Journal entry by Lex Full —
Dynamic. This is the word that my team of doctors and surgeons have chosen best fits my case, and boy do we hear it A LOT! Oxford dictionary defines Dynamic as the following:
dy·nam·ic
I like it... I think both definitions are very fitting given my current situation & mindset. Everything really is constantly changing, sometimes almost hour to hour so we've gotten really good at rolling with the punches and not getting too far ahead of ourselves even if we receive not so great news here and there. (But, luckily we still have SO much to be thankful and grateful for... so many answered prayers that make it a little easier to forge forward even into whats still unknown.) Depending on my labs which are also in a constant state of flux, medications and the "plan" each day get tweaked accordingly. As my GCM is already progressing my symptoms are also like a rollercoaster. As I mentioned in the previous post, my heart is throwing different rhythms, sometimes jumping to even higher rates, and always making me feel exhausted. My little heart is just having a heck of a time pumping blood throughout my body.. Typically, your heart pumps about 60-65% of the blood in it to the rest of your body and mine is operating at around 10%. I don't remember the term for it, but the newest thing its decided to do is instead of the electrical current going up and down pumping from top of bottom, sometimes it will go from left to right and then flip flop leading them to believe I would need a pacemaker/defibrillator sometime down the road if that were the only issue with my heart. The biggest issue symptomatically for me right now is breathing... since my body isn't pumping blood like it should to my organs, especially my heart and lungs retain water which makes breathing difficult & my chest feel heavy along.. the fast heart rate doesn't help either.
Here in lies the struggle, they are restricting my liquid intake to 1500ml per day since the liquid being retained isn't being drank, its just already there... Luckily, they give me a medication to help get the water off but BOY does it make me pee! haha (Sorry if thats TMI, at this point pretty much all censorship has gone out the window!) They are also restricting the sodium in my diet... and if you've never looked at packaging for sodium HOLY CRAP thats an eye opener! I have gotten quite good at counting and stockpiling my mgs each day and not eating things if they aren't worth it. I AM A BOTTOMLESS PIT! Incase anyone was wondering, most fruity & sour candy is 0mg of sodium and this is GREAT for me because I LOVE CANDY! (Don't worry my dental eval showed NO cavities! I'm sure you're all shocked 😘 ) Jolly Ranchers, Starbursts, Nerds, Spree, Sweethearts, etc.. If you haven't have Haribo Sour Sghetti, OMG you need to go to Five Below! I AM OBSESSED. Thank you for the 7 bags, Courty! 😁 They did lift the restriction of only hospital food since I don't have coronary artery disease so that has been nice the past 2 days. I got to splurge and get my favorite veggie sushi rolls and ginger salad last night and I was in HEAVEN! Thank you Chelly!! 😍 I make my 3000mg a day last, thats for sure! - Quick example: some white rice is 0-5mg, an entire potato is only 13mg and ONE TBLSP of teriyaki sauce (which is my condiment of choice) is... wait for it.... 690mg!!! Needless to say we definitely skipped that. 😱 Take a look at your packaging, people. you will be shocked! haha
We are in a holding pattern right now as of course noone can predict when my shiny new heart will come, so until then we are trying to maintain where I am and adjust accordingly as things progress each day. Depending on how I progress and if/when I move up the Transplant List we could be looking at months to a year before I get my new thumper. I will hopefully move up the list as the GCM gets more difficult to manage and the transplant process can be expedited. We have several options for devices that can aid me as what they call a bridge to transplant all of which require surgery so we will "cross that bridge when we get to it"😉 😂 Machines that can help pump my blood for me, as well as back up my lungs, even as far as a Total Artificial Heart! Crazy, right! Grateful we don't have to worry about that too much right now but thankful for the options being there!
My third day here I had a Right Heart Catheter and whats called a Swan-Ganz or Pulmonary Artery Catheter placed in my neck when it remained for eleven days. That sucker had so many lines and was SO heavy... some of the connectors literally looked like some of Luke's legos, he got a kick out of that. They removed it Saturday morning and placed a PIC line in my upper arm to allow medication to go directly to my heart. It is still up in the air, but looks likely that I will require another Right Heart Catheter tomorrow with the possibility of the Swan being replaced. As I also mentioned in my previous post, the nurses and doctors here are so incredible. I wouldn't be able to explain most of this or have it make sense to me without them taking the time to explain everything to us in such detail so there aren't any additional surprises along the way. I have become good "friends" with almost all of them and they have started to "fight" over who gets me each shift. We laugh and have fun.. They all tell me that they wish all of their patients were like me haha I am so grateful for each of them and have so much respect for what they do. I feel like I have a bunch of new besties!
Over the weekend we met with my cardiac team again after they'd consulted again with Immunology, Rheumatology, Gastroenterology, Transplant ID, & my Surgeon. They all are in agreement that although my case is so 'dynamic' (only one of two EVER recorded 😇 😷 😳 of the 300 cases of GCM document) that transplant is the only route. It was a long day but it sure was worth it when we heard the words "We're confident you can survive transplant and recovery so we will be filing through the night to get you on THE LIST!" I am listed as a Status 4 out of 7 currently and depending on progression and need for device intervention I would move up on the list. We will just have to be patient as noone knows when we will get the call for my new heart. The plan as of now is for me to wait here at U of M, which could be several months. Not how I planned on spending my first Christmas and Holidays back home.. there were so many things I wanted to do! Although I'm bummed, I will just have to look forward to them next year and imagine how much sweeter they will taste then.
Physically, I am already exhausted but am excelling in PT because it is imperative that my body be strong and ready at any moment to receive my heart. It's like they said... You're getting a new heart not a new body so the importance of my physical strength (which is already lacking) is astronomical. (I wrote this yesterday and since then they have stopped my walking & PT for now due to breathing and how quickly my heart rate escalates so I am quite bummed) Mentally, I am hanging in there although the rollercoaster is exhausting. Emotionally, I have only cried a few times which were mostly during the waiting for the big meetings... I have tried not to think about the fact that in order for me to get better, someone has to pass away and what my potential donors family will go through. I think that will be what I struggle the most with and will need to rely on the love and support of my family and all of you for... I am grateful that my donor has chosen to be a donor and I will use my life as a tribute to their gift to me. Please continue the prayers and love as we haven't even hit the hard stuff yet and it will have to get harder before it gets better. We joke that I just had so much love to give that I used up all the love I had in this heart and so I need a new one! I love hard & wouldn’t change it for it the world. I can’t wait to have another heart full of love to use! I have no doubt we can get through this.
My main Cardiologist who is going to bat for me told me today that he doesn’t think he could handle what I’m handling like I am and has seen a lot of people who can’t even come close. This brought tears to my eyes because there is no other option... I want to be happy, and laugh when I can... I’m still cracking jokes and will not let GCM or anything else take that away from me. Ever. And that’s that.
Please pray for my future donor and their family, that my body will accept my new heart once I receive it and that our faith continues to hold us up. There is no giving up. I know that God has a bigger plan for my life and I plan to squeeze every last drop out it. Thank you for the outpouring of love, support, messages, comments and generosity as well as taking the time to read this novel I just wrote. We are truly in awe. I know I touched a lot of topics some of which are pretty heavy but I have not lost my spirit. Smile and do something fun for me today or something kind for someone else for me & post it on my FB, text it to me, or in a message. That way I have something to look forward to after my cath tomorrow. I’m sure I’ll be hangry as I have to be NPO after midnight tonight with No specifically scheduled procedure time since I’m an “add-on”😳💪🏽☀️❤️😘 My love to you all!
dy·nam·ic
/dīˈnamik/
adjective
- 1.(of a process or system) characterized by constant change, activity, or progress: "a dynamic economy"
- 2.(of a person) positive in attitude and full of energy and new ideas: "she's dynamic and determined"
I like it... I think both definitions are very fitting given my current situation & mindset. Everything really is constantly changing, sometimes almost hour to hour so we've gotten really good at rolling with the punches and not getting too far ahead of ourselves even if we receive not so great news here and there. (But, luckily we still have SO much to be thankful and grateful for... so many answered prayers that make it a little easier to forge forward even into whats still unknown.) Depending on my labs which are also in a constant state of flux, medications and the "plan" each day get tweaked accordingly. As my GCM is already progressing my symptoms are also like a rollercoaster. As I mentioned in the previous post, my heart is throwing different rhythms, sometimes jumping to even higher rates, and always making me feel exhausted. My little heart is just having a heck of a time pumping blood throughout my body.. Typically, your heart pumps about 60-65% of the blood in it to the rest of your body and mine is operating at around 10%. I don't remember the term for it, but the newest thing its decided to do is instead of the electrical current going up and down pumping from top of bottom, sometimes it will go from left to right and then flip flop leading them to believe I would need a pacemaker/defibrillator sometime down the road if that were the only issue with my heart. The biggest issue symptomatically for me right now is breathing... since my body isn't pumping blood like it should to my organs, especially my heart and lungs retain water which makes breathing difficult & my chest feel heavy along.. the fast heart rate doesn't help either.
Here in lies the struggle, they are restricting my liquid intake to 1500ml per day since the liquid being retained isn't being drank, its just already there... Luckily, they give me a medication to help get the water off but BOY does it make me pee! haha (Sorry if thats TMI, at this point pretty much all censorship has gone out the window!) They are also restricting the sodium in my diet... and if you've never looked at packaging for sodium HOLY CRAP thats an eye opener! I have gotten quite good at counting and stockpiling my mgs each day and not eating things if they aren't worth it. I AM A BOTTOMLESS PIT! Incase anyone was wondering, most fruity & sour candy is 0mg of sodium and this is GREAT for me because I LOVE CANDY! (Don't worry my dental eval showed NO cavities! I'm sure you're all shocked 😘 ) Jolly Ranchers, Starbursts, Nerds, Spree, Sweethearts, etc.. If you haven't have Haribo Sour Sghetti, OMG you need to go to Five Below! I AM OBSESSED. Thank you for the 7 bags, Courty! 😁 They did lift the restriction of only hospital food since I don't have coronary artery disease so that has been nice the past 2 days. I got to splurge and get my favorite veggie sushi rolls and ginger salad last night and I was in HEAVEN! Thank you Chelly!! 😍 I make my 3000mg a day last, thats for sure! - Quick example: some white rice is 0-5mg, an entire potato is only 13mg and ONE TBLSP of teriyaki sauce (which is my condiment of choice) is... wait for it.... 690mg!!! Needless to say we definitely skipped that. 😱 Take a look at your packaging, people. you will be shocked! haha
We are in a holding pattern right now as of course noone can predict when my shiny new heart will come, so until then we are trying to maintain where I am and adjust accordingly as things progress each day. Depending on how I progress and if/when I move up the Transplant List we could be looking at months to a year before I get my new thumper. I will hopefully move up the list as the GCM gets more difficult to manage and the transplant process can be expedited. We have several options for devices that can aid me as what they call a bridge to transplant all of which require surgery so we will "cross that bridge when we get to it"😉 😂 Machines that can help pump my blood for me, as well as back up my lungs, even as far as a Total Artificial Heart! Crazy, right! Grateful we don't have to worry about that too much right now but thankful for the options being there!
My third day here I had a Right Heart Catheter and whats called a Swan-Ganz or Pulmonary Artery Catheter placed in my neck when it remained for eleven days. That sucker had so many lines and was SO heavy... some of the connectors literally looked like some of Luke's legos, he got a kick out of that. They removed it Saturday morning and placed a PIC line in my upper arm to allow medication to go directly to my heart. It is still up in the air, but looks likely that I will require another Right Heart Catheter tomorrow with the possibility of the Swan being replaced. As I also mentioned in my previous post, the nurses and doctors here are so incredible. I wouldn't be able to explain most of this or have it make sense to me without them taking the time to explain everything to us in such detail so there aren't any additional surprises along the way. I have become good "friends" with almost all of them and they have started to "fight" over who gets me each shift. We laugh and have fun.. They all tell me that they wish all of their patients were like me haha I am so grateful for each of them and have so much respect for what they do. I feel like I have a bunch of new besties!
Over the weekend we met with my cardiac team again after they'd consulted again with Immunology, Rheumatology, Gastroenterology, Transplant ID, & my Surgeon. They all are in agreement that although my case is so 'dynamic' (only one of two EVER recorded 😇 😷 😳 of the 300 cases of GCM document) that transplant is the only route. It was a long day but it sure was worth it when we heard the words "We're confident you can survive transplant and recovery so we will be filing through the night to get you on THE LIST!" I am listed as a Status 4 out of 7 currently and depending on progression and need for device intervention I would move up on the list. We will just have to be patient as noone knows when we will get the call for my new heart. The plan as of now is for me to wait here at U of M, which could be several months. Not how I planned on spending my first Christmas and Holidays back home.. there were so many things I wanted to do! Although I'm bummed, I will just have to look forward to them next year and imagine how much sweeter they will taste then.
Physically, I am already exhausted but am excelling in PT because it is imperative that my body be strong and ready at any moment to receive my heart. It's like they said... You're getting a new heart not a new body so the importance of my physical strength (which is already lacking) is astronomical. (I wrote this yesterday and since then they have stopped my walking & PT for now due to breathing and how quickly my heart rate escalates so I am quite bummed) Mentally, I am hanging in there although the rollercoaster is exhausting. Emotionally, I have only cried a few times which were mostly during the waiting for the big meetings... I have tried not to think about the fact that in order for me to get better, someone has to pass away and what my potential donors family will go through. I think that will be what I struggle the most with and will need to rely on the love and support of my family and all of you for... I am grateful that my donor has chosen to be a donor and I will use my life as a tribute to their gift to me. Please continue the prayers and love as we haven't even hit the hard stuff yet and it will have to get harder before it gets better. We joke that I just had so much love to give that I used up all the love I had in this heart and so I need a new one! I love hard & wouldn’t change it for it the world. I can’t wait to have another heart full of love to use! I have no doubt we can get through this.
My main Cardiologist who is going to bat for me told me today that he doesn’t think he could handle what I’m handling like I am and has seen a lot of people who can’t even come close. This brought tears to my eyes because there is no other option... I want to be happy, and laugh when I can... I’m still cracking jokes and will not let GCM or anything else take that away from me. Ever. And that’s that.
Please pray for my future donor and their family, that my body will accept my new heart once I receive it and that our faith continues to hold us up. There is no giving up. I know that God has a bigger plan for my life and I plan to squeeze every last drop out it. Thank you for the outpouring of love, support, messages, comments and generosity as well as taking the time to read this novel I just wrote. We are truly in awe. I know I touched a lot of topics some of which are pretty heavy but I have not lost my spirit. Smile and do something fun for me today or something kind for someone else for me & post it on my FB, text it to me, or in a message. That way I have something to look forward to after my cath tomorrow. I’m sure I’ll be hangry as I have to be NPO after midnight tonight with No specifically scheduled procedure time since I’m an “add-on”😳💪🏽☀️❤️😘 My love to you all!
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