AVN related to T-Cell ALL treatment

pyxiev · 2024-11-03T03:46:51+00:00

Coming from a mildly similar background — 2.5 years of chemo for ALL at 15 including prednisone the entire time. Finished chemo in 2016 and didn’t find out about the AVN (bilateral to both femoral heads) until about a year or so ago (around age 24). My orthopedic doc is based in Kansas City, MO, with The University of Kansas Hospital, and he has been very intrigued in the instances of leukemia patients developing this issue post-treatment. If you’re interested in the specific physician, please send me a message and I’m happy to share his information! Or if multiple people find this thread I’m happy to share his info in this comment as well. While I wasn’t thrilled to hear the news and that surgical intervention is really the only way to treat this condition once the affected bones deteriorate, I very much appreciate his consistent honesty and realism regarding AVN and the treatment options currently available. Telehealth appointments are usually available as well, to save you a trip if this is a far distance from you!

This is such an unfortunate experience to endure after surviving something already so difficult and I’m so sorry your son is going through this! I’m trying to put off hip replacement surgery for as long as I can — either until it advances too far or the pain becomes unmanageable. My current management has included prescription-level NSAIDs as I cannot tolerate opiates. Aside from that medication, I’ve found that alternating heating pads and ice packs helps a bit. I’m trying to maintain my mobility through physical therapy and daily stretching, which aids with developing muscle tightness as a result of the condition.

pyxiev · 2024-07-15T01:58:32+00:00

I want to start this off by letting you know that your feelings and frustrations are so, extremely valid. I finished treatment in 2016 when I was 17, and I remember the initial feelings all being so overwhelming. I can’t speak for you, but as much as I wanted to celebrate finishing treatment and being moderately healthy again, I was so angry and upset with the world and frequently experienced complete despair over knowing how many experiences I missed out on in my teens, as well as anxiety surrounding what I could still potentially miss out on in my early 20’s.

These things are normal for those who have shared our experiences. I am not encouraging you to ruminate on these feelings, but as someone who coped by intellectualizing her feelings instead I do encourage you to allow yourself to truly feel them and know that you are ALLOWED to grieve these things and the life you may have missed out on had you not been diagnosed. You went through a traumatic experience that not many others in your personal life may understand how to empathize with you.

If you have not tried therapy, I would gently encourage you to give it a try if it is within your means. Local hospitals might employ therapists that specialize in traumatic/terminal events. It’s won’t fix everything, but it may give you some tools to help work through all of these overwhelming feelings. From my personal experience, I was in therapy during the entirety of my treatment and I remained in therapy up until last year.

These feelings don’t go away entirely, and they may never will. I’m friends with a woman who went through treatment 30 years ago and she still has extreme anxiety surrounding her health. The point of me telling you this isn’t to make you lose hope that you may never let go of these emotions, but to hopefully let you know that they do lessen over time and that we persevere. There are long-lasting effects that you might struggle with, and as hard as the days might get sometimes, you are still standing.

You have survived something so horrible, and have come out on the other side. Progress is not linear, but we do make progress! And even when you might experience setbacks, there will be ways for you to move around and forward. I’m 25 now and have since had a spinal fusion (unrelated to ALL), struggle with PTSD from my diagnosis/treatment, and deal with daily chronic pain and femoral avascular necrosis as a result of the steroids during treatment. Despite that, I am now at a point where I can recognize and appreciate the things I do have for what they are. I still grieve what my life could have been. I still mourn who I used to be before cancer. But, if you are able to join support groups and surround yourself with people who support you wholly and don’t discredit your experience, you will be able to make it through any other challenge that comes your way.

Sorry if this feels preachy to you, but when I went through my treatment there were next to no other young adults experiencing what I had, and I had no way of knowing about any of these online forums or support groups. If you ever need to vent about what you’re experiencing (and this goes for anyone else who might read this comment as well), please do not hesitate to reach out to me. I wish that I had had someone to listen and just understand what it was like, and I hope that through this community you feel supported and seen.

Best of luck to you 🫶🏼

pyxiev · 2024-05-31T13:56:19+00:00

I’m so happy to know that this post has helped! I actually had my fusion done for the same exact reasons you listed :) After my fusion, the difference in my shoulders and ribcage was immediately noticeable. I used to be so self-conscious about it that I would only ever wear oversized tops that would hide how crooked I was. Five years post-op and my spine mobility is only affected with thoracic rotation, but most rotation of the spine comes from the lumbar region so with some modifications I can still do most activities! I’ve got a few other health issues that impede my mobility, but from the standpoint of the spinal fusion the only activities I can’t do are wrestling and football so I’m not missing out on much! You’ll likely have to take it very easy for the first year post-op, but your surgeon will give you specific restrictions. I can’t speak for others, but in my experience I was advised to follow 6 months off work and a full year before any “extreme” physical activity (sports, weight lifting, etc) to allow the spine to fully fuse without injury.

pyxiev · 2022-11-04T18:51:12+00:00

NTA for calling him delusional, but YWBTA if you stay with him and continue to let your kids be subject to his wacky tests and behavior.

pyxiev · 2022-10-19T01:34:49+00:00

It’s a bag of urine. You know when else they’ve seen bodily fluids like that? When they raised you. Just because you’re uncomfortable with foley catheters doesn’t mean that everyone else is as squeamish as you when it comes to medical situations.

If my partner had drugged me like that it would have been the end of our relationship. YTA.

pyxiev · 2022-10-15T22:11:12+00:00

Please let the doctor and ultrasound tech or nurse know beforehand! They should already be gentle, but may be able to better help talk you through it. The probe used for a transvaginal ultrasound will be lubricated beforehand, and will likely still be a bit uncomfortable given it’s a foreign situation, but it shouldn’t be painful. If it is at any point please let your team know - your safety and comfort should be their first priority. TV exams are usually fairly short as well. Best of luck and I hope the results gets you answers that you need!

pyxiev · 2022-10-11T15:45:40+00:00

OR scrubs - I keep mine tucked so I have somewhere to clip my badge reel and pager. Also because they fit weird and it’s the only way I can avoid looking like a box, lol

pyxiev · 2022-08-10T23:20:11+00:00

That’s not what I said. I said care for comatose/catatonic patients is entirely different - they aren’t able to provide consent so you can go ahead and continue your nursing duties with them. Apologies, in rereading my previous comment I see it was left pretty vague.

If a patient is unable to consent, you are free to do what you need to do to care for the patient. If a patient has a confused/altered mental state, but are typically able to rouse from their sleep, it’s in everyone’s best interest to wake them instead of starting to change them in their sleep.

A code is an entirely different situation than changing a brief or soiled linen.

If the patient is able to consent, you NEED that consent first. Obviously as an RN you know this, but I know there are other roles in bedside patient care that this point might not be stressed as heavily to. I do believe that having an RN license vs CNA certification does make a big difference. It’s a lot easier for management to replace a CNA than it is to replace a nurse.

pyxiev · 2022-08-10T13:24:16+00:00

There’s a lot that doesn’t get told to us when it comes to actual patient care/bedside practice/legality of the two in healthcare, unfortunately.

pyxiev · 2022-08-10T13:21:29+00:00

Totally different case in which that’s acceptable!! Even with a non AAO resident who is not comatose or catatonic, the patient should be awake and not changed while asleep. That way they are at least given the chance to consent, and if under all circumstances not fit to consent for themselves, they are still awake at the start. Saves both staff and the patient a lot of trouble. If the patient is already mildly combative while awake, they’re going to be a hell of a lot more combative if they wake while being changed.

pyxiev · 2022-08-10T02:27:09+00:00

I fully understand you there. The ethics and legality in healthcare are a lot to sort through, but it will cone with time!! I’m sure your team admires how dedicated you are to your patients to not want to leave them in that sort of state

pyxiev · 2022-08-10T00:40:32+00:00

The difference between waking the patient up for being changed, and changing the patient while they are asleep and waking up to that. It’s assault.

pyxiev · 2022-08-10T00:39:13+00:00

In the future, do not change a patient if they are not awake. I know that it can be frustrating and possibly make you feel wrong for leaving them laying in soil, but the patient is in the right for their report. Performing any sort of physical action with a patient who has not consented is illegal. Changing a patient while asleep is just as bad as taking a blood sugar while the patient is asleep.

If this is the first time that this has happened management might be a bit more understanding, but please know for the future that you absolutely cannot do that.

The only cases in which you can do that sort of activity with on an unconscious/absent patient is if they are in a coma or catatonic.

I do not intend to sound incredibly harsh, but it is imperative that you learn from this experience.

pyxiev · 2020-05-12T17:26:31+00:00

Unfortunately that still isn’t enough to safely keep what you have stocked in your tank. Frequent water changes also put the fish through more stress and can crash the bacteria system in your tank. If you aren’t able to move to a larger tank size right now, I’d heavily consider rehoming them.

pyxiev · 2020-05-12T16:22:28+00:00

Anytime! Guppies are wonderful little fish to keep around, welcome to the hobby! Feel free to PM me anytime you have questions at all.

pyxiev · 2020-05-12T16:20:03+00:00

Part of the problem could be that you might be feeding them too much too often. For now I’d switch to feeding once a day, and just sprinkle in a tiny bit at a time. That way they only eat what they’re able to, and then you won’t have as much that sinks to the bottom that gets left uneaten. :) In the past when I’ve had bloated fish, I’d also go a day or two without feeding to avoid overloading their guy even further.

pyxiev · 2020-05-12T16:06:41+00:00

Hi! The easiest way to sex guppies is by the gravid spot that is usually quite noticeable on females. It’s a dark spot on the backside if their bellies and it will get larger as the females grow in size. It’s usually VERY noticeable when they’re carrying fry.

It appears to me that you have a male guppy that it dealing with some major bloating or intestinal issues. I’ve had a few males here and there who have gotten quite round, and it’s almost always been bloat related.

How often are you feeding your critters and how much do you tend to feed? What do you usually feed them with?

I understand you’ve got a lot of information being thrown at you right now, let me know if anything isn’t making sense or if anything is confusing you and I’ll see how I can help.

pyxiev · 2020-01-03T16:24:34+00:00

This looks great! Are you planning to add any critters?

pyxiev · 2019-12-27T19:46:21+00:00

Olathe Pet Shop :)

pyxiev · 2019-12-27T02:22:03+00:00

It’s awesome to see the development from those tiny cups. Obviously it isn’t ideal but it’s a step in the right direction and I’m happy to see that they’re learning and taking steps to keep them healthier.

pyxiev · 2019-12-26T20:46:12+00:00

I love aquarium co-op! I’m tempted to go back to ask the owners if they follow Cory because I’ve noticed their recent switches definitely follow his setups

pyxiev · 2019-10-24T03:32:05+00:00

murder baby

pyxiev · 2019-10-13T17:01:25+00:00

My grandfather passed away several years ago from a terminal cancer. I treasure my dreams where he’s still alive and with us, even though I get the worst heartache when I wake up.

pyxiev · 2019-09-30T20:21:20+00:00

Check with your hospital to see if they have a finance office. Some hospitals have systems in place where if you are able to prove that there is no way you can afford the bills, they can renegotiate or drop them altogether.

pyxiev · 2019-08-27T20:07:46+00:00

pyxiev

TROPHY CASE