Happy July! Yesterday was fragmented but was a good day. Although I did some writing I really couldn’t pull together coherent thoughts. Today seems better so here's another blog post. I am currently settled at friends Randy & Jenny’s house who are graciously hosing my “week 2” R&R here in Oklahoma City. Yes, it’s now Week 2! One week ago right now the surgery was underway. Now we’re WAY on the other side of it. That week was the steepest slope for me I'm sure. It will be rather uneventful now; technically I could be home now because I have no mandatory labs or check-ups until partway through week 3 on 7/10, but since I have to be here then and I need to focus on resting in the meantime, staying here was a good scenario and has been the plan since the dates were known. I’ll have a few outings here and there to keep from going stir crazy. Last night we went out to dinner at a Vietnamese noodle place. WOW! It was really outstanding!
Dale went home yesterday and is already back at work. He hated to leave me, but I assured him he was here for the important part where I needed him. He really came through for me on this whole thing. Of course he took great care of me in the hospital and after, but the part that really makes me teary-eyed is thinking of how sweet he was on the trip up here and leading into surgery. He was endlessly patient and we were never irritable with each other, even though he was really not wanting to do this or see me cut or hurt or disabled in any way and had understandable doubt and fears about the whole prospect. He trusted me and supported my choice, and he participated in the entire operation and we made it ours. I hope most of the fears are gone now. I was feeling like myself by day 3 and I’m physically getting better by the day. All of that seems to be related to surgery recovery and none to having only one kidney, but the long-term story will have to play out. My brother Seth has always had confidence about that.
I said a few entries ago that I would write about Seth so I'd like to do that today. Seth is my younger brother by 5 years and we seem to get in the habit early in life of not paying sufficient attention to our younger siblings as we get busy with our more advanced lives, right? Then they go and do amazing things while we’re not looking. While I was active duty in the Air Force in the '90s, Seth graduated from Harvard University and then went to Medical School at the University of Massachusetts. After a residency in Internal Medicine he became a Nephrologist, or kidney doctor. He is currently an Assistant Professor at Tufts University School of Medicine with clinical focus areas in “Dialysis, general nephrology, chronic kidney disease (CKD), diabetic kidney disease, glomerular disease, vasculitis, hypertension, cardiovascular disease in patients with kidney disease, acute kidney disease, acute kidney injury and kidney stones.” Why nephrology? He says, he likes nephrology because he gets to take care of the most complicated, and sometimes sickest, patients. (Randy, knows some cardiologists and says they bow down to nephrologists, because the complexity of the care is astounding.) I have really come to appreciate both the kidneys and my bother Seth’s expertise over these past 6 months since my kidney journey started.
Seth was the first person I contacted on January 3, 2019 when I decided to be a kidney donor for Dustin. I remembered talking a year or two earlier with Seth about living kidney donation during a family visit. Even with him being a nephrologist already for many years, and of course hearing stories of kidney donation, I really had very little awareness of the whole thing until that conversation. I remember asking a lot of questions and coming away from it with the thought, “I think I’d be willing to do that” if it ever came up, such as for a family member. Anyway, it put me a pre-set mindset of willingness to consider donation, and the news story about Leilani made me progress to action, so the next logical step for me was to contact Seth to see if there was any big thing I needed to consider. With his initial helpful input and no sign of actively dissuading my thought process towards it, I proceeded to talk with Dale and other family members, contacted Dustin’s team, completed the initial screening, and the ball got rolling.
January – March were the busiest months for me question-wise. Not yet confirmed “matched” to Dustin (that came March 22, 2019), the transplant center (actually “centers”… I dealt with three of them! A story for another day!) treated me as a prospective donor, just another fish in the pond. I can’t blame them. They must have a lot of those. Once they have a match and the comprehensive testing is complete and you are approved as a donor, they are quite at the ready with anything you might need! But not so much in the early stages. Early on you are somewhat on your own, and the questions are farther out of left field because the whole thing is new and there are so many possible progressions of the journey in addition to the straight path. The mind is busy with doubts, concerns, things that could go wrong or less than ideally. My mind tends to get “wrapped around the axle” with these sort of thoughts sometimes and Seth saved me from that again and again. I’d send a question and he would reply almost immediately, giving me the information and context that I needed to progress past that sticking point or just relax. A few times I’d send a test result or something that I thought could be a problem, and he would say, “I am not worried.” That always settled me right down.
Seth helped set my expectations from the beginning. Kidney donation is usually not a lifetime thing for the recipient, though of course it is for the donor. Early on, we talked about Dustin’s specific condition and the possibility that it could reoccur in the new kidney but would likely take many years if it did. Seth said, “In general, I advise that the donors not to get hung up at any specific expected outcome: view this as giving a good chance at a fairly long (many years) dialysis-free interval, and a small chance of a short or very long interval, But it’s unknown ahead of time.” I was OK with that going in, and still am now. Every day of success just makes the whole thing more worth it, but I’m glad I did it no matter what happens from here on out.
My questions to Seth actually slowed down after my 3 days of testing in April which I called "Kidney MEPS" and included an ultrasound of the kidneys, CT Scan of the abdomen with contrast, multiple labs (blood/urine), chest X-ray, EKG, Echocardiogram, treadmill test, Renal flow test, and individual appointments with Nephrologist, Surgeon, Nurse Living Donor Coordinator, Social Worker, Psychiatrist, and Independent Living Donor Representative. At that point I got the fill input from the transplant team and they were fully available to me afterwards and from that point on. But Seth always gives a reassuring view if things seem unclear.
The biggest comfort to me is that I know that Seth will be there for me for the rest of my life as I navigate life (probably uneventfully, but unknown) with one kidney. Every doctor will have their own new opinion on the significance of my “one bean” status as health issues and checks arise. Seth will always understand the big picture and what it means to ME, and let me know what matters. Knowing this going in made a huge difference to me. In fact, as I told Dustin and Kenzie in a video I made a while back talking about why I’m doing this, if I had to pick the one reason that most people DON’T do this, it’s probably that big unknown. They don’t want to subject their family members and others to possible health problems on down the line for a choice they make now. When that impact isn’t really understood, they don’t feel free to make that choice. With that resolved or at least reasonably quantified, I felt like I could truly make an informed decision to do it.
I do have more words in me today but I suppose that is enough for here! I might actually try to get a few hours of work done today. I don’t know if anyone misses me yet, but I am beginning to miss work! That’s got to be a good sign!
Got to try out the transplant emergency line yesterday. While there are many things that can go astray that leave one things a little nebulous and stuck in that should I or shouldn’t I call realm. There are a few key “call now” markers. One of these is blood pressure.
After leaving the hospital off blood pressure meds, I got put back on one Friday at clinic. Saturday the starting doses hadn’t touched it. So, I took a clonidine, as directed in my discharge directions. I have had this drug around since my TIA/mini-stroke/once is enough experience last summer. It is a take as needed drug to drive down BP fast as well as consciousness… Usually, I go to bed for four hours and wake up with a hangover. Not a fan of this loss of control/time and yes, I’m a lightweight.
After taking one yesterday morning, and following along the normal path. I took my BP fours later and it was still outside of parameters. So I called. The collective blood pressure of the house rose outside of parameters, I am sure. It was a smooth process: talked to operator—placed me on hold while they connected to the on call coordinator—the on-call nurse who is part of my transplant team took all my information, explained specifically why they are trying to keep the BP in a narrow range (perfusion of the new tissue is helped a bit by a slightly higher BP but too high on the new vessels and…), and said she would call the nephrologist and get back to me. Three minutes later she called back with some simple new parameters.
I like systems. I like standards. They are far less fear inducing than guessing or over reliance on expectations. “Expectations are premediated resentments,” after all. So, take BP every four hours if outside of certain range take a clonidine. Up to four a day. Watch Heartrate because there is a known interaction between this drug and another I am taking. If HR drops too low, call.
I took 3 clonidine, before getting BP within parameters. Slept well despite the naps and actually glad to get a test run of my support team. Turn all things to advantage.
Feeling very much like myself today. Sleep was excellent, pain is minimal, and I'm moving well. Still quite bloated or swollen or whatever it is; this morning it feels like 6 months pregnant. But things are rolling around in my guts as they get back to normal so that will probably vary throughout the day as it did yesterday. Mentally and energy-wise, I feel VERY normal. No fatigue or run-down feeling whatsoever, and my thoughts are clear.
Dale and I had a nice easy day yesterday. Visited downtown; the Oklahoma City National Memorial & Museum. Somber place. Took me back to 1995 when it happened; I was in the early months of pregnancy with Tyler. It is very well done and I'm glad we went. We had lunch at Toby Keith's restaurant and then headed back to the hotel to rest and maybe do another outing later, but our only outing later was a slow ~1/2 mile walk outside after having a sandwich for dinner. It was the right amount of activity for me. I feel pressure and discomfort after too much moving and walking and standing, so that is my limiter. I have a back warmer brace thing that helps, and holding pressure with my arm or a small pillow helps, but I think I just need to listen to this and rest as needed.
Last night I read through my Kidney Journal that goes from early January until the day after surgery, now with the "after" perspective. Looking in the rear view mirror now, I ask myself, is this what I wanted, envisioned, and worked for these last 6 months? The answer is clear. YES. Absolutely, this is it! It's wonderfully ordinary and at the same time, amazing and extraordinary. The fact that Dustin and I are both celebrating the ability to do normal things and for things to be as they would be without any of this needing to happen -- moving well, showering, normal trips to the bathroom, feeling good, having energy, not having restrictions -- this is the great stuff that most people take for granted and this was the primary goal. The icing on the cake is the value of the journey, the experience, the learning, the new friendships and bonds. I am feeling very grateful and appreciative of it all. And yes, it is what I wanted, and way more. I feel so very, very glad that I did this.
There is a new publicity event brewing with a local news station, and we've been mentioned already on two local news stations here. I didn't think much of it yesterday, but this morning I realized that "local news" here in this big city is a lot bigger than I'm used to at home. Maybe I should be nervous or something? Haha. But I'm not. This story tells itself; all we have to do is be genuine and let it out. A lot of good can come from that. Kenzie shared a post from the National Kidney Foundation who shared OUR news story. Seeing the successful stories on these groups all this time, and now BEING the story -- WOW! The hope and education of each story shared feeds the assembly line to everyone behind us, so I am really happy to be a part of that.
Time to get packed up and move towards the rest & recovery location. Grateful for family and friends to look out for me during this time.
I did a lot of "one last time" things over this past month and I woke thinking about the thing I forgot this morning. Sushi. Rare meat of anykind is now a giant no...hard yolks even. I dig avocado rolls so no big deal in this regard.
Burnt (well done) lean beef is still unappetizing and I wonder if I will change to different protein sources. I have tried for a few stints to go plant-based in the past after hearing how they can help kidney disease (flimsy data, but…). I documented my [n=1] experiments well if anyone is interested. After a single nice week on this approach everything falls apart… energy levels, hormone balance and performance. Also, it feels like I am eating constantly.
A cyclic ketogenic diet (not a recommendation, necessarily—nothing here is) worked best during dialysis as I was able to control my “dry weight” very effectively. Dry weight is key marker in dialysis treatment you establish one and then the clinic takes off the fluid you retain between sessions. In general, the more they take off the worse you crash. I had a few idiotic incidents in the beginning when establishing my dry weight. 16 pounds lost in three hours and waking up to EMSA, for example. After I realized I had to take a more active role in this, I knew my numbers and double checked the staff’s math… I'm sure I was a favorite patient. Kenzie and Aaron can tell stories for days now, I am guessing. Aaron was my Tulsa PIC was my driver/bodyguard on days things went south. Towards the end I would come in at or only slightly under/over my dry weight. Doing so made the treatments from that aspect less threatening.
I am curious what my nutrition strategy looks like in a few months. We (Mom has been cooking for me) are being very disciplined/boring with my nutrition at the moment because with the high-dose prednisone I could kill four pizzas a day and still get up rummage for cake. The prednisone will dramatically taper off this next month. This is typically one of the drugs that living donor recipients don’t have to suffer through long-term. For deceased donor recipients it’s a mainstay, forever.
The nutrition section of the notebook you get (They call it the transplant bible) is surprisingly basic and my assigned dietician was thoroughly unengaged. I feel this way perhaps because when Mom and I went to the Mayo Clinic last September we had a lengthy discussion with the transplant dietician there and had quite the report… I will be leaning towards her advice as I didn’t get any locally. Perhaps the strategy here is to put out fires. I prefer a more proactive approach.
I will likely lose some her who aren’t fit/diet pros, but it is worth mentioning that while I find the work of Ray Peat fascinating even though my personal experimentations with his ideas were disastrous… like admitted to hospital disastrous. I have friends and peers that have embraced it’s inherent logic with seemingly positive results, it isn’t the route for me.
Due to absorption issues and the critical timing nature (8am and 8pm) of my new meds. I needed to decide if would eat with my Rx’s or not. Either is ok but it needed to be same each time for accuracy. I opted to not eat as I’d rather be hungry than eat when I am not. This sets a natural eating window between 9am and 6pm. Easy; as I am used to intermittent fasting and my Ayurvedic practioner friends would approve.
I’ll wrap by saying that I feel more curious than anxious about my impending food journey. There are some strict restrictions and restaurants will be seldom worth the risk as I have been warned food-born illnesses are my nemeses, but what a small price.
It's nice when the blog post can start out with some indication of the contents, but really I have no idea what words are going to flow today. If this turns out worth sharing, I'll send it to Dustin to post. One reason I'm really glad we started this blog is that it productively channels the enormous amount of mental activity around the event. Rarely does a life event involve so many aspects at one time -- the physical, the practical, the emotional, the cognitive -- and the brain has to process everything. Once again my part here is easier than Dustin's (he has a lot more details to keep up with post-transplant) so I know if he can do it, I can too.
Dale says, "So far, this is the best day of the trip." We are leisurely enjoying hotel breakfast and coffee and not having to go anywhere today. I feel great this morning. I slept well, pain is minimal, guts are finally back close to normal, and my stomach swelling has gone down from what was feeling like 6 or 7 month pregnancy to maybe a 4 or 5 month. (I really don't know how else to describe it. It's perfectly normal they said, and will continue to go back to normal over the next couple of weeks.) I'm still walking medium-slow and a tiny bit bent over, but mostly pretty normal. I feel no fatigue, no nausea, no brain fog, no crazy emotions. The "in tuneness" with my body that I mentioned in a previous blog post seems to be serving me well. I am quite impressed with my body's ability to handle this serious impact and recover.
The publicity is funny. "Vancleave woman's kidney donation a success" was posted yesterday as a news story follow up to the news story a couple of weeks ago. Dale says he's going to get me a T-shirt that says "Vancleave woman" haha. In the world of local news, where you live is your identity. As for "a success" -- I think so, I hope so. We all do! It has been, so far! But it's a long road and for Dustin there are some more hurdles to clear of over the next days and weeks and months, so maybe from his side it's too early. I suppose from my side, it's accurate. My part has been successfully completed. The kidney has been removed, transplanted, and is working really well. Awesome!
I learned yesterday from my nurse coordinator (who was present during the surgery and took some photos of the kidney for me) that they did NOT cut any of my muscles! Wow! I thought they had to cut through all that and then stitch it back together. Nope, they just cut through the top layers, pull the muscles to the side with retractors, and then go under them to go deeper towards the kidney. That was great to hear, and I'm thinking should help a lot with recovery of previous strength and movement.
Dale and I are going to Dustin's parents house tomorrow to spend a little more time with everyone before Dale heads home, and I'll then have another week or so to recover and rest here before I head home. I think that knowing we'll see Dustin and his family again soon is keeping my emotional "boat" in calm seas. I need to be with them for some more time after all we just went through. If we were immediately headed home I really would feel torn up, like I'm leaving a part of me here. I mean, I am, right? That was the plan. It's a crazy thing. It's all good, but it's hard. And I may still feel like that week after next when I leave, but I think with some more time together and some more time to work through it, it will be OK. And OK in another way, too... I now have Oklahoma family.
“What do I think of Anna? “That is what the hospital publicist asked me by phone as I sat on the bed at my parents house watching Kenzie, Mom and Dad flitter about unpacking (Bennett was with Aunt Robyn). We had just pulled in and feeling quite unsettled still. I had called Anna to share with her how -off- it felt that she wasn’t next door and she didn’t answer. When the publicist called I assumed it was Anna and answered without checking ID. The perky voice on the other side said some nice things and that immediately drew my suspicions. I’m not overly distrustful by nature, but the high-dose and high-volume congregation of chemicals needed in the beginning to maintain Anna’s gift has left me a bit nebulous of mind and baser protective modes have emerged.
“What type of person do you think volunteers to donate to a stranger?” Was the next question and I couldn’t tell exactly how I answered the first? But, I answered immediately:
-“She has never been a stranger; I just didn’t know her.” -
Warning to media folks, I tend not to give good sound bites or provide simple single factor answers. I shunted the following awkwardness by asking some more clarifying questions at what the objective of this call was. In short, the hospital wants to shop our story to local affiliate and tie it to WLOX story that Anna did a few weeks back. The publicist is writing it up (Anna and I will get an editing pass) and then shopping it to local news for a story. The very palpable sense of urgency comes from Anna’s scheduled return home.
Anna called me back then and the I realized that the reason she didn’t answer earlier was that she was on the line with the publicist. I didn’t answer but texted her who I was talking to. We connected after my call and agreed (as we do on most everything, except diet soda) that we were both “in” as long as it could be of value and service.
So, what do I think of Anna? That is between us and our families. I have no issues recklessly spewing out sentence after sentence as my rambling posts can attest, but we are walking were words fail now.
I gave in and took an Ambien last night and slept well. I have only ever used these sleeping pills in the hospital. Not to mention names, but I believe I have a certain Florida friend that did some sleep driving after using it. Earlier in life I was known to sleep talk, walk, eat and punch holes in doors when I was sleep as well as the nightmare/terrors. That resolved as aged, and started taking care of health more proactively. I slept and since my urinary catheter and drain are still attached it must have worked as intended.
It is 4:30 in the morning as I write this and in 12 hours I should be discharged. I will go home with the afore-mentioned Foley Cath and drain. The drain will be in for a week or two… still unclear on how long I keep it. It is a little grenade size bulb hanging from tube out of my left oblique. The urinary / Foley catheter will be with me at discharge and I get to remove it myself tomorrow morning. Looking forward to it being gone, but not looking forward to doing it. The reason they won’t remove it here is that the want to keep the bladder unstrained for a predetermined length of time.
I have been an open valve and with the pushed fluids. Apparently, I peed immediately in post op and haven’t stopped since; 6.5 liters yesterday! After my first walk, I was stable enough to not need the wheel chair as an aid but the pocket in back of the chair holds the urine bag well, plus Bennett likes to ride around the floor with me. So that is why you still see me using it in pix.
Things will shift significantly tomorrow once we're discharged from the hospital floor 10E, and it's going to be hard to deal with that emotionally. A lot of donors talk about a depression that comes on afterwards, no one knowing if it's physical or mental in nature and source. Essentially, after all this intense effort and work to get to this goal, the transplant team is done with me. I have one follow-up appointment two weeks from today so they can check the incision and give me departing instructions, and then follow-up labs that are required by UNOS at 2 months, 6 months, and 2 years. I can do those from home.
The team has been great to deal with and they took good care of me throughout the process. This included the nurses, other care providers or assistants, the pharmacist, the team doing rounds with the surgeon, etc. They have all visited me regularly since Monday morning. Today the Independent Living Donor Advocate came to visit and asked if I would suggest any differences that would help make the program better. I said it was all good, but if anything, more attention to the donors in the early stages of the process. I had my brother Seth to answer my questions since he is a nephrologist. But most donors don't have someone so readily available at the time they most need support and attention. Once the matching is done and the testing is done and everything passes muster, it's rare for someone to pull out although a donor can still opt out at any time up until they go into the operating room. But how many potential donors are lost to the beginning stages, before they are really on the radar of the transplant team, because they have questions and doubts and no one to answer them? This is where I would put extra emphasis, though I understand what drives their time and attention -- basically, when they have one hooked, focus goes there. The other fish just cruising around just haven't earned that extended effort yet. So I'm not sure they can change, and filling this gap may be up to advocacy efforts. Towards that effort, this blog and the sharing of our story is a start, as I'm sure we've raised awareness in at least a few people.
Back to me, I think what I need to remember is that this next 13 days while I'm still here in OKC and just resting and healing, I have to heal in every way. That means give myself whatever time and tools I need to deal with emotions that come up. Journaling is one for sure. I've kept a journal about the kidney donation that goes from 1/5/19 to 6/24/19. Now I need to start a new one for after. I'd like to re-start meditating. I might read some books for fun (fiction, even!) to just give myself that gift of leisure time. The biggest thing is reconciling this into my identity. I am a kidney donor. I'm a one-beaner. Some people say I'm a suerhero or an angel... I don't know about that. But I did actually do this thing, and it has changed me. I need to understand how, and that will take a bit of work.
Today (day 3) was not hugely eventful but we all had some signs of progress, some good visiting time, and more confidence that things are still looking really good as far as the transplant being successful. Dustin and I both did a lot of walking today which is very helpful in getting back to normal quickly and avoiding complications. Our families supported us for another day, and I for one am feeling lucky and appreciate Dale very much!! I also got a visit from my friend Lee which made me happy. Got more messages, etc. from many people, and got to meet Dustin's dad as well as his Mom whom I had met back in April. I'm so glad I could help this family and specifically the family member they all value so much.
I am not sure if the next few days will be useful to blog or not. We'll see. Anyway, thanks for reading!
Zero sleep so far at 2:11am. Decided to write and study instead for a bit as I am still not clear to get up on my own. I did have some walks and chair time yesterday and each time up got easier to manage. The soreness is there but far less than Anna’s, I imagine. It’s less invasive to place a third kidney in the front (they don’t remove native kidney unless cancerous) than get one removed.
So, my mind is clear and I haven’t gotten angry or emotional as they keep warning me about due to super high-dose Prednisone. One of gifts Anna’s donation has given me is that I will be on half the meds with a living donor as opposed to a deceased donor. The prednisone is short term where it would rest of my life with a deceased kidney; unless one won the lottery and got the six-point match.
There are some stem-cell therapy research trials going on to “adapt” a transplanted kidney and even lower the meds more. No idea if and when that will be viable. These meds are expensive. We have good insurance and Medicare pays for the first three years. There is a movement to make this lifetime. The chief reason transplant fail after the first 100 days is due to non-compliance with medicine. People get in a bind and can’t afford it. I met with pharmacist yesterday and have another meeting with him and my caregivers Kenzie and Mom today. I have “book” of how to take care of Idunn which includes a massive section on Rx descriptions. And even have to take a test over this before discharged.
Dr. Samara is still saying Thursday looks likely to leave the hospital. We won’t go back to Tulsa but to my parents’ house in Cashion as I will have doctor visits and labs on Friday, Monday and Tuesday. If I get an all clear on Tuesday we will head back to Tulsa.
I will still have my drain ( a bulb that is grenade shape and size) sticking out of my side and my urinary catheter and my chest catheter at discharge. Although the latter may get pulled on Thursday morning if my labs continue to show a continually reduction in creatinine (dropped from 8.3 to 4.5). Doc said no more dialysis, likely! The drain is to collect the excess fluid and damage caused by surgery and draw it out of your body. I was fortunate in that I only have 1 drain. Most have 2 and a few have 3 based on abdominal fat. So, I am full of tubes, but If things line up with the doctor’s estimations they will all be out a week from now. Can’t lift more than 8 pounds for quite a while. We have heard 6 weeks and 3 months. So, while I am anxious to get my training back on track it will be a slow, steep road. We are starting to get a glimpse of the new normal.
It's hard to type with a pulse ox taped to my left index finger, not to mention all the other contraptions I'm hooked to! But it is less than yesterday. Each hour is a little better. I'm just now getting my first food in about 56 hours, so that's helping a lot, and I just walked two laps around the hallways. Slowly but surely recovering.
I'll try reviewing the last 36 hours since we arrived at the hospital for surgery, minus the anesthesia of course Dale and I arrived for check-in at main registration at 6:00. Got my bracelets and paperwork, then up to ASU 2 to check in. They brought both of us back to a room we stayed in for the next 2 hours. A nurse came to to review paperwork, meds, etc, they changed me into a gown, put my IV in. The anesthesiologist came in to talk about how that would go, and I was comfortable with that. The surgeon, Dr. Samara, came in to explain things to me and Dale. I had talked to him once before in April and things had changed slightly since our first conversation which was mostly about a left laparoscopic nephrectomy because later they decided to do a right open nephrectromy. But he was excellent.
Just before 7:00 and Dustin and Kenzie were able to come by to visit before he went to hospital dialysis which preceded his surgery. We had a nice visit and it struck me again how we are all 4 calm and capable people which added to the collective feeling of being ready and feeling like this is really the right thing to do. I think they left just after 7:00, and Dale and I were in that room until a little after 8:30. My surgery time had changed from from 8:00 to 8:30. I remember the clock moving SO SLOWLY between 7:30 and 8:30. We joked and waited and checked messages. I stared at the ceiling and thought about important things.
Finally the nurse came in to push me on the gurney into surgery and we made the very long trek to what felt like the back hallways of the hospital, a very sterile and industrial feeling. The room was much bigger than I expected with very high ceilings. They spoke nicely to me and had me move onto the operating table. I followed a few instructions but I don't remember what they were... things went dark then. The operation was underway.
The doctor and nurse coordinator came out to give Dale updates: When they had me open and were working on the kidney, when the kidney was out, when i was closed up and moved to recovery. They said there were some pain management issues to work out as I awoke but I don't remember them. When I remember waking up I was still and sore, but not in pain. I was drifting in and out of consciousness. They were giving me fentanyl at that point which Tyler had warned me to tell them not to do because of nausea, but I didn't have any problems with it. Nurse Ashley or someone came and told me the operation was successful and everything went well. I smiled as I went back to sleep. It was good to hear that my part was done. Now I just had to hear that Dustin's was good.
I might have been recovery for an hour or two, then they brought me up to my private room here on 10E which is right next to Dustin's room. I think Dale was here when I arrived. I'm really fuzzy about that part and most of that afternoon and evening, but I do remember hearing that the transplant was sucessful and the kidney was working right away. A friend of ours came by (Shaun) and then another (Randy) and I do remember both. Dale left around 8pm to go back to the hotel. Nurses and others were in and out of the room all afternoon and night, checking vitals, giving meds and IVs, hooking me up to things, asking questions. They came in most of the night and I didn't sleep very solidly due to discomfort. Fortunately the bed isn't too bad to stay in one position because I was unable to move much.
So that was all Monday night into Tuesday, and right now it's Tuesday night. I've progressed a LOT since this morning. I couldn't imagine eating anything this morning, and now I'm ready to eat easy soft things (and have consumed a few). This morning I had a good bit of nausea and that's gone now thanks to anti-nausea meds and stopping the opiates. This morning I hadn't gotten out of the bed and now I'm doing laps in the hallway. This morning I had a catheter and now I've been to the bathroom myself 5 or 6 times (evidently my remaining kidney is doing just fine). This morning I could barely think straight enough to read messages on my phone, and now I'm typing this. So today was mostly just making slow progress with food, arrangements, moving around, medicine, etc. Dale was a huge help, and so patient. He's not used to seeing me like that - immobile, slow, and somewhat helpless! We did also get to visit with Dustin and Kenzie a couple of times. They are doing great!! I am so pleased to hear good reports on the transplanted kidney which now goes by Idunne. However, I feel no ownership of it anymore. I just really want a good outcome for Dustin.
My incision is one straight line about the length of my hand if I stretch it out pinky to thumb. It goes from two inches above my belly button to my left side. I'm going to like the scar. Dr. Samara stitched it up like plastic surgery and glued it, so I won't have staple marks. He did say that he was glad that I agreed to the open surgery, because it was easier to get the renal vein. It was split into two veins where it connects to the kidney, so by being able to get it right off the inferior vena cava (as I understand it) gave him a more viable organ to transplant. This would have been very difficult or impossible get it out this way laparoscopically.
Nurse Ashley came by to give me the donor educational materials - i.e. the remainder of recovery to take it easy because I don't want to deal with an incisional hernia, and how to live life afterwards with one kidney - basically, the same with a few minor exceptions. One is that Tylenol should be my go-to for pain rather than Ibuprofen or other NSAIDs. Another is that I should avoid getting dehydrated; so, 2 liters of liquid per day. She also recommends not going on a high protein diet, though this recommendation varies widely depending on who you ask. Things like this long term I can always consult with Seth.
They say I'll likely be here all day tomorrow and get discharged on Thursday. I'm looking forward to that, but I do need to prepare for it -- the attention will die down (both medical and all the online messages, etc.) and after a couple more days with Dale in the hotel, I'll have a quiet 10 days of recovery here in OKC staying with a friend before my mom comes up to bring me home after my post-op appointment with the surgeon. Fortunately, there is more of the story to watch happening, as Dustin gets back to healthier with the new kidney and he and his family can move on with their lives. So there really is no end here, the happiness generated from this event will continue on indefinitely. I'm certainly good with that.
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.