So usually when I write a post I spend a couple days revising and editing so it becomes a little easier to read. Well this time I'm just typing one out quickly because apparently I could get a new heart at any moment.
I just had to make one of the most difficult and life changing decisions I have ever needed to make. After dinner around 6pm I received a call that Duke had found a heart for me. I had to be at the hospital in an hour from that call. I had a panic attack and could not decide what to do for a few reasons.
The obvious being that my life would be changed forever. I will have all new health issues to deal with, a very long recovery if I make it through surgery, and some crazy ass scars (which I keloid badly so scars don't look great on me).
Another reason is because I get very stressed with life knowing bills will still come in, taxes still need to be filed, etc. What will happen with my teeth as I am only a year out from surgery and still in retainers. Simple things like that cause me lots of anxiety, having to relinquish control and put trust into someone else to keep my life organize. Running a household is tough even with the both of us and thinking Sterling will be in ICU taking care of me and trying to take care of the house and bills just makes me unnerved and worried. I know he can handle it, that is just a lot to put on someone's shoulders.
The other reason is that all week I had been planning a surprise wedding for Valentine's Day. We were planning to get married this summer in Charleston and of course had to cancel those plans once we found out I was in heart failure. Sterling has been wanting to make it official for quite some time now. Knowing that in order for him to be able to make decisions regarding my health we had to do this soon. We have never celebrated Valentine's Day so I thought getting married on this day would give us a reason and be an easy date for us to remember. I reached out on Reddit for a photographer to help us out free of charge and I found one, I reached out to NextDoor for a wedding dress and someone provided one free of charge, I also found a band to perform a few songs for us free of charge (Niito...they're amazing). I had a hair appointment, outfits picked out, ring bought, marriage license application filed and then a 4 course meal at a historic house having a Valentine's Dinner Evening Party. I didn't want all my efforts, and the surprise, and the money spent on clothes and dinner to go to waste.
I called my parents to help make the decision on whether I should accept the heart or not but they were in just as much shock as I was so it was up to me to decide. Sterling kept reminding me, that my worries were about superficial things that could all be taken care of. He kept encouraging me that accepting it was the right thing to do, that is in face why we are living in Raleigh to begin with. I had about 20mins to make the decision and when you're having a panic attack that time flies. My cardiologist called to give me a pep talk, and then eventually I listened to Sterling's rational mind. How he remained so calm and sensible in such a stressful anxious moment, I have no idea, but that is one of many reasons why I love him. He's the ying to my yang.
Although the decision to accept the organ was a tough one, one we weren't quite ready for, we made it. We packed our bag, made our calls, sent some emails and started on our way to Duke. 15 mins into the drive we get a call that the transplant has been cancelled. Due to privacy issues they are not allowed to give much information but I was told that the heart could not be transported safely in a timely manner which I believe to be due to the warm ischemia time. I'll explain...
I signed up for two new studies the other day which we knew meant I would get a heart much sooner, I was just not prepared for 3 days later. The first study deals with how hearts are transported using an OCS machine. Basically instead of putting the organ on ice, doctors are able to hook it up to this machine and pump blood and oxygen through it while also pacing it. It also allows a wider range to acquire hearts, up to 2500 miles I believe which more than doubles the typical range. This study was not that big of a deal so that was an easy decision to make.
The second study involves how hearts are procured. They are taking hearts from what they call 'DCD' donors. (Donation after cardiac death) This is where it gets a bit confusing and google will probably explain it better than me. But basically the heart keeps pumping even though the patient is deceased and then warm ischemia time comes into play (how long the heart can stay in the body before being removed for donation). 30 minutes is the timeline and based on the information provided they were passed that amount of time. More than 30 minutes they declare the heart to be unsafe to donate.
The rest of the world participates in OCS transportation and uses DCD donors, it is not something a patient has to decide upon and that is why I chose to sign up for these studies. The FDA is just behind the times regarding organ donation. Knowing Duke was only 1 of 3 schools participating in the DCD study and one being Stanford across the country, we knew I would be getting the call soon. But 3 days later!? Only 100 patients are part of the DCD study that began in December, and of those 100 only half are eligible for a DCD organ due to them needing a control group. It is a randomized selection and when I signed up I was randomized to be able to receive a DCD organ. This means I am in a very small pool of people to accept a DCD within a 2500 mile range.
It is very likely we will get the call again very soon. Although this was very dramatic and I think I experienced every emotion under the sun, it was a great trial run. Next time I get the call I will be ready and will hopefully be in considerably less shock. I'm shook, stunned, mentally exhausted and just trying to breath through this. Nothing about a heart transplant is easy, getting a new organ is very difficult on the body for it's entirety and extremely risky but I have to keep in mind I have no other option. My heart is failing causing the rest of my body to fail due to lack of blood flow and oxygen. We moved across the country for this and now it is all too real. I don't think you can ever be ready for such a serious life changing event but we will be as ready as possible.
It's happening people, it's happening. I'll continue to wait patiently and we still plan on marrying at the court house Friday unless we get THE CALL again. Onwards and upwards. Love you all for the continued support. And if you want to come celebrate our marriage this weekend in Raleigh come on up...it's obviously no longer a surprise!
gofundme.com/kiele
Tuesday, February 11, 2020
Thursday, November 14, 2019
On Call
Let me explain what being on a transplant list is like. This is not to discuss my feelings in regards to heart failure and needing a new heart, that's for a later post that I can't seem to put together.
This post is to illustrate the unexplainable anxiety waiting for an organ causes not just on myself but for all involved. While on a transplant list, you are always on call, similar to a doctor. I could receive THE call, the you have a new heart call, literally any day at any time. I relate the anxiety to an extreme version of waiting to hear if you have been accepted for your dream job after having an interview, or having a biopsy and waiting for the results.
Anytime I get a call from a (919) area code with Durham listed as the city, my heart sinks and the suspense and panic set in. That could be THE call. How do you prepare for that? How do you prepare for a new organ, a new heart, that could arrive today, tomorrow or in a couple years? The pressure forces you to question if you're ready for the process, for the surgery, for a new way of life, for a lifetime of medications, illnesses, biopsies, multiple transplants and surgeries and so on.
To try and communicate the amount of stress and angst waiting for a new organ brings about for me is beyond challenging. Yet, it is equally as burdensome on Sterling and my family as well. All of our lives will be changed, not just mine, for better or for worse. Getting a transplant is a team effort, requiring multiple caretakers that are financially and physically independent. Sterling's anxiousness in regards to all of this is compounded by the fact that he does not have cell reception in his school. He's afraid we'll get the call and we won't be able to get a hold of him. We're currently just tiptoeing through life.
This process is and will continue to take a toll on us, financially, physically, but more importantly mentally. We're both doing a great job of staying busy and keeping our minds focused on other things, especially since we just moved into an amazing new rental. We bought a fire pit and a grill and trying our best to relax our bodies when we can. However, that is not to say that it doesn't cross our mind daily. Asking ourselves if we are ready. Being on a transplant list, waiting for a new organ, as taxing as it is, is only the beginning. Receiving and maintaining life after a transplant will be an entirely different beast that I have yet to comprehend and process. That is for a much later post.
One of the reasons I felt compelled to share the emotions of this process is to impart that the excitement people have for me when they hear I am on the list, is not quite as exciting for me. It's an exceedingly complicated emotional roller coaster and this is a part of it, a part that needed to be shared for others to understand me and this process a bit better. As always, thanks for reading! Much Love.
Like many of you, I hate asking for money but unfortunately finances are a large part of getting a new heart. If there is any beer money you might have lying around over the next couple of years, any donation whether now or later will not go in vain. I love you all and always appreciate your love and support. gofundme.com/kiele
This post is to illustrate the unexplainable anxiety waiting for an organ causes not just on myself but for all involved. While on a transplant list, you are always on call, similar to a doctor. I could receive THE call, the you have a new heart call, literally any day at any time. I relate the anxiety to an extreme version of waiting to hear if you have been accepted for your dream job after having an interview, or having a biopsy and waiting for the results.
Anytime I get a call from a (919) area code with Durham listed as the city, my heart sinks and the suspense and panic set in. That could be THE call. How do you prepare for that? How do you prepare for a new organ, a new heart, that could arrive today, tomorrow or in a couple years? The pressure forces you to question if you're ready for the process, for the surgery, for a new way of life, for a lifetime of medications, illnesses, biopsies, multiple transplants and surgeries and so on.
To try and communicate the amount of stress and angst waiting for a new organ brings about for me is beyond challenging. Yet, it is equally as burdensome on Sterling and my family as well. All of our lives will be changed, not just mine, for better or for worse. Getting a transplant is a team effort, requiring multiple caretakers that are financially and physically independent. Sterling's anxiousness in regards to all of this is compounded by the fact that he does not have cell reception in his school. He's afraid we'll get the call and we won't be able to get a hold of him. We're currently just tiptoeing through life.
This process is and will continue to take a toll on us, financially, physically, but more importantly mentally. We're both doing a great job of staying busy and keeping our minds focused on other things, especially since we just moved into an amazing new rental. We bought a fire pit and a grill and trying our best to relax our bodies when we can. However, that is not to say that it doesn't cross our mind daily. Asking ourselves if we are ready. Being on a transplant list, waiting for a new organ, as taxing as it is, is only the beginning. Receiving and maintaining life after a transplant will be an entirely different beast that I have yet to comprehend and process. That is for a much later post.
One of the reasons I felt compelled to share the emotions of this process is to impart that the excitement people have for me when they hear I am on the list, is not quite as exciting for me. It's an exceedingly complicated emotional roller coaster and this is a part of it, a part that needed to be shared for others to understand me and this process a bit better. As always, thanks for reading! Much Love.
Like many of you, I hate asking for money but unfortunately finances are a large part of getting a new heart. If there is any beer money you might have lying around over the next couple of years, any donation whether now or later will not go in vain. I love you all and always appreciate your love and support. gofundme.com/kiele
Saturday, September 14, 2019
Heart Transplant Evaluation
My transplant evaluation was originally scheduled for 4 days, to our surprise they were able to cancel day 4 being that the only appointment scheduled was a heart cath which i had completed back in June. That was the good news, might go as far and say the only good news of the week.
I was able to post about Day 1 on social media but I will briefly run through it again as it pertains to what occurred on Day 3. We started the day with a lengthy blood draw followed by a 2 hour transplant class. The class was a general overview of what to expect throughout the entire transplant process including pre and post surgery. Most of the information we were familiar with although we did learn about how patients are classified once listed. If the team decides you need to be listed they will then assign you a status 1-6 (1 being the most needy, 6 the least). During the class, when asking questions they answered that our personal transplant coordinator will have better answers since they know the ins and outs of my case. They made it sound as if this was the most important meeting of the week.
As for Day 2 & 3, I barely made it out of the car at the end of the day. Day 2 was primarily filled with testing, CT scans, X-Rays, Ultrasounds, Pulmonary Function (Breathing test for lungs) followed by a meeting with my Social Worker and then my Dietician. My Dietician was the longest part as she broke the news to me that I need to get my BMI down from 35 to 31 by losing close to 50lbs. How?...well that's the question. See, I'm retaining fluid in my abdomen AND I can't exercise or do any kind of physical activity, I can barely make it through cleaning a round of dishes. Also, I informed her before I was diagnosed with Heart Failure I was on a strict 1500 cal/day meal plan for months but was not shedding any pounds. She informed me my sedentary body needs 1900 cal/day and that it's possible I was undereating. She also stated that bodies sometimes find a weight they like to maintain and that it can be extremely difficult to stray from that. The plan is to go back on the 1500 cal/day for a month and if no change we will go up to 1600 cal/day and if that doesn't work we will reassess all together. I will also be making sure I spend those calories wisely, all whole grain, less simple carbs, etc. I walked away from that meeting feeling positive about achieving that goal.
Fast forward to Day 3, the most extensive and exhausting of them all. I started the day with one of the longest echo's (ultrasound of the heart) of my life; I get them yearly. After the echo and an EKG I went to the appointment I was dreading the most, the CPET, the test that initially diagnosed my heart failure at the end of May, the Cardiopulmonary Stress Test aka CPET. I had to do this test at 60 RPM's which was much higher than my last test so my legs started to feel fatigue almost immediately. I lasted 10 minutes and as soon as I stopped pedaling my entire body gave out and basically fell off the bike even though the nurses were there to catch me and were able to lay me down. I literally had no use of my muscles, even in my hands. After about another 10 minutes my body finally started to return to normal. The results? Well not what we were expecting. My max VO2 dropped from 11.3 to 10.3 within 3 months time. We were all expecting my test to improve slightly because I am now at sea level as opposed to 5000ft in elevation. That was not the case. Just so you know a normal VO2 level is considered excellent in females if it's greater than 35 and poor if it's below 21.
After all the testing, the plan was to meet the surgeon and then my transplant coordinator. The surgeon was...well a surgeon. He rarely made eye contact, just went through the steps, wasn't very informative or personable but that's why he's not my social worker. I'm sure he is a damn good surgeon just not great with people. We did discuss having only Right Ventricular failure and how rare it is to receive a transplant without failure of the left ventricle as well. There is a national governing body for transplants called UNOS and stated that the team will have to speak with them directly and plead my case to put me on the list if in fact they decide to add me on the list. And if they do decide to list me, more than likely I will fall into the bottom status, Status 6. This means I will likely need to wait until I am hospitalized before I can receive a transplant, which my cardiologist was trying to prevent.
So after meeting with the surgeon we were even more eager to meet my coordinator to put all of these pieces throughout the week together and see what she thought of my case but of course that never happened. She had something come up. We were never able to meet her and was told she would give us a call which also did not happen. I am still upset about this. Everyone we spoke with throughout the week mentioned how important our coordinator is and how knowledgeable she is about my case. This caused frustration and stress and a feeling of just being another number. I am supposed to hear from her by the end of next week. The transplant team will meet this coming Thursday the 19th to discuss and decide on my case which then the coordinator will contact me to inform me of their decision and what the next steps will be. I would have liked to meet with her beforehand in person to discuss her thoughts but it is what it is.
This was a very hard week physically and emotionally. The takeaways: 1) I need to lose 50lbs (open to suggestions) 2) It is very rare with someone solely with Right Ventricular failure to make it onto the list 3) At best I will be a status 6 meaning I won't be able to get a transplant until I become much sicker.
I'm not sure what will be next or what to expect. I'm too exhausted to think about anything anyways so we will wait until Thursday. Thanks for the continued love and support. Writing this was very difficult because my mind is not able to think and concentrate very well these days which is a side effect. I will update you all when I hear something. Help Fund My Transplant Process
I was able to post about Day 1 on social media but I will briefly run through it again as it pertains to what occurred on Day 3. We started the day with a lengthy blood draw followed by a 2 hour transplant class. The class was a general overview of what to expect throughout the entire transplant process including pre and post surgery. Most of the information we were familiar with although we did learn about how patients are classified once listed. If the team decides you need to be listed they will then assign you a status 1-6 (1 being the most needy, 6 the least). During the class, when asking questions they answered that our personal transplant coordinator will have better answers since they know the ins and outs of my case. They made it sound as if this was the most important meeting of the week.
As for Day 2 & 3, I barely made it out of the car at the end of the day. Day 2 was primarily filled with testing, CT scans, X-Rays, Ultrasounds, Pulmonary Function (Breathing test for lungs) followed by a meeting with my Social Worker and then my Dietician. My Dietician was the longest part as she broke the news to me that I need to get my BMI down from 35 to 31 by losing close to 50lbs. How?...well that's the question. See, I'm retaining fluid in my abdomen AND I can't exercise or do any kind of physical activity, I can barely make it through cleaning a round of dishes. Also, I informed her before I was diagnosed with Heart Failure I was on a strict 1500 cal/day meal plan for months but was not shedding any pounds. She informed me my sedentary body needs 1900 cal/day and that it's possible I was undereating. She also stated that bodies sometimes find a weight they like to maintain and that it can be extremely difficult to stray from that. The plan is to go back on the 1500 cal/day for a month and if no change we will go up to 1600 cal/day and if that doesn't work we will reassess all together. I will also be making sure I spend those calories wisely, all whole grain, less simple carbs, etc. I walked away from that meeting feeling positive about achieving that goal.
Fast forward to Day 3, the most extensive and exhausting of them all. I started the day with one of the longest echo's (ultrasound of the heart) of my life; I get them yearly. After the echo and an EKG I went to the appointment I was dreading the most, the CPET, the test that initially diagnosed my heart failure at the end of May, the Cardiopulmonary Stress Test aka CPET. I had to do this test at 60 RPM's which was much higher than my last test so my legs started to feel fatigue almost immediately. I lasted 10 minutes and as soon as I stopped pedaling my entire body gave out and basically fell off the bike even though the nurses were there to catch me and were able to lay me down. I literally had no use of my muscles, even in my hands. After about another 10 minutes my body finally started to return to normal. The results? Well not what we were expecting. My max VO2 dropped from 11.3 to 10.3 within 3 months time. We were all expecting my test to improve slightly because I am now at sea level as opposed to 5000ft in elevation. That was not the case. Just so you know a normal VO2 level is considered excellent in females if it's greater than 35 and poor if it's below 21.
After all the testing, the plan was to meet the surgeon and then my transplant coordinator. The surgeon was...well a surgeon. He rarely made eye contact, just went through the steps, wasn't very informative or personable but that's why he's not my social worker. I'm sure he is a damn good surgeon just not great with people. We did discuss having only Right Ventricular failure and how rare it is to receive a transplant without failure of the left ventricle as well. There is a national governing body for transplants called UNOS and stated that the team will have to speak with them directly and plead my case to put me on the list if in fact they decide to add me on the list. And if they do decide to list me, more than likely I will fall into the bottom status, Status 6. This means I will likely need to wait until I am hospitalized before I can receive a transplant, which my cardiologist was trying to prevent.
So after meeting with the surgeon we were even more eager to meet my coordinator to put all of these pieces throughout the week together and see what she thought of my case but of course that never happened. She had something come up. We were never able to meet her and was told she would give us a call which also did not happen. I am still upset about this. Everyone we spoke with throughout the week mentioned how important our coordinator is and how knowledgeable she is about my case. This caused frustration and stress and a feeling of just being another number. I am supposed to hear from her by the end of next week. The transplant team will meet this coming Thursday the 19th to discuss and decide on my case which then the coordinator will contact me to inform me of their decision and what the next steps will be. I would have liked to meet with her beforehand in person to discuss her thoughts but it is what it is.
This was a very hard week physically and emotionally. The takeaways: 1) I need to lose 50lbs (open to suggestions) 2) It is very rare with someone solely with Right Ventricular failure to make it onto the list 3) At best I will be a status 6 meaning I won't be able to get a transplant until I become much sicker.
I'm not sure what will be next or what to expect. I'm too exhausted to think about anything anyways so we will wait until Thursday. Thanks for the continued love and support. Writing this was very difficult because my mind is not able to think and concentrate very well these days which is a side effect. I will update you all when I hear something. Help Fund My Transplant Process
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