Tuesday, October 17, 2017

My 5th Heart Surgery and Another Hospital Stay

On Wednesday, September 20th, I went to the Heart Hospital ER because of a pacemaker problem. It's not a new problem, but it had gotten worse. One of my pacemaker leads was stimulating my phrenic nerve, which is the nerve that controls your diaphragm. That resulted in me feeling my pacemaker shocking me all the time. I am paced 100% of the time, which means that my heart needs a shock to initiate every single heart beat. If my heart rate is 80bpm, I feel it shock me 80 times a minute. It's not comfortable, and we knew it needed to be fixed. Unfortunately that meant another heart surgery. My 5th heart surgery since April. I was scheduled to see my heart surgeon the following week, but I just couldn't stand it anymore, so my doctor said to go to the ER so they could see if they could adjust some settings until it could be fixed. So that Wednesday night in the ER, they lowered the pacemaker settings enough to where I didn't feel it as much. The only problem was that they had to lower it so much that there wasn't much of a safety margin. They said they would have to keep me in the hospital if they kept the settings that low, so they ended raising the settings a little so that I could go home with a good safety margin. But they had still lowered it enough for me not to feel it as much.

Unfortunately, the relief from the setting changes only lasted about a day before I started feeling it shock me again. 

On Saturday, September 23rd, I passed out at home. Thankfully I was sitting down already and didn't fall. We called the on-call doctor again and he said to go to the ER. What happened was that the pacemaker settings were too low, so I had a couple of skipped heartbeats which made me pass out. They had to raise the pacemaker settings so that wouldn't happen again, which meant that I felt it shocking me even harder. Here you can see it jolting my body. 

I'm not sure if the video is working, so I apologize if it's not...

video



The ER doctor talked to the on-call cardiothoracic surgeon and he said to admit me so they could get the surgery done sooner than later. They also admitted me to keep me more comfortable until surgery since it was so painful and uncomfortable. It made it hard to breathe too. 

So, I was once again admitted to the Heart Hospital on Saturday, September 23rd. They got me a room really quickly and put me in the ICU Step Down Unit. They stopped my Coumadin in anticipation of surgery and they started me on IV Heparin to protect my heart valve while I was off the Coumadin. 

The hospital gets really quiet on the weekends, so not much happened on Sunday. They tried to keep me comfortable and there was talk that my surgery would be the next day.

My parents were actually out of town when this all happened. My dad had a work conference in Phoenix, so my mom went with him and then they went to the Grand Canyon, Yosemite, and a couple of other places! My aunt stayed with me while they were gone and she's the one who took me to the ER that Wednesday and then the ER Saturday when I was admitted. My parents got home around midnight on Sunday night. I was so glad that they were scheduled to come home then and that they didn't have to come home early or anything.

On Monday morning my cardiothoracic surgeon said that he would do my surgery that day at 2:30pm, so they started prepping me for surgery. I had one of my favorite nurses that day! The surgery he would be doing was a Thoracotomy. They said a Thoracotomy is one of the most painful surgeries to have, even worse than open heart surgery. But it fixed the problem!

My parents, brother and I before my surgery

They took me to surgery on time which is a miracle because hospital time is usually really behind. Surgery only lasted a couple hours and I came out with a 6 inch incision on my ribs on my left side, a chest tube, and an incision a few inches long where my pacemaker is in my chest. I also had a 3 lumen central line in my neck. They had a hard time getting a line in because I've just had so many. But surgery was successful! They placed an epicardial pacemaker lead on the outside of my heart.



I am highly allergic to the tape dressing they have to use, so I got horrible hives. This next picture is when they were changing the dressing. I was on IV Benedryl around the clock because it itched and stung like crazy. 


It was sutured to my neck so it wouldn't come out. You can see how red it was from the allergic reaction.


After surgery, they had me on continuous IV Heparin so that I wouldn't get a blood clot in my mechanical heart valve since they had stopped my oral blood thinner (Coumadin) for surgery. My Coumadin range needs to be 3.5-4 so they kept me on the Heparin until it reached that level.


The chest tube was removed after a couple of days. If you have had a chest tube you know how painful and uncomfortable they are so it's always a relief when they come out! Removing the chest tube is extremely painful but it's nice to get it out.

I got to go outside with my parents one Saturday and the weather was perfect! Don't be too jealous of my cute outfit! Haha




On Wednesday, October 4th, my INR (Coumadin level) was 3.5 so they stopped the Heparin drip and planned for me to go home the next day. Well the next day my INR dropped to 2.4 for no apparent reason. So they started the Heparin again and came up with a new dosing schedule for the Coumadin. They didn't want my INR to go up too fast or I could bleed internally, especially since I was on the Heparin too.

A week later, on Wednesday, October 11th, my INR was 3.3, which is almost in range, so they stopped the Heparin and planned on me going home the next day if my INR stayed stable. And it did! It went from 3.3 to 4.5 overnight!!

So after almost 3 weeks in the hospital, I got to come home last Thursday, October 12th!!!!!!!!!!!!!!!!

Leaving the hospital!

I think she missed me while I was in the hospital!



I'm just so grateful for the care I received in the hospital. I got to know the people who delivered my meals, the sweet lady who cleaned my room each day, and other people that work in the hospital. In the hospital, the floor I was on also has the doctors' offices, and I've become good friends with the 2 ladies who check you in to see the doctor. I would go see them everyday on my walks and they are so sweet. They bought me a beautiful necklace just because and I'm so grateful for them! They brighten my day every time I see them!

I've become good friends with the nurses as well. We have laughed together, cried together, and prayed together. On my walks I would go from nurses station to nurses station to talk to everyone!

It was 3am one morning. At 3 or 4am they do blood work, vitals, and weigh you in your bed, so I knew I would be awake for a while. They take blood that early so the results are ready for when the doctors round in the mornings. I still haven't figured out why they weigh you at 3am, especially when they have to take all your blankets and pillows off the bed to weigh you. You're all comfortable in the middle of the night and they take everything from you. Doesn't make sense.

While my nurse was taking my blood one night, she asked me, "are you a Christian?" I said yes I am. She said she asks all her patients that question because one day we will stand before God and He will ask us if we told people about Him. I told her that God is how I've gotten through all I've been through and I wouldn't have gotten through it without Him. We continued to talk about God and she asked if we could pray together. So we prayed together and she asked me to pray for a couple of her other patients (obviously she didn't give me names of the patients and she didn't violate HIPPA).

Another nurse one night asked if we could pray together so she could pray for me. I really appreciated that.

It's really nice because in the ICU Step Down Unit, each nurse only has 2 patients. That gives the opportunity for your nurse to really spend a lot of time with you! I always enjoy talking with my nurses. We talk about everything.

I had long talks with the sweet lady who cleaned my room each day. Her mother-in-law passed away while I was in the hospital and that gave us the opportunity to talk about God and life a lot.

God is so good and He never leaves us.

When I was discharged, the nurses and I were saying that it was bittersweet because they were going to miss having me there! I totally agreed! But I told them I would come visit them. Between blood work checks, cardiac rehab, and appointments, I'm at the hospital all the time. It'll be a couple more weeks until I can start cardiac rehab again.

The people who work at cardiac rehab came to see me several times while I was in the hospital and they lifted my spirits each time they came! I really appreciated them coming. When they came, there were so many of them that they filled the room and it made me so happy!

I'm also so, so grateful for all your prayers, love, support, cards, and visits! You all have been such a blessing to my family and I, and I can't thank you enough!

I truly have the best nurses and doctors and the best family and friends!!

Here are some pictures of my room. We put the cards you all sent in the window!





My parents got me these beautiful flowers!



Today I'm enjoying a rare day when I don't have any doctor appointments! It's a beautiful day!



Please keep praying for me as I continue to recover at home! Yesterday I had my blood thinner levels checked. I have it checked at least twice a week when I'm not in the hospital. Yesterday my levels were way too low (2.3), so I had to start blood thinner injections in my stomach twice a day. I do them myself. It's risky for my levels to be so low because it means I could get a clot in my mechanical heart valve really easily. That happened in June, so it's nerve-wracking. But I will trust God's plan and try not to worry. Life is hard but He is so good and has never left me. He's brought us this far, and He won't leave us now. 

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." Hebrews 10:23

Again, thank you for all your support. I love you all! 

Friday, July 21, 2017

Changes Coming

I'm going to re-do my blog so the layout and designs might change a lot until I get it how I want it! If you see any weird things on the blog design, that's why :)

Wednesday, July 5, 2017

Update!

Hi everyone! It has been a long time since I last posted and so much has happened since then. I have been getting a lot of emails and comments, asking if the stem cells have helped me. I want to apologize for not responding to you all yet. I am working on an update and will try and respond to you very soon!

I haven't responded to your emails and comments yet because I've been very sick. In March, I had sepsis from my port. I was admitted to the hospital on March 15th and was put in ICU. I was in kidney failure and on dialysis, had pulmonary embolisms in both lungs, pneumonia in both lungs, liver failure, heart failure, spleen problems, and they found a mass in my heart. The mass was infection and it had also wrapped itself around my tricuspid heart valve. After over 2 weeks in one hospital, they moved me next door to the Oklahoma Heart Hospital because I had to have open heart surgery once I was stable enough to survive the surgery. During the open heart surgery, they removed the mass of infection and tried to save my tricuspid heart valve. The mass had wrapped around that valve. After putting me off and on bypass 3 times, my heart surgeon realized that he couldn't fix the valve. So he removed it and then replaced it with a mechanical valve. It's not something they want to do on a 24 year old, but I needed it to save my life. I've had 3 other heart surgeries after my open heart surgery and had pacemaker put in because the open heart surgery was so extensive and damaged part of my heart. I'm now 100% dependent on the pacemaker. My port was also removed immediately when I was admitted to the hospital and was put in ICU.
I was in Mercy hospital for over 2 weeks and then was in the Heart Hospital for over 3 weeks, so I was in the hospital for almost 6 weeks total. I came home April 21st! I was in ICU the whole time, even discharged from ICU which rarely happens!

I just got out of the hospital after a 2 week stay and another heart surgery where they discovered that my mechanical heart valve wasn't working because of a blood clot. I was in heart failure because of that. I got home a week ago today!

We are so grateful for all of you who have prayed for me. God listened and performed miracles that the doctors couldn't explain!

I can't wait to share with you all that God has done. Thank you for being patient with me! Thank you so much for your support and prayers! Please keep it up! I'm obviously still dealing with some issues and am recovering from all my surgeries. It's a long journey and recovery, but God is with me every step. Love you all!

Here are a few pictures.


Walking for one of the first times after my open heart surgery!




10 days after my open heart surgery they put in a pacemaker



My ICU room had lots of windows and great views



It's crazy that this is all inside me. You can even see my sternum wires under my skin.





This is from my recent 2 week hospitalization. This picture was after my most recent heart surgery (not open heart). I came home a week ago today! The bear is what they give you to hold against your sternum when you cough or sneeze or something.




Walking after surgery- chest tube and all!







Put on a little makeup for my going home celebration!








Monday, August 22, 2016

New Youtube Channel!

Hi friends! I have so much to share with you! I started a YouTube channel called "Learning to make Limeade out of Lyme" and just posted my first vlog! Thank you to Ashly and Mike Costa (Ashly was on Dancing with the Stars and her husband, Mike, was a producer!) who encouraged me to start a channel! The vlog when they came to our house to give me a dance lesson will be up tonight too!! Please subscribe to my channel to get notified when there is a new vlog so you can see how I overcome Lyme! Love you all so much! 
💚 Watch my vlog to see something exciting I did today!

https://www.youtube.com/watch?v=XZrWHxoB4GE

Monday, May 23, 2016

Dancing With The Stars Coming To Me!

I have some REALLY SUPER EXCITING NEWS!! I'm getting a dance lesson from a Dancing With the Stars pro!
Ashly Costa was a pro dancer on Dancing With The Stars for seasons 1-3 and 10 (correct me if I'm wrong 😊)!
Her husband, Mike Costa, was a producer for Dancing With the Stars too and that's how they met! They now do (almost 😉) daily vlogs on YouTube, and I won a contest on their channel! 
So Ashly and Mike and their sweet kids will be coming to ME here in Oklahoma to give me a dance lesson!!!!! I can do a private lesson or a group one, so I have some big decisions!!! 
I've talked with Ashly a little since finding their YouTube channel and she is so sweet! Their family vlogs are just amazing because of how caring they are and just how they live life to the fullest! I can now say that they're just as sweet in "real life" aka, FaceTime ☺️ 
I'm SO humbled and excited to be given this opportunity!!!!! We don't have date set yet but I will let you all know for sure! 
Please check out their channel and subscribe to be sent notifications when there's a new video! They just reached 5,000 subscribers which is incredible!!! I think I'll be on their next vlog so look for that too! I haven't stopped smiling since we talked! 😊💚 it's amazing how God brings joy exactly when I was kinda down from all the side effects of my treatments and the staph infection. 

Here's their YouTube channel! Please check it out! 
https://m.youtube.com/channel/UCiLLGQbnmXT_Yk-WokqOc_Q



Tuesday, May 10, 2016

Update and Thoughts about Life!

Update on the update: I just finished 10 days of IV antibiotics for the staph infection. I also got IV fluids every day. Please pray we get the staph under control and totally gone!!!

Thank you all so much for your continued prayers and encouragement! 
I feel led to share something with you all because each of you truly make a difference in my life, but first, here's an update! 
Last week I saw my primary care doctor several times, and he sent me to the hospital again on Wednesday. The harsh antibiotics, along with the pain of the staph infection, have kept me from eating and drinking, so I needed IV fluids and medicines to help the nausea and pain. I also received IV antibiotics. I'm now on my 3rd oral antibiotic since last week, and after all we did last week, we think that we're finally on the right track to treating the staph with the right medicines! 
I will be seeing an infectious disease doctor any day now because I shouldn't have gotten staph again so fast. The infectious disease docs can do tests and biopsies to determine if/where the staph is possibly hiding, and they can also help decide if my internal heart monitor needs to come out. It's all speculation at this point, but it's possible that the staph could be attaching to the monitor, which could prevent the staph from going away. The docs can also help me figure out how to prevent more staph infections, because if I'm not careful, I could get them a lot. Hopefully they will be able to help me a lot. So that's where we are right now, and I'm so grateful for doctors not giving up on me and we pray that the staph is totally gone soon! 

What I wanted to share with you...
Over the past 2 weeks, I've let my current circumstances steal my joy and I've lived in fear. 
I don't need to go into details about how I've been feeling physically because you can imagine how I'm feeling with the normal feeling worse after the stem cell transplant + the staph infection + all the antibiotics and side effects that comes with those. 
I get really depressed when I have to be in bed because of being sick. I hardly ever stay in bed most of the day, no matter how bad I feel. Going downstairs and simply opening the back door makes me feel better because I think it helps me see that life is still going on and there's a bigger picture. I see that for me, getting out of bed is like me saying, "I am stronger this this disease and I'm proving that by getting out of bed"! I know others who do better resting in bed, so there's nothing wrong with staying in bed at all. For me, it's just not the best. The weakness from everything right now has kept me in bed a lot because I just don't have the energy to go downstairs sometimes. And being in bed during the day so much depresses me because when I first got sick, I was totally bedridden and so weak like this. It reminds me of those days where we didn't know what was wrong and it's a horrible feeling!
The past few days I've been downstairs more and am trying to stay out of bed as long as possible because it's good for my spirit, but I'm just still really weak. I did sit outside this morning and it was wonderful! 
Recently, I realized that in an unhealthy way, I'm so focused on what's happening right now.

On April 21st, the day I got my stem cells back, I said that it was a new birthday for me, a new chance at life. And I said that because it IS!!!!!!!! I said that I knew I would feel worse for a while before I got better, but that's okay because it would be temporary. I said it over and over and over. 

But I haven't actually been living like I believe that, and I've lived in fear since the staph came back. 

I am SO, UNBELIEVABLY blessed that I was able to finally have the stem cell transplant after being sick for almost half of my 23 years of life. It's giving me another chance at life, and not many people get that 2nd chance at life!

Many of you know that one of my best friends, Rebecca, died of cancer 4 years ago. She would have turned 25 this past Saturday. So on Saturday evening, my family and I went to the cemetery with her parents. I was still so weak but wanted to go, so I took a towel so that I could sit on the ground. Oddly, sitting on the ground was really different than standing there like we always do. Instead of looking down, I was looking across and it gave me whole new perspective, which I'll explain more about.

I then got a much needed big smack on my face. I sat there and wondered what am I doing?! WHY am I so depressed? WHY am I not living like I have another chance at a healthier life, because I do!! Rebecca would have given anything to still be on this earth, no matter how bad she felt. Quite frequently, she and I talked about longing for Heaven and no pain and sickness, but she and I agreed that no matter how we felt, we wanted to live on earth longer with our family and friends before we go to Heaven. 

So there I was, sitting at her grave, and I realized I've been having a pity party because of temporary things I'm dealing with like the staph infection again and feeling worse for a while after the stem cell transplant, but I have no reason to complain! 

Without the antibiotics for the staph, I possibly wouldn't be here today. I have selfishly hated the antibiotics because their side effects are far less than pleasant right now, but people all over the world die every day from something that could be so easily treated with antibiotics and modern medicine. I don't HAVE to take the antibiotics, I GET to take them. Yes, the side effects have sent me to the hospital, but it's temporary. 

I've come to realize a lot lately. 
Like I said, I've been in bed a lot over the past couple of weeks and I didn't see something that had been right in front of me until a couple of days ago. I was always looking down in my bed while watching something on my iPad or whatever, and if I would have just lifted my eyes, I would have seen this sooner. I put those on my wall for a purpose. 












Again, like I mentioned, every time I've gone to the cemetery in the past, I've stood and have had to look down at the graves. But Saturday, because of me being so weak, I had to sit down, and my perspective totally changed. If I was standing up and looking down at the grave, when I lifted my head I would have seen across the whole cemetery and would have seen the countless other graves. And nothing is wrong with that. But when I looked up while I was sitting, I saw the beautiful sky and sunset, the trees, and all of God's creations. I smiled because I just was in awe of God. It took me being too weak to stand for me to lift my eyes. 


And it's the same way with God. I've been so focused on what's going on right now and I've had my head down. I temporarily lost sight of the goal and took my eyes off of Jesus. And that's why I've let my circumstances steal my joy and cause me to live in fear. 

In Hebrews 12 it says this:
"Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne. Think of all the hostility he endured from sinful people; then you won’t become weary and give up"

No wonder I've been so weak and weary! If our eyes are not on Jesus, we can't run this race without looking down. Without our eyes on Jesus, during the race, we feel like we need to look down to see the roadblocks coming. We need to look down to see the twists and turns on the course of the race. We look down out of fear because we don't know what's coming up next. We are then blindsided at sharp turns and corners. 

But when we fix our eyes on Jesus, we don't NEED to look down because we know that we will make it safety to the end one day! He will pick us up and carry us over the roadblocks and He will hold our hand and walk with us when the road turns. Nothing surprises Him! That's how we can have perservence through this sometimes horribly long and painful race, because when we can't run on our own, Jesus picks us up and carries us! 

Also from Hebrews 12: "So take a new grip with your tired hands and strengthen your weak knees. Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong....
...Since we are receiving a Kingdom that is unshakable, let us be thankful and please God by worshiping him with holy fear and awe. For our God is a devouring fire"

I'm 19 days into the critical 90 days after transplant! I've made it 19 days!!! 
I do want to apologize to you all who have been faithfully praying for me and supporting me in so many ways, and especially helping us financially so that I could have the stem cell transplant in Germany! I want to apologize for letting my current circumstances steal my joy. This isn't the first time it's happened, and it won't be the last, but I just want you to know, I'm BACK and my eyes are on JESUS because I need to be carried through this part of the race, and I am. He's here. Please don't stop praying. Your prayers have helped carry me when I've selfishly taken my eyes off of Jesus. I'm moving on to my new life because of God! 

"Why am I discouraged? Why is my heart so sad? I will put my HOPE in God! I will PRAISE HIM again--my Savior and my God!" Psalm 43:5

If I can smile and laugh through the transplant and after, I can do it now because I have a new chance at life!!!! I'm so blessed!!!!!





I do ask that you specifically pray that the stem cells are doing what they are supposed to be doing. We don't know if they could have turned into immune cells to fight this staph, but we will be talking with one of the doctors tomorrow about that. Please pray that the stem cells are letting the antibiotics fight the staph so that they can heal the rest of my body eventually. 

One of my dear friends who has Lyme just recorded a new song called "Lift My Eyes". That's not a coincidence at all that I just heard this..

"Many are the weapons of my enemies
Right here in this moment give me eyes to see
The God of Angel Armies is surrounding me

I will Lift my eyes
To where my help comes from
I wont be afraid
I wont be undone
Youre more faithful Lord
Than the rising sun
So I will Lift my eyes
to where my help comes from

Nothing formed against me ever could invade
For you are my fortress in the darkest day
Oh I will simply rest and trust you come what may
My help comes from the Maker
Of Heaven and of Earth
My help comes from the Savior
Who saved me by his Word
My help comes from the Healer
Whose stripes have made me Whole
My help comes from the Keeper
Of this peace inside my soul
I will Lift my eyes
To where my help comes from
I wont be afraid
I wont be undone
Youre more faithful Lord
Than the rising sun
So I will Lift my eyes
to where my help comes from"




These are my 4.6 million stem cells that I received!!!!

I love you all so much and can't thank you for all you've done. "I thank my God every time I remember you" Philippians 1:4