third, a lot of new knowledge and experience about medical tests and surgery. Forth, new friends Dustin, Kenzie, Beth, Randy, and Jenny, and getting to visit with old friends Lee and Al, as well as seeing and meeting a bunch of other awesome people while I was in Oklahoma. Those times with friends were all priceless! And as far as awesome people, a special mention to Dustin -- as the central figure in this drama, he's been a steady guide throughout, and has taught me so much about mental fortitude, patience, and effectively handling things and learning from them, moving through obstacles to "turn all things to advantage" while fully absorbing reality. "See Clearly; Act Courageously" is lived and demonstrated. What an incredible friend I have now. He's a pretty damn good coach, too! So we get to share some knowledge there as we get back to being strong. Finally, as far as gains, is new knowledge of myself. Taking on hard things is how we grow. Getting out of our comfort zone is how we learn what we're made of. I feel more complete, more developed, and quite a bit wiser as I move into "after."
Thank you for reading... It feels good to celebrate this 1-month milestone and say where we are.
I haven’t written here in a bit, for those still onboard, I thank you for your ongoing support and patience. Things are going well. Save the drain in my belly everything else in recovery is going better than I can ask for. The drop-in dosage and time on the new meds have allowed my brain to clear. I still fatigue easily and am always hungry. With this said, I am doing ok not being ok. I have been writing a great deal with coaching conversations and coach training taking up the remainder. I am in the middle of Dr. Amen’s Brain Health certification and that has fueled some insight, conversation and further research. From a coaching perspective, it only makes sense to check the hardware (Brain & Biology) before running software (Goal setting) this ties tightly into my background and HPI studies.
Love is something that I have been thinking a lot about lately. There is the concept of “Amor Fati” or the love of your fate. This is going to beyond acceptance of your situation and actually wishing for things to be as they are. Crazy… perhaps, but useful if achievable. I will say that I can no longer hate what has happened or the disease process. It has had its uses if only to illustrate what is important and what is not.
You would think that I would have some grand plan with my new-found freedom that Anna’s choice granted. Nope, what I want is modest in comparison to my former aspirations. I want to coach and watch Ben flourish. I am not quite at the client load to make this a viable provider option but at enough that I don’t need to panic and seek out employment. I was probably a bit overloaded before transplant, but now will be seeking a few more folks. I have been resistant to the business building programs that coaches get thrown at them (getting burned out in the fitpro space). I am taking a craftsman’s view of my practice and not tying myself to the overused entrepreneur moniker. I seek mastery and to take Cal Newport’s advice to be so good they can’t ignore me. So, having one impactful conversation at a time and asking for referrals is my route forward till another decision needs to be made.
Anna, seems to be doing well by her posts and texts. I am glad she is home and settled in to her normal life. I am jealous that she at least got to the gym where she trains this morning. I rode by ACWA on the way to Labs this morning that is about as close as I will get for a while. Small price. Walking is the only thing I am cleared for and after seeing some footage of hernias shared in a transplant group on Facebook… I’m good with that. No reason to suffer that and get my training pushed back further. As I have said before I won’t program anything for myself until next year, but fates willing I will get to some rehab work and skill rebuilding long before then. This IS a new body. Evidence for that popped on yesterday’s walk when I noticed my left heel strike was far too hard. I did some tricks to take the edge off but the issue/situation is in my pelvis. Now this is minor nitpicky stuff, but that is the stuff I tend to get obsessively curious about. I am not picking at it… just letting my body resettle and then I will reassess. If THIS is what I am concerned about I am in a very good place.
Tomorrow morning will be 3 weeks since surgery. I'm doing well, and although this blog has mostly served its purpose, I'd like to write a few more times for a complete accounting of the experience. This may continue to be relevant later too, because as I outlined once before, being a kidney donor has three big parts: 1) the processing and testing before, 2) the surgery and recovery, and 3) the rest of life with one kidney. Dustin and I captured the most intense parts before and after surgery here in the blog. I kept a journal for all of part 1 from my perspective, and not sure what I'll do with it, but I have it if it turns out useful. I'm not sure where to account for part 3 or what is most important to impart, but I expect that anyone exploring the idea will want to know how things turn out for me long-term, and some of them may be reading here. So a few updates towards that end may be useful.
Currently I'm still recovering, but mostly back to regular life. I'm somewhere between part 2 and part 3. I think recovery will continue until I'm back at previous strength and fitness, or as close as my new potential will bring me, if that has changed. I won't know for a while if that potential has changed, but I'm optimistic. Overall I feel really good. No fatigue, no moodiness, and no other complaints except minor ones like my guts aren't quite back to normal regularity (sorry if TMI). No complications whatsoever from the surgery -- everything went as expected. Mom drove up to Oklahoma and after a day trip and the hospital appointment, we drove home over 2 days last week. I went back to work as of this past Friday, and that went well. It's hard to sit/stand ALL day long, but if I find a place to lie flat for a few minutes and relax, that helps a lot. I can do normal activities without any problems. Still on lifting restriction so can't do a whole lot fitness-wise for a few more weeks except walking. I've been walking 1-2 miles most days. Today I walked my longest walk of 3 miles. I could have easily walked further, but I'm not pushing things too hard and that seemed right for today. My heart rate and blood pressure are good. My labs from 16 days post-op were good; as expected. As Seth said, the "new normal." Mostly this means creatinine level of 1.12 mg/dL is slightly higher than it used to be, and estimated GFR (glomerular filtration rate) is slightly lower than it used to be, both due to one kidney filtering instead of two. Not a problem health-wise, and should slightly improve a little closer to previous values over the next few months as the solo kidney slightly enlarges and does more work. My kidney (left kidney, previously named Elkay) has been renamed. Since Dustin's kidney is Idunn (In Norse mythology, Iðunn is a goddess associated with apples and youth), the other half of the matched pair is also from Norse mythology, Idunn's husband Bragi (BRAG-ee). "Bragi is very wise, and he is known for his wisdom he is very creative with words and he also has the most knowledge of poems and songs." Bragi means “Poet” according to https://norse-mythology.net/bragi-the-god-of-poetry-and-music-in-norse-mythology/ Maybe my creativity with words will be enhanced with this identity.
The incision has healed beautifully. The surgical glue is gone and the precision closing done by the surgeon has healed nearly completely, though I know there's more healing still occurring under the surface. He said I could put Vitamin E oil on it to help soften the scar. I love the scar already. It's not painful; it's slightly sensitive but also slightly numb right around it. My belly is close to normal now, just slightly puffy still but I can wear all my regular pants. It helps if my clothes are snug, either the pants or the shirt, because the friction around the waistband is slightly increased when I walk from my temporary slight difference in shape. Still a bit like an early pregnancy, just a little lopsided. I lost 6 lbs in the 3 weeks since leaving home for surgery, so that helps keep the overall size the same. That's about as expected. My coordinator said 5-7 lb loss is common. There were a few days of almost no eating in the hospital, and since then my appetite is less than it was. That's good since my activity is less than it was. I've eaten good healthy food (except for a few Braum's ice creams, haha) and my body seems to appreciate it. Hopefully my appetite combined with my commitment to healthy eating and living will guide me as I work back to fitness. And there are no Braum's here in Mississippi, thank goodness!
It's too early to summarize the experience or how I feel about having done this. I can say, as I've said all along about choosing to do it, "I'm SO glad I did." All I can add right now is that it's all incredibly positive and every single day is a bonus. I'm grateful that everything has gone well. And I'm incredibly grateful for all the people who were there for us and helped during this time. It took a village, for sure. THANK YOU. Those who followed the journey and encouraged us with your comments and messages are also much appreciated. THANK YOU as well.
Updates from Dustin are the best. I'm kind of in awe that this whole thing is now producing the desired result, getting him back to health. I'll let him talk more about that but it seems to be going really well. Certain aspects of this are the same for us and we're sharing insights and information. Other aspects are different and we learn from observation. It continues to be a privilege and and honor to share it.
So... if it sounds like I'm in limbo-land between "in the midst of it" (as previous posts were) and "reflecting on it" as if it were in the past... I am. That's about what 3 weeks post-op will bring. But all is well. I am good. The journey continues.
The purpose of this post is to emphasize directness, so the title is direct and I will be direct in my writing. This kidney donation/transplant would not have happened if the need for it was not expressed and publicized. How many people need a kidney transplant and might get a kidney from a living donor like me, if they just knew how to ask? This might be the most valuable lesson that Dustin and I can put forth to others. YOU HAVE TO ASK, and you have to CAST THE NET WIDE to increase the chances of finding someone who can answer.
I’ve described the components of my decision before – I was “pre-willing” from my brother’s nephrologist knowledge. I was aware of Dustin’s situation through our community and friends. I was inspired story from Leilani on my local news on January 3rd. But what came next to actually cause me to act that day? Right after watching the story, I thought, “I know of someone who needs a kidney. What is the status with Dustin? I’ll check the Support page.” And there on the page, posted just 4 days earlier, was this post from Beth, the Support Page coordinator:
“The followers of this page have been incredibly supportive of Dustin and Kenzie with contributions of time and money to help them and their potential donor. Those efforts are greatly appreciated! With a solid financial base established, what they need now is a kidney donor. That is the blunt fact of it all.....they need a kidney donor. Please consider being a donor. Reach out with questions or ideas on how to raise awareness for this need. Some things truly do take a village, and this is one of those things. We need your help in raising awareness and to help us find a donor. Message me directly on Facebook as the administrator of this page (Beth) if you have any ideas for finding Dustin a donor. Thank you in advance!!”
It hit me hard. The direct statement put me in the immediate and undeniable state of “Someone needs something, and I can provide it.” As I described in a past blog post, this was my driving force through everything. Through any hesitation of contacting people I didn’t know to do something so personal. Through the difficult steps of telling the people close to me what I wanted to do. Through the initial screening processes and wickets we had to navigate. Through the agonizing waiting periods. Through being evaluated, tested, judged, assessed, poked, prodded, scanned, discussed, and examined. Through the considerable work needed to rearrange my life to accommodate the trips and surgery. Because when you know someone needs a specific thing and you see clearly that you are the one who can do it, you will find something inside of you that enables you to move mountains. I can tell you this because I felt it.
So what are the lessons for someone who needs to ask for something so big? Set the stage and share your story to increase awareness. Build your support base. Build a support team. Let people share your journey. And then, ASK DIRECTLY for what you want – through a third party is a nice way to do it, but someone needs to make it clear what is needed. Cast the net wide. You never know what “stranger” may be out there, and hear the call.
Ask directly for what you need, and the world may surprise you with its response.
Yesterday I spent the day with Beth, and it was a really special day. I'd like to write more about that, but really the lesson above is the most important thing to share here. Beth was with us through the whole journey -- a cheerleader, a guide, a balancing perspective -- and spending time together yesterday was really important to me. In our talks while walking and eating and driving, we revisited some of the milestones of these past 6 months and I realized how important that one was, and what an important lesson it holds for others. There may be others, for anyone visiting this and taking Dustin and I up on the offer to help you on your own journey -- and we can both tell you that Beth did everything right, and was a critical team member in the whole effort! Get a social media champion like Beth on your side!
“The rhythm with which things progress, and the rhythm with which things deteriorate should be understood and differentiated.” –Miyamoto Musashi
Musashi was late 16th/early 17th century master swordsman. For a good deal of his life he was a wandering duelist serving no master a Ronin. He is best known as being the author of the Book of Five Rings (although I prefer his Dokkodo). This treatise on strategy is a usually found in the library of every martial artist and leadership expert. I offer this woefully inadequate description due to the broad spectrum of folks that have shared they are following this blog. Musashi tells us in multiple ways that there is a“…there is a rhythm in everything.” I find myself keenly aware of and at the edge of this. Rhythm.
I am progressing very well by all standards. I am walking around the neighborhood in the early mornings much as I would do before transplant. My nutrition strategy feels like it is dialed in focused on quality with a little wiggle room. My weight is back to pre-op levels… exactly this morning, eerily. My belly is still distended a bit and swollen and I noticed I have lost some sensation around the suture line. I fill scrawny but am taking the lifting restrictions seriously as a hernia would slow my physical return, greatly. My color is… I HAVE color and while I ran out of gas quickly, naps are no longer a necessity. The strict timing of my meds gave me the opportunity to anchor some other daily tasks around those times and what has emerged is a three work blocks of time a day for clients and/or writing. Rhythm.
So, my somewhat lengthy morning ritual of all those -should do- tasks has been fractured a bit creating again what may prove a nicer flow. We will see over the next weeks and months as I am taking my time adjusting to the new plan. Weekly, I have clinic and labs so those become my Off days. Conveniently, those are Mondays and Tuesdays… just like the past 20 years at Silverleaf. At least until I stabilize we are going to consider doing Bennett’s pre-K/kindergarten as a base through Oklahoma’s online K12 program. So that is congruent and convenient. Rhythm.
There is a rhythm to recovery. There is a rhythm to my acquisition of new habits. There is a rhythm to the dissolution to what no longer serves. There is an emerging rhythm in taking the necessary steps to grow my practice as dialysis is no longer a factor. There is a rhythm to my client sessions unique to whom I am across from. Rhythm.
On this last point, Rumi said “…the teacher and the taught together form the teaching;” I am finding the coach and the client together form the coaching. There is an eddy of give and take that sometimes pushes and sometimes prods but mostly allows that eventual settles into its a pace and structure that is uniquely its own. Rhythm.
There is a Japanese artist tradition known as Kintsugi that treats breaks and the repair in items (typically pottery or dishware) as something to be displayed rather than hidden as if it didn’t happen. The term means “golden joinery” and gold is the typical medium of repair. This leads to striking and organic patterns.
The pieces of broken dish are carefully collected and reassembled. A gold overlay is used along the fracture lines. Once cured the dish is sealed and polished ready for both appreciation and use. It could be placed on display and now is but traditionally it was returned to its original purpose.
Art through dismay and with diligent effort a return to function. This is how I want to view my surgery scar. As a symbol of what I have gained these past months and years as -I- have gained far more than a simple “return to function.” I am ready to again serve and be of use strengthened by what I have gained.
I am wearing a pair of my regular pants today. Finally! It feels great! There is no pain or discomfort, and the button and button hole are not inches apart when I pull them up as they were the other day. Ha, progress.
The belly swelling is about the only thing I’m dealing with physically, and it’s noticeably reduced. I’m just feeling slightly on the fat side of normal. Sort of like if I drank a double protein shake and blew up with gas. The incision is not painful at all and I can sit and lie in any position now. I have to be careful with extremes of movement and I haven’t stretched much, but I can do just about any normal movement pattern.
I remind myself that whatever fluid comes about from the trauma of surgery, for which Tyler had drains like what Dustin has (I guess they use these when infection is more of a concern), my body just has to handle and absorb it. So this seems to be happening. Healing and resettling is occurring. A doctor was here at Randy’s house training with him this morning (came back to the garage dragging a tire as I was drinking coffee – I was hoping to see that thing in operation!), and he helped explain exactly WHAT is healing and why the lifting restrictions are so important. The fascia layer that is under the skin and fat but on top of the muscle, kind of like a plastic wrap around the body, is what needs to heal and will create a hernia if it’s stressed and strained with too much internal pressure. It is a common complication from all types of surgery, and I do NOT want that to happen. The scar on the other hand -- I love it and I'll always be proud of it. Currently it has surgical glue and although it's long, it's pretty minimal, considering the big open surgery.
I did contact the nurse coordinator yesterday to inquire about an odd symptom of a slight color difference between my left and right side of the lower abdomen. She evaluated it thoroughly from a distance and we decided it’s fine, although for general advice she cautioned me to not do too much too soon. She was impressed that I’m walking 2+ miles a day already. Knowing exercise parameters I can see that overuse of light movements can be as stressful as small use of heavy movements, so I will heed her warning, even though I’m sure I could physically walk 5 miles! Anyway, I was pleased with her response. Looks like I’ll be fine with no in-person checks at all between discharge and my one post-op appointment next Wednesday.
One news story aired yesterday and another is pending. I think I’ve reached the limit of my media career now but I am happy to do it, if it helps spread the word and get people talking and thinking about living kidney donation. As Randy said, “These interviews are going to save somebody’s life.” Wow... yeah. There’s a pretty good reason to do it. Hoping to continue the inspiration. Besides, everyone needs more good news stories among the regular news.
I’m blessed by the care of good friends. Randy and Jenny are SO generous to have me here this week and give me a place to relax and heal. It is working. We met Stephanie for lunch yesterday and at the new gym site this morning. Tonight we are going to Liberty Fest tonight in Edmond. Lee took me out for a fun OKC day on Tuesday. Beth is taking me to visit her place tomorrow. Al is coming to visit Saturday. Sunday I’m headed to Tulsa for the last few days where I’ll get to see Dustin and family again, and Mom will meet me there Monday; we have a day trip to Pawhuska on Tuesday and will come through OKC on Wednesday for the post-op and then head south from there. This "free time" has been quite full.
A week from today I’ll be back home and back to reality. At this point I can say pretty confidently that it will be as expected – one kidney life seems to be just fine! I just have to survive that first month at home with no lifting. But that is SUCH a small price to pay for everything good that’s happened here. And I do feel like I can take the same pride in what my body can do from one realm (strength training, kettlebell, barbell lifting) to this new thing (giving a kidney, recovering from surgery, and healing). Our bodies ARE amazing. They are our teammates in this life, our vessel, our transport, and our way to physically experience the world. Although I can’t train right now, I’m even more motivated to have that be a primary factor in my life and continue bringing that to others.
This entry could be delivered easily via Facebook posts as it is a bunch of update musings. I missed a day or two in these updates and feel it winding down. You can peruse the following in no particular order:
Three realizations have emerged due to my "no greater than a milk jug" lifting restriction 1- The modern age -needs- resistance training as an activity because it is really easy to navigate without going over that... maybe phones need to be heavier. 2- The box with my new Rx regimen is beyond my restriction. 3- Kicking laundry baskets and trashcans to where you want them is likely cheating.
I am cleared to walk outside the house now. So that is a start and my next best step. Lungs finally feel like they are opening up and I can laugh/cough/sneeze without bracing with a pillow and grimacing.
I feel great, foggy, but great. Fatigue finds me early still. Sleep is off due to the "keep bladder light" strategy.
This order is in place to keep undue strain as I still have a stint. This will be removed in an outpatient surgery within a few months/weeks? We are finding timelines are fluid, dynamic and unique to the practitioner in our new post-transplant world.
I have the honor [?] of being the first transplant patient that my Med team has asked to back off water. In fact, I am back under "restriction." 5 liters is now my max, considering while on dialysis it was 0.5 liters or so... this is doable ;)
Got a letter from Mayo that I am --off-- their List. Being fired has never felt so good. They also sent a bill.
We got home to find the house decorated by some dear friends with balloons, banners and notes everywhere. This was awesome, truly. We then wiped down and disinfected the whole house again.
I did have to keep the drain for another week as I am still producing too much... whatever it is that is draining. Gross? you should carry it around, measure and dump it. I'm grateful that I only have one as most have two and some three.
Anna and I have been interviewed by a couple of local (OKC) news stations. It went well enough. This is my fourth TV interview this year and I only watched the last one because Anna sent it to me via text. At least they got my name right. The first interview I did was about St. Francis closing their transplant operations (as they were going to selection for me) and they called me Robert. Our hope it that this will encourage someone else to save someone else.
I haven't stopped writing, but what is coming out is too raw, personal and exposed for public consumption. It feels good to both express it and have a -deep and radiant- space to do so. My kidney health had, by necessity, to be taken to public forum. What continues to surprise me is the love and support of that forum. Thank you, all.
Dad and I are about to head out to get my lab work. Fates willing, this will be routine enough soon that it loses its edge and weight. But like a lighthouse at night it draws my attention and brings a storm of questions. “If this then… if that then… scenarios ran through my mind each time my alarm told me to get up and pee. The transplant team were optimistic that things would be progressing well enough that I -should- be clear to go home to Tulsa today. But apparently my mind wanted to make sure I have a strategy on hand if I go back into the hospital or stay at my parents longer. This tendency of mine is no surprise to my coaching peers who know my CliftonStrengths assessment. It’s not even what I do it is who I am. The numerous wake up’s just gave time for it to flourish.
This soon to be lifted “keep the bladder light” schedule will soon be lifted but as I wrote the above, I can’t help but think of the parallels between this time of fractured sleep to when Bennett was a newborn with his cries replacing my alarm. And that is what this is… a birth. Anna’s choice has given me not a promise but a solid chance at a renewed life. I will not waste it.
At ten this morning Mom, Kenzie and I will head back for clinic where we will review my log, get a new med list (based off the morning labs), perhaps get my drain removed and find out if I am stable enough to move a turnpike drives distance from the hospital. It seems excessive to drive from Cashion to Baptist Integris twice but hanging out at the hospital where sick people go makes no sense nor am is going for breakfast or shopping wise yet especially when I have to measure my urine output every 20-40 minutes. So, we drive twice, plus Dad would rather drive early and be done for the day and Mom and Kenzie may be better recorders (and enforcers) of doctors’ orders.
If we get the expected news we will drive home in the morning. Dad and I will take the RV early with Mom, Kenzie and BenBug following in my truck a few hours later. I will hang out with Dad while he sets up. I have an HPI training call at 10 so will try and be home by then… they tend to go better in my office/sanctum.
Off to labs…
This next statement is silly.
I have moments of frustration at not being “productive.” I know, I know.
I’m keeping up with my client calls and coach training programs well and even wrote a few chapters in my writing project, but find myself with what seems like lots of time. I have short spikes of feeling great and generally feel pretty good which is amazing at the necessary lack of sleep I have been getting. The reasons for sleep disturbance in the hospital is obvious but at home it started with catheter discomfort and now it is because I’m supposed to not go an hour without peeing. I find myself quite optimistic about what could be in a few months when that restriction lifts.
Kenzie doesn’t believe I know what feeling great, or pretty good feels like. I have been a professional patient for a while or as Kenzie says I am really really good and being really really sick. What if she is right? I already hear her responding she is always right.
The above frustration moments don’t come from my physical energy or its lack, I have learned to navigate that well. It is my brain. My mind is currently showing up as foggy, small, confused, restless. It’s the drugs. My clarity will improve as I adapt and/or the doses decrease I am certain.
Save that second night in the hospital I haven’t taken any pain meds (and that was pointless attempt at getting some sleep). My transplant pharmacist (who was great) said that people usually get a surge in pain on day three (when the anesthesia wears off) or a week post (today). Nothing, not really.
I wasn’t trying to be a tough guy but the discomfort seemed protective not unnerving and told me when to rest. Pain management is complicated, but the two handful of pills I was given seems excessive. I leave that issue for later discussion in a more fitting forum.
In reality, I have only one job and it’s requirements are simple: Take my meds on time, drink and pee frequently, and hang out with Bennett in between. I will be pushing my coaching practice forward in the next few months and actively opening more slots and with that comes a myriad of projects. But now, I just need to do what I need to do and honor Anna's gift by taking the best next step for my recovery... again and again.
Anna Cannington has offered to be part of this program. As a kidney donor with a nephrologist brother (not to mention next level human) she will be able to provide unique insight into "other side" of the transplant process. It is particularly apt for her to join up as she is Dustin's Donor. To schedule a conversation with either of Anna or Dustin just click the Kidney Koach Button below.
Dustin was diagnosed with IgA nephropathy (Berger's Disease) in early 2007. He and his family know well the struggles that come with suffering kidney failure, dialysis and the transplant processes. Born from these fustrations and Dustin's love of strengths-based coaching (centered on what is best in people) comes the Kidney Koach program. This NO FEE program is for Renal patients, their families and nursing staff that want support, understanding and a little help on the path. Schedule a session below to get started or to ask any questions you may have.