Saturday, October 28, 2017

Grateful For Them

This is my incredible heart surgeon and his equally incredible nurse practitioner! I wouldn’t be here today if it weren’t for them. Words can’t express how grateful I am for them and we’ve become like family. They’ve really touched my heart- literally and figuratively haha! They truly care and would even call the ICU nurses at night just to check on me. One day he came to see me in the hospital on his day off. Thank you God for giving me such compassionate, skilled, and dedicated doctors. I will possibly need more heart surgeries in the future (nothing soon we hope), and I wouldn’t want anyone but him doing them. I am forever grateful 


So I saw my heart surgeon yesterday and also got to see some of the nurses who have taken care of me! I had blood drawn so I got to see the ladies who work in the lab. I've gotten to know them really well too! I also saw a lot of other people who work at the hospital that I've become close to. Every time I go to the hospital it's like social hour because I know everyone! It makes it more fun to go! I even had small thank you gifts for my surgeon and nurses! I will never be able to thank them enough! 

 This is my chest x-ray from yesterday. I’m always amazed when I see my chest X-ray because it’s proof of all that’s happened. You can see the new pacemaker leads that my doctor put in on the right during my latest surgery which is pretty cool to see! God is so good and has carried me through everything! 



My first official outing besides going to Dr’s appointments was to see Ralph and Gladys yesterday! We go to church with them and my family has known them for so long. Gladys always sends me the sweetest cards, so I’m so glad my mom and I got to visit them! I’m so grateful for their encouragement and example they set for how to live for Christ. They are a joy to be with! 



My parents and I even went out to dinner Wednesday night too so it was a big day for me!
The night on Wednesday ended with a quick trip to the Heart Hospital ER, but I’m okay, just needing to figure out how to control some heart episodes I’m having. Nothing major to worry about. Pacemaker is working well, valve is working well, and my heart is okay! It’s always nice to hear that. 

Thank you for your constant prayers and encouragement! It means more than I can say 

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...





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