Kidney
PTSD at the blood draw
Every time I'm called to do blood work at my transplant clinic, I'm secretly excited while also scared.
It's an odd “dual feeling” - as a competitive individual, I crave rankings and numbers of all kinds, like:
- listing me against the norm
- explaining symptoms I may have
- and reading more about the possible reasons why some values may be up or down.
So I do crave getting the results back.
In fact, before patient portals were available, I would be that patient who terrorized the assistants and doctors to get my results back asap just to analyze the numbers myself and study them versus previous data.
However, the moment I sit down in the chair for Venopuncture, my mind is lost and my emotions are raw.
I start freezing and shaking, and often tears fall.
I'm reminded of my status as a chronic patient with a severe condition and I'm brought back to several other situations where I was sick and hospitalized. Memories of my diagnosis at 16 with T1D, my transplants, my pacemaker surgery and the times I had a difficult infection...
I guess this is what people call PTSD - and I have tried to combat it by talking to the phlebotomist, thinking about other things, or studying my phone.
But nothing helps.
These PTSD emotions last only a few moments, but they scar me for the rest of the day.
What do YOU think about in these situations to distract your mind and focus on the positive?
1 - 17 of 17 Replies
It is nerve wracking for me as well and I am about to celebrate my 33rd kidneyversary. I chat with my phlebotomist and reassure myself that I have not felt any unusual symptoms recently. But it does blow up my day. My wife has come to realize that I am going to be out of sorts and is very nice about my paranoia. 😬 I envy those who are unaffected by the process. 🙂
Transplant Patient
working and living in the transplant space, I’m usually very aware of my chronic status but I agree it hits different when you’re confronted with the real nature of it. For me it’s ultrasounds. Labs and MRI’s I’m totally fine but ultrasounds do it for me every time. I also just passed my anniversary, which surprisingly hit me really hard.
In the moment I try to explain to any medical personnel what’s going on. I try to surround each medical procedure with a song and dance break, literally moving emotion out of my body and singing at the top of my lungs (usually after, though I have been known to sing during scans and do a little shimmy on the table). Giving myself time to really feel the extent of my emotion before and after helps too. Yes it’s hard, and I can do hard things. It’s ok to cry, it’s ok that my brain is telling me this isn’t safe. And then just breathing. I also find making eye contact with myself using the selfie function on my phone helps, like a reminder to me that I’ve got me and my wiser, adult self can be there with the traumatized part of me
I've literally today jsut had my bloods done for my regular post-transplant clinic and it is the thing I dred the most. I hate it. I hate the needle going in, the feeling of it hanging out of my arm and wondering if they'll get the vein the first time!
I've just posted on my insta about this.
I used to feel like a pin cushion when I was in hospital!
I created a visualization-meditation to listen to on the way to getting my labs drawn. And yes, that definitely sounds like PTSD @Karin I feel like it’s the same for me too! I used to love graphing and charting out all my results and trying to figure out what was going on. If anyone wants the meditation, I have it here-
https://view.flodesk.com/pages/630f8fe5e336b8a8b0e6b8c8
Prior to dialysis blood draws never bothered me, I usually watched the process. Now I can’t even watch getting a flu shot, much less watching blood draws.
After my ordeal with my failed pancreas - I have developed a pretty heavy panic towards blood draws. By the end of my 3 months of hospital stays and rejection, I had an order for immediate picc line insertion, bc my veins LOOKED reachable, but they were not - and every nurse thought they could get it, so no one would listen to me when I said I was a difficult poke. I've made friends with the local lB so we have a special procedure when I go in - and a dedicated nurse who listened to me. Things she better now, but the ptsd is real.
Transplant Patient
I feel this. I have a PICC placed for all my admissions for this reason. I get my labs done every month and while it usually takes a while, I can usually get through it. I go to a specific lab, see a designated tech and have pre-lab rituals I do every time, though. This last time I had to go to a different lab and thought I'd be fine. I ended up with such bad anxiety all day, and definitely will not go to any other lab/tech again if I can help it
I am scheduled for a nerve block Monday and panicked the last time I had an IV line put in my mid arm. I need some help for prep tools to prepare me for the IV line done Monday. Any ideas, meditations, things to do while they input the line? It was so painful last time and never had this problem prior to transplant. The tacrolimus shakiness certainly increases the anxiety. Thanks for you ideas, BB
Transplant Patient
Thank you for sharing - it doesn’t get easier for me and w chronic mgmt it is a monthly experience that I don’t enjoy! I do want the data though - just not the feeling of being drained and pricked and poked
Transplant Patient
@BrightLight can you have someone with you? I always have to have a support person - and got documentation from my therapist that I have medical PTSD and need a support person with me at all times so even if it’s not policy I can have one.
i try to do a lot of deep breathing before and during, I will use my other hand to squeeze a comb or an ice pack to help distract my brain from the sensation of the IV, I request them walk me through everything they’re doing, and to use all the tips and tricks for getting a start right off the bat. Also music, shows, anything to give my mind something else to focus on is helpful
Thank you. I did not think of these ideas. I left a message for my therapist. I will also ask my daughter who is trained as a phlebotomist for some tips and tricks. Anything that will distract me and calm me down. I am already stressed and it is 4 days away! I will make a list of ideas and use them. I am also having a nerve block done Monday and nervous about this too. Thank you again, BrightLight
They poked me 7. SEVEN times for my last draw. There were 10 tubes to be filled as this was my 6 month post op appointment and additional tests were needed. By the time I got back to see the provider my BP was abnormally high and I forgot to leave my urine sample. I’ve been a difficult poke my whole life but I have figured out things that work for me. 1 being a glove filled with warm water on the poke site. It helps tremendously. This was a new MA who I haven’t seen before and she didn’t want to do the glove trick. After 2 people poked me I once again suggested a glove filled with warm water. Whadda you know. Easy access to the vein, 3 tubes filled quickly to finalize the draw. I could have cried right there.
then, I was so stressed that the results wouldn’t be what I wanted because it would be par for the course of the draw. Thankfully they were stable and exactly where they should have been.
My little guy sometimes is offered a numbing spray to take the edge away from being poked again and again. Some times he does the draws just find and other times he is nervous and anxious. It's so hard on the bodies that remember the trauma and working through that.
I find the most helpful thing for me going into a blood draw appointment is to be as hydrated as possible. That seems to help the phlebotomist find the vein, and it hurts less as well. I always have a different person taking my blood but I always let them know that they always use a butterfly (the smallest needle) and have the most luck with that...
As far as the nerves/anxiety goes...I like what @AliEm14 suggested. Focus on your breathing because that can help you from getting caught up in the worst case scenario stories going on in your head. Most of the time, (majority of the time for me) the pain is temporary and I just try to remember that and calm my breathing and stay as present as possible. Projecting the possible outcome and focusing on what had happened in the past will not usually help the current situation. I know its a lot easier said than done. :) Hope that helps someone through their next appointment.
@Jillbest yes to hydration! I feel like that helps the best for routine blood draws for sure.
Agreed! Hydration is key! I drink at least 32oz of water the morning before my lab draw. (my transplant center is about 45-60 minutes from home so this is easy to achieve on my drive)
Reading all of these responses has me feeling seen today- Monday is my usual day for labs and as it was a holiday in my province I had to do them today with completely different staff and it completely threw me off and had me in a panic! I am a very difficult draw and I seem to always get the over confident tech who just won’t listen to me when I try to help them be successful with me (and keep my pain to a minimum) it sends me right back to not being listened to when I had my first event that caused my kidneys to fail- definitely a PDST trigger for myself. I have rituals and self talk that keeps me sane and I hang on until it’s over.
I can also very much relate to being the competitor who needs to see my stats! Thank goodness for patient portal so I can see them without harassing the dr.‘s team hahha