A Special Gift

I have been studying and re-reading the Bible lately as we are facing this new challenge in our lives of waiting for another heart. I have to remind myself that God is in control and to have faith in His timing. Romans 12:12, which reads "Be joyful in hope, patient in affliction, faithful in prayer" is such a simple verse, but it speaks volumes to me. In all circumstances, but especially in the one I am facing now, I will always have hope, and I need to remember to be patient and to always pray. Curtis bought me this necklace as a gift for my 10th anniversary of receiving my new heart. So much meaning behind this, and I absolutely love it! 💙

Happy Heart Birthday! (Forever Grateful)

Today is a bittersweet day. Mostly sweet, though. I celebrate ten years since my heart transplant! As you all now know, however, I am currently listed for a second heart transplant. I wish that I could be experiencing this milestone healthy with no problems, but there is no doubt that Taylor’s heart is a strong one. His heart has been put through A LOT over these last ten years, and the only reason I now need another one is because of the medications that have caused the arteries to narrow and start to close. I say mostly sweet though, because I cannot thank Taylor’s family enough, and there are absolutely no words to express my gratitude for both their wonderful gift that has given me ten extra years full of extra accomplishments, memories, happiness, and love; as well as for their unwavering support and understanding as I start the process of needing another heart. Taylor’s mom and family are truly some of the kindest people I have ever known, and they have given me so much love and have been nothing but a blessing in my life. I am honored to have gotten to know them over the years. I am beyond grateful for their selfless decision and their gift that has made me into and allowed me to become the person I am today, and I do know that regardless of what happens when I receive a new heart, nothing can or will ever change that. His entire family will forever hold a very special place in my thoughts, prayers, and in my heart; and I will forever remember and celebrate this day.

Sending so much love and gratitude out to the Fischer/Iszler family! Organ donors are true heroes that provide a second chance (or in my case, a third!) at life for thousands of people each year. You have the opportunity to be one of these individuals who make these miracles happen. Be a hero, like them, and sign up today to be an organ donor. Click on the link on the left hand side of my home page, and then select your state from the upper right hand corner and follow the instructions. Make your wishes known to your family and friends, and designate your decision on your driver’s license.  It’s that easy – and you too, can give someone the gift of life!

There is never a day that I don’t wake up and thank God and my wonderful donor family for their gift. I “start each day with a grateful heart” – literally! It is that heart that I am so grateful for!

 

 

Teeth, Kidneys, and Heart - all in a week's work!

It's been another busy week, filled with appointments. On Monday, I had to go to the dentist, which is never fun. What do my teeth have to do with anything related to my heart, you wonder? It is weird, but the health of your mouth has a big role to play when needing a transplant, I've been told. Because it is so easy to get an infection in your mouth, and because after the transplant I will be on such high doses of immunosuppressive medications again - causing me to basically have no immune system whatsoever - any infection in the mouth (or really, anywhere) can go straight to the heart and cause major problems.

To make the dentist even more fun than it already is, one of my medications that I am on right now causes my gums to overgrow. It is very painful and I've already had to have one oral surgery to cut them back, but unfortunately, they will continue to grow back no matter how many times I get that done until I am off the medication. Because of this, the typical cleaning is also very painful and makes my mouth just bleed and bleed. Needless to say, I was glad when that appointment was over! My dentist in close contact with my periodontist and it is quite the slippery slope, actually. My cardiologists don't want me having any surgery that is  not absolutely necessary, but again want my teeth and gums in good shape. There is so much that goes into getting listed and eventually getting a transplant; and because of the lovely side effects of so many medications that I am on and will be on, your whole body is affected.
There is a silver lining when it comes to my teeth and gums, though. Once I get a new heart, I will come off of the medication that causes the overgrowth, as it is currently slowing the process of the narrowing arteries and decreasing the pain associated with that. Then, once I am healthy enough, I can hopefully have the gum surgery one last time and be good to go! Crossing my fingers.

Yesterday, I had to go see a nephrologist. The cardiologists called and said they were concerned about an elevated level of protein that they found, which can be an indicator of bigger problems with the kidneys. I know that the immunosuppressant medications are not easy on the kidneys, and it is actually somewhat common for heart transplant recipients to have decreased kidney function and sometimes even need a kidney transplant, as well. The nephrologist took a bunch of blood and is going to run several tests, and then I have to go back to him next Wednesday to discuss the results. The good news is, he said from what he can see, I have normal kidney function and they will just keep seeing me to be proactive, since I will have the burst of the high doses again after the transplant; unless anything strange comes back with these tests that would indicate there is a bigger problem. I am praying everything looks normal for now and I don't have to worry about my kidneys on top of everything else.

Tomorrow, I have another biopsy, right heart cath, and angiogram. This will be able to tell my cardiologists if I am in any significant rejection currently and how much the artery disease has progressed since the last angiogram. Again, praying for slight to no changes, especially with the arteries so I can last as long as I need to waiting for another perfect heart to come around.

Thank you for all the love and support you all have shown me since letting the world know about what has been going on. Your thoughts and prayers mean so much to me!

Officially Listed!

As of yesterday, March 17th, 2015, I am officially listed for a second heart transplant! So crazy to think about, especially when I am only a week and a half away from the 10^th anniversary of my first heart transplant. I finished up the long and detailed evaluation process on Monday, and they told me that they would present my case to the listing committee, and that I could possibly be listed as soon as the next day. Sure enough, they called me and told me the news the very next day!

The heart transplant waiting list has several different statuses. They go in order from 1a (being the highest priority with the sickest patients) to 1b, to 2, 5, and so on. I believe that only statuses 1a, 1b, and 2 are actually active on the list, and the others are there, but inactive for some reason or another. Throughout the whole process, they told me I would be listed as a Status 2, because I am sick enough to be on the list, but stable enough to be at home with no intervention keeping my heart pumping. Status 1a, as I understand, is reserved for patients that are in the hospital with one or more IV medications, drips, or an LVAD (Left Ventricular Assist Device) that is keeping their heart going. Status 1b is for patients that have any of those things, but are stable enough to be at home, and then Status 2 is as described above, for patients like me. I think I was able to come to terms with the whole idea of a second transplant partially because of the fact that they were being proactive, thinking to the future, and knowing that I could get worse long before a heart becomes available being at a Status 2. Because so many people have LVADs nowadays, they come as first priority when a heart becomes available. So, with trying to avoid ever getting to the point of an LVAD means a longer waiting time on the list. I don’t know if, in my mind, this gave me time to prepare and wrap my mind around the thought, or what. But, when they called to tell me I was listed, they told me that Dr. Kia (one of the cardiologists on the team) wrote a letter for an exception for me to be listed as a Status 1b, due to my worsening symptoms and the quick progression of the CAV that I explained in the previous post.

So, that’s where it stands as of yesterday afternoon. It’s official. I am a Status 1b. I asked them if that changed the time frame that I had been telling family and friends, and they said it is just so hard to say. I could easily still wait for a year or more for a heart to come available, yet I have to be ready at any moment just for the small chance that they find a perfect match. Technically, it could be any time now, day or night. While on the list, life completely changes. The doctors don’t want me more than an hour away from the hospital at any time, now that I am active on the list, just in case a heart became available. That’s hard for me – especially knowing that it could be such a long wait. I don’t want to completely put my life on hold and miss out on important events or family vacations just because they are scheduled out of town. But, I also understand the importance of being close. I know that they are strict with their rules, but they also know that life continues to go on around me. It’s a balancing act – that’s for sure.

So get ready for the roller coaster. As anyone who has ever been on any waiting list for an organ transplant knows, the emotions are everywhere. Anxious, nervous, scared, and overwhelmed often turns to impatient, ready, and wondering if there will ever be a match, and then back again. The waiting game is the worst part. Someone once described it to me as like being pregnant with no due date. Though I’ve never been pregnant, it’s the uncertainty that could make anyone crazy. Here we go!

 

Welcome! (Our Story)

Hey everyone! I created this blog in the hopes of having somewhere to document my feelings as I go through this journey of needing a second heart transplant. It will undoubtedly be just that – a JOURNEY. Ups, downs, highs, and lows are to be expected. In addition to having somewhere to vent and post updates along the way, I wanted to bring awareness to the immense need there is for organ donors, and hopefully also inspire anyone that may be facing this journey, or caring for someone on this journey as well. You can read a little about my story to your right in the “About Us” section. As it states there, I had a heart transplant in 2005 (ironically, exactly ten years ago this month) at the age of thirteen. I was born with heart problems that were inherited from my father, who has also had two heart transplants. The symptoms increased as I got older, and I was placed on the waiting list in September of 2004, waited six months, and received my heart in March of 2005. Long story short, I had several bouts of rejection – some minor, some severe – and never did come off many of the medications that are meant to be short term after a transplant due to complications I experienced. For the first year after a transplant, you basically live at the hospital. The doctors want to see you twice a week, with biopsies once a week. (Oh how I am so looking forward to doing that again! NOT.)  Those appointments slowly becoming farther apart as the first year goes on. After that, there are biopsies twice a year, and eventually you have one big annual appointment. At least you’re supposed to. I never made it to only having biopsies or angiograms once a year, because I would always get sick or start experiencing symptoms that made the doctors worry and want to check things out, just in case. I would go a couple months with things going well, and then have another set-back. Unfortunately, that never changed over the entire ten years.

Fast forward to now. For the past several months, I have been experiencing more and more chest pain and symptoms associated with the high blood sugars and diabetes that is caused by another one of the lovely post-transplant medications, also usually stopped shortly after the transplant that I am still on. I have just been feeling crappy, to put it simply. My doctors have found that I have CAV (Cardiac Allograft Vasculopathy) which is a type of coronary artery disease commonly found in heart transplant recipients, caused by the life-saving anti-rejection medication that we are on for the remainder of our lives after transplant. I have learned that CAV is present in 50% of transplant recipients, five years following their transplant. Unlike other types of coronary artery disease, this is not caused by unhealthy eating habits, high cholesterol, lack of exercise, or any of the common things you would associate with bad arteries. It is solely a side effect of the medication. Also unlike typical coronary artery disease that can progress over a matter of decades, CAV can present itself and progress very quickly – over years or even months.

For the past couple months, the doctors have been discussing our options with Curtis and I. They have now decided that because the disease is progressing very quickly and because of my symptoms, they want to list me for a second heart transplant. According to them, once CAV has fully developed, re-transplantation is the only option, as there are only certain amounts of medication that will prolong the narrowing of the arteries. Unfortunately, it cannot be reversed, and I am already on maximum doses of the medications that help with the chest pain. They have told me that because there are so many people with LVADS (Left Ventricular Assist Devices – a mechanical heart that helps pump blood throughout the body) on the waiting list nowadays, a person like me that is sick enough to be on the list, but stable enough to be at home could wait a year to even two years for a heart. Because of that, they wanted to get me listed before there was any possibility of me crashing, or becoming too sick to even be a candidate. This is all so shocking to me and is hard for me to wrap my mind around. I am glad they are thinking to the future, but to accept the fact that I have to go through this again, a second time, with this time being so much different now that I am an adult, I am married, and the responsibilities are completely on Curtis and I, has been the hard part. When the doctors first told me that another transplant was basically the only option, I was shocked. I just started sobbing. The biggest thing that has affected me is that I needed to know that this was nothing I had done or nothing I could have prevented, which they in turn did. They said this is 100% caused by the medication that I have been on. It was just so hard to accept and wrap my mind around, because I feel like I have done nothing but take the best possible care of Taylor’s heart, waking up every single day and thanking God for guiding his family to give me this amazing gift that has allowed me to experience ten wonderful years of extra time that I would not have had if it wasn’t for his family’s decision. I have absolutely only ever honored Taylor and have never taken a single day for granted. Regardless of what happens or when I do receive another heart, Taylor and his family will always hold an extremely special place in my thoughts, in my prayers, and in my heart. They are the reason I have made it to this point in my life and accomplished everything I have accomplished in the last ten years, and nothing will ever change that fact.

I have spent the last several weeks trying to come to terms with this and how much it will change Curtis’ and my life. I do know that if I continue to feel as I have been feeling for the last while, with anticipation that that will only become worse, this is what needs to be done. I do want to feel better. I do want to live, of course, and I want to have a quality of life that I can enjoy. Taylor gave me that and it has lasted ten years, and for that I am so grateful. I am only twenty-three years old, and have dreams that I want to achieve. The biggest thing is, I want to have a family. I want to be a mom, and I want Curtis to be a dad. I know I won’t be able to carry a baby, but there are other options. (That’s a story for a whole different time – I won’t get into that now.) But point being, there are things for me, and for us left to do. I know everything happens for a reason, and I know that with God, all things are possible. Knowing that God will never give me more than I can handle and knowing that I have the most supportive and loving husband is what is going to get me through. So, here we go!