Atypically Recovering: On My Own No Matter How This Goes

Tag: chronic kidney disease

  • Am I Fighting A Battle I Can’t Win? The Longterm Effects of Chemo for APL on Weight

    Patient receiving Gemcitabine chemotherapy beside a daily medication organizer
    Image- generated by WordPress.

    Prior to being diagnosed with acute promyelocytic leukemia in 2010, and going through daily chemo of one form or another for roughly 20 months, I was tolerating my weight, even though it was more than I wanted to weigh. I could stand to be in my own body. The initial chemo was ‘skinny’ chemo (Ara-C and daunorubicin), resulting in a weight loss rate of 5 pounds/week. Then I started arsenic trioxide infusions (50 total in two 25-dose cycles), methotrexate, M6-mercaptopurine, and had been on ATRA as soon as I was admitted to the hospital.

    I only found out I had leukemia from doing annual blood work. Many people are diagnosed at autopsy since the disease doesn’t have any ‘red flag’ symptoms. The lifespan from onset of the disease to death if treatment isn’t started is at best 30 days. I got to the hospital at week 3 1/2 after seeing a hematologist who wanted to schedule a bone marrow biopsy for the following week. I didn’t make it that long. Three days after the appointment, I was in the ER with significant shortness of breath, likely due to severe anemia. I know of an 11 year old boy (nephew of a coworker) and a local news anchor who both died within 1-2 days after getting medical help for vague symptoms, from brain bleeds caused by the reduction in clotting cells (platelets) from the leukemia. I already had the beginning signs of clotting dysfunction with many, many purple ‘dots’ on my legs (purpura), and the bottom of my right heel formed a black ‘scab’ under the skin that fell off.

    Google AI re: lifespan of untreated APL-

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    Once I stopped chemo, my total weight gain was about 55 pounds, and my oncologist wanted the weight gone yesterday. I told him about my history of eating disorders, and he told me to quit eating fruit (not sure about the correlation, but it seemed odd that the phytochemicals in fruit were ignored). He threatened to refer me to a bariatric surgeon. I was so distraught about his lack of nutrition and eating disorder knowledge that I changed to a different oncologist, which helped immensely. The crying for days ahead of appointments with the other doctor were too much. He’d done a great job with the leukemia (remission in 3 weeks, and considered cured in 2016), but the post-chemo follow-ups were really bad. For someone who has always been haunted by childhood weight demands (from mom) and an anorexia diagnosis at age 17, it was brutal to be so pressured to drop weight when I was just trying to recover from surviving the friggin’ leukemia.

    So, have I been blaming myself for something that I can’t control ? I have always been one to do what I have to do in order to manage medical issues, and this has been a nightmare. I tried NutriSystem, and in general only ate one meal throughout the day (decades-long pattern), as well as relapsing with the active restriction in 2021- five years after I was considered cured of the APL.

    This is what Google AI said…

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    Could it be that the weight gain isn’t my fault as I’d been led to believe? I’ve blamed myself for weight issues for decades. Unless I starve, the weight doesn’t budge, and if I do lose any weight, I always goes back to the same weight, which is so much more than is healthy. Starving also puts me into acute renal failure (twice in the past 5 years). The weight is also physically uncomfortable, and adds to the degeneration of my joints and spine just from the load bearing aspect. I feel if I give myself a break, I’m “excusing” the weight gain, and while today’s Google mining suggests otherwise, it’s still something that torments me. I feel too disgusting to show my face. I haven’t been to a restaurant for 9 years, and other than that haven’t eaten around anyone more than 2-3 times in the last 7-8 years out of shame that I look like I don’t deserve to eat.

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    At least this gives me something to think about regarding how hard I beat myself up over my weight. I’m not sure I’ll ever accept my body completely, but even a bit of ‘tolerance’ would help. It’s also about finding a way to manage enough food to protect my kidneys since cutting carbs too much triggers the acute renal failure/acute kidney injury. But I don’t want this to turn into an excuse to eat more. I’m supposed to be getting in more calories than I am (never met the target range), and that freaks me out. Every few weeks, I get close for a day, but then back off. On the other hand, if I can internalize that the pathophysiology of APL treatment causes weight changes, maybe the reduced stress of feeling I have to prove I’m doing something about my weight will decrease cortisol.

    There is a correlation between the battering my body took from the APL and the intensive chemotherapy regimen I was given and my inability to lose weight gained during chemo. I need to figure out how to get that to sink in, and come up with a way to live with something that is a result of fixing another thing that tried to kill me. Immediate thought- I’m too ungrateful for just being ‘alive’ (kind of a technicality some days when everything is acting up). Now, I’ll kick myself for that.

  • Slipping with fluid intake

    Image: Online search (not my photo)

    After 2 months without the NG tube for supplemental fluids, I’m coming to a point where I have to decide how long I can coast with the bare minimum fluid intake for my kidneys. There have only been a handful of days that I’ve gotten 2 liters in… most days it’s about 1500-1700 cc, so the bare minimum for where I’m at with stage 3b CKD (chronic kidney disease). To say I’m disappointed is a gross understatement. I want to be rid of the tube for good, and thought that I’d been making some progress, but truth is I have not.

    SO, I’m not sure how to do this for a permanent ‘fix’. My thoughts are that if I continue to drink the 1500-1700 (or as much as I can get down- more if possible), I could just use the tube to supplement the balance, and gradually increase what I drink in smaller increments, so I don’t end up with more reflux and bloating. This also impacts food intake, but that will always be second to fluids in terms of importance. I also have been struggling with electrolytes some days (not all). I’m not supposed to limit sodium a lot, but if I notice more swelling in my ankles and feet, I am supposed to cut back some. But I still need ‘enough’, which for me, to avoid severe muscle cramping, that’s between 2500 and 3000 mg of sodium.

    It’s been so nice not to be hooked up to a bag of fluids for hours each day, and to just be able to get up and do things without having to disconnect everything. It’s been great not having something hanging out of my face, making me look more ‘different’. It’s been great not feeling the tube. I don’t mind drinking water (usually with a bit of lime juice powder), and have tried various other things like sparkling unsweetened water, Spindrift, and the only flavor of Ollipop that I like (Crisp Apple). But volume tolerance is still a significant issue. That’s been the entire purpose of the tube- to bypass the volume issue by getting fluids in more slowly. And it worked, but who wants some stupid tube, or to be hooked up to something for 6-8 hours a day?

    It’s been something that I’ve been thinking about for several weeks, and I can’t wait a lot longer to make a decision. I can’t risk more kidney damage. I won’t do dialysis, so I have to protect what I have. And yet, I don’t want the tube. But I also have to be logical. I’m discouraged. I know I’ve given this a fair trial period, and now, I need to do what is safer, but feels like failure. I’m enough of a freak with food, and having the tube just feels like more ‘defectiveness’. But my kidneys… if I know that I didn’t do something and the CKD gets worse, that would be really hard to deal with, knowing I had a way to help prevent it, but didn’t.

    I’ve been having more frequent headaches with nausea, which could also be a fluid/electrolyte thing. I’m also exhausted. My blood pressure and heart rate are doing well ‘enough’, so that’s good- I haven’t entered dangerous territory again, and I need to do something before I get back to that point. My nursing knowledge needs to take the lead on this, and not my fear of fluid weight and not wanting to ‘fail’ this. Two months is the longest I’ve gone without the NG since July of 2022. I tried, and did better than I have with multiple previous attempts, but it’s not enough of a buffer to keep my kidneys protected. Bare minimums aren’t enough for days that I tolerate less by mouth. I know what I have to do. I just hate that I’m not doing better without it.

  • NG Has Been Out For 3 Weeks !!

    Three weeks ago, I removed the NG tube that has been in my nose for the last 4 years. It’s been a little nerve-wracking because I don’t do well with ‘volume’, so eating AND drinking without the tube for back-up was a bit daunting, but I wanted to try again. I’ve done this about 10 times in the last 4 years, and never lasted longer than a week. The reason I had it in at all started with a bladder infection that I had to have enough fluids on board to fight, and then it got ‘stuck’ as I started eating again. I just couldn’t handle the bloating of food and fluids. I was a RN for 35 years, working for 20- DO NOT try to insert your own tubes if you haven’t been trained to do so, or know how to maintain them (changing them from one nostril to the other at regular intervals, checking placement, etc).  Lack of training could kill you.

    With chronic kidney disease (CKD), fluid intake is critical to avoid any further decline in functioning. Most doctors have assumed that I have kidney disease because of being diabetic, but my most recent nephrologist (and med school professor) told me that without proteinuria (protein in urine) that I’ve never had, and with a 5 decade history of food and fluid restriction, I’ve damaged my kidneys by not giving them enough fluid (and therefore blood pressure) to allow them to work properly. That was hard to hear, but also necessary. My blood sugars have been well controlled after I was diagnosed with diabetes in 1995, so it was weird to me that my kidneys had fried when I’d been so careful to keep my A1C (average of 3 months of blood sugars) well below 7, and usually below 6 until I had leukemia and the chemo hell of that that was a blood sugar nightmare. But even after that I was able to stay in the low 6s and sometimes upper 5s.  It was like I’d been “good” for nothing, but my nephrologist told me that it wasn’t because of diabetes. I’d basically been starving my kidneys of fluid as I restricted what I ate, and without much of a thirst mechanism, didn’t drink enough… for decades. My kidneys are at about %35 functioning now. At my age, they should be at least %60 (function normally declines somewhat with age). 

    Anyway, I’ve been doing OK. I’m not up to 2 liters/day, but have consistently gotten in at least 1600 cc/day, which is at the low end of acceptable. I haven’t been able to do that in four years, so I’m pleased, but also know I have more work to do. This has impacted how much I can eat, though I’m not nearly as concerned about that (other than carbs) as I am the amount of fluids I get in. I have consumed too few carbs a couple of times in the last 5 years that led to acute kidney injury/acute kidney failure, so I also have to make sure I get in enough carbs to avoid muscle breakdown that my kidneys have to deal with, making their job harder. And potentially lethal for me. I won’t do dialysis (seen too many people suffer through it, including my grandmother), so keeping my kidneys functioning is something that weighs heavily, as I try to weigh less. With diabetes, CKD, and gout, food options and management are a non-stop pain in the butt. 

    At least one thing is starting to stabilize, freeing up the expense of tubes and feeding bags (all out of pocket as no MD would help me with supplies via prescription; I’m guessing fat bias), as well as not being ‘tied’ to something for 6-8 hours a day. For the first 1 1/2 years, I used a pump, but after that, used gravity bags. I’ve found some sparkling fruit flavored waters that I like, so that’s been helpful (#Spindrift and #LaCroix are my current favorites). I’m learning how to spread out how much I drink so I don’t get bloated, as well as not overloading with fluids before I eat, or that ends up a predictable failure. I’m fortunate that I also like plain water, or #LiquidIV, so I’m finding enough options to keep me interested and not miserably ‘full’ from fluids. 

    Food is still a problem. Expense wise, it’s gotten very daunting, but I’ve been using components of various emergency foods (MREs, US and foreign, freeze-dried fruits, and some shelf-stable options) to keep things interesting and affordable since they’re already here. Not having to cook much in the summer is also a big consideration. I like budget foods, but things like ramen have preservatives (TBHQ and BHA for starters) which are not good for kidneys (or much else). The seasoning packets can also have sketchy ingredients, so I’m finding ways to have things that I like within my budget, and just come up with my own ‘safe’ seasonings. Artificial sweeteners can cause DNA damage, so even though I’m diabetic I won’t consume those. There are ways to work around sweeteners by getting things plain and then using either allulose, erythritol, and/or a bit of stevia.  The more natural the better when it comes to what kidneys have to filter- and this applies to people who don’t have kidney disease. Why make them work harder? Once they’re chronically damaged, that’s it. The only hope is to avoid more damage. 

    I’m pleased overall that I haven’t had to put the tube back in. I’ve got them here for emergencies (like infections when drinking enough is difficult with appetite and interest fading badly when I’m sick), and knowing that there is a safety net helps me feel less intense pressure, even though the goal is always to avoid the tube when I can. It’s fluid insurance. But for now, I’m doing OK with the old-fashioned way… simply drinking, which isn’t always so simple. I’m thankful that I’ve done it ‘on my own’ for 3 weeks, and don’t plan to reinsert it anytime soon. 

  • More Therapy Repair

    More Therapy Repair

    Image: Online search free downloads

    Because of some creepy stuff that showed up on Facebook, I decided to do a FB search of posts related to a specific last name, and found familiar first names who mentioned people I do know of with the last name I searched. I don’t know for sure if they’re the ‘right’ person by first name only, but I don’t know them, so I blocked a few people. Those blocked with that search were NOT associated with the horrible comments for violence. If any of them see stuff here, so be it. It’s viewable to anyone, though with 3 followers in over 5000 views, this is hardly a high profile blog – LOL. And that’s fine. This is my only ‘hotline’ when I’m overwhelmed or upset. It’s one place I can write, and whether anyone else sees it or not is irrelevant. Human beings have repeatedly proven their lack of trustworthiness in varying degrees (that’s in a broad sense, not isolated to one or two people or situations; I have a trauma warehouse in my head). I don’t have family here, and don’t discuss this with the few friends I have, since I’m essentially housebound, and eating disorders/trauma aren’t great conversation topics.

    I also deleted some posts I’d done as a result of being so hurt. The info in those posts was true about what I was told (but was what I was told true???), but it also didn’t need to be posted. I crossed a line about someone crossing another line. I’d completely forgotten about the posts and found them when I was looking for an old cover photo, going back through posts and photos. They came across as very vindictive, and that was not the purpose. I have very few places to ‘vent’.
    Still not OK.

    In the disturbing posts, the poster called for prison time and various ‘ends’ to someone’s life (I immediately reported those to Facebook). While I’m no longer in contact with the person targeted, there is no time or place for such threats. I also don’t think that prison would serve any good purpose. I know about deaths in Portugal from an article and documentary, but don’t know the details, so can’t say what was good/bad/right/wrong. Many other former patients also died or killed themselves, but that was after leaving the clinic. Others relapsed and died years after the clinic closed. The ‘violent’ person had the name of someone that was very similar to another person I’d had brief contact with, and sent a message (same middle name w/added ‘e’, last name off by one letter, first name with the same sound with the first initial, same number of syllables). They said they were getting actual help, and I wished them well, and blocked them because I can’t trust anyone associated with ‘someone’. I’m guessing the interaction was passed on.

    There were times when I truly enjoyed talking with someone, and hoped that I’d get through this relapse and find wellness. There were conversational phone calls at times that were quite nice, but I never learned how to get past my ‘head’. There’s a 40+ year history of other patients who have posted on various platforms about their lack of recovery with the same person I’d hoped would help me. Some of these I read about in a book by an investigative journalist on this person that I should have read before looking for them, and others I’ve seen online myself.

    Were there helpful things over the years? Yes. There were, especially early on. The first six months were good. Evidently some people do get well if they’re deemed worth the time and can pay for consistent and useful help. That’s just as valid as my nightmare experience, with a fee that was agreed upon mutually prior to starting ‘help’.

    I’m disabled and on a fixed income, so funds were/are limited. There is no universal healthcare. Someone knew I was selling my house before accepting me as a patient. In one request for money for a “website” (never happened that I know of in spite of reportedly recording videos all day every day for a year, which also cut down on time to help me from late summer 2023- late 2024), I was told to “sell everything” I could to send her $1000 (I have the screenshot). When I didn’t do that, phone calls slowed to one a month, with no messages being seen for days on end, up to a week, and someone wanted control over food again after more than 2 years of no food input. I’m not sure how it would work not to see messages or call, but control food. Made no sense.

    Those who heard of me when I was talked about to others living with her will know that I wasn’t known as a ‘problem’. (Someone asked permission to discuss me with those in the house, which I have since rescinded in an email, so discussing me at all is against my wishes at this point). For anything they hear about me now, I wonder does it add up? Have I been turned into a villain ? I’d expect to be viewed as someone hostile at this point based on how others were talked about to me when they disagreed, asked questions, and/or pointed out problems. It’s another pattern. I don’t have that reputation. I wonder if those living with someone have been asked to keep secrets, too. I finally said that if it couldn’t be posted in Times Square, I didn’t want to know.

    I didn’t get well. I felt given up on and disposed of, and intended or not, that was my experience. It would have been so much easier to just hear the truth, that things weren’t as either of us thought they were initially, and the deeper engrained mindset wasn’t going to be undone via WhatsApp ( I never even got a video call, for that important eye contact mentioned in the first Skype audio call when I was too afraid to be seen ). Someone told me I’d needed 24 hour care, but “it was always the money” that kept her from bringing me to her- but that wasn’t said until a few weeks ago, which validated that I wasn’t paying ‘enough’ to truly help. Someone finally said something to that effect in an email months after I’d left. And that’s all I ended up feeling like I was good for. Self-worth eradicated.

    I’m losing weight again, so that’s very good. Shrinking seems to be the best way to cope with existing. That’s my therapy outcome. I’m not sure how long my kidneys will work ‘enough’, but none of that means much.

    And I will continue to wish ‘someone’ well. THAT is who I AM.

  • OK. Time to Start DOING Something

    OK. Time to Start DOING Something

    Photo: mine

    OK, so it’s time to start doing things to move forward. I won’t lie- I’m not even sure where to start, but I know that I have to come up with something that will work for me, and doesn’t seem forced (other than making sure I eat what I’m supposed to, but not be rigid). I have some guidelines from the dietician i’ve seen for many years that include the restrictions I have because of diabetes, gout, and chronic kidney disease (from hypo-perfusion- my blood pressure and heart rate during acute restriction didn’t ‘feed’ my kidneys). I have a number of other chronic medical conditions, but these are the ones I have to deal with in regards to food. It’s a pain in the butt, and does nothing to help me not be focused on ‘the numbers’. I’ve got ideas on what to work on, but I need to get some specific goals that aren’t overwhelming.

    People talk about fear foods all of the time in eating disorder recovery videos, and my ‘thing’ is more about the fear of portion sizes. I’m willing to take a bite or two of a lot of things, but entire servings freak me out. At one point, during the relapse of 1995-1996, eating an egg was ‘bad’ because it was a ‘whole’ egg. IF I was asked if I’d eaten I’d think that I’d had enough if I tasted anything. One spoonful of something was ‘enough’. I know logically that isn’t right, and I’d never support someone else doing that. This all started when I was 6-7 years old, and my mom literally bribed me (with cash) to lose weight when I wasn’t remotely fat. I got the very clear message that eating wasn’t something to indulge in, and that eating more than one container of yogurt for a meal was gluttony. No crackers or fruit- just a cup of yogurt. It stuck. That was more than 5 decades ago. Yup… I’m bordering on ‘geezerhood’, and still dealing with a stupid restrictive eating disorder.

    Ordering from delivery menus is a nightmare. It can take me 3-4 hours to decide on something, and by that time there’s a good chance that the restaurant will be closed. Then I fall back on protein bars or protein water via the NG tube I’ve had in for most of 3+ years in order to get enough fluid in for my kidneys to stay interested in functioning at all. I have a few places that aren’t too horrible, and the idea that someone else put the stuff together means I can’t screw it up, though it’s also terrifying not to know exactly what’s in restaurant food. If I can’t find the nutritional info, chances are, I’ll panic and move on. Individual frozen entrees are also helpful now… but it took about 2 years to be able to eat those.

    I think that instead of fear foods, I need to look at fear ‘situations’. Like if I order something without looking at the nutritional content (except for carbs to know insulin dose, grams of protein so I don’t go over my limit, or type of protein so gout doesn’t flare up). To be able to order something just because I like it has become completely foreign. I am so into numbers fitting into the food log that I don’t bother with just wanting something. That needs to change. I can finagle the amounts to avoid any health issues. To order something because it is something I either want to try or used to eat now and then would be a big step. Even if it’s just adding it to my grocery list- it doesn’t have to be delivery food.

    Something else I need to work on is not panicking when I feel physical hunger. I hadn’t felt it for a LONG time (I’m talking at least 12-15 years), and it’s coming back. Not amused… but I also know that my body is trying to work again, and it’s supposed to work out that if I feel hungry, I eat. Sounds simple to most folks. That is another nightmare situation. I’m terrified I’ll just keep eating, and I have legitimate weight to lose. I’m not a candidate for a reality show, but I’d feel better with less on me. My joints are a mess, and it’d help with pain if I dropped weight. But I have to do it in a way that doesn’t mess me up more.

    There’s also mental hunger, which has been around for a long time, and I very rarely give in to it. But it’s a survival thing- the brain is focusing attention on what the body needs after periods of restriction (this latest more intense restrictive period has gone on for about 4 1/2 years- the longest yet). The preoccupation with food was also seen in the Minnesota Starvation Study after WWII, when Dr. Ancel Keyes studied the impact of restricting food in otherwise healthy conscientious objectors (who wanted to contribute something). They all became fixated on food. They didn’t have eating disorders… they had a deficit of calories and nutrition. So, I need to figure out how to deal with that in a way that doesn’t make me more freaked out.

    I know where I need to change things. Now I just need to start doing something. I need to move forward.

  • What Will 2024 Be Like?

    Last year, I thought I’d be doing better than I am by this time. There have been more medical issues this year that derail eating, and have made keeping the NG tube in longer, just to get enough fluids in. Sometimes I also add a bottle of protein water if I’m low on that for the day. 

    Tomorrow, I see a new pain doctor (actually a nurse practitioner, which is generally a good thing), and I am somewhat fearful. Pain is such a taboo topic, and yet I’m at the point that I can’t keep this level of pain up indefinitely. My right shoulder bicep tendon is either damaged or completely shot, so use of my right arm is pretty limited. The pain if I move something incorrectly is the kind where I see stars. 

    I hope that I can get some kind of momentum going with the eating disorder recovery, because I’m losing patience with myself. I know it’s taken more than 54 years to get to this point, but I still expect myself to do better, even with no frame of reference for “normal” eating. I also hope to be drinking the full 2 liters before another year goes by- it’s been 18 months since I first put the NG in, and even though every one of my doctors has seen it, nobody has offered to help by prescribing the tubes and bags, so it’s all out of pocket on a disability income. For those shameless sods who think I inherited a fortune, they have no clue. 

    My level of hope is overshadowed by pain, and at the same time, I don’t want to give up. I’m learning about food as if I’ve never seen the stuff before. For those people out there who have kids whose weight they are concerned about, never make it about appearance. Never do anything without medical oversight- or you could end up with a ‘child’ whose lifespan is shortened by endless complications from restricting food from childhood, that carries on into adulthood because of not knowing anything different. Focus on health. Looks come and go no matter what- but if someone loses their health, there really aren’t a lot of ways to get that back. Especially in a capitalistic healthcare model. Keeping citizens healthy doesn’t benefit those who profit from keeping people sick and dependent on medications or treatments.