We were flying out of Houston on Monday. Had to kind of repack last minute because they changed flying regulations and you could only take one carry on aboard. This meant the purse that I usually can bring along with my backpack was a no go. Fortunately my husband is an organizing genius (thanks to his Cub Scout days) and we were able to fit my important papers, million medicines & supplements, special toiletries and make up (allergic to most so have to bring my own), snacks, comfy clothes, and jacket all in my backpack. I actually tried to take pics and jot down everything I took along to share in another post because I know that can be a difficult process figuring out what's needed for traveling let alone surgery.
Back to the day we left, my aunt dropped us off and we showed our letters to get our tickets and get me a wheelchair. My uncle actually went to the airport the week before to touch base with TSA and agents and even got the supervisor's phone number in case we had any difficulties checking in.
We left at 4 PM Texas time...
...and arrived in Frankfurt at 12:00 PM on Tuesday!
It did take almost an hour to get off the plane and get me a wheelchair, but thankfully we were not in a hurry so it wasn't stressful. A very nice airline worker finally brought me the wheelchair and he actually stayed up with us and pushed me around to customs, picking up our bags, exchanging money, & getting our rental car.
I made this post to let everyone else know we made it safely to Germany, but the nerve-racking part was seeing if we'd actually be allowed in with our Medical Travel Waiver. The German Border Police told my uncle they normally don't give any type of letter of complete confirmation for travel acceptance, but in our case they actually would tell us we would not have a problem (but you never know if you will get that agent who's having a bad day and not feeling as accommodating).
I believe things went smoothly because we were prepared & all the due diligence of my uncle (he's really been the unsung hero in all of this), who knew & contacted the right people in Germany. Relieved could not begin to express our feelings though, and we never expected how over and beyond everyone went (like the service rep in Houston who pushed me through security and actually recognized us after we got back to share the wonderful news). I honestly thought on the way back we'd definitely have some hiccups because of how easy it was on the way down. Nope, same experience and that flight attendant even thanked me for being so nice to her that she sent me off the plane with a ton of goodies for my girls.
My uncle drove us (he knew I was in no condition to walk and try to do the train) the 4 hours to Markranstädt from Frankfurt, a small town right outside of Leipzig, where we would stay until we found out about surgery. What an amazing job Thomas did picking out the hotel for us there! It was so quaint and dreamy right next to an old church in the square and only an 8 minute drive from the diagnostic doctor's office. After we checked into Hotel Rosenkranz, we took quite the nap before going down to the restaurant and eating our first German meal. It sure was amazing although I could only eat a couple bites. We would find out why very soon.
The next morning (Wednesday) we got up and ate the hotel breakfast buffet and then headed to Leipzig to take our COVID tests at my diagnostic doctor's office. I was also told by my surgeon's coordinator that I would also need to do a MRSA test for allowance into the clinic. The COVID test was the throat swab, but oh that nasal test for the MRSA. In an embarrassing fashion as I normally do, when the poor nurse did the throat test, I accidentally coughed in her face. Thank goodness she was wearing a face shield, but I was absolutely mortified and I'm sure she was too. Remind me to tell you about my other embarrassing (funny for you) story about an incident at a grocery store when we lived in Austria. Speaking of grocery stores...
We then went and picked up some bottled water for the hotel room. We planned for me to then relax at the hotel the rest of the day to try to recover from all the traveling. Since my uncle is from Germany and still has family back there, he's quite the expert on getting acclimated to the time change so we also got a nap, dinner, and then back to bed.
I was shocked how comfortable I felt being back in Germany. I think I've mentioned before that I am not sure I'd have the confidence to have gone to Germany if I hadn't been before when my husband had to work there. Although I knew all the testing and surgery lay ahead, weirdly I wasn't stressed out. Even going to the store was just no big deal when normally I'd be so nervous.
I was also surprised how easily my German came back & enjoyed getting to have those conversations. Not everyone does know English, that is a huge misconception. It was a blessing to have my uncle to explain things at the doctor's office & the clinic. Both my doctors are exceptional at speaking English, but the nurses and receptionists, they usually do not. I'm thankful my sister-in-law told me to bring a medical picture board (paid link) for after surgery if my uncle wasn't around and I needed to communicate. I've learned google translate does not always work for explaining something.
A helpful tip if you are traveling in Germany or Austria: It goes a long way saying "hallo, spreche si Englisch?" which means "hi, do you speak English?" If you just start talking to them in English even if they might speak it, you are taking quite the chance if you will get an English response.
My close friends and family know how much I had to use my heating pad before surgery. Unfortunately the heating pad that I ordered specifically for this trip stopped working as soon as I busted it out on the plane (yes, I had tested it out before packing and it worked amazing I was so excited). I know my fellow warriors can understand the instant worry how I'd survive the long plane ride without it and it was pretty difficult. When we got to Germany I didn't want to spend money on another one that would have the European plug I could only use there and tried to do without the first night. Thankfully I told my uncle and he came back 5 minutes later with one he found for me. I'm so grateful he knew I needed it because I used that thing non-stop, even after surgery when I got the go ahead to safely use for my back.
Today was the day (Thursday). The day we'd find out if we either had COVID and would have to quarantine meaning our plans would go out the window, or if we were negative, finally finding out what was causing years of health problems and debilitating pain. Not to mention finding out if I would need and get surgery.
My sister sent this to me and she had no idea how perfect it was at the perfect time, especially rereading it now as I'm typing this post to share with others in the same situation ❤
For the ultrasound appointment it's best to try and bring on symptoms to see what's going on so I had some advice from others that they actually glutened themselves (have the same intolerance and reactions as I do) beforehand. My uncle and I found an adorable little café down the street from the office and indulged. Since I couldn't eat much as usual, we took the rest with us for me to try eating and drinking during the exam.
We checked out of the hotel (which they did not charge us any extra even though we had reservations for 2 more nights) and zoomed the 4 1/2 hours to Dusseldorf. Unfortunately all the gluten and pushing & prodding ramped up my pain & symptoms so miserable was a little bit of an understatement. Even though I hoped to update everyone when we got in that night because I had received the official report, I went straight to bed with my heating pad.
Thomas said when we were on the road the night before that he got us a room at something called "The Breakfast Hotel." Little did we know about this spread that awaited us...
At 10 we drove just a couple blocks to Clinic Bel Etage where we met with Professor Sandmann. If I thought the phone call was surreal you can only imagine what meeting him was like. He spent 2 1/2 hours with us.
He showed us the graft that he would put around my renal and iliac vein. Here's a picture so you can see the size. After all our questions were answered, the director of international communications took me around so I could also meet in person my fellow warrior friends that had surgery the previous week.
This was a picture of Eva and her daughter Kinga after we both had our surgeries and they were flying back to Romania. Kinga spoke English for her mom, but this is when I realized love needs no translation. We would just hold hands and cry. I can't explain to you what it meant for me to meet others who knew exactly what this journey entails. My uncle couldn't believe the little support group/community we've created of everyone who's had surgery in Germany or thinking about getting it there. Justin was the first one we knew who had it done at the new clinic and actually who I was following along to make me take the leap to come. When I was getting ready to fly out Monday, another friend asked me where I was departing from in Texas (she was so very sweet and I think was going to come send me off if I was leaving from Dallas). When I told them all Houston, Justin replied that it's actually where he's from. All I knew was that he had been an American living in Germany. That little detail was just more added peace and confirmation for me that this was the right path.
The rest of the weekend we finally had some down time to breathe thank goodness and take everything in. The hotel had a little foyer in the back and the weather was absolutely perfect in the 60's compared to the over 100 we were experiencing when we left Texas.
Another nice little surprise was that I think Thomas found the only bathtub in Germany haha. They are usually hard to come by in hotels, but I was very happy he did since I actually was feeling worse than ever when we got to Germany. More kidney stones and if I hadn't been there in Germany about to have surgery, I believe I would've been really afraid.
We checked out of the hotel on Monday after another amazing breakfast and was admitted to the clinic at 12:30. I even got to see Justin one more time and meet his wife and daughters before he was released. Seeing how well he was doing and feeling and the difference the surgery made for him gave me so much hope.
We were brought to our room and we were in just a little bit of awe how nice my room was and the view I knew would help lift spirits during my recovery. My window was right across a park and museum. We were able to get a double room so that my uncle could stay with me. They even had Netflix on the TV and Thomas found a few English news stations. My aunt would always joke when we called her asking about the US news because we seemed to know more about what was going on than what her news stations were sharing.
The night before surgery I video-chatted my husband and girls one last time to give each other our love. After we got off the phone, I knew the only thing that would give me peace to sleep that night besides praying over the verse above and listening to my worship songs, was writing letters to my loved ones in case I didn't make it through surgery. I've been apprehensive about sharing that, but I think it's important people know the severity of these compressions and surgery. There can always be complications with no fault of the patient or the surgeon, and with the areas that the surgeon has to operate on it makes these procedures that much more risky. The reason I chose this surgeon was not only because of his experience, but that he looks at the body as a whole, not just one separate issue. That each patient is different, their anatomy or problems are all different, which makes each procedure different. I know time and time again he has to think on his feet when he is in there operating when he comes across something that wasn't shown on imaging, much worse than could be expected, or something else going on entirely. I had a feeling this could be my case and I wanted to be in the best hands possible.
The next morning the nurses actually came in and told me they could take me back early. I woke to a beautiful sunrise, which all I could think of was the song I had been listening to on repeat the whole trip and the night before:
"Every new sunrise is one step closer
It's a sign in the sky that the fight's not over
So face the world, it's now or never
This is the moment, let it begin"
It's a sign in the sky that the fight's not over
So face the world, it's now or never
This is the moment, let it begin"
I showered and got changed. Spoke one last time to my husband who always knows the best things to say. Honestly I was just ready. The nurses came and took me in my bed and my uncle came with me until they told him he had to give me a hug and say goodbye.
They wheeled me into the pre op room where I met the anesthesiologist again. The plan was to attempt the epidural first since it is performed in a higher location than my previous epidurals that I had issues with (now I know from my EDS). Of course the first step he had to do was get an IV going and if you also have EDS you know this can actually be almost as nerve-racking and dreadful as the surgery. You go what do you mean Marlee? Please look below.
The picture doesn't show my poor hands or other arm. Three times he had to dig because my veins kept rolling. It's not his fault, it's just a thing. Are you wondering how those bruises are only from 3 misses? Well, after surgery I needed at all times to have at least 2 IV's and um, just as bad as finding veins, my IV's do not last long. I share this because it's a terrible experience a lot of us have to go through all the time.
And finally, as you know, the surgery was a success! The surgery took only 2 1/2 hours and not the 4 we were prepared for. I was in the recovery room for 5 hours before they brought me back to my room. My poor uncle didn't get a whole lot of updates not for lack of trying (they were super busy with a lot of surgeries that day), but they did tell him they couldn't believe I was smiling and laughing in the recovery room. I surprised him by being wheeled back in when he was trying to find out more information on how surgery went to update my husband.
I know what you are thinking, she was laughing and smiling, she had to be drugged up pretty good. The pain was very controlled, which I had been most worried about with my history (and the epidural did work woohoo), but I will never forget waking up and being so overwhelmed with gratitude that I was alive and grateful that I had the surgery. There was no way you could wipe that smile off my face or stop thanking everyone for saving my life, which I wouldn't even learn until later just how needed the surgery was. There's no doubt there were many people praying.
Everyone from my surgeons, anesthesiologist, and nurses did such a great job at keeping my pain under control that I actually felt ok enough to just call Christopher and my girls instead of Thomas to tell them the great news and see their face ❤
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