Translate

8/29/2021

14 Things to Remember During Compression Surgery Recovery




 
Before I get into the actual list, I would like to say that I have friends who've finally gotten pain and symptom relief with different surgeons than I did and my heart is so happy for them and vise versa. I want support and community to be the number one thing that all of us compression warriors influence, especially during recovery. I don't think anyone has to get the same surgery that I had or that it's the only option. For those people that are more complicated or have been only met with disbelief and feel like there's nowhere to turn, I want you to know I was in that same place. My EDS doctor and I have put together a team of specialists to create a path for those who aren't getting the help they need with multiple compressions, but could never make it to or afford to go Germany.
 

"Your hardest times often lead to the greatest moments of your life."

                                                                                    -Roy Bennett

 

I have shared a few times how tough this surgery and recovery is, but there's a reason. I hoped with my operation that I would just have the chance to be around for my husband and daughters a little longer, I never foresaw that I'd have the improvement or progress I've had. When I was discouraged anytime those first 6 months, I was reminded of the miracle God did for His people when he parted the sea. Even after providing over and over again, the people in the desert still lost their hope and faith. God made a way for me to get to Germany, I couldn't give up on the rest of what He has in store for me because it gets difficult again. I would say that during this recovery, you will also be healing more than just your body. Even though I speak on the recovery subject here and here, I wanted to create a list all in place for whoever might be going through it right now.


1. I'm going to repeat this again because I think it's a good timeline and was correct for me - It took 3 months to start getting out and about, 6 months to feel like the surgery was worth it, and 12 months before I felt better than ever. Other people are going to think you should be healed immediately (probably even some doctors), but this isn't like any other surgery recovery. Even after all the different surgeries I've had, 6 weeks was always about the time it took for me to feel recovered, but for this, even when I hit 6 months, I knew that it'd be at least a year.

2. I think the most difficult thing mentally for this recovery is that if I had a good day, it made me think it would only be better from here on out. Then when that didn't happen (if you are like me and have tried a million other things or surgeries that ended up not working), I would instantly think something was wrong or this was now my new normal. Better from here on out did happen eventually, just not until the fibrous tissue formed around my grafts at 6 months. I was actually told that it takes 266 days for the internal sutures to dissolve. This brings me to my next on the list: 

3. Everyone is different healing wise. There are so many factors that can come into play - age, previous surgeries, EDS and other comorbidities, how bad or long someone had the compressions, which compressions, diet, resting, someone's body adapting to the grafts. For me my renal vein graft bothered me so much more than my iliac vein and digestion wise I felt like I had it easier than some. But man oh man, energy, or lack thereof I should say. That was usually my cue something internally was going on. A little friendly reminder is that you aren't completely healed until your scar is white if you want more of a visual how you know. 

4. Nothing is too small for progress, remember that. Even a more painful day meant progress. Something I had to learn, sometimes the days I was most fatigued or hurting extra randomly (or digestion was being weird again or non existent), a week or two later I felt more difference and would go "oh, that's what was happening." What I'm here to say is to not lose sight of the big picture during recovery. 

5. Let go of expectations - healing, energy, productivity, posting or responding on social media, returning calls or texts. I majorly struggled with the guilt, but I knew those that loved me truly understood and I would eventually get back to them when I was feeling well or when my hands weren't full with my girls.

6. It's ok to ask for help. Help when you are discouraged, help with cleaning, help with cooking, help with groceries. Recovery meant we only got groceries delivered (and meals delivered a little too often when I was having a hard time) because we knew how important rest was when I felt that way. I would suggest making a list for family or friends who've offered or asked if you need anything. Some ideas might be taking out the trash, bringing groceries in or putting away, lifting or moving things that are heavy, picking your children up (this one was so hard not to do personally), or even laundry I had to be more careful. I'm going to let you in on a secret. My house was a disaster. I'm a little shocked I am admitting that because it is embarrassing and was overwhelming, but you know what? There were more important things like making sure I eventually would be able to do all the above things again one day, but not if I didn't let my body heal first.

7. If you overdo it or did do something you shouldn't have, and you feel it or start to worry something is wrong, it's totally ok to get peace of mind that blood flow, grafts, (or transplanted kidney if you had AT) are still good by getting labs or imaging done (and sending to Sandmann if that's who did your surgery). *We are very lucky in that we can contact our caring surgeon by email about a problem because he is responsive to help give you peace or direction if he thinks something is concerning.

8. Something I always want to mention to others to be aware of because if you have EDS and compressions, there's a good chance POTS or MCAS will follow if they haven't already showed signs prior. Surgery is very traumatic on the body, especially if you have EDS, but it can actually cause other things to amp up afterwards. I realized since I was already aware of those diagnoses of mine and their symptoms (and how to keep them under control), that I could separate them from my healing symptoms and pain.

9. To go along with this, I would also locally (before surgery if you are able to) find a doctor who might be willing to give you fluids and discuss possible weight loss right after surgery, how you will combat that. If a PICC line might be needed and TPN to supplement (depending on your pre-surgery weight), but to keep your strength up because some people will have vomiting or dumping syndrome. *If you are going to Germany, I would try to find a doctor who's willing to prescribe you pain medicine for traveling back after your surgery because new regulations unfortunately prevent Sandmann doing this anymore for his out of country patients (in case you had already been on pain medicine for the compressions because a lot of us are).

10. When you are in it, the hard times feel like it will never pass - Start journaling and documenting right now, anything and everything. That way you can notice any progress when you are in those stuck phases of healing and getting discouraged. A huge issue with these compressions is so many doctors don't understand how many things are affected by lack of blood flow so some things you had no idea would get better, may. Heart palpitations to migraines were just a couple improvements I hadn't expected, but so very glad they did 🙏

11. Pain control matters. You can't heal or sleep if you are in too much pain and like I've said, it's normal the first 6 months. Do not feel guilty for using pain meds [I am not a doctor and that is not medical advice]. I battled a lot of shame actually sharing about that because of the terrible stigma attached, but I made it to surgery because I had them (and finally a doctor who understood and believed my pain to even prescribe them that I know some aren't lucky enough to have). If medicines don't seem to work on the pain, it may be worth it to get a genetic blood test done to see if you over metabolize or don't metabolize certain ones as well. This can even help navigate what might be your best bet to try or proof to your surgeon you aren't exaggerating.

12. Diet and supplements also matter. As much as the surgery can correct problems, recovery is almost rivaled in importance. You really want to try to keep the inflammation down and give your body the best chance. I did a lot of things before surgery that I felt helped my recovery and feeling well now. If you can, even doing blood work to see if there is any deficiencies (some can even increase pain you experience during recovery). I do know a couple warriors that did find out they were low in something and it made a difference supplementing or adding something in. If you have questions or would like any guidance, I'd be happy to share more or you can contact my cousin who is a Nutritional Therapy Practitioner (FNTP) and has learned the same things through her own journey with chronic illness (you can check out her Instagram that has a ton of great tips as well).

13. Come up with what inspires or focuses you in those down times, or what does the opposite, and set boundaries. I know it can depend on the person, but does social media make you feel worse when you are in bed and see all the people out doing all the things? Mental overdoing is just as bad as physically overdoing it, I had to learn the hard way. Do you have a music playlist? If not, here's mine. Also distraction is very needed. Allow yourself to binge watch shows or whatever can do the trick (when I'm in pain, reading is out of the question). And don't ever underestimate the value of a hot Epsom salt bath (my friend Emma always shares this). The times nothing is cutting it, this always does for at least the time I'm in it. Also find the positions that you can alternate and switch into to give a little relief in the meantime. For me it can be Happy Baby, Child's Pose, or Reclined Goddess Pose and multiple pillows can help find something comfortable.

14. The most valuable thing to remember during compression surgery recovery is that you have support and community if you need it. Sometimes it's the biggest comfort just to know someone relates to exactly what you are experiencing and that you aren't alone (and to give you that little extra encouragement when we need it the most). Here's the Facebook Support Groups I'm in and the Scholbach/Sandmann Support Group if you went to Germany. I love that the SMAS Non-profit also sends cards in remembrance of Lisa Brown if you had surgery or would like one on your birthday. And last...

 

Give yourself grace. You did it. You made it to and through surgery and I'm so proud of you because just making it to this point is HUGE. Those of us that have finally got a glimpse of the light at the end of the tunnel are here to show you that you will too. 

 

 

"Saw the end of the tunnel
Didn't think that I could make it out
Got so used to the dark
I was scared of what the light would do now
I couldn't piece me back together
With some bandaids and a roll of tape
Sittin 'round wishing it all away
Believing there was something better, better
Just took a leap of faith
Now I'm healing
Now I'm healing
I'm here unashamed
I found strength through the pain
What was broken is standing again
And I'm healing
Now I'm healing
Gave myself some grace
And my soul began to feel the change
I let love flood my heart
Like the Sun upon a tear-stained face
I'm slowly learning to be grateful
Found some purpose in all the hurt
Now I'm rediscovering what I'm worth
Just takes one step to turn the tables
But I had to take it first"
 
 
 
 
 

No comments: