A Perfect Day With a Heat Transplant/A Perfect Day Without A Heart Transplant

I got this idea from the excellent blogger extraordinaire Josh at his blog "Welcome to Joshland" (http://www.welcometojoshland.com/2010/08/my-perfect-day-stolen-post-idea-from.html) you have to check him out, his is an all around cool guy and has funny blogs, medical videos, etc. and is an inspiration for people with life threatening illnesses. He has struggled with Cystic Fibrosis and Cerebral Palsy all his life. I am jealous of the CF community because they have such a great community, the heart/transplant community is just starting to build up, but is not nearly what the CF community is. One of the things I would like to work on is to make my community as great as their, to provide support to my fellow patients. Josh also inspired me because my best friend's brother also has Cerebral Palsy and has had major struggles his whole life, so he has taught me a lot more about it. Anyways on to my post:
A Perfect Day With A Heart Transplant:
My perfect day is actually a day spent at the doctors office. I know that sounds so weird, who wants to be at the doctors, right? But, it is a whole day that me and my mom spend alone, together, we talk together for about an hour there, have lunch together-talk, talk in between appointment, and then talk in the car ride home. We treat each other that day, the hospital is in a fun place, Santana Row, so we go shopping and go out to a great lunch and just get to spend quality time together and indulge. It makes actually being at the doctor, and the pain (like if I have to have a heart cath) so much easier. At the end of the day I don't want to leave my mom.

I honestly don't know where my life would be if I did not have my heart problem. I think I might have gone to art college for Jewelry or fashion, I either wanted to design purses or wedding dresses. I know the whole fashion thing sounds weird since I am not all that fashionable of a person, but I love to dress other people, not myself, and I love purses. And I know that it sounds weird to want to design wedding dresses if you are not crazy about weddings, but it was actually for specific people.
But since I have my illness, I have really gotten interest in medicine. I think that if I had the stamina to get through medical school (to get through the long hours and then residency) I would do that. I would love to go now, but I know if that is really a possibility. I am somewhat glad I have my illness because it sort of awoke me in life. I went from a really fake life, not really doing anything to help society, (I hope I don't offend anyone by saying this) but what does a hair dresser really do to help people, it is a really fake job, you constantly have to tell people they look amazing-even when they don't. I feel like when I become a nurse I will be able to help my fellow transplant patients, like really help them. I have a lot of patience and compassion for people, which some people in the medical field do not have and that makes being in the hospital a lot harder.
Okay, so know that I have actually written this post I realize this is not at all how I meant for it to turn out. Part of it was about a great day with a transplant, and part of it is how my life would have turned out without an illness. What can I say, my mind still goes in a million ways, hahah.

A turly inspiring person

So normally I would not write about fellow heart transplant patients 2 posts in a row, but these two ladies just struck me. This lady I am going to introduce you to is so inspiring. She won this years essay contest for the Ride of a Lifetime contest, after you read her story I will explain why she touched me so much!






Jennifer Shih
Atlanta, GA
Heart Transplant Recipient

The phrase “the best laid plans of mice and men often go awry” from Robert Burns is very fitting for transplant patients. I was a Pediatric Cardiologist fellow 5 years ago when my plans went awry. I had just finished 20 years of schooling, and 3 years of pediatric residency to fulfill my dream of becoming a pediatric cardiologist at Cincinnati Children’s Hospital, a very long-term plan. While on call one night, I felt a little tired and a was a little short of breath after climbing a flight of stairs to my office, so I decided to perform an echocardiogram, an ultrasound examination of the heart, on myself. I found unexpected fluid around my heart, which was strange since I had never been sick in my life. In fact, I was the perfect doctor because I rarely seemed to catch illnesses from my patients.

Because of the fluid in my heart, I decided to take myself to the ER. It was a good thing that I did because I went into cardiac arrest 6 hours after I performed the echocardiogram on myself. At that point, I underwent emergent treatment and a med-flight to the Cleveland Clinic. Upon arriving there, I arrested a few more times and my heart could not be shocked into working order again. To save my life, I was brought to the operating room to have a BiVAD placed to keep me alive until a lifesaving heart could be found to transplant. Since I essentially did not have a heart anymore, I lived in the ICU until I heard the news a heart had been found for me. It had been about a week since the time I was completely normal to finding out I would die without a heart transplant.

After my lifesaving transplant, I recovered for 3 months in the hospital and 2 years on disability. I wasn’t able to practice pediatric cardiology anymore due to the activity and risk of infection exposure. In that time I started the Have a Heart Benefit Fund with my friends. We raise between $10,000 and $20,000 each year to help fund transplant patient care, education, and research. I have always loved helping people and this has been a great way to show my gratitude to donor families as well.

I now have my heart transplant care followed at Emory in Atlanta, have gotten married, and work as a pediatrician in the neonatology department at Emory, while running the benefit. My transplant has made me a more empathetic doctor, since I can truly understand what it feels like to be a patient. It has also made me live life to the fullest even more than before and not take any of my relationships with family and friends for granted. I am forever grateful to those who give the Gift of Life.

Jennifer inspires me so much for so many reasons. She literally went as far as she could go as a pediatric resident and now is a neonatologist. When I started getting ill a lot and had to be around a lot of bad doctors, I decided that one day I would like to be a doctor and my long-term goal is to be a doctor, but I never though that would be a possibility since being a doctor is physically demanding. Reading Jennifers story just kind of made me realize it could still be a possibility. I have had my hopes set of pediatric cardiology, but in the last few months I had been thinking neonatology because the babies are so small I can physically handle them and they are less likely to be infectious.
She inspired me that she took the time off of work that she needed, she went back to work as a Dr. (she did not just get married and "quit" as a lot of young women do, while she was recuperating she volunteered, and she is giving back).
Her story just gives me a better picture of the future of my tx!

Hannah Jones-What would you do if you had been sick all of you life

So, a lot of the time I write when I am somewhere that I do not have Internet connection (I know-today where in the world could that be?) with the intention of uploading it the next day. I have (sort of) followed this little girls story and saw a special update on her, so I wanted to write a little bit about her and how I feel about her situations-which I wrote a week ago.

09/14/10 Hannah Jones
(If you are in the transplant world) unless you are living under a rock you have heard about the 13 year old girl from the UK who refused the heart transplant, but later when she became ill decided to take it. It outraged many people that this girl "refused" the transplant and then days before dying changed he minded and decided to be listed-potentially taking the heart from another person who had always wanted to live.
Tonight there was a special on Hannah and her family, 1 year after hear transplant. Hannah had AML (Accute Myloid Leukemia right after she was born, the Chemo ruined her heart and she developed Cardiomyopathy). What Hannah really said when she was first offered to be listed that she did not want to be listed then-how she said it on TV did not make it sound like she was ruling ever getting the transplant.
So, why would anyone care about this? I think Hannah was really smart to wait until she was ready to have the transplant. When I was 15 years old, at Lucille Packard, the transplant doctors tried to push me to get the transplant and I am so glad I did not get it. A transplant is truly a life changing event that you must commit your life to, and if you are a teenager you must have the maturity and the will that you want to survive. Waiting for the transplant to see how sick you could get without it makes you realize how much you needed it, how you really must take you medications, and how it was the right time. You hear so many stories of people who get Tx's who lose them because they do not follow their doctors orders (mostly do not take their medications). It is really sad because usually these people are depressed because they have just been through so much, the surgery in itself is a huge life changing event, then the medication makes you sick, and then the change in work, family dynamics, etc. But if the doctors had knowingly had given Hannah the heart earlier, she might not have taken the medication, this could have resulted in a wasted heart, that could have gone to another sick child, that would have been really sad.
I somewhat feel that I can relate to Hannah. Although I did not have cancer as a child, I have been sick since I was an infant and my parents has drug me to all sorts of doctors to figure out what is wrong with me. When I was about 17 years old I just got to the point that I did not care anymore if I got the Tx or not, I did not want to ever see a rude doctor, needle, or hospital ever again. In a way I was a lucky sick child because I was never treated like a sick child because we did not know I was seriously ill until I was almost 16 years old. I am happy for my heart transplant buddy Hannah, we are both about a year out and doing well!

Feeling So Much Better!

I am feeling so much better, back to being a human again! I am finally getting my medications "drawin in" to the right dosage and I am feeling better than I have in years. Helping my grandparenmother out (since she can only use one arm for 2 more months) has really tired me out, so I decided I did not need to use the sleep medication anymore. It has cut my migraines in half! Which just generally helps everything else.
I finally convinced the gastro to move my appointment to today, so I have been holding the food waiting to get the upper endoscopy and biopsy. I am hoping they don't find anything, but I am hoping they find the cause of the nausea and give me a magical pill to cure it that makes everyting better.
I have been doing so much, and I am so excited that I am able to do so much more! I am 99% sure I am getting a road bike for my re-birth day in Nov so I am so excited to get to use that and just generally get to get out and do stuff!
This week I have the TRIO meeting tomorrow, and Tuesday I get to see the Tx group at Kaiser, which I havent see all summer.

09/03/10

09/03/2010
So I have had one crazy busy week full of doctors appointments, cycling, and running errands. I had five doctors appointments this week, I have already been on four rides, and we ran errands everyday, I did not have one "down" or not busy day. This was the first day that I took a nap in the afternoon, and now it is 11:20 and I can't sleep. I think if I keep up with this I can stop taking the sleeping pills!
The rides just got better and better each week, I got better and better, faster and faster each week. I finally fell like something is getting better-I was feeling like I could not get stonger- but after I could climb the hills and do the same rides way faster-I figured something must be going right.
The doctors appointments went pretty well. They started on Tuesday with a pain managenet appointment. It was an "intake appointment" to get introduced to the team and their system. I got switched to a new medication called Opana-which is a mixture of Oxycodon and Morphine. It is to get me on a more scheduled way of taking pain medication, I was just taking Percocet/Oxycodon when I felt like it, which was not working because I did not want to take it-or really know when it was appropriate to take it, so this gives me more of a schedule to take it.
The next appointment was with a social worker as a therapist. One of the things that I think more thansplant centers need to have is a Psychologist on staff that is for before and after transplant care, the Psychologist at my hospital is mostly for transplant evaluation. She was extremely nice, she was close(er) to my age and we connected really well. At first I was aprehensive about going to her because she is working on her hours to get her LCSW, but she is great, and gave me great refferals. I feel this is a good time to go to therapy, before transplant mostly the doctors made me feel like I did not have an adequate problem and that I was a whiner if i went to therapy. Now that I have meet others, I know that this is a major life changing event and that it is okay to go to therapy, and probably a good thing to do. Spending so long in the hospital, and then away from home and friends and family, now not being in school and work for so long, having major surgery, and now being on all of these medications, and having all of this responsibilities has just put a lot on me and I think that it is a good idea to talk this through with someone. The only thing about this is that almost no one knows that I am going, my parents, my sister, my bff Kara, and anyone reading my blog-which I have know told anyone about. I go to a hospital 45 minutes away, where I know I will not see anyone I know, but I am glad that I did because I do not have to worry about seeing anyone that I know and I found a great social worker.
That afternoon I went to a class on sleep hygiene. It was ok. Every doctor I go to tells me I need to go to this class, and keeps putting in a refferal for me to go, so I just finally went. It was ok, the only thing I learned was that I needed was that/thought about was that I just need to stay out of the house, tire myself out, not nap, and stick to asleep schedule-pretty generic.
The next day was to a psychiatrist to manage my medications. He was very nice. I was first given prozac and a beta blocker to help with my migranes. I did not have depression or hypertension, but the mixture of the two are supposed to help with migraines. The combination did not work and I was taken off the beta blocker because my blood pressure was too low and was given Topiramax for migraines and I am currently on an increasing schedule, but they have forgotten to take me off prozac. At a lot of doctors appointments I go to they have you fill out this form that has you select on a scale the range of tiredness, lack of energy, trouble sleeping, loss of intress in things you used to like, being sad, etc.- it is the depression test. So we talked a lot about my symptoms, most of them are just tirdness,lack of energy, trouble sleeping which every doctor has said that I am depressed, but I don't think I am depressed becuase I am not sad and I have not lost interet in what I used to like. I think the other symptoms I do have are side effects of medications, the other side effect I have is anxiety, which I know is cause by the prednison. I know it is caused by the prednisone because when I go on high doses it gets worse, but when it gets lower it doesn't get as bad. So he tried to just tell me to "work through my anxiety" and I just bluntly said I wanted a pill, and he gave me on, and I think it is working. So that is nice.
And sometime inbetween there I finally got an appointment with a clinical pharmacist. The clinical pharmacist was able to help my mothers friend a lot, but the one I talked to was totally freaked out by my medication list and was not even willing to see me, so that was sort of a downer for the week. But the rest of the appointments were great. One of the reasons I wanted to see the clinical pharmasist was to see if she had a better idea for a schedule of how to take my medicine because my nausea is getting worse and worse, I have an upper GI scheduled for the end of the month, but at this point I cant wait that long, so I think if the Dr. doesn't tell me by the end of Tuesday that he can do the Upper GI that week I am going to urgent care or the ER to get it done. The Transplant team is just like: "Oh, you are just going to have to live with this nausea for a year to 18 months" I had bad nausea before transplant, but not as bad as this. I am just waiting for my medication to come up.
So back to good things. I am hoping if it is cool tomorrow, to ride at least 20 miles. I really want to do the 64 mile Solvang ride in November and need to rack up some more miles. I have rode over 20 miles, but not in about 3 weeks. I would love to do that, it would be exactly 51 weeks after tx and in honor to Ruben.
I know I have said this many times before, but each day, and each stumble that I come across, I realize that I could do so well working in the transplant field. I am getting so much experience as the patient, things that a person that did not go through this would not know.
Jackie told us that she gets off December 22-26, I am so excited she will be home for Christmas, but not my new birthday, I am hoping maybe she will have those four days off and she could fly home? I would love if my whole family could spend the 19 and 20th with me.