Recovering from Surgery

I’ve officially been home for 6 weeks! Healing from a left renal vein transposition is no joke. I have a 7-inch incision on my abdomen, and recovery has been like a roller coaster ride. It requires a lot of listening to your body and adjusting as needed. Here’s how it’s been so far:

First 2 Weeks At Home

There is no way I would have survived on my own. I needed my husband’s help to get dressed and undressed (which always resulted in laughter), and he had to do all the chores and cooking (not so amusing). At first, the pain was unbearable. It felt like my abdomen was being ripped apart. I was given two painkillers, a nerve blocker, and a muscle relaxer, but they didn’t really help. Alternating between ice and heat brought the most pain relief! I also had to keep eating small, frequent meals because I felt full quickly and still had a sensitive digestive system. I dealt with lots of lower back and pelvic pain, which was probably worsened by not being able to take birth control (to prevent blood clots).

One of the hardest things was getting comfortable and trying to move. It is a shocking sensation to suddenly have no ab muscles! The only way I could get up out of bed was by doing a log roll, and by week 2, I was over it. My Squishmallow and abdomen binder were lifesavers; they provided much needed support! My abdomen was chafing from whatever adhesives were used in surgery, so wearing the abdominal binder could be a bit uncomfortable but very needed.

As strenuous as it was, I made sure to get up every 1 to 2 hours to walk around. You won’t feel like it, but do it!!! I couldn’t stand up straight for a couple of weeks and walked at a sloth’s pace, but it really helped. Finally, after about 8 days, my pain eased up and changed to a tightly-stretched feeling. I was still only able to do easy activities because standing up straight, lying down flat, and sitting in a chair were still uncomfortable (propped up in bed was the only position I could tolerate).

2-Week Post-Op Appointment

I was thankful to have a post-op so soon because I had a lot of questions. I was having UTI-like symptoms and a lot of pelvic pain, and I had a lump on the top part of my incision. I learned that the pain can come from pelvic congestion syndrome and collaterals shrinking, and UTIs can be common after having a catheter. The lump is also common! It’s called a seroma and should go away with time. The physician assistant also explained that recovery realistically takes up to 3 months. I got an ultrasound scheduled with my surgeon 6 months out, and I am hoping that it shows the vein is in place and functioning correctly!

My instructions for the next 4-6 weeks:

1. No creams or anything on the incision until it heals.

2. No being submerged in water.

3. Stay hydrated and walk regularly, but no lifting or strenuous exercise.

4. Keep doing small meals throughout the day; work up to eating more at one time.

3-4 Weeks Post-Op

At this stage, I gave up on the pain meds because they did nothing. I finished the muscle relaxers and weaned off the nerve blocker, and I switched to just wearing the abdominal binder during the day. However, I started having a lot of issues sleeping. Anytime I’d move, my abdomen would tense up. The only way my muscles relaxed was through deep breathing and moving very slowly onto my back. Having to do this multiple times a night was exhausting. I tried using the abdominal binder at night again, but it didn’t help. I eventually reached out to the physician assistant and got more muscle relaxers.

My goal for this stage of recovery was to start doing gentle stretching! I wasn’t as consistent as I wanted to be because of how exhausted I was. My dizziness, nausea, and tingling in my hands and feet that had started a few months prior to surgery had also returned. Being in a car still caused motion sickness, and I was no closer to being able to drive than I was before surgery. At this point, I began to struggle with my mood. I have always struggled with anxiety, but it became very amplified. I found myself very irritable and reactive, and it was hard being stuck at home with no energy to do anything. Thankfully, I have an amazing mental health therapist and community! My friends and family checked in on me regularly, and it brightened my day whenever someone came to visit.

The positives: Despite the dizziness, I tolerated walking better. I didn’t feel the need to hunch, and I was up to walking half a mile at a time. I also was able to sit up comfortably, so I got back into doing puzzles and playing the piano. My biggest event was getting my hair cut!

5-6 Weeks Post-Op

I am not at all where I’d thought I would be at this stage. My surgeon’s team was concerned about my dizziness, nausea, and motion sickness and said those symptoms are not normal at this stage of recovery. But before I dive into all of that, here are the improvements since surgery:

1. My hands and feet are no longer cold. A bit surprising, since they're still tingling constantly, but there seems to be more blood flow now, so yay!

2. I can eat normally! Eating doesn’t cause pain anymore, and my appetite is back.

3. I am not in nearly as much pain. I still get sudden abdominal and pelvic pains every so often, but they aren’t as sharp. I feel less achy overall.

4. I feel WAY more coherent. By the time I finally had surgery, I had no physical or mental energy. I still don’t have physical energy, but my head feels clear. I feel more like myself!

5. I’ve been more consistent with the gentle exercises. I can also walk up to 1 mile at a time!

6. My incision is healing well, and the fluid lump (seroma) is almost gone. Heat has been helping a lot. 

Now for the struggles… 

1. I have persistent dizziness, nausea, and headaches (my surgery team says this is abnormal).

2. My POTS symptoms have gotten worse (seems to be a common issue).

3. I’m still having UTI-like symptoms (could be normal, could point to a problem).

4. I get motion sickness while walking and riding in a car (my surgery team says this is abnormal).

5. I still have to be on the muscle relaxer so I can sleep (doesn’t seem to be a concerning issue).

6. I’m still wearing the abdominal binder throughout the day and use my Squishmallow at night to support my abdomen (normal).

7. I am at teacher-after-the-first-week-of-school exhaustion (seems to be a common issue; healing is hard work).

8. My incision is still sensitive; it feels like I have carpet burn (normal).

Because my surgery team expressed concern over some of my symptoms, I ended up doing another round of doctor visits. I first went to my ENT to get my ears checked. Both ears were popping and occasionally ringing, and my left ear felt very full. I did very well on the hearing test, and the doctor saw no fluid or wax build up in my ears. She referred me to Emory University, and the ENT there also saw no concerns and ordered a vestibular test. I also followed up with my primary care physician, who ordered a bunch of blood work and referred me to a neurologist. The neurologist diagnosed me with vestibular migraines but also scheduled me for a NCV/EMG, CT angiogram, MRI, and MRI venogram because of my pulsatile tinnitus, tingling, and chronic dizziness. My husband and I are a bit overwhelmed and stressed, and it especially sucks that I can’t drive myself to any of these appointments.

Stay tuned for updates on my blood work and neurological tests! I was hoping for my next blog post to be about getting back to normal life. Who knows, it still could be, but as of now, it’s looking like it will be another doctor/diagnosis update. One of my big takeaways from the Renal Nutcracker Syndrome Support Group on Facebook (sooo thankful to have this resource and community!) is that Nutcracker Syndrome often results in many other health problems. It’s a hard pill to swallow and can feel very unfair. But I have a strong will and a loving community around me, so I refuse to give up!