My Hands Feel Warm!

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One of the symptoms I've had now for years is cold hands and feet. It's not just randomly when I'm outside in snowy weather, but it was constant. I also thoroughly enjoyed putting my freezing hands on my husband to shock him or make him jump at times. Well, no longer can I do that.

I had surgery to check blood flow again in my abdomen and pelvis and then a venous stent was placed in my iliac vein early this afternoon for my May-Thurner compression (see the above picture). I was completely put under with anesthesia and had to stay laying down afterwards for 4 hours to prevent a blood clot. When they finally were able to get my pain under control and I was allowed to change out of the hospital gown, I sat in the wheelchair waiting to be discharged. This is when it hit me. I looked down and couldn't stop making fists because I realized my hands felt warm. The same hands that had played the cruel joke on C so often. I told my aunt about it and then burst into tears. Tears of joy. 

I am now back at my aunt & uncle's house. The surgery did go well, and we were so impressed with the hospital and the care I received by everyone. I am in a lot of pain, which was to be expected, but I would say the warm hands are a very good sign :) I know so many of you have been praying so I wanted to give a little update.

Putting in a PICC Line

Last epsom salt bath for awhile.

Today I'm getting a PICC Line put in so that I can get IV infusions 3x a week to help with a lot of my debilitating symptoms caused by the vascular compressions and POTS. It will also help to keep me hydrated because eating and drinking very much still cause a lot of abdominal pain.

Here's a great video of my friend Angie explaining what a PICC Line is and what to do for it. I joked with my family that I'll have to start a fashion trend with the covers ;)

Let Your Glory Fall

I think it's a perfect time to share this song again as it has been raining outside all day today. I listened to this song over and over at a very low time where I didn't know how I was going to stay strong with the pain I'm in. It feels a little surreal to be able to listen to this and praise Him that things are happening and moving. Prayers are being answered. I have a lot to write about the past week and yes, although I still have pain and all my health issues, I now have doctors that are doing something about it.


The last post I shared was mostly updates about my vascular compressions, and this post where I asked my prayer warriors to pray for a new path and direction that's God's plan, well I'm excited to tell you that a new path and direction has been made! I will be having a surgery on the 27th (yes this month) to put a stent in my iliac vein for my May-Thurner Syndrome.


I have so much more to share, but I'm still exhausted from the traveling, I'm currently in another "flare" from all the pushing and prodding on my abdomen and pelvis at the appointments, and the last of my energy went to making it to another check up with my local doctor here today. I promise I will catch everyone up and explain soon, but right now I need to focus on preparing for my surgery in 10 days that will be in Houston. I also want to soak up as much family time as possible before being away for 10 days until my post op when I'm allowed to travel back.


I want to say a huge thank you to my mom and step-dad for taking me and the girls to Houston for my appointment Monday and my aunt & uncle who took me to my appointments and will do so much more in the upcoming weeks to make all of this happen. Also, of course a thank you for all the continued prayers!

"Let your presence flood my life, oh Lord"

                    -Kari Jobe

Health Update 1/1/2020

• In this post I shared another setback and in this post explain what vascular compressions are if you haven't read my most recent posts.
• There are only 2 vascular surgeons in the country that I know my Dallas cardiologist recommends, but I wasn't able to get a referral (which I need for the one in Tennessee) because my CT Angiogram didn't show enough compression for a MALS diagnosis or SMAS diagnosis (although I've had doppler ultrasounds that do with abnormal velocities which helped me continue fighting for a Nutcracker diagnosis even when the Venogram was incorrect). Both surgeons have a pretty good reputation for MALS, but I was hoping for a surgeon who could fix all my compressions in one surgery.
• I am currently attempting to seek out the California surgeon to see what his process is, but know if he does agree to look into my case, I have to make a trip even there for the 1st consult. The secretary was out Tuesday so will try back tomorrow. Anyone want to accompany me to Santa Monica Blvd? 😉
• If I do finally get an official diagnosis of MALS & SMAS (I've been told the Ohio surgeon is still supposed to look over my scans and call me 🤞) and therefore would hopefully mean a referral to the Tennessee doctor, but the consult appointment wait time is 4 months out right now. 
• Another obstacle now in the mix because the Ohio surgeon did not require, is that I will have to get a Celiac Plexus Block done before they agree to surgery. Unfortunately it is a greater risk for someone with EDS because the block can cause more scar tissue to form in the already problematic area.
• I finally received my thorough and validating report from my geneticist to all my doctors showing with research that I have severe Ehlers-Danlos Syndrome. We are waiting for further genetic testing to see if I have any other vascular genetic mutations or connective tissue components that would help to further explain my health problems. 
• Next week I also have my first appointment with another EDS specialist in Houston, but she is not covered by insurance. We are hoping she is worth the $400 appointment to get some more answers and direction on my organ function and to maybe try some out of the box treatment/medicines to give me pain relief.
• I am half way through my EDS Hypermobility research study. I was shocked how much I have learned about my body and movements even with having a background in exercise science and personal trainer certifications. I would now recommend everyone not just if you have EDS to sign up and take her course ->  https://jeanniedibon.com/strengthen-your-hypermobile-core/