Since the Stent Surgery

Thank you so much to everyone who has messaged, called, reached out, commented on Facebook or the blog. I wanted to be better at updating everyone during this process, but to be honest it's been a bumpy road. Let me first say we know the stent was definitely needed and can see major improvements because of the blood flow. I didn't even realize how bad the swelling in my legs was from the compression so I could tell a difference even the next day after surgery. 

The 3rd day I thought was the worst pain-wise, which is normally always the most sore. When day 4 and start of day 5 hit, the back pain was gone, and although I didn't proclaim it to anyone, I started hoping this was the turn around and that I would be better from here on out. Unfortunately later that day I had a hard reminder that recovery is a marathon and not a sprint 🙂The back pain from surgery did eventually go away, but I was left with my previous pelvic pain and new leg pain that I haven't been able to get under control. Understanding how pain works and knowing that my iliac vein had been that compressed for so long, I know it is still soon after surgery and that there is still hope for it to disappear, but I do want to be honest that as of right now I do still have it.


The plan with my vascular surgeon at my post op is to see him in 3 months and do an ultrasound on the stent to make sure there's no scar tissue or clotting. If it's still clear, I can stop my blood thinners. If I'm still having pain at that time, we will do another CTA and more testing to check blood flow on my other compressions and then look at more invasive surgeries. Right now I'm also supposed to be receiving IV fluids multiple times a week to help with the compressions and symptoms. With my recent added leg pain just from others' experiences, it could mean that opening the blood flow in the pelvis is now showing how bad the damage had been in the legs from almost being cut off for years.

Along with the pain, I am having terrible migraines and really sick to my stomach, but I just kept thinking it was from this or that until I realized by the 5th day I was most likely not tolerating the blood thinner I started. Some of you know that I have a lot of issues with medicines and that can be part of EDS. I had done a medicine metabolizing blood test a couple weeks earlier with my EDS doctor and thankfully I got the results last week. Blood thinners hadn't been mentioned so I didn't think too much about it until I started investigating about not being able to take my CBD oil with my blood thinner because of an interaction. This weekend I realized that one of the genes that I ultra-rapid metabolize, actually affects the blood thinner I'm on. This could put me even more risk at for a blood clot. I am trying to be extra cautious since I do have a lot of overlapping symptoms of deep vein thrombosis.


I had tried writing a few update posts, but with those side effects, I just was just unable to collect my thoughts enough so I do apologize for keeping so many of you left hanging. Some of you also knew that I was very fortunate to be staying with my aunt and uncle until my post op appointment a week later, but that it also meant I had to away from husband and girls. I was missing them pretty bad. I also don't get a lot of opportunity to spend a ton of one on one with my aunt and uncle so I did want to soak up that special time with them because I was so thankful for all that they have done for me. With all things considered, we had a wonderful visit.

In the mix of all of this my family was waiting for my sister to go into labor. If she did not go into labor by February 3rd, they would do a c section. February 3rd is also my youngest's birthday and my post op ended up being February 3rd. My aunt & uncle drove me to the appointment at 1:30, we got on the road at 2:30, headed to the ranch where my step dad picked me up, and he took me the rest of the way. I arrived around 8:30 and I will just say it was the best homecoming to get to hug my husband and girls and wish my youngest a Happy Birthday before we put them to bed.


My beautiful niece was born on the 3rd and we hoped to possibly meet her the next day. I will write up a future post on some stress with my PICC Line, but will leave it that we were able to just make a quick visit  to meet her and congratulate my sister & brother-in-law. That night the temperatures dropped and we started to get snow, which ended up a beautiful birthday gift to wake up to! Some of you know that I grew up in Alaska so this was a wonderful surprise and some of the sweetest moments getting to experience that with my girls. My husband was able to stay home last week to get help take care of me and the girls and we've been overwhelmed with all the people who've signed up to bring us meals and the ones that already blessed us by cooking and bringing us some. Home health did finally make it out to change my PICC Line dressing and give me some much needed fluids before the weekend so just waiting to see how this week goes with that.


I have a ton of posts in the cue to catch everyone up on. Are there any requests or posts that you would like to see? I haven't said it in awhile, but thank you to everyone that has followed along with my journey ♡