I wrote a post when I flew to Germany and had diagnosis and surgery all in one week. Here's the next month in detail about my recovery and rest of my trip before finally making it home.
Day 1 (Tuesday, July 14th):
After surgery I was pretty comfortable and not in too much pain in the recovery room or when I made it back to my room. I couldn't have anything to eat except for hot tea. I was so excited that my legs and feet were warm that I couldn't sleep for awhile. Even my uncle said they were actually hot.
Later that night is when I started to get uncomfortable because of the painful gas, but the pain was still at least under control with the epidural and IV meds. I had a sore throat and raspy voice from the tubes during surgery, but these are all normal. I also got my first heparin shot that I would continue to have daily at the clinic until I was released. It wasn't the most fun and I think the nurses felt pretty awful when they saw how bad I would bruise from them (thanks again EDS).
Day 2 (Wed, 15th - The day my new niece was born!):
That evening although I had been doing well, my nurses had to call the anesthesiologist and doctor in because I was having unbearable spasms. We think that's actually when my duodenum was waking up (hallelujah!). This is the day we were so impressed because I would have one of my surgeons check on me morning and evening, the anesthesiologist twice a day, and the nurses taking vitals and checking in at least 3 times a day unless I pressed my button and needed them more or time for more meds.
Days 1 & 2 it was important to lay flat so the nurses would come in and empty the catheter and drainage bags.
Day 3 (Thurs, 16th):
PT came and I was able to sit up and stand for the first time, even trying a few steps in place to surprise my PT. The nurses then gave me a washcloth bath and I got to put on a little make up, it was so nice! They even let me change into my own clothes. It's always a mood booster when you can do that :) I also tried laying on my right side to switch up my positions after requesting extra pillows (great tip), but it was too uncomfortable to lay on left with the drainage port.
This was a tough day. I always know 3rd day is usually the most sore, and I definitely was. I had been a little more afraid to eat because of the bloating and spasms I kept having, but my surgeon really encouraged me to so I tried two small pieces of fruit and at lunch some Götterspeise AKA jello. I also had quite a lot of phlegm and kept trying to cough it out. I would actually end up getting up myself and walking that evening to go to the bathroom. Because my pain kept seeming to increase, my surgeon actually had a different anesthesiologist come in and do an "ice test" to check if the epidural was still working. It was only working on one side so they did finally give me some different medicine to get some relief. Unfortunately that evening my two IV spots would blow and I would wake poor Thomas up in a little bit of a freak out to run and get the nurse. It happened to both sites so I would need two more placed. Just like for surgery, it would take a few attempts smh.
.This morning we tried stopping the epidural, but unfortunately after a little bit we realized I needed to get back on. They also took some blood to check on everything. I know the best thing you can do during recovery to get things moving is get up and walk so that afternoon I made myself walk down the hall with the wheel walker above (that was also used as a laptop holder for movie night) and we even ran into my PT who told my uncle he was very impressed how well I was doing. I think that may have been even more of a mood booster than the make up the previous day haha. Can you tell ex athlete?
I was in high spirits so my uncle and I decided to watch an old western I had never seen while also watching the gorgeous sunset in the background. We heard the song from Once Upon a Time in the West on the radio driving to Dusseldorf and Thomas enlightened me about Italian westerns. I was going how in the world am I from Texas and don't know about this little bit of information. Ok sorry off topic. Unfortunately a little bit later I would think I overdid it and was hurting more from the hallway walk, but looking back I now know that's when I started really feeling the fluid overload and explain the phlegm I felt in my lungs and difficulty breathing (not a normal thing to have happen whatsoever, but I had this before with my PICC line back in January and would finally realize this the next day).
Day 5 (Sat, 17th):
This day started out with some excitement. I would end up having some bleeding and clots when I used the restroom along with sharp pain, which didn't make sense because I've had a hysterectomy. It was actually very frightening for me to experience bringing back all the memories from my 2nd daughter's birth. My uncle and I related the urgency of the situation and although my surgeon was at home for the weekend, he came to the clinic immediately (he only lives 10 minutes away). Luck would have it that he originally wanted to be an OBGYN of all things. He did an exam and we knew it wasn't caused from the catheter, but we would continue watching. At this time I was able to talk to him about believing I had fluid overload, which he definitely noticed my legs swelling and agreed I knew my body and we would switch to pain pills instead of the IV. It explained my increase in pain the last few days without medicine helping and just kept getting worse.
This is when my uncle had to give me a pep talk. We both knew that I had to tough out my pain to get off the epidural so I could get it removed along with my catheter, and most importantly, not go back to the IV meds no matter what. This would be the worst day of my whole recovery and I know it was beyond hard on my uncle to watch me in so much pain. I cried, worshipped, and moaned all night. Guess what though?
Day 6 (Sun, 17th):
The next morning I felt like a new person. My friend Justin shared with
us that his surgery recovery was the hardest thing he's ever had to do,
but that all the hard things in his life had prepared him for this. No
doubt I felt the same way, but staring at the frames I brought of
Christopher and our girls, helped get me through. It was a much better day and I was able to get my cath and drain out. Thomas even surprised me by bringing me some gelato he found right next door. When the other surgeon came by to check on me (also was a swimmer), he told me he couldn't believe how well I was doing so far. It was the huge inspiration I needed.
The best day so far, I felt pretty good, and had beautiful flowers delivered to my room. Because I was able to get my epidural removed that morning I was able to have my first shower! The nurses wrapped up my wound and although it had to be a short shower, probably one of the best showers of my life. Professor Sandmann removed my previous bandages and I got to have a look at my scar before getting new bandages put on. My physical therapist Konstantin came by and I even walked some stairs without feeling like I needed a cane like I did pre-surgery.
Week 2 (Tues, 21 - Mon, 27th)
I'll
never forget on Tuesday (one week after my surgery) my other surgeon
Al-Maqablah came by and said 2 weeks! Are you ready to be discharged? I laughed and kindly reminded him it had only been a week :) That's a perfect
example of how shocked we were all how well I was doing already. I got to have the proof on Friday when Al-Maqablah performed an ultrasound to check all my velocities to make sure blood flow was fixed. It was!
And this was one of my favorite meals the cafe in the clinic would make me. Ginger soup with fresh mint tea. With food, I started to slowly get a little of my appetite back the 2nd week, but there was a lot of trial and error where I'd eat a little more than I had and then not want to eat anything else for the rest of the day. I was so grateful for the selection of healing and low inflammation foods I was able to choose from. I even got to try buckwheat pancakes (blinis) with a homemade date syrup one day. Not to mention of the servers actually had a friend who was a chef that just moved to the US to work at a restaurant on a ranch in Fredricksburg. He got a kick out of my cowboy boots most of all ;)
Because I was doing so well we felt comfortable letting Thomas make the drive to
surprise his mother who lived 6 hours away over the weekend. She had just had major surgery the month before and with COVID travel restrictions we really had no idea when he'd be able to make another trip. It worked out perfectly. On Sunday I had my stitches out and didn't have to keep a bandage on so I decided to try exploring outside the clinic and walked to the museum across the street.
On Monday, the day of discharge, I got to meet my last friend, Cecilia from Spain, when she checked in. She has 2 daughters as well and gave me so much encouragement having to leave my girls. It helped tremendously having other people that went through surgery share
what they experienced to know what's normal and what to expect and the only reason I'm sharing this post. The four friends above I got to meet in person I will never forget. It's hard to describe how much they mean to me and the impact they had on my life even though we all live on separate ends of the world. There are a few other warriors I haven't had the privilege to meet in person, but dedicated time and energy to be there for me and support me preparing for the trip, when I was in Germany, and after surgery. If you are one of those reading this, thank you.
Professor Sandmann ordered a CT to be done to make sure all looked good after surgery and that I could take back to my doctors here in the US. Looking at this picture brings me to tears because I can't tell you how many times I waited to have imaging done praying that it would finally show what's wrong and they never did and I had so many. Just because a scan says "normal" does not mean it's normal. I repeat. It takes the right person to know what to look for. Don't give up.
After my CT Professor Sandmann even showed me on a computer to point everything out and let me see the compressions were fixed. Honestly I don't know a lot of surgeons that do that. And yes I had my previous CTA ingrained in my brain so I instantly could see the difference.
We took a picture and said goodbye. A perfect example to show how humble this man is even thanking him, he replied "oh I didn't really do anything." No Professor Sandmann, you believed my pain and you saved my life.
Week 3 (Tues, July 28th - Mon, August 4th)
After I was released from the clinic we went to check into the Auszeit Hotel where we stayed at before my surgery so we'd be close to the clinic just in case. I mentioned their buffet before, but you can imagine how excited I was to try it out with my duodenum functioning?! Although we were there during a Pandemic, they were amazing with precautions and just the nicest staff ever. If you have any food intolerances or also like to have healthy options (or you just want to indulge as well), you have to stay here. No I am receiving no perks, we just had such a great experience.
The
next day I was supposed to go pick up my surgery report to bring back,
but unfortunately it wasn't ready (they were kind to translate it to English for us) so my uncle took me to THE go-to
shopping experience in Dusseldorf - Königsallee (the "King's Avenue). Seriously it was such a pleasant surprise how similar my uncle and I travel and he would show or take me to things I would have picked myself. If you need a travel host... ;)
A short drive from the hotel, my uncle had found an area with a bunch of gardens and a couple restaurants. The weather was so perfect that last week there. This is when Thomas would talk me into trying German goulash. It was so delicious I picked up a couple packets to bring back to the states.
I returned the favor by making sure Thomas tried a Döner box. Ok honestly I just had to have one before we left Germany because my husband and I loved them when we lived in Austria. Yep, just as delightful as I remembered. If Döner isn't really your thing, you can also get the best pizza there and FYI they use salami instead of pepperoni. Do not ask for pepperoni or you will have a very confused look on the server's face.
We would stay in Dusseldorf until Thursday making sure I had no complications and then headed to Frankfurt to stay the night before our morning flight back to Texas. I would find out even the 2 1/2 hours in the car was really not very pleasant on how it made me feel afterwards.
Here was my 3rd week update when I arrived in Houston. I was glad we already planned for me to quarantine and stay close to my EDS doctor and vascular surgeon there because there's no way I could've traveled the whole way back after that trip.
Because the rest of the weekend and the next week I did a whole of this ^. That traveling was rough. I found out a lot of friends ended up in the hospital after flying home so I was fortunate as tough as it was, I knew everything was normal. Plus, I started finally feeling better after all that rest and we felt safe for my husband to drive down to take me back. We were soooooo ready to be reunited.
For the last leg, my husband made the most awesome little pallet to keep me as comfortable as possible. We made a pit stop around half way and decided I needed a little pick me up when the attendant told me the coffee was on the house. That is just another example how I was blown away by everyone's kindness this whole entire trip. So many people blessed me and my family and it I don't think I'll ever stop being overwhelmed with gratefulness.
Finally home sweet home 4 weeks after my surgery! The girls made me the sweetest little surprise, a flower stamped bag (thanks Millie). The next week would be another tough one recovering from the drive, but resting always did the trick. My abdomen would just feel so sore and tender, even changing sides to sleep would be uncomfortable. At that time I was safe to use a heating pad on my stomach again and soak in a bath so that did make a big difference. I will mention though who knew that you use so many abdominal muscles by soaking in the tub?
The first week of surgery I kept repeating what a doctor had said that recovery can feel like one step forward, two steps back. Then I saw this picture and I was like that's EXACTLY what recovery is like. Some days you feel on top of the world, and then other days you are reminded you have a long road ahead, but I'm incredibly grateful for this road. I used to never think I could say that I was thankful for my suffering, oh how God has done work in me because I can say now say that I am.
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