Surgery, Sightseeing, & Schnitzel

Here's a little glimpse of my month in Germany. Even though our purpose was diagnosis & treatment, I've been doing so well since my operation that my uncle made sure I got to do some exploring before we left. I even got to enjoy my favorite local foods because I can now eat & drink without pain. Only doing a little bit of walking because I really have to take it easy the first 6 months (6 weeks especially). 

Vielen Dank an Deutschland und alle, die mitgeholfen haben, diese Reise zu ermöglichen 🇩🇪 ❤️

Germany Playlist

These songs have gotten me through this journey to surgery and specifically the last 2 weeks since. I've had the privilege of meeting so many warriors also dealing with these compressions who inspire me constantly. I ask you to keep them in your prayers as they have surgery and a lengthy recovery that is not for the weak minded. I dedicate these songs to them and the others who are still searching for diagnosis & treatment ❤️💜❤️

One Week Post Op

Got these beautiful flowers delivered yesterday morning. It was the start of a much better day on this surgery recovery. My surgeon told me his patients hate him the first week, but love him the second. I could never hate that kind man who saved my life, but I definitely understand what he means. 

*Today I wore an abdominal binder & walked down to the outside garden with my physio therapist

*Starting to get my appetite back & less nausea, but still only eating a couple bites 

*I finally have all IV's out so my veins can get a break & all my bruises can start to heal

*Yesterday I got to take my first shower because they pulled my epidural & can now use a heating pad on my back 

*Sunday I had my cath & drain pulled (that made it a little more comfortable finding a sleeping position the last 2 nights)

We now have a plan to also share :)

*Friday will have CTA done to check on everything since surgery & so I can take back to my doctors in the US

*We are expecting I will leave the clinic on Tuesday (2 week mark) when I have my stitches removed

*Our original return flight was to leave on the 31st and as of now, it looks like we won't have to change it ✈️🇺🇲

My doctors and I are thrilled with the progress I've made since surgery. My surgeon did not end up needing to make the kidney pillow. He put the "graft" outside the iliac vein for my May-Thurner & Pelvic Congestion Syndromes and a graft outside the renal vein for my Nutcracker & Superior Mesenteric Artery Syndromes. The vascular surgeon who operated on me with my surgeon actually wanted to know who originally put in my iliac stent because he did such a good job. They put the exterior graft as well to give extra padding to help prevent future recompression with my EDS. It was the most validating to hear him also tell me that my Nutcracker was very rare at just how bad it was, he was almost in disbelief. My renal vein and SMA were completely pancaked. Fixing this he believed would actually improve my MALS without having to address it. No wonder my dueodenum wasn't functioning, that I had such severe pain, and that I could barely walk without wanting to pass out. 

When I hoped for this trip, all I could think about was making sure I would stay around a little longer for my husband and girls. I would never imagine that a week out from this surgery I'd get to tell my little girls that Mommy is going to be well enough to play with them again. I'm in tears in awe of God's goodness. This surgery was beyond the toughest thing I've ever had to get through in my life, but I'm truly looking forward to living life 2.0 🎉

L's Birth Story

I've been very fortunate on this journey, and specifically the Germany trip, that God gives me so much confirmation that this is the right path, His path. I know for my family & friends who care about my health & wellbeing, any surgery is risky & flying to another country for it, well of course we had to have those discussions if I didn't make it. Although I have so much peace and am ready for Tuesday, I know a few who won't help but worry about me and haven't necessarily been given the same peace I have about everything. I had this post written that I never ended up sharing back in February. I decided what better way to remind how God is there than to revisit the memories of when He has been. Also, I know so many are not getting to experience the pregnancy or delivery like they dreamed of because of COVID. This hurts my heart, but I hope I can give you some encouragement that there can be so much joy even when things turn out far from what you expect. 

I remember telling my sister shortly after we were back at home with L that God laid it on my heart that there was a reason he saved me that day. I kept that with me and reminded myself after my debilitating pain came back. You can read the post below

The past year I have learned that both my pregnancies (and difficulty getting pregnant) are actually quite the norm if you have EDS. Even my EDS doctor had a similar experience. Our youngest had her 2 year old check up this week so I thought I would share what we all went through when she arrived in case you, or someone you know, experienced a similar situation. In this post I wrote about prayers answered before we had our first little girl, W. Getting pregnant with our second was also of course a prayer answered. At 29 weeks, we had a very scary time, but God showed up in so many ways to keep our faith and trust in Him. This is the story of the birth of our youngest daughter, L, which is also a beautiful testimony of God's love and goodness through trials.

Paul 1:3-7: He comforts us in all our troubles so that we can comfort others. When others are troubled, we will be able to give them the same comfort God has given us. You can be sure that the more we suffer for Christ, the more God will shower us with his comfort through Christ. So when we are weighed down with troubles, it is for your benefit and salvation! For when God comforts us, it is so that we, in turn, can be an encouragement to you. Then you can patiently endure the same things we suffer. We are confident that as you share in suffering, you will also share God's comfort."

 

First, I would like to share about the phone call my sister made to me, I think it was shortly after we found out we were going to have another girl. She called me in the morning telling me not to be alarmed and that she had a dream that the baby was going to have health issues, but God told her that it was going to be ok. Through everything I'm about to write about and what happened, I never lost my faith that it wouldn't be ok because of that dream she had. 


January 2, 2018 I had my specialist appointment I'd been seeing since the MTHFR gene mutation bloodwork came back positive (just means you can be more likely to have high blood pressure or preeclampsia so they monitor and do ultrasounds more often). At my 20 week appointment, my doctor noticed that I did have a low lying placenta, which in most cases resolves itself by the time of labor. At my appointment that Tuesday, the placenta was still low, but plenty of time to still move before 34 weeks when we'd start having to talk about scheduling a c section if it did not. At that time he did see blood in the ultrasound and warned that it would be normal for me to have some bleeding.


A week later, I did start bleeding. Because it had been quite a bit more than just spotting and I had been having contractions the previous two days, we went to the hospital just to make sure baby was ok. They ended up keeping me overnight and it was a relief to confirm I indeed was having contractions so they were able to monitor, but also give me some pain medicine for the cramping. Best rest I got so far in my pregnancy! I was given steroid shots for the baby and because my bleeding did stop, I was able to be sent home.


The next day I had my routine pregnancy check up with my OBGYN and we discussed staying at home on bed rest and that we were at a good place if we had to deliver the baby then (I was 30 weeks and baby had the steroid shots), but that there was plenty of time for the placenta to move and be hopeful.

That night at 1:00 AM, I woke up thinking my water broke like with my first. Unfortunately it was blood, so we headed back up to the hospital. We are only 5 minutes from the hospital, which was the most amazing thing, not to mention that my mom came to get W all hours of the night when we needed it.


They monitored me all night and the next morning. My sister called me early that morning while we were waiting for the ultrasound, and she told me about another dream that she had about bleeding. It was another confirmation that we definitely needed at that time. The ultrasound still showed I had a partial placenta previa and a big blood clot in front of my cervix. With the partial, the baby only had to move 2 cm away from my cervix to try for a normal delivery. Baby was also head first and wasn't dilated yet, which was really good news with my contractions and why I hadn't needed to be given any medicines just yet to stop labor. All my blood levels came back normal even for being pregnant and having a baseball size blood clot the night before. At that time we were just watching my bleeding and contractions and keeping my cramping pain at bay. I never got tired of being hooked up to the monitor and getting to hear her heartbeat.


For two weeks I would continue having gushing and blood clots on and off moving into L&D and back to Mother/Baby after I'd start to spot. On Jan 24th (at 32 weeks), my placenta moved up to my cervix instead of away, so it meant a definite c section. In the meantime I tried Procardia to stop my contractions, but I had a terrible reaction to it and had to stop. On the 29th I got a 2nd round of steroid shots because I kept continuing to bleed, but the specialist wanted L to stay in there as long as possible. On Feb 2nd, I had 4 or 5 blood clots at a time and I was put on complete bed rest. That morning I had more gushing even with a bed pan, and then when I had another baseball size clot is when the on call doctor told me he was longer comfortable waiting and we would do an emergency c section as soon as the doctors and nurses were ready. Unfortunately they could not get a hold of my doctor at that time, but the on call doctor actually delivered my husband when he was a baby so we had peace that we were in good hands. Even writing this still is a little difficult because we're so thankful the doctor didn't wait. I hemorrhaged on the operating table and our baby had been swallowing blood.


There is a reason I didn't get my traditional first family picture. I felt when they started the c section so they had to give me ketamine, which puts you out immediately thank goodness, but I thought I'd died because hallucinations are a big thing with that drug. A few months after I was talking to my husband about what he experienced during L's birth, I mean I knew what I experienced, but he went through it and saw much more than I did of it. He admitted to me that after they took out L, he had a peace that she would be ok, but when he looked over and saw me, he didn't have that same feeling. Knowing how much blood is in the body and seeing how much I had lost on the table, he had fear. I did wake up though, and our precious little bundle also was ok, in the NICU, but ok.

I also want to share how God used so many during that very scary time. Of course the nurses blessed me abundantly and made sure I had the best room in the house (even though I kept moving back and forth). Seriously those sunrises I got to view every morning. The janitor - oh no definitely not going to get through writing this paragraph without tears running down my face - who barely spoke English, always checked on me daily and wanted to know how I was doing. The day I was getting released, she came and found me and had gone with her daughter to pick out an outfit for our baby. I will never forget her, or the food server who made sure I had whatever I needed for my special dietary restrictions. One day I was having a really difficult time staying strong and I don't even know how it got brought up, but she experienced the exact same thing I was going through. I mean down to the she had an almost 2 year old little girl at home then when she was on hospital bed rest for bleeding. God speaks through you people, I mean ^.

There's more. One of my nurses, I swam with in high school and she requested me every time she worked. The nurses would bring me desserts they had or give me treats and drinks if they ordered meals out. They would also come in & hang out or say hi if things were slow even if I wasn't their patient. A surprise visit for my birthday from my dad who lives in Alaska ended up being perfect timing. He got to the hospital on the 3rd & asked what room I was in and that's when they told him I was in the OR. My brother and sister-in-law had already planned to come in the 4th before we also knew about our L's surprise appearance so it also worked out perfectly because they were able to help watch our W so my husband could stay with me and we could visit L every 3 hours in the NICU.

W actually ended up getting a stomach bug the day I was discharged, which was also my birthday. The bug was so bad that each one of us got it and meant that we weren't able to go to the NICU until we knew for sure we were better so that was a whole week we had to rely on doctors and nurses to take care of her because no other family besides parents were allowed at that time due to flu season. I would pump around the clock so we could drop off the milk for her and I remember one time going up to the hospital and having to press the buzzard to hand it off and knowing my baby was through that wall, but I couldn't go in there. Although it was the most difficult thing we ever had to do to be away from our newborn and that long, we knew it was a blessing in itself because we can't imagine if we had brought her home right after she was born and she got sick. We didn't have a timeline for when she would be released except maybe close to her due date, which was March 21st. Knowing that you would understand our greatest surprise ever to get a call on Valentine's Day to ask if we wanted to come room with our baby girl for the night because she was doing so well that she would be discharged the next day! They gave us the biggest room in that area of the hospital and this was a picture from that night, finally getting that hospital picture skin to skin like I had dreamed and thought I missed out on ♡

I'm writing this last part for me. I will never forget how determined I was to meet my baby girl for the first time and only just a few hours after surgery I walked to the NICU (it was the requirement for me to go) and even though I started bleeding everywhere including on the floor and we had to leave quickly after, I  have no regrets. We wanted to wait to name her until we finally got to hold her, which was at 11 the next afternoon. So.worth.the.wait. I'll never forget that moment with my husband. We're so glad we waited to meet our little one before deciding on her name and that night at 11 PM visitation we got to help give her a bath. We will always be in debt to those wonderful NICU nurses and once you've seen what they do and how they love on those babies, you will have a special heart for them. We were pretty proud to take part in the March of Dimes Walk a couple months later and give back to all they gave to us.

I try to speak up about the PTSD that I had after the experience because so many people feel like it's a taboo subject, but if we don't talk about it, someone may not know that they need help. For me, I really started to notice something was going on when I would watch a show that would have something about labor or babies. I also couldn't get that fear of expecting another blood clot or bleeding to happen and I would have a lot of flashbacks to when they started surgery. I'm so very thankful that my aunt was a psychiatric nurse and brought up my concern to her. I think it was such a relief to hear that of course I had PTSD from everything that happened, it was traumatic, and there were things I could do to help.


I started slowly trying to write out about the parts that I could or start to talk about them, and then eventually I was able to tackle the harder stuff that I hadn't been able to before. I will never forget going to visit my husband's grandma in the hospital by myself after she had her gallbladder removed. I was not expecting the panic attack that I had from just all the memories coming back from the smell, to seeing the bathroom and little urine measuring hat. I remember asking my sister-in-law if she thought triggers like that would ever go away and she said they may not, but they will get fewer and far between as more time goes on. She was right, they definitely have and what actually was a beautiful I would say ending to my PTSD was when I got to be in the room and witness one of my best friends giving birth. I'm forever grateful she wanted me there and gave me that opportunity for closure.


I'm also grateful that I documented the experience and now able to write about it to share with you. As scary and difficult as that whole situation was, it was a turning point for me to really appreciate every moment and focus on what really matters in life because when I was on bed rest, the travels or things I accomplished didn't matter, it's just spending those special times with people you love.



If you think you might have EDS, please research and understand the risks during pregnancy:
https://www.magonlinelibrary.com/doi/full/10.12968/bjom.2018.26.4.217?fbclid=IwAR1Otu3h9w7xMqfYEBHZUbei-pvlC-kBn5RB29ZQL9C4o4Kwxsqkz8j-puA&


https://www.dropbox.com/s/2s0uxysnllhef97/hEDS-during-pregnancy-birth-beyond-bjom.2018.26.4.217.pdf?dl=0

https://www.ehlers-danlos.org/information/a-midwifes-guide-to-pregnancy-birth-feeding-and-eds/

May Make Medical History on Tuesday

When my husband and I wrote the gofundme and I titled it Lifesaving Surgery for Me & Hope for Others Like Me, I hoped my journey and the knowledge I would bring back to my EDS doctor would be able to help others that have not been able to get a diagnosis or treatment. Until I was finally sitting in the German surgeon's office yesterday listening to what he saw on my CTA and what he was thinking of doing to fix my problems, did I quite understand the magnitude of this. There is no question that I need this new surgery, but all I could think about was what it could mean for others who also have the same problem down the road. If it works, I will make medical history and be published.

In the last post I mentioned that the diagnostic doctor had found when I stand that I have 0% blood flow from my renal vein to my left kidney. Even laying down, it is still severely compressed and I learned yesterday that the reason it's happening is how low my kidney sits. Because of this, my surgeon has come up with a new procedure to make a "pillow" for my left kidney. He will actually use the material that is from breast implants (yep, you read that right). At the new private clinic where my surgery will be done, there's a lot of cosmetic surgeries, which gave him the idea and the ability of having access to the material. He will secure the material underneath my kidney to keep it propped up and working properly, along with the PTFE tube graft to protect the renal vein. I will also be getting a PTFE tube graft around my iliac vein. The previous stent my vascular surgeon put in has helped blood flow, but it's still compressed 50% and positioned at an angle, which my surgeon will fix. Both surgeries on the renal vein and iliac vein should help relieve my severe pelvic congestion syndrome, including my bladder issues & all the reflux and pain in my legs. 

Now for the rest of the surgery. I was so relieved to hear my surgeon's plan because it was what I prepared myself to just ask him. This may sound drastic, but I was going to see if he could just cut me open and take a look, which is actually what he is doing for the MALS & SMAS. The ultrasound on Thursday & my previous CTA does not show well enough to confirm or rule out those compressions so he wants to be sure it's not what is causing my duodenum to not be functioning. If he does see that the median arcuate ligament is pressing or too low, he will resect it. For the superior mesenteric artery he won't actually do a special procedure for that because he believes once he puts the "external stent" around my renal vein, that will increase the angle of the SMA and would no longer be compressed. Both of those procedures he has done for my other friends and what I was expecting him to do before coming here. 

Surgery is scheduled for Tuesday 🙂 We are in a hotel until Monday afternoon when I will be admitted and then my procedure the next morning. I have to add that my uncle and I met with the surgeon for 2 1/2 hours yesterday. The first thing he said to me when I walked in was "I'm so sorry, how are you are able to even be a mother to your 2 children?"  

No Longer Undiagnosed!

   

Over 20 years & 20 doctors to finally get over 20 diagnoses. Until yesterday I was still fighting to get more & actual treatment. As I'm sitting here at the hotel on my laptop in Germany, I'm reminded of the last time I was doing this. It was back in 2014 when I arrived in Germany with my husband. I would never have expected I would return 6 years later with not only explanations for all my health issues, but surgery. It's really hitting me that this is real, my answers are real. I'm excited to finally share with you my diagnoses from Thursday. I was waiting to get the final report before sharing, but was even more impressed when I received 16 pages with diagrams and pictures. Without further ado, here's some of the most important findings: 

1) Severe renal vein compression when laying down, but when I stand 0% blood flow (yes, zero, my doctor couldn't believe his eyes)

2) Swollen left kidney 

3) My duodenum is not functioning

4) Pelvic Congestion Syndrome (I've been told by multiple doctors that I did not have this & specific details of this explain my worsening bladder issues)

5) Swollen ovarian vein (8 mm) with zero blood flow

6) Tronc Réno-Rachidèn (large collateral vessel) that my body created in my spinal column trying to get more blood flow, but is insufficient (this explains my neurological symptoms I've been having)  

*Shirt from SpoonieSisterShop (10% of proceeds go to National Organization of Rare Diseases)

Alles gut heir in Germany

Alles gut hier in Germany. Now for a much needed nap at the hotel. A very long journey, but we made it!

Let It Begin

"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

This could change everything

Can you feel it now, something's in the air?

This could change everything

I know we're gonna know it when we get there

No more waiting, I'm taking the chance

This could change everything

Let it begin"

My song on repeat today. Couldn't be a more perfect anthem right now. We got final approval this morning that our medical travel waiver is a go! I can't begin to tell everyone how your prayers are being answered. God is making a path and I'm just here for the ride, as I was told last week I better "buckle in tight" because things are moving, oh are they moving. Every unknown we've had, God continues to show up in a big way. We are learning to trust and it's been so crazy how past situations have prepared us for this moment. From traveling somewhere new without guarantees to putting our faith & life in a doctor's hands. In high school & college I was the epitome of someone having to be in control, I was an over-planner and perfectionist for sure, I mean I still am, but I've learned that I'm not the one in control and I have to let go. I mean learning that I was leaving in a week kinda forced me to have to give up that control. 

What I've also learned is to trust that peace that God gives you. I've had peace about this and keep getting confirmation after confirmation that this is the right thing to do. I know for others looking in they think everything is happening so quickly, but honestly we've been hoping for Germany since a year ago when I found out about these vascular compressions. I've been praying for answers, diagnosis, & treatment since these issues started at 12. I'm actually fortunate because a lot of people I know flew to Germany just to get the ultrasound with the diagnostic doctor and then found out they should have surgery right away so I feel like I've definitely had more time to prepare. Monday night I was seriously overwhelmed about everything that needs to be done while being so sick, but my husband (& that perfect perspective of his) reminded me that even if I had a couple more weeks or months before traveling, I wouldn't be feeling any better to do it all then either. Plus, if I was feeling better who knows if I would start doubting that I actually need this.

My husband is not able to accompany me on the trip. Unfortunately his passport is expired and with COVID, there was no way to fix this for the foreseeable future. He will stay here with the girls and be able to handle the wiring of the money to the hospital that he wouldn't be able to do there. I know I've mentioned before, but my uncle is from Germany and actually traveled over to see us when we lived in Austria so we've been in another country together before. He also brought me to my appointments and the hospital back in January and took care of me after my iliac stent surgery. I'm in wonderful hands and just so thankful that he's done everything he has to make this trip happen, along with being willing to spend a month in Germany as my caretaker.

I promise I will eventually respond to everyone that has called, messaged, commented, shared, prayed, encouraged, & donated. I'll also be making sure to document my trip & experience for those that have helped me to be able to even go and for those curious about my diagnoses & treatment. Some of you have already joined my Facebook Page for this blog and although I've shared a few posts on my personal accounts on social media, from here on out I will only make updates on this blog and Chronic Pain Overcomer accounts. I've added the social media handles to the right hand toolbar if you don't have those yet. I've learned even though I want to, it becomes too difficult to individually message everyone so either myself or Christopher, will do that on here. Would love to hear feedback on what would be most important for me to include or write about when we do. 

Even though my EDS doctor cannot come along like we hoped, she has requested & volunteered to video chat when I meet with the doctors so that we can all be learning and figuring out how to help others in the US. I've also created a private Facebook group called Chronic Pain Overcomers for anyone experiencing similar health issues and want to know all the specific details of my appointments and surgery for their own journey. I may not get around to posting as much on there or answering a lot of questions until I actually leave the hospital, but I want you to know it's mine and my doctor's goal and why we felt like this trip was so important. 

The plan: 

• Flying out of the US Monday 
• Should arrive Tuesday morning in Germany
• Will get rental car & check into hotel in Leipzig (4 hour drive)
• COVID-19 test at my doctor's office Wednesday
• If everything comes back clear, will have my diagnostic appointment the next morning at 10 AM
• Depending what he sees, will then head to Dusseldorf to meet with the surgeon 
• I know everyone is curious on length of time in Germany, this is another unknown for now, but in our medical travel waiver the doctor estimated up to a month
• Once we fly back from Germany I will probably stay with my uncle & aunt for at least a week or two, not only to quarantine, but they live in close proximity to my vascular surgeon & EDS doctor in case there's any surgery complications

*Germany is 8 hours ahead of the United States (Central Time) 

*Best time to reach us will probably be early morning your time (early evening our time)

*I will have my phone on airplane mode, but you can email, message or call me on Hangouts, Skype, Zoom, or Facebook because we should have Wi-Fi at most places (my uncle will have his phone on him for emergencies & short updates)

One more song I have to share with you. This is a song that I played a lot this last year when God put it on my heart there was a reason for not healing me & so many closed doors. That His plan was far greater than the walls in my mind or the box I designed. This last week, there have been so many moments I have to shake my head and smile seeing just a glimpse of what He's capable of.

"When did I forget that you've always been the king of the world?

I try to take life back right out of the hands of the king of the world

How could I make you so small

When you're the one who holds it all

When did I forget that you've always been the king of the world"