tag:blogger.com,1999:blog-31424581874370140682024-03-16T14:53:12.397-04:00KidNeedsAKidneyFollow a mom and a child with nephronophthisis through the kidney failure and transplantation process.DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.comBlogger904125tag:blogger.com,1999:blog-3142458187437014068.post-48640316954313208492024-03-07T16:56:00.005-05:002024-03-09T11:13:11.536-05:00After Visit Summary.....<p>We drove to Rochester yesterday through a lot of rain. A LOT of rain. It was never bad enough by itself to really be terribly problematic, but when we slammed into a WALL of fog in the dark it got terrifying. I can't remember the last time my mouth went dry from fear. It took us quite a bit longer to arrive than typical, and it took HOURS for the adrenaline to wear off so I could sleep.</p><p>Babygirl's appointment was at 10. The lab opens at 8. She went in about 8:15, and came out unusually quickly. "They don't have any orders for me."</p><p>Well, that's a first. </p><p>I told her to hang out at the lab. I went upstairs, breezed past the check-in folks and knocked on the office door. I told them the problem, and they sent a text to the doc asking him to send in some paperwork to the lab ASAP.</p><p>As I was re-passing the check-in crew I got flagged over. As in, Do Not Refuse (please). I explained the situation and the lovely clerk told me that Babygirl could have had her labs drawn in Nephrology. Well, that's good to know, thank you - but there wouldn't have been any orders no matter where she was sitting.</p><p>It took a little while, labs were done, and we went back upstairs. </p><p>By that time, Nephrology had apparently forgotten we were there. Babygirl finally snagged someone as they were calling in another patient to remind them. We went in, got seen, got lab reports (all good). She was scolded for not checking her blood pressure (you HAVE met her right?) and not being religious about home labs. Her doctor then plainly outlined what worries him the most.</p><p>Most of his patients are more "ordinary" transplant patients, with an average risk of complications and rejection. Babygirl is NOT ordinary. I mean, I KNOW this, but it's alarming to have her be medically challenging to an extremely confident uber-specialist. </p><p>We've been hiking this highway for a very long time. I've kind of come to regard Babygirl as some sort of, I don't know, Average Abnormal? Trust this kid to be Above Average when it counts LOL.</p><p>Her risk of early rejection is substantially higher than average because she has antibodies to EVERYTHING. Her doctor wants to do all he can to detect rejection as early as possible. To that end he has ordered some (pick some random alphabet letters here/DNA) test to detect the possibility of early rejection. If I understood this correctly, this test measures the percentage of DNA in her system that doesn't belong to HER. If you consider that a kidney is only slightly bigger than your fist, the amount of foreign kidney DNA in her system should be proportional to her own (by weight? Volume?). If there is more kidney DNA than expected, even if the kidney seems okay by function, they'll look harder for signs of rejection. Likely via biopsy. </p><p>It only just now crossed my mind to wonder about DNA from the OLD transplant? I'm clearly a bit over my head in this, as always. I mean, I guess that would be distinctly different from the NEW transplant?</p><p>So someone will be contacting us regarding this (doubtless unGODLY expensive) blood test, which will be drawn at home by someone from whateverthehell biotech company invented this bad boy. Yippee.</p><p>To summarize: Babygirl has excellent kidney function, great cholesterol, undetectable diabetes. She has some expected-but-improving hormonal abnormalities common to renal patients that do not require immediate attention. Her liver is slightly irritable, go easy on the Tylenol. And as always, "Consider an IUD or other long acting birth control, and always use condoms" as one of her medications causes birth defects. Babygirl considers this a genuine non-issue but promises the doc that he'll be the first to know if that changes. </p><p>Lordy.</p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-53213503718492455992024-02-04T08:43:00.002-05:002024-02-04T08:43:23.134-05:00Two Years of Increasing Fluff.....<p> First things first. 12 years ago yesterday a young man's parents had a horrible choice to make. In his death, the gave life and better health to many people, including Babygirl. His kidney bought her 10 years of dialysis-free life. And while transplant patients can never truly be considered "healthy," she did SO many things with that time: Mission trips, hiking, traveling, and being the Best Auntie Anyone Ever Had (I mean, except maybe all of her sisters, who are pretty fine Aunties as well LOL). </p><p>Last year this was all very difficult to talk about. The loss of that kidney, the desperate week of touch-and-go, and the subsequent spiral into dialysis? It was a very different ride than the first time, when despite the shocking fact of Babygirl's kidney failure we had TIME (although to be honest, it really didn't FEEL that way!) to choose her transplant center, dialysis type, etc. Two years ago it was more like running head-on into a brick wall at 100 mph while simultaneously needing to keep driving at 100 mph. </p><p>Something like that. It beggars description, really. </p><p>At the same time, I went from being the mom of one disabled adult child to the mom of 2 disabled adult children, as Curlygirl began her ongoing descent into the horror that is Long COVID. </p><p>As a result of all of this, much of my life ground to a halt. I had already slowed down on my walking (winter is tough. I'm too old to fall on ice). When spring came, work, dialysis, traveling with Curlygirl to investigate Long COVID centers and solutions, and helping out with the grandkids took over all of my energy and my coping skills took a nosedive. When you know that self-care matters, but you can't really care that it matters? I mean...</p><p>I started counseling and journaling (a good go-to when times are tough!). I'm still crawling up out of that hole. </p><p>But one of the ugly consequences of all of this lack of self-care has having to also cope with the fact that my pants don't fit. There's a lot of fluff going on. The last time I spent a few years ignoring my own needs I gained 100 pounds. This time it's "only" 10, and it has stabilized, but I can't, won't, will absolutely NOT buy bigger pants. </p><p>I can't remember the last time I walked to work. Ella is Very Sad (as only a droopy-faced hound dog can be) about how few walks she is getting. I walked her yesterday and felt the top of my hamstrings protest like I'd personally invented hills just to torture them. At least I wasn't winded, but to be fair Ella can't walk fast enough up a hill for that to happen. </p><p>Recognizing that one needs to stay as healthy as possible to delay as long as possible being a burden on one's children, and taking the steps needed to do that are very different things.</p><p>So. One of the oddest things on my bucket list is that I want to climb the bridge in Sydney Harbour. The summit is almost 450 feet above the water and crossing the entire bridge and back takes 3 1/2 hours. Citygirl and Babygirl want to go to Australia but both give a hard NO to climbing that bridge LOL. Citygirl's Beau is absolutely down with it, and he's muscular enough to keep me from dying in the process, so we are hoping to take that trip about this time next year.</p><p>Climbing 40 stories twice and staying on my feet for 3.5 hours? Well....that is not a NOW thing. But it needs to be FUTURE thing, so I'm putting it out to the universe that I'm planning on being able to do it a year from now, preferably in the same size pants I'm wearing now without requiring a lie-down to pull up the zippers. </p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-31720559418122111222024-01-07T07:13:00.000-05:002024-01-07T07:13:06.504-05:00Sweet Smelling Sheets.....<p> I have, rather late in life, re-acquired the habit of making my bed every morning. On Saturday or Sunday, I put on fresh everything, so last night I climbed into soft, clean, sweet-smelling sheets. This is one of the simplest, richest blessings.</p><p>All week Facebook has been kindly reminding me of my life 2 years ago this week. Babygirl was desperately ill, and I was as far from anything like home as I've been in a long time. She is sitting with me now, looking for furniture for her room. We are both sipping coffee, and the peace and sense of home is...intense. The silence that a snowstorm brings surrounds the house. The grandkids are blessedly asleep. I have a dog at my feet, and Babygirl has one at her side. (The little Basshole is sleeping upstairs, anything but sweet smelling. She helped clean up a small spill of THC oil yesterday and has alternatively been unconscious, paranoid-high and/or vomiting &etc. There is a bath in her immediate future once she regains some coordination.)</p><p>I have so, so much to be grateful for. We didn't accidentally kill the dog last night. I have a home that can be reconfigured to fit in those who need a place. I have caring family, a fantastic workplace, and everyone I love is NOT in a hospital right now. </p><p>And sweet, clean, warm flannel sheets. </p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-15616272916390240072023-12-10T14:36:00.005-05:002023-12-10T14:38:40.278-05:00Hearing the Harps.....<p> Like many people, the last few days have had a lot of errands to run, small tasks to manage and gatherings to plan. We've had a lot of LOUD. Vigorous car conversation. Loud singing, exclamations of joy and despair, background "All I want for Christmas is YOOOUUUUUUUU" and the like. There's been some pretty loud laughter.</p><p>At one point yesterday Bean came out of the bathroom crying: "There's a MONSTER in there." Babygirl's priceless reply? "Well, stop looking in the mirror." </p><p>Many of you are aware that I am a natural introvert. I need peace and quiet to recharge, one of the reasons I tend to get up early in the morning. </p><p>By noon today I was home, so I made beef stew in the crock-pot for dinner. Then I took a look at our tree, a notable work in progress LOL. The bin of ornaments has been sitting next to my chair since Thanksgiving, entered into periodically by short people of varied tastes and heights. The grandkids are occupied upstairs, so I opted for a solitary session of finishing up the tree.</p><p>I set my phone to Celtic Harp Music and got to work.</p><p>Some music helps bring space into the soul.</p><p>We all possess layers and layers of memories. And there is nothing like a box of ornaments for a good archaeological dig through a lot of years. </p><p>My great-grandmother was a German immigrant, but since the Pickle Ornament was created by American Germans, we never heard of that. However, no tree was complete without gilded nuts and pinecones, and I have a handful of those cones to remember her by. </p><p>My grandmother loved music, and although the small set of tiny ceramic orchestra ornaments I once had have broken and disappeared, I have replaced them with brass horns and guitars along the way.</p><p>My mom loved anything, ANYTHING that would go on a Christmas tree, especially straight silver tinsel hung JUST SO. Any unwanted aging ornaments were donated to us kids to make a festive mess of the upstairs hall with. As her life narrowed with age, her last tree was a tiny thing. One of the last boxes I opened today yielded me a double handful of tiny glass balls, teddy bears, Santas and rocking horses, the last ornaments she purchased. I don't have a lot of her earlier ones, although I'm betting she glittered up a couple of those pinecones. The ornament Hospice gave her for her last Christmas is there.</p><p>My aunt and uncle donated a ton of stuff to me when they closed their store and moved local. Mercifully, I have managed to break most of it. </p><p>My angel was a give from my dad and his wife, an old-fashioned hand-crocheted-and-starched beauty. Currently Squeaker has given her a candy cane, placed on her shoulder and ready to be thrown javelin-style.</p><p>There are the obligatory and much-loved hand made kid ornaments. There is an ornament I hand made in prison to kill time on a visit there to the foster kids' mom. There is one remaining of the Three Little Pigs that Citygirl adored. Lots of coworkers have contributed. There are ornaments from many patients, including one odd little cat-on-a-pillow gifted to me in my first year in practice shortly before the patient died, a heartful of lessons learned.</p><p>Some go back to somewhat lonelier seasons when I was away from home and made do with what I had, or celebrated with fellow students and residents. I have one absolutely amazing memory of a full southern Thanksgiving dinner gifted by an attending physician for those of us stuck on call. And there was one Christmas Eve walking hand in hand with Citygirl's dad through Rockefeller Center and St Patrick's cathedral.</p><p>There remains magic in us if we take the time to let the harps play. My tree is finished, and a different kind of beautiful than it was before I added on.</p><p>DeeDee</p><p>PS Our recent visit to Rochester was a blessed non-event. All is well. Follow up in MARCH.</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-9713326597808543612023-12-03T09:33:00.010-05:002023-12-03T14:58:20.867-05:00Fairy Infestation.....<p> Once Upon A Time Citygirl was an only child. When she was about 4, I bought an Advent Calendar from LL Bean for her. It's lovely, bright colors, with 25 little compartments, about 1.5 x 3 inches. My thought was that I'd put some little trinket in there, and every few days put in a note with an activity to do. For example, the 5th door has a pair of ice skates on it, and I planned to take her ice skating that day.</p><p>Best laid plans....</p><p>By the time Citygirl opened the third door she was ABSOLUTELY CERTAIN that there was a creature called the Advent Calendar Fairy. Well. I guess the Calendar Fairy could suggest activities also....</p><p>Fast forward a few years. Add a half-a-dozen kids and some foreign exchange students. Not ONCE did anyone suggest that they had never before heard of such an incredibly specialized fairy. She came every single night for 25 days while everybody was asleep for a very LONG time. </p><p>I think there might have been 1 Fairy Free year. And there were a couple of years where the Fairy came only on weekends for visiting grandchildren.</p><p>Now, Curlygirl's little Bean is living with us (I assure you that I did not select that nickname. Talk to her Gammy!). Babygirl pulled out the Calendar and set the Fairy back to work. Today the Fairy left a Barbie toothbrush, likely to offset the damage she will likely create with the candy she frequently leaves. Squeaker will get things from the Fairy on the weekends he is here as well.</p><p>I'm glad Babygirl holds this as such a special childhood memory that she is willing to go Fairy Shopping. I am glad to see, that like I once did, she suddenly awakens after bedtime to run down and help the Fairy so Bean doesn't wake up to an empty little door. </p><p>I'm incredibly grateful that my oldest unintentionally created what has become two generations of believers in that special little being. When I see parents today doing the Elf on the Shelf, I understand why they do it, (even while I send inappropriate memes to the ones of my kids who do it LOL). We have such a little time to create magic in the little souls entrusted to us. </p><p>So our house has a Nativity, a Calendar Fairy, and Santa. I've become a believer in all of them.</p><p>DeeDee</p><p>PS Because this story isn't sweet enough....</p><p>Bean sent me a video of herself talking to the world (like she has her own YouTube channel) about the Fairy. She came down the stairs and around the corner to the Barbie toothbrush. She was incredibly pleased and excited, and told all of us that she was going to leave the Fairy one of her littlest toys so she could play.</p><p>Well. I'm speechess and a little teary-eyed. </p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com1tag:blogger.com,1999:blog-3142458187437014068.post-70142581915074620712023-11-30T19:42:00.001-05:002023-11-30T19:42:42.607-05:00Normal Sick...<p> Babygirl is slightly less than 6 months out from the transplant. At the six-month mark, we can be reasonably confident that all of the things they gave her to keep her from early rejection (you know, all but killing her immune system) are wearing off. This means that her own immune system should be up and running at its normal? Umm, very sluggish? pace. In plain English, she's not as likely to get so terribly ill from a minor illness. </p><p>To give a more subtle view of Before Six Months vs After Six Months:</p><p>Before Six Months: Don't bother getting vaccinated with anything you need lasting immunity from (COVID, shingles, tetanus) because her immune system is unlikely to remember that it ever happened. Maybe hold off on the Flu shot as well. </p><p>About 3 weeks ago we all had a cold. Of the four of us (did I mention Curlygirl and her daughter Bean live here now?) I got the sickest, missed a day of work, and was generally miserable. I still have the cough.</p><p>I've come to call these episodes the "Grandma Flu" since it seems something like this happens whenever we spend time with the Grands, especially the littles. </p><p>Four or five days ago, Bean got cold symptoms. Then Curlygirl. Then Babygirl. By Wednesday she was miserable: Cough, body aches, endless snot, chills. </p><p>Yesterday the fever came. Fever strikes fear into the hearts of those caring for immune suppressed patients. While some diseases naturally cause fevers, colds typically do not unless the patient isn't fighting hard enough by other means. Fever means you MUST be evaluated. However....fever notwithstanding, this is probably a cold. Of course, it could also be Influenza, and knowing THAT offers us an antiviral for treatment. There is a rapid test for Flu. We already did a rapid COVID test, which was negative.</p><p>Do we need the ER? I think not. I scheduled an appointment at the walk in, bugged out of work (with the work computer, of course. I can tap into the secure network there). We waited about 2 hours, and the nurse who took us back immediately sized up the situation. She came back with the Flu swab, a strep throat swab, a viral panel swab and a COVID swab and had it all ready before the provider arrived, about another half hour later.</p><p>He was clearly harried. We saw the ambulance getting loaded up while we were waiting. I know how badly that kind of sick ruins the day of the walk in provider. But still.</p><p>"Why are you here with just an ordinary cold? I mean, I know you had a transplant, but you should call your regular doctor and the nephrologist!" </p><p>Dude. We made those calls. Nephrology called us back while we were waiting for him and told us what to do about whatever of the various diagnoses they came up with, and what over-the-counter stuff was safe for her.</p><p>I let him wallow around for a few minutes. Babygirl got so intimidated that when he asked her if she had any symptoms in addition to the fever she said, "No." Lordy. I mean, not counting the cough, chills, body aches and the six gallons of snot she blew out of her head right in front of you, no, nothing.</p><p>I did my best to explain the Before Six Months vs After Six Months, as well as the overall concept of "immunocompromised." He had no way of knowing that about 2 years ago she went from "a little sick" to "almost didn't make it" in just a couple of days, but I filled him in.</p><p>To his credit, he took a step back, visibly reset his brain, and started over.</p><p>On exam her lungs sounded crappy, apparently. He didn't want to expose her to unnecessary radiation, explaining that bronchitis or pneumonia are going to get the same treatment. He asked if we had inhalers? A nebulizer? And he left the room to research which medications would be safe for her kidney. </p><p>You should be proud of me. I got through the whole thing without saying a single ducking bad word. I never even let him know what I do for a living. </p><p>On our way out, one of the receptionists hollered, "Have a good evening, Dr D!" so I guess I didn't actually need to tell him.</p><p>We stopped for dinner, and went back for the medications. She's doing a bit better today, thank you.</p><p>DeeDee</p><p>PS I ran into someone today who was working the ER yesterday. She said that at dinnertime there were 30 people in the waiting room, 20 people in the ER waiting for beds for admission, no empty rooms and overflow was full. Walk in for the win!</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-48493755043410024942023-11-23T12:19:00.003-05:002023-11-23T12:19:52.612-05:00Giving All Gratitude....<p> It's barely noon, but it has been BUSY here. Due to work and visitation schedules, we have 5 kids 4-13 here sans parents, some since Tuesday night, and some since 7:30 this morning. I've been up since 6:30 preparing a meal meant to be served at 12:30. Since we blew a circuit breaker mid-turkey roast, there might be some delay. All the kids have been helpful to some degree. One grandson learned about piecrust. A granddaughter learned the value of a final recipe check: Pumpkin pie with no sugar would not have been a hit. It took two grandkids 20 minutes to search out the spices that were needed for that pie. </p><p>I didn't peel any potatoes. Babygirl didn't need to peel any apples. For our sanity, they all went outdoors and scootered up and down the street. </p><p>I'm grateful. There are a large number of people locally who are without power due to a storm 2 days ago. There are friends going through their first Thanksgiving without loved ones (Ana's kidney donor's family among them). There are families who cannot get together. We are not all here, but we are enough. </p><p>DeeDee</p><p> </p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com1tag:blogger.com,1999:blog-3142458187437014068.post-85385098128521956862023-11-16T20:45:00.000-05:002023-11-16T20:45:50.223-05:00Medusa Under the Front Seat....<p> When was the last time you had a dream that you remembered?</p><p>It's been years for me, until last night. </p><p>I'm recovering from a cold, and I've been waking up coughing almost every night for almost a week. To be honest, I had 2 glasses of wine. I went to bed and crashed at about 7:30 PM.</p><p>Then: The Dream.</p><p>It started with me looking into a vehicle. The seats had been removed, and on the floor where the driver's seat would have been there were...snakes. A nest of about 10 pretty big snakes. They weren't particularly threatening looking, but...snakes.</p><p>Somehow, there was a little stripey kitten. And a snakebite. And then a toddler. And a snakebite. </p><p>The story unfolded all night long. I got up to go to the bathroom at least twice, and went right back into the dream. </p><p>The kitty got pretty sick. She lost her left front leg.</p><p>The toddler got sick. Apparently a fang punctured a lung, but the baby got better with a chest tube. </p><p>I have no idea what happened to the snakes. I do remember reviewing a picture I took of them with a snake expert and determining that none of them were venomous. Just so you know: There is no picture. </p><p>There was entirely nothing nightmare-ish about any of this.</p><p>When I woke up the sun was already up and it was after 6 AM. I apparently spent over 10 hours dreaming about...snakes. </p><p>What. The. Duck.</p><p>DeeDee</p><p>PS It is probably the best news in the world that I have nothing else to talk about.</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-91837263143147751472023-10-13T06:17:00.001-04:002023-10-13T06:17:06.951-04:00Quick General Update....<p> Yesterday's Rochester Run was, thankfully, uneventful. Her labs are stable, and they are again decreasing one of her transplant medications. She's been flipped from the medication that looks like bright yellow finger pain to a pill. Antivirals have been gone for few weeks.</p><p>No trip is complete without a walk, a restaurant, and music and conversation. All of it was interesting, fun, and relaxing.</p><p>Next visit: TWO months.</p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com1tag:blogger.com,1999:blog-3142458187437014068.post-65318374413859034112023-10-05T19:08:00.000-04:002023-10-05T19:08:39.747-04:00Donor Families are Everywhere....<p> Most donor families stay pretty quiet about their sacrifice. There must be donor families everywhere, given the sheer number of transplant recipients there are. We don't generally hear a lot about them, or from them. I can't begin to imagine the range of stories, tragedies, incomparable pain.</p><p>I heard one of these stories today. </p><p>In the early 1990's, the mother I met today let her asthmatic daughter go to that last swim class: The one, her daughter argued, that would prove she was a good enough swimmer to go to camp and not have to "swim with the babies." Later that night, her daughter went into anaphylactic shock. It was one of those, "We did all we could do, but..." moments. No one had any idea what happened. Chlorine? Mold? Her mom will never know. </p><p>Her heart and lungs were damaged by the anaphylaxis. Her family, in what was certainly the worst moment of their lives, donated her kidneys, liver and pancreas.</p><p>Not long after, the patient's mom saw a news article about a man who'd received a kidney from a very young donor. She connected the dots, and she learned his story. He was a young adult with 2 kids. His kidney failure was lifestyle driven. To get on the transplant list, he had to get clean, stop smoking, and turn his life around. When he learned the transplant donor was a child, he changed EVERYTHING. He became a good and consistent father to his small children. He never went back to old habits. He became a better person. </p><p>The donor's mom finds comfort in this. The donor's little brother, on the other hand, doesn't want to hear any of it. It angers him, somehow. He was pre-kindergarten when everything happened. He and his sister were about as different in age as my little brother and me. I can imagine, had I died young, that his life would have been radically different. I was his big sister. At those ages, despite the age difference, we were important to each other in ways that we didn't understand until years later. I can't imagine how either of us would be without the the other. </p><p>Babygirl's life has been saved, twice over, by deceased donors. The price their families have paid for that incredible, unimaginable, anguishing gift beggars imagination.</p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-24590919998466663522023-09-10T08:15:00.000-04:002023-09-10T08:15:12.145-04:00When the Power Goes.....<p> We had an absolutely lovely Beach Week. Babygirl and I managed far over 10,000 steps daily, typically because we were willing to walk a lot in search of the Bacon-topped Hot Donut or the Savory Crepe. I'm not sure that we got any healthier because of the walking when I look at it in those terms LOL. </p><p>While we were away, our little city had some exciting weather. Central NY State does not typically see tornadoes. The last documented tornado in our city was in 1998, affecting less than 5 homes if I recall correctly. </p><p>I haven't seen confirmation that what happened in our neighborhood was a tornado, although quite a few were documented over a several-county area that day. But there is one block of one street 2 blocks from our house that was substantially damaged. There is a lot of damage across the river from us as well. The power was out for about 22 hours. The only damage at home was that our porch umbrella snapped off its support pole.</p><p>However. </p><p>We had to ditch the entire contents of our fridge and freezer. So while Babygirl unpacked all of the beach things, I unloaded about 60 pounds of food and put it in the trash. This included the things we would have used to make our dinner last night and breakfast this morning. Were there things in the freezer that might have been salvageable? We had no way of knowing what was "refrozen" vs what was "not thawed out in the first place." The popsicles were two dimensional, clearly refrozen. </p><p>The first rule of food safety for transplant patients is: "When in doubt, throw it out." Frankly, I didn't have a lot of doubt about it, but I really felt sad throwing out steak and scallops. And bacon. </p><p>Despite a 5+ hour drive home, and the time spent packing and loading before we left, PLUS the fridge clean-out, I went to Aldi to restock. We still have some things we need that we typically find elsewhere, but nothing urgent. </p><p>And here is the MASSIVE blessing of my life:</p><p>Despite a tough year emotionally and financially, I have the wherewithall to have a lovely vacation in a beautiful place, with enough money and energy left over to fully replace what very little we lost. </p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-87681670431190430262023-09-07T21:39:00.003-04:002023-09-07T21:39:35.352-04:00Loosening.....<p> Babygirl and I are at the beach this week. Two of my very best friends have been here as well. There has been conversation. Crying. Laughing. Storytelling. Remembering.</p><p>Babygirl has been coming to this beach town since she was 3. She potty trained here. She learned to swim in the community pool. She ran and played with her cousins and sisters. With the exception of 2020 (Covid) and 2022 (dialysis) we have been here.</p><p>This week is "off season." It's delightfully quiet and un-crowded. But there are no lifeguards.</p><p>The ocean has been...variable. This morning was full of crashing waves. There were riptide warnings for the first couple of days due to offshore hurricane activity. The weather has been entirely lovely, if hot.</p><p>We have been in and out of the water. Each of the 3 of us who like the ocean has had a solid "tumble" of the kind that gets your attention but makes you laugh. I was in the water with Babygirl early this afternoon, but the look of the pre-dinner waves made me uncomfortable. I can generally get in, but it's getting harder for me to get out.</p><p>I got caught in a riptide once. It was one of the most frightening experiences I've ever had. There was a moment when I was contemplating how much it might hurt to breathe in salt water, and the simultaneous realization that I might not have a choice.</p><p>Babygirl looked things over and went in. I sat on shore, letting the ebb and flow of the water push me around while I watched her. Wanting to call her in but realizing I had no good reason to do so. Wanting to protect her. Wanting.....</p><p>Like it or not she is a full grown woman. She is not careless of herself. She is fully capable of taking control of her own choices and safety. She has survived more "riptides" in her life than I ever will. </p><p>It took far too long for my observation of her to change from the quality of Mom-Protecting-Toddler to Mom-Relaxing. I had to consciously loosen my hold. Loosen my muscles. Loosen my apron strings. Loosen my heart. </p><p>Everyone who knows me well knows that I can hold more than one thing at a time in different "compartments." The "worry about Babygirl" compartment has been quite busy for quite some time now. I'm far overdue to recognize that she is already carrying her own weight here, and because of that I don't have to carry so much. Like the tide, however. my ability to loosen my heartstrings will ebb and flow. </p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-1902203900136206832023-08-13T06:21:00.000-04:002023-08-13T06:21:00.149-04:00Maybe Hitting the Nadir....<p> Last week Babygirl's creatinine dropped to 1.2ish. Now it's up to 1.3something. </p><p>Historically, Babygirl hasn't paid a lot of attention to numbers. Up until the initial transplant failed, she chose the "ignorance is bliss" approach and she didn't fuss about small changes.</p><p>While on dialysis, she became more aware of some significant consequences of her lab results: Phosphorus will lead to calcification of your heart and lungs. She was VERY religious about taking her phosphate binders and avoiding phosphorus in her diet. She became aware of the physical symptoms of elevated potassium levels, and adjusted things accordingly. She learned the difference between hemoglobin (anemia) and hemoglobin A1c (diabetes). </p><p>With this new transplant, she is Adulting. (Example: It is currently 6 AM and she is up taking her antibiotic on an every 6 hour schedule, using her own non-mom alarm system.) I was, however, unaware of how tuned in she was to the kidney function numbers this time. An in-the-car conversation about results made me aware that she is concerned about the upward bump.</p><p>Well. This kidney has had a hard ride. Damaged in whatever catastrophe killed the donor, traveling God alone knows how far, on ice for 27 hours and waking up in an entirely new body...</p><p>We discussed expectations. This kidney may never work as well as the other kidney did. However, lots of people live with low-level renal insufficiency for a very long time. I told her about a colleague who had kidney cancer as a young child (extremely rare!) who has had a creatinine of 2 for the past 50 years. We talked about the fact that the doctors knew in advance that this kidney might not recover fully (or even at all), but felt the risk was worth it because it was a perfect match, far less likely to suffer rejection in the long haul. The only back up plan was to continue dialysis. </p><p>She has a better understanding of where she is right now. The new kidney may not recover more than it has, so the creatinine may quietly bounce from 1.2 - ? for the next little while until, like the other kidney, it settles on a generally stable number. It's just that the other kidney rested at 0.9 which was, certainly, a happier number.</p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-33860126696497833762023-07-28T20:49:00.000-04:002023-07-28T20:49:28.153-04:00The Dialysis Aftermath....<p> Babygirl's last home dialysis was the Thursday before the transplant, June 8. One of the most exciting things about getting a transplant is saying goodbye to all of that. </p><p>Except....all of the stuff is still here. The machine, the recliner, and thousands of pieces of miscellaneous supplies: IV bags of saline, emergency supplies of dialysate. Needles, syringes, blood tubes. Dialysis machine cartridges. Bandages. Chux. Bottles of blood thinners. IV tubing. The medical iPad. A centrifuge. This stuff was taking up 3 closets, and all the space under the spare bedroom bed, and more besides.</p><p>The dialysis team is coming to pick up the machine. Maybe the centrifuge. Probably the iPad. But all the rest, including the massive ugly hospital-style recliner? They were ALL "Prescription Items" and are ours to keep. But tell me what the living heck are we supposed to do with anything but the bandaids? </p><p>I woke up this morning feeling fine, but within an hour I was tossing my breakfast, so I called in sick. In between bouts of nausea, I helped Babygirl start dealing with it all. Eight extra large trash bags land dozens of broken-down boxes later, we (mostly she, honestly) had the vast majority of the things that we can dispose of, disposed of. We quite literally filled our oversized bathtub several times over with bags full of one type of fluid or another. We had to cut each one open, drain it, and stuff the remains into one of the endless trash bags. Decisions about whether huge packages of wrapped, capped needles and syringes needed to go into sharps containers or direct to trash. </p><p>It is so incredibly wasteful These are supplies that are sealed in impossible to open packaging in sealed boxes with labels attached. But they can't be returned so someone else can use them. I am certain that we sent thousands of dollars down the literal drain. </p><p>We had to run out for extra trash bags. And since Babygirl's doctors STILL have her on a 10-pound weight restriction (over what for her were some pretty strenuous objections), I got a work out hauling the bags and boxes down the stairs and out to the side of the house to await trash night. It's an impressive pile. </p><p>As for Babygirl herself, she is doing well. She still tires faster than I'd like, but much less so than before the transplant. Her creatinine is down to 1.2, which is gradually approaching normal. She is still significantly anemic. Her acid levels are creeping up to uncomfortably high levels, and her blood pressure is high. All of these things are manageable, but are definitely keeping her from moving from twice-weekly labs to weekly ones. We remain on biweekly visits to Rochester.</p><p>I spent some time today trying to recall how all this was handled last time. I don't remember what happened to what must have been a similar amount of unused stuff, but I don't remember getting rid of it all. I do remember taking biweekly trips to Philadelphia for what seemed like a very long time, but without so much blood work in between. Different team. Different kidney. Different approach. Different life. </p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-91692029406517297722023-07-20T06:59:00.000-04:002023-07-20T06:59:16.004-04:00The "Q" Days....<p> We in the medical world superstitiously HATE hearing someone say the "Q" word. When things are peaceful in the ER, and the ICU is miraculously crisis-free, and there hasn't been a sleep-interrupting ring of the phone during an on-call shift, someone innocently saying, "Wow! It's Quiet in here!" will get a universal round of groans and weeping. We all know that mentioning that word will instantly trigger some kind of chaos and effectively end the Q time.</p><p>So I hate to say that it's been quiet, medically. Babygirl's labs have been slowly but steadily improving. Her general sense of well-being has been steady and her endurance gradually increasing. Her last creatinine was 1.3, continuing a long, gradual downward trend (I just read an old blog post talking about needing a kidney biopsy to rule out rejection because her creatinine had risen to 1.4, but we are playing a different game here).</p><p>I've attended yoga twice this week. I had a massage Sunday after returning from the mission trip. Self care is adequate but not spectacular. I'm getting there.</p><p>So far Babygirl hasn't been up to going hiking, but she is walking dogs here in the neighborhood. </p><p>I'll take the Q, thanks.</p><p>DeeDee</p><p><br /></p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com1tag:blogger.com,1999:blog-3142458187437014068.post-80880217012546700562023-07-06T18:02:00.000-04:002023-07-06T18:02:45.939-04:00Down to Once a Week....<p> I can't clearly remember how long we were on a twice weekly follow-up schedule following Babygirl's first transplant. I know we stayed in Philly for a bit, and then Hubby and I took turns, one day a week each, to get her there. </p><p>We are done with twice weekly trips now, and it feels sooner than last time. I'm not saying it is at all a bad thing! She still does blood work twice a week, once locally and once in Rochester. That schedule is holding for next week as well.</p><p>Currently the new kidney appears to be doing quite well. Creatinine on Monday was 1.56, 1.52 today. As long as each is lower than the last, we know the kidney is still recovering. Babygirl's last transplant gave her a completely normal creatinine of 0.8 within 48 hours of installation, so this is a very different ride, but... it's reassuring.</p><p>It's reassuring enough that I'm packing to leave town for a week on Saturday. (The team was working on a backup plan in case I couldn't make it.) The mission trip is part of my heart and soul, and two of my Grandboys are going along. I spent most of the 4th sorting tools, shopping with the boys, and generally prepping to get it all on the road. After Babygirl and I arrived home today I got the tools loaded in the trunk. I'm still working on bedding for 3 and clothing for me. </p><p>While I am gone my beloved sister-in-law is coming to spend the week and to make the lab and Rochester runs. </p><p>Currently I am sitting in my damp bathing suit, which I will leave on while I finish things up. I'm very likely to need to get back into the pool again shortly LOL.</p><p>DeeDee</p><p><br /></p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-55256753099975433162023-06-29T21:07:00.000-04:002023-06-29T21:07:32.515-04:00High-level Tired....<p> We left this morning at 6 AM for our second trip to Rochester this week. Her appointment was at 11, labs to be done first (which takes about 1.5 hours due to staffing shortages). Babygirl's bladder has not had very much to do for the last 18 months, so now that she is producing large amounts of urine, she has to pee every hour until her bladder stretches out some. Taking all of that together, allowing 3 hours for travel and breaks and granting additional in case of more than usual glitches in the lab, we planned to arrive around 9. Monday's appointment was at 10. We went the night before and stayed in a hotel for that one.</p><p>Travel was pretty efficient and the lab fairly timely, so we had time to take a (smoky!) walk in the big cemetery across from the hospital. We spotted a pretty good sized pyramid in the distance (I assume a mausoleum) so that's our target for the next walk. </p><p>The visit went quickly. The doctor sent a message to urology to tell them to cancel the (to him and us) unnecessary extra appointment in 2 weeks. Why do they need to see her twice in 3 days? He discontinued her water pills since she has lost all but 4 of the 60 pounds of extra fluid the transplant gave her. He increased an antiviral since her kidney is functioning well enough to remove it. </p><p>We got her most recent lab results: Anemia is improving (showing good long-term function of the kidney) and creatinine is down to 1.7 (from 7 or 8 after the kidney went in). Yippee! The kidney, while not functioning perfectly, is officially awake. </p><p>We did some exploration of the Erie Canal on the way home, and had dinner at all-you-can-eat crab night at the local casino. </p><p>We arrived home at 8. </p><p>I am too old for 14 hours of travel in one day. Even if it's a GOOD day.</p><p>DeeDee</p><p><br /></p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-41441670012740126712023-06-26T09:26:00.000-04:002023-06-26T09:26:38.491-04:00Weird Stuff Part II....<p>I should have waited one more day for the last post.</p><p>Last night at 11:30, long after Babygirl and I had gone to bed, my cell rang from a PA number. Since I have family in PA, I picked up.</p><p>Random Man With Deep Southern Accent: "So, Ma'am, are you still interested in buying the snapping turtle? It's a GREAT turtle. It does tricks and it even barks!" </p><p>Me: "You have the wrong number," followed by me hanging up.</p><p>RMWDSA: Calls back. </p><p>Me: "You have the wrong number."</p><p>RMWDSA: "Please text me." </p><p>Me: "No." and I hang up. </p><p>RMWDSA: Calls back AGAIN. "Ma'am, about the turtle...."</p><p>Me: "I am a LONG way from home and am taking my kid to the hospital in the morning. If you wake me up ONE MORE TIME I am coming through the phone to ducking KILL you."</p><p>RMWDSA: "OH! Sorry, Ma'am. Yes, Ma'am!" Hangs up.</p><p>I mean.....I can't....what?</p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-50973656852213946592023-06-25T20:27:00.003-04:002023-06-25T20:27:49.597-04:00The Weird Little Stuff......<p> We are back in Rochester for Babygirl's recheck tomorrow morning. I gave some thought to this process on the way.</p><p>During any journey, be it medical, educational or recreational, things happen. The are rarely germane to the process in any way, and get left out of the main narrative. Here are a few examples:</p><p>On our (rapid paced!) way up here to receive the transplant, we hit a 30 minute traffic jam. There was no immediate evidence of construction or police, and we just crawled along with the crowd. When we finally began to arrive at the problem, the first thing I saw was skid marks leading to a big Penske rental truck, cocked at an angle in the left lane. Getting closer, I could see evidence that a fire had been put out, Passing the truck, we came to a tow truck that had already loaded the cremated remains of a crumpled car. If the people who were in there didn't get out quickly, there's no hope that anyone in that vehicle survived. It was not the most hopeful thing to pass when you are taking your kid for major surgery.</p><p>In completely the opposite spirit: On our way here today we passed a small pickup truck. Bumper sticker read, "I'm really happy with this tiny truck because I have an ENORMOUS penis." I laughed so hard it's lucky I didn't crash.</p><p>I had one sleep deprived moment when I asked one of her doctors some question that was breathtakingly stupid. They patient explained whatever it was without actually saying WhatTheDuck is wrong with this woman. </p><p>Clearly, there are a lot of things that just....happen. But the best, oddest, WhatTheEverlivingDUCK moment was when one of kidney surgeons was discussing maintaining a good blood pressure, as Babygirl's was running low and he wanted higher pressure to keep good blood flow to the transplant. </p><p>"If your pressure is too low, I want you to get some French fries. NO, don't eat them - you are diabetic. Just lick the salt off of all of them." I am absolutely sure he meant it. </p><p>You canNOT make this sort of thing up. </p><p>The difference between surgeons and medical people? Transplant nephrology said, "If you aren't lightheaded your blood pressure numbers are irrelevant. If you are perfusing your brain, you are perfusing the kidney." He stopped the medications that were there to push her pressure up. </p><p>Thank God for the ones with common sense.</p><p>DeeDee</p><p><br /></p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-28242244873354925072023-06-23T17:57:00.000-04:002023-06-23T17:57:23.679-04:00Adulting is a PIB....<p> When the kids were little, before I took up cussing like it was a full-time job, I used to call them PIBs: Pains in the Butt. It's more polite than the commoner PITA. </p><p>I spent nearly ALL of today doing adult PIB stuff. </p><p>I began with a list of 7 phone calls I needed to make. I think I made 15 of them and have one left. </p><p>We need a place to stay Sunday night for Babygirl's Monday appointment. I needed to try to rearrange some of her urology appointments so we don't have to make 3 trips to Rochester in one week instead of just 2. I had to check in with Employee Health so that I could return to work as scheduled. Clear up insurance info on past due medical bills. You get the idea.</p><p>I also closed the bank account that I opened when I was 18. Since about a dozen things were being paid directly out of this account, I had to make phone calls/website visits for all of these as well.</p><p>Almost everything has been handled. A couple of things are works in progress. And to add to it all I kept GETTING calls. One of those calls was extremely useful, however.</p><p>Babygirl's Medicare plan (United Healthcare - I can't say enough good about this in her situation) has a transplant coordinator. She called to see how Babygirl was doing since the transplant. And the readmission. How is she doing monitoring her blood sugar? How is she managing her medications? Side effects if any? </p><p>Then: "Are there any financial challenges due to the transplant?" "There would be if she had to pay for it herself."</p><p>It turns out she qualifies for up to $125/day for travel and expenses. This will likely backdate to her May appointment, and would be enough to get back all of her (my) hotel and mileage expenses. This would be a blessing for certain. We need to get prior authorization from her Rochester doctors, which will most likely be entirely handled by Rochester's transplant coordinator. </p><p>I'm a little excited that all my Adulting PIB crap may have some valuable yield. </p><p>DeeDee</p><p><br /></p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-4733808828810802512023-06-23T04:36:00.003-04:002023-06-23T04:36:51.263-04:00The Gradual Wake-up......<p>Yesterday's follow up visit in Rochester was LONG. The appointment was at 10:30, and she was to have labs before she went. We left the house at 6 AM, and arrived before 9. The plan was to get the labs done, and then go for breakfast.</p><p>She was in the lab for over an hour. This is, I hear, typical. For some reason, hospitals lost more phlebotomists than any other group of people when vaccine mandates were placed. None of us have recovered to pre-pandemic blood-draw capabilities, but DANG. We snagged some (perfectly terrible) breakfast sandwiches from the cafeteria and bolted upstairs for her appointment.</p><p>They were running behind, in large part to the lab delay. Some patients had given up on the lab and come upstairs because they didn't want to be late for their appointments, which meant that the nurses had to draw their blood, adding to the slowdown. </p><p>We'd met the doc last year when she got on the transplant list. Babygirl said, "I forgot what a....presence he is." He is, as they say, "a lot," but adorable, communicative, and upbeat. He was overwhelmingly enthusiastic about the new kidney. Babygirl is making more that 3L of urine a day, and it is finally completely clear. Her weight has dropped from 189 to 166 (2 gallons down, 3 to go!). Her potassium and phosphorus levels are normal: "Eat more of everything we told you not to eat or those levels will go too LOW." He remains concerned about her blood sugar and wants her to watch it more closely.</p><p>But the most exciting for me is that her creatinine has dropped from over 6 to 3.5. Normal is under 1, so we aren't there yet, but this was a massive change compared to the previous gradual creep toward normal. Transplant nephrology plans to notify dialysis nephrology, and let them know that they can come and take all of her dialysis stuff back. Babygirl is very excited about regaining some space!</p><p>The transplant pharmacist went over all of her medications in detail. One has been discontinued, and another decreased. Next appointment is Monday. </p><p>We arrived home at 5 PM. Thankfully, my SIL had come up from Philly and did all of the driving. I'm exhausted but I can't sleep right at the moment. I have a list of 8 phone calls I need to make today to cover things like paid leave, appointment rescheduling, and home financial stuff. It's clearly too early for that, so I'm going back to bed. </p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-33930035461009399602023-06-22T17:37:00.001-04:002023-06-22T17:37:43.340-04:00Elopement.....<p> Babygirl was discharged Tuesday. Things continued to be stable, or gradually improving. </p><p>The docs came in and told us this. I told them, "I live three hours away and a friend is coming to pick us up. It will take them 3 hours to get here. Should I call them?" "Sure."</p><p>Nearly 3 hours later my friend was about an hour away, and we'd seen no hint of discharge paperwork, IV removal, catheter supplies etc. I asked for an update from the nurse, and she said that the discharge orders hadn't been placed yet.</p><p>I've waited a lot of hours in my life for discharge. The record was 15 hours once at CHOP. Last week here it was 7 hours. I've got somebody doing the MASSIVE favor of driving a total of 6 hours so we can get home. </p><p>"We were told 3 hours. So when my friend gets here, this is what is going to happen: We are going to LEAVE. With or without discharge papers. I know how to take an IV out myself, and I can get supplies from my own hospital if it comes to that."</p><p>Well. That made her, verklempt. She is the person who will take the heat if we elope, and it isn't her fault at all. But DANG, this is our second hospital stay in less than a week and I am DONE. She asked if we had been told a specific time for discharge, and I mentioned the 3 hour story as above. "You really should have ASKED for a time." "Your doctors should be able to effectively communicate a time."</p><p>She scurried. She pushed cajoled, and bugged people. She made sure we had the supplies we need so that if we walked we wouldn't go unprepared. </p><p>My friend arrived, and the nurse was still working on things, and said, "But it's dangerous to leave without instructions!" Well, considering we got 12 pages of instructions literally read to us line by line only 3 days ago and nothing has changed except the catheter, I think we're covered. About 20 minutes later she got the paperwork, Babygirl signed it, and we asked for the wheelchair that we'd been using to Babygirl from point A-B. "There's a meeting in that room. We have to wait for transportation." </p><p>The hell we do. I asked Babygirl if she thought she could walk it. She said yes. I picked up all of our stuff and we walked out unnoticed. </p><p>We made it to the discharge area, unnoticed. And ran away to home.</p><p>A HUGE thanks for such excellent friends. </p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com2tag:blogger.com,1999:blog-3142458187437014068.post-49890459019483325532023-06-19T16:57:00.000-04:002023-06-19T16:57:05.456-04:00Don't Use the "Q" Word....<p> After yesterday's chaos, today was a calm day. I mean, I had a Reuben for breakfast at 10:30 AM. </p><p>We don't know much more now than we did this morning. Things are not getting worse, and may be slowly improving. Labs, generally are better. The morning ultrasounds, not different enough to lead to any procedures today but requiring follow up. My brother asked if the kidney was "woked up" yet. I said it's not, but it appears to be sleepwalking. We'll take it as progress for the moment. </p><p>No one has really spoken about discharging Babygirl from the hospital yet except to say that she may need to keep the catheter in for another week at minimum. Even that was nebulous, so we are just in wait-and-see mode. </p><p>Personally, I think they stopped the bladder irrigation too soon, and discharged her when she was still less than stable. But nobody died, and except for a few hours suffering due to the overfull bladder (which we can both be salty about for sure), she has not lost any ground as a result. </p><p>We got outdoors today into the sunshine, which made Babygirl very happy. She did a lot of walking, and I pushed the wheelchair a few hundred extra steps. She has been sound asleep for over an hour, and I confess I snoozed a bit as well.</p><p>Those of us in the medical word are deeply superstitious about using the word "Quiet." But that is the best description of the day that I can give, and we needed one of those.</p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com1tag:blogger.com,1999:blog-3142458187437014068.post-57438305208863491052023-06-18T23:09:00.000-04:002023-06-18T23:09:29.672-04:00So, What the Duck Just Happened.....<p> It's almost 11 PM, and my day started around 5 AM and has, thus far, included 2 meals from McDonald's, 2 ERs, one 3 hour ambulance ride, a PBJ, a most delightful conversation with a yoga instructor/Uber driver, and being known by name on sight to the hotel front desk staff.</p><p>What do we know so far? Other than acknowledging that having a catheter feels better than an overfilled bladder, not much.</p><p>Babygirl had a urinary catheter in place from last Saturday morning until about 12:01 AM Friday. That catheter had to be changed, and was frequently manipulated during multiple irrigations. From the time of the catheter removal until about midnight last night, (24 hours) Babygirl was voiding reassuringly clear urine, but not in large amounts. </p><p>Then there was the clot. And then the urinary retention. </p><p>What we don't know is whether or not the inability to pee was due to blockage caused by additional clots, or whether it was due to spasm of the urethral sphincter as a result of having a catheter for 6 days. All of the urine today has been bloody (from Hawaiian punch to pink lemonade) but with no clots. However, the AMOUNT of urine she is making is excellent - more than 2 1/2 liters today, actually more than she drank for the day. </p><p>Her blood work doesn't look bad. She is gaining ground on the anemia. Her potassium is normal. Her kidney function is stable, maybe a little better, but it still sucks. </p><p>Additionally, her weight continues to rise due to water retention. We're up 55 pounds in just over a week. Nephrology will be seeing her tonight and reassessing the plan for this, I guess. </p><p>For right now, she is admitted. She told me that she is going to be angry with me if I show up at 8 AM. "Get some SLEEP, mom!"</p><p>That is the plan. </p><p>DeeDee</p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com0tag:blogger.com,1999:blog-3142458187437014068.post-71555867859463013312023-06-18T08:07:00.001-04:002023-06-18T08:08:30.939-04:00The Merry-go-round.......<p> "Mom. Mom, I think I need to go to the hospital."</p><p>My brother drove up from Philly yesterday to help out. So far he has put a ceiling light fixture back together, and shared 3 bottles of wine with me. We had a significant sibling therapy session until about 2 AM. I gotta stop drinking. It makes ducking medical sh.....stuff happen, apparently.</p><p>Babygirl was doing well enough yesterday. She walked with me through the Farmers' Market, and I pushed her in a wheelchair cart through Aldi. After a long nap, we went to Walmart where she practiced driving a store scooter. </p><p>Around midnight, she called me to the bathroom to look a clot she'd passed. It was 2-3 cm x 1 cm, but her urine otherwise looked normal. "We just have to keep an eye on it."</p><p>At 5:30 she woke me up and told me that couldn't void at all, and she was in pain. Enough pain to make her cry. I'd like to point out that this has happened only once before, due to nerve pain after a spinal tap. Her pain levels in the hospital with a fresh 9" incision she rated as 5/10. This she gave 7-8/10. We called the Transplant Team as we were driving to the ER. They agreed that local assessment was appropriate. </p><p>Currently she is parked at Wilson, with a catheter back in place. Her bladder drained almost 800 cc, and she feels much better. I'm across the street at McDonald's getting breakfast and coffee, waiting for labs. </p><p>I would very much like to get off of this ride.</p><p>DeeDee </p>DeeDeehttp://www.blogger.com/profile/03189922053527555943noreply@blogger.com2