I can't believe it's been so long since I have written!

A big part for keeping this journal is to be able to look back on my "journey" and see the progress I have made.  Another reason is to give hope to new transplantees.  When I was first transplanted and even during the wait, I had absolutely no clue what life would be like after, so I hope to be able to provide some insight into what it might be like.
I feel like my life has definitely made a big turn, I feel like I am back to normal.  I still deal with some post transplant issues (mostly pain, anxiety, and fatigue) but I push through and I am going to school full time and working more than full time!
I feel like I have been able to do all of this post transplant because I wanted to so badly.  I decided that I was not going to let my health consume me, I would have a life after-hopefully resume the life I was leading before!  I did not sit around and "wait" to recuperate, I took advantage of EVERY opportunity given to me and used it to get back.
This past summer I started a "real", adult, full time job at the hospital where I got my transplant (the childrens' portion of the hospital)!  I am a real adult with benefits!  Haha.  I actually did not know if I would ever be able to get back to that level of health and hold a real job.  Also, I started back to college Fall 2012 and I will be graduating this summer with my bachelors (as long as I get all my classes.  I would have actually graduated this past summer, but I could not get my classes!)!  These two things have been my biggest accomplishments.  I am very proud of myself that I was able to do it.
Heart and health wise I am doing fair.  Almost 4 1/2 years out and I don't have ANY coronary artery disease-that is HUGE!  I also have not had rejection in about 2.5 years!  For me that has been amazing!  Getting on the right medication has been huge-I still have to get monthly blood work, so my dosages of some medications change often.  Because I had so much rejection, it has caused slight damage to my heart.  I actually have Restrictive Cardiomyopathy (diastolic dysfunction) again-the disease that took my first heart.  Its not at a crazy stage, and I can still do quite a bit, so I am not very worried about that.
I do have some other smaller stuff going on, but a big thing I have right now is anxiety.  I feel like it is so taboo to talk about mental health at all and it is hard to talk about.  I never had the anxiety before transplant, but now I have it all the time.  It is very hard for me to deal with-I would give anything to get rid of it.  It can be all consuming.  Hopefully, one day, very soon, it will just disappear.  

02/13/13Where should I even begin?

02/13/13Where should I even begin?

Ugh!  I’m not sure where to start.  Last semester I went to school somewhat part-time and started a job with many hours as an attendant/caretaker for a young woman my age.  The school schedule was not a big deal; I had done that for about a half year before my new job.  Getting back into working was a very big adjustment!  It is not really a physical job, but I was finding myself exhausted all of the time, it took about 2 months before I really got used to working again.  And I used to always be very punctual for work-early even, now I have a hard time getting my butt there in a half hour time frame!  I actually did not know if I would be able to stick with it because I was so tired, but I just kept going!  This quarter I went to school full time, I am taking 16-18 units and working even more hours.  I feel very happy with myself that I can do so much, for me, it is a major accomplishment.  I know I might not get amazing grades, but I am going to graduate-soon!  I feel really good for the progress I am making and returning to be a normal person, I think this would actually be a lot for a “normal’ person. 

I had my yearly done and everything looked GREAT!  My arteries look amazing!  The one thing that went wrong is the opening they had to go into to do the angiogram would not close, in fact it opened more.  My Everolimus causes problems with healing.  To get the opening to heal, I had change to another antirejection med, Cellcept, which made me so sick.  I have rejected a lot on this med and this made me nervous that this might happen again. 

My Zostress/Everolimus (one of my 2anti-rejection drugs) caused me to always be really warm, like I was ALWAYS having hot flashes.  But all of the sudden I noticed that I was very cold all of the time.  I went to New York (my first trip there!) and I felt like I had fluid on me.  I work compression stockings on the plane so I did not swell, I took diuretics to get the fluid off, but nothing was coming off.  So when I got home I called the doctors and after a few weeks we decided to just go see them.  I was not sure if I was having rejection.  I had a cath and it showed low cardiac output and that I had LOTS of fluid (like they almost made me stay-but thankfully there were no beds).  I have been trying for almost a month to get the fluid off and feel better, but I have to be on a very, very heavy diuretic.  This is hard to be on when I am working and in class.  Sometimes it makes me pee every 20 min, it seems impractical.  But, if I don’t take the diuretic I immediately start to build fluid again.  I think I am getting a handle on this, but it’s been about a month.  I am just not sure what caused me to start retaining fluid to begin with; I the biopsy showed I had absolutely no rejection. 

The Everolimus causes my magnesium and iron to be low, my iron got so low that I got exhausted and am having to have weekly IV’s of iron to get it up and to give me energy. 

Some health things not about me.  Back in November my Grandfather was diagnosed with lung cancer.  He smoked over thirty years ago, and was extremely health, walking at least 30 min a day and still working most days mowing lawns and cleaning horse stalls.  He just had one small spot and needed to have a lobe removed.  He had the lobe removed in November 2012.  Since then he had complications related to the lung (filling up with fluids and secretions).  He had been in and out of the hospital since November, but permanently entered the hospital Jan 4.  His lung that he had surgery on balled up, so they decided to remove it.  It worked for a day.  The next day the other lung started to ball up and he passed away that day.  I never expected that to happen.         

Yoga Journal

I took a yoga class this semester and had to keep a journal answering specific questions.  One of the answers stood out to my teacher, it is below.
The question given was: Describe a memorable act of kindness that was shown to you.  Pay it forward.  Describe that experience.
My answer was: "A memorable act of kindness that was shown towards me was when someone decided to donate their loved ones heart/organs so I could live.  I am so appreciative to the family that agreed to the donation and to the donor that gave me their very healthy heart.  A way I “pay it forward” is I volunteer for the California Transplant Donor Network to educated people on organ donation and transplantation.  I hope that more people will understand the subject, through my education, and will be less scared to sign up to one day donate.  I feel like this is helping the over 115,000 people still on the waiting list. "

Categories of Transplants

10/22/12 Categories of Transplants

There are many ways to categorize transplants between people, the organ you are getting, how many organs you are getting, 1^st transplant vs. re-transplant, etc.  The category I am talking about is the age you get your transplant and how being that age affects you. 

I have categorized the ages into 3 groups: infant to 10 years old, 10 to 35ish years old, and lastly 35 years old and over.  I came up with these groups because after meeting so many transplant recipients, I started to notice patterns in how people were affected in relation to when they got their transplant. 

The youngest group was well used to their transplant and living that life, they don’t remember a life before transplant.  But, the majority of these patients seems to get in trouble when they are in their teens (through not taking medications) because they do know the life without their transplant, how sick they were before transplant, how hard it was to get the transplant, how hard the surgery was, and that their medications really do something.

The 10-35 year old group, my age group, I feel like has many adjustment issues.  We have lived a life we have known, have a routine, or a life “plan”/ are making our life “plan”, and then all the sudden it changes in ways we cannot prepare for.  I was in school when I got my heart transplant, it took me about 2.5 years to get back to school, part time, and I had to change my degree to fit my new life.  People in my age range our still trying to figure out our pathway for our lives while trying to take care of our transplant and fit our lives into our transplant life.  We are also facing problems that the medical community does not know how to take care of, specifically for heart and lung transplants; an example is post profusion syndrome (pump head-I hate that term!).  It is a type of memory, concentration, speaking, and writing issues.            

I know the last group might seem like a very broad range, but let me explain.  This group is “adults” and usually they have an established life, family, and career.  People over 65 years old getting transplants are retiring from their jobs.  When asked about things that I have had trouble with post-transplant at a support group, people have just assumed that it was a part of their aging.  This is also a group that is most represented at support groups.    

All three of these groups face different adversities.  I feel that middle age group has been the least supported, so with the support of TRIO, I am helping to develop an online support group for the age range of 18-30 years old.  After losing a close heart transplant friend, Evan in June, I really wanted to reach out to others who are having trouble with their transplant.  If you are interesting in connecting to this group email me (through here) or look up the TRIO website (Transplant Recipients InternationalOrganization), or connect with me on facebook.com/allie.weese.  I hope to hear from many people!

Giants Donor Day, with my sister Katie!

2 ½ years later and I’m finally getting back to a normal life!

05/03/2012  2 ½ years later and I’m finally getting back to a normal life!

I went back to school in January to take two classes, they are very hard (Calculus and Accounting II), but I am actually doing very well!  Originally, I wanted to go back to nursing school to finish my bachelors in nursing, but nursing school is really intense and I don’t think my body could handle being in the hospital with all of the germs (being sick can spark an episode of rejection).  So I just decided to start back to school slowly (I honestly did not think I would even have the brain power to even take these classes) and practice going back to school.  It has been really good not only for my brain, but also just to get back into a normal routine. 

I haven’t had a rejection in eight months and I feel my new-very strong medication is working well to take care of those problems-I think that phase of my life is OVER!!!  I feel like for the most part everything else is starting to normal out and I am beginning to see how my “new normal” is going to be.  Some things, like staying up for longer during the day I think I will just get better at/will be able to build up my stamina. 

Two weeks until I see my donor family!

Closed off/Open

04/6/12

Closed off/open

Before I had my transplant, virtually no one knew I was sick.  I told people I had a pacemaker if it came up, but I never told them the extent of my heart problem.  I think it was disbelief, I did not think I would ever be to the stage of actually needing a heart transplant, so why tell people that I did.  I am also very low key and I thought that it sounded very dramatic when I told people, so I didn’t. 

Now, I am very open about where I am in my health expedition, I will tell anyone anything for many reasons.  I want to show people how dramatically my life has improved, so hopefully in turn, they will see the benefits of organ donation.  Another reason is transplant affects more people than you would ever think.  I also like to show people, family members, close friends who may be facing this themselves that they do not have such a grim future.  It is hard work, but it has definitely been worth it!

I feel like when I was closed off about my condition I did not have support, besides that of my family.  Now that I am open, I have all this support from great friends who I have met through my journey.  I have not turned to a friend for every problem, but it is really nice to have someone that knows what you are going through.  I know so many people with transplants that get the surgery and then never look back, or look for support, I could not imagine going through this without the people I have met, it would feel so lonely.  

Back to School

Back to school: 2/1-20/2012 I finally re-entered school! The night before I went back, I was SO nervous! I have been in school for about 17 years and I have never been so nervous on my first day-and I was just going back to a junior college! Every day since the transplant I have been eager to get back to school, I have tried a few times but I was never ready, I think this time I am ready. It feels really good being back. It feels good to have a routine, be out with people, and have a purpose/plan/to be working towards a goal. I also feel like my understanding of concepts is better and I am “getting it”. This is really making me feel better. It amazes me how life changes. I remember to talking somebody who was a little mentally disabled and how they had to have their text books dictated from text to audio through a machine that did it for them. I (and other people at the time) thought this was so weird, how could they go to college. Now I go to get my DSS forms, (forms for disabled “services”, for me being able to take the test in a separate room where I can get up and leave, to be able to get water and go to the bathroom) they suggest that I go get this machine that dictates for you. I actually think it is a good idea. I know I need to practice reading and stuff, but when I'm tired and just to get more of the information, this would be really good to use Tomorrow will be the end of my second week and I am exhausted, but I am still able to keep up, now if I could just wake up on time and not sleep through class!

Acceptance

10/22/11 Acceptance It has been so long since I have been on here, I think about it often and even already had something written, but it was somewhat “controversial” so I did not want to start off with that post after having such a long break. I wrote my last post while I was in the hospital, in severe rejection, half of my time was spent in ICU, but I will save that for later. Today I went to a class for CTDN to learn the new standards for classroom presentations. As we are going over everything, there was a man about my parent’s age that kept staring at me; I thought the clock might be behind me so I just kind of went with it. After the presentation we went around the class of about seven attendees and introduced ourselves. I just said that I had a heart transplant and that next month I will be two years out. When we got to the man that had been looking my way, he said that his son had been a donor, his son, Tom Futak and the reason he had been staring at me was his son’s heart was donated to a young man, whom they met. Well, I actually knew Tom and before I really thought about what I said, I told his father I knew him. Tom was a counselor in the Jr. High School group at my church when he passed away (when I was in Jr. High). I still remember the night (which just so happened to be the night of youth group) that they told us about the accident and Tom’s passing. Before I had or ever knew I needed a transplant, my family and I had always been registered to be donors, we had just felt like that was just the right thing to do. And before transplant, whenever someone died, it never even crossed my mind if they were a donor or not, now it does. So when I ran into Tom’s parent’s and heard that Tom was a donor, it was kind of weird, very good, but something I had never thought about or processed. I have not met my donor family, and even though I have met MANY donor families, I have never really met a donor family that I have had a tie to. My donor family has wanted to meet since the very first letter I wrote a year and a half ago and I just got the go about 3 weeks ago from the Donor Network that it was okay to meet, but I have been very nervous to meet and have just been putting it off. Hearing all about the Futak’s story has put more a face on the donor’s family. Part of why have been able to put off meeting my donors family is by not “putting a face” on them or making an emotional attachment. Some of this has chipped away through the letters were have exchanged and I learned he had two daughters. I chipped off a lot more of this today with the Futak’s hearing their story, what their life had been like since, etc. Tom, the donors father (also named Tom) showed me a picture of the heart recipient, his wife, and children, and it really made a connection. One of the things they had said to me was even though Tom was not here physically, he has left an amazing legacy. The man who got his heart (only 6 months after being married) not only did he not die, but he has had two children (and ran marathons) in the ten years since he has been transplanted. I think a big thing for the donor families is that their loved ones are leaving a legacy; they are a part of someone’s lives. Even though their loved one might not have gotten to have children, they helped with someone else being able to have them. This may be TMI for many people, so sorry! But, right when I got on the list for transplant I wanted to ask about my eggs being harvested because I was worried about all the bad things the drugs I would be taking for the transplant could do to a fetus. Since I was only listed for 19 days, there was not even enough time to ask my doctor about this. After transplant, I heard so many bad things about women having babies after transplant, I said I would NEVER have children, I would adopt. After today, and hearing about how this young person still had a legacy, like helping make a family, it has made me at least rethink the possibility. I really think that God puts us in places for a reason. I almost did not attend the class today; the Futak’s almost did the same. But God put us both there because we needed to meet and “learn” from each other’s situations. I also remember that when Tom passed, his parents were not Christians, and through the experience of Tom’s death, they are, which was so good to hear.

08/07/2011 Complexities

I have had so many events/accomplishments going on in my life that I have wanted to write about, but it just seems like I have not had the words to put them into my computer. There is one thing that keeps going over and over in my head, I like to keep this heart related, and this is MAJORLY heart related so I will go with this. In about April/May I had heart failure, that I think I had actually had for a few months, I just did not realize the symptoms I was having (dry cough, weight gain, swollen toes, and inability to eat or hold food down) were because I was having heart failure. In fact I did not even think anything of those symptoms really.
This all started off with feeling like I had a bacteria or virus, I thought it was my turn to get CMV. I got labs and cultures drawn, but the cultures were taking way too long to grow (or in this case not grow) and I requested a biopsy. Thankfully my wonderful and brilliant cardiologist also checked the pressures in my heart and saw that I had fluid on me (on my lungs and heart) and my pressures were low.
When I heard the results I was out of my mind floored. We did more testing and found out that my heart was going “stiff” again meaning I was developing Restrictive Cardiomyopathy, again. I could not believe that less than two years after transplant I had developed the disease I got transplanted for-and so soon. I was shocked, speechless, and in disbelief. I always knew I would need another transplant, but now it became a matter of from now to whenever, I always thought I had at least ten years before I had to even start thinking about another transplant.
As the group of transplantees that I am close with gets further out from transplant, we are starting to have more complications of all kinds. Another patient that I look up to, I just read also developed Restrictive Cardiomyopathy, again (that was also their diagnosis before transplant) and they were diagnosed at the same month I was rediagnosed. When I heard about this I almost started crying because it just hit close to home. It just seems like of all us have so many different complications, that there is always someone to be concerned about and then be concerned that you do not have that problem.

It’s not always easy!

These are some of my transplant buds-Evan, Venessa, Jonathan, and Me.
05/07/2011 It’s not always easy!
Update: 05/15/11 So this post is not the upbeat post that I usually write about and many people may not like it, so if you don’t like reading about that kind of stuff please just pass over this post. I was not even sure if I should post this because I am not trying to complain-so please do not take it that way, I am just trying to give insight into the life of someone with many awkward doctors appointments
On Saturday I was supposed to go on a big ride with Team in Training. I was really excited because Tuesday I had an amazing ride (like best time) and Saturdays ride was going to be on “home turf”. But I woke up and the accumulation of my medication side effects over a number of days were too much to handle and I just could not do the ride-then because I could not do the ride I was I was depressed/mad. This is the second ride in a row that I have missed as a direct cause of my transplant. It was just a lot to handle-for me at least. So back to my original post:
Since I became a transplant patient I feel like I have had to go through some things that have been pretty hard for me and I feel like each time I write it must be positive, but not all aspects of my “new life” have been positive. For example: during my surgery my sternum (the “breast bone” or the bone that connects the ribs) was cut-or I think it was really like skill sawed apart. They put it back together with little twist tie wires. I had an amazing, world class surgeon, so you would think that this would look beautiful, but honestly it looks like twist ties that goes around bread and they aren’t even. The reason I am even talking about this is that ever since surgery my sternum has been really uncomfortable, sometimes it feels like some of the little twist ties are poking out and kind of hurting me-they are in not means killing me, it is just annoying.
Before I had my transplant, I was very intelligent, but from the surgery (my brain got a little messed up with the heart lung machine) and my medications I am no as “on top of my game”. So I am being seen in the memory clinic/speech therapy. Here you go over everything that you are struggling with your memory and try to figure out ways that you will learn to compensate. To do this you have to tell the clinician everything you are having trouble with, for me this can be really embarrassing, it is telling someone you don’t really know things like forgetting to put on deodorant, or locking you key in the car all the time-or the worst for me was when she had me just write and then spell checked it. I did not have that many mistakes, but the ones I did have were basic, and made me feel really bad that my memory is where it is. It is hard to be so open with someone you barely know and I think I will have probably about 10, 1 hour sessions with.
So seasonally transplant patients go to “clinic”. Where before hand they get blood test, sometimes biopsies, maybe echoes, etc. and they get they results and go over EVERYTHING in clinic. Clinic is usually fun to go to because everyone is nice and it’s like “Cheers”- “Where Everybody Knows Your Name”. It’s fun to catch up with all the nurses and usually by the time you get there all the testing is over with! But then the Nurse Practitioner or Doctor comes in and starts asking you about EVERYTHING-and I mean EVERYTHING! Everything from what my bowel movements are like, to nausea, to depression. It is always so uncomfortable and I am always just waiting for the moment that the appointment finally ENDS! And it is a huge sigh of relief that I don’t have to reveal anything else about myself that I feel uncomfortable about, and because my mom and I get to go do something fun outside the hospital before we head home.
I am still getting used to the new “normal” of life: exhaustion, nausea, pain but there is no way I would exchange it for that old, damaged heart. This heart, Ruben’s Gift has been amazing and I have been able to do things I have never been able to do in my whole life, and before I received it I never imagined I would be able to do things I am doing now. Today I was able to climb the hills along California’s Highway 1-they are CRAZY!
And here is the Northern California TNT cycle team for spring 2011! They have been a blast!

05/06/2011 Donor Family Ceremony-I made it into the Recipient Line!!!

By friend "Bean" and her mom Sue bk2nocal


05/06/2011 Donor Family Ceremony-I made it into the Recipient Line!!!
When I was first transplanted and was just getting into the recipient world, one of the things that I wanted most was people that were going through this with me and now I can say that after a year and a half I am meeting many transplant friends. Some recipients can get by without having to have that closeness with others who have gone through what they have to go through, but I find it so fun to make these new friends and it has been so helpful to learn so much from each other.
This last weekend was the Donor Family Ceremony that I attended for the second time this year. Last year I just sat in the crowd and watched it and even though I was on prednisone-I did not shed a tear? I don’t know how. But I was with Jackie, who was very emotional, I think maybe because even though I had to live through the transplant, I think that she was more psychologically there and saw a lot of things maybe I did not see. I think for me this is also a celebration of my life, everyday is.
This year I got invited to participate in the recipient line-meaning I got to go onstage infront of (I think it was) 300-400 donor families to show what their gift has done for others. These families were all families that had lost members from this last year and were still in pain, so I hope seeing how great and thankful the recipients are helps them-and shows them how their family members legacy is still living.



The recipient line

04/06/2011 3.5 Hours of Neuro testing!!! Don’t they understand I’m seeing them BECAUSE my brain is fried!

04/06/2011 3.5 Hours of Neuro testing!!! Don’t they understand I’m seeing them BECAUSE my being is fried!

So the point of this blog is not to just talk about my boring everyday life, but to talk about my transplant life and what is going on with it, it may seem mundane and boring, but I think I get to do a lot of things that I would have never have done without the transplant.
So today started out with my mom taking me to by friend Kara’s house because I left my HUGE purse in her car last night (which included my driver’s license, debit card, and health card). This was just more proof that I needed to get tested by the neuropsychologist-which I went to next. Basically, a neuropsychologist tests how you think through many different kinds of testing (like reading back numbers in an order, doing math in your head, using building blocking to make a shape, draw abstract ideas, etc.). When I first got there they had me fill out a 16 page survey before I even met with the neuropsychologist, 16 pages!!! It asked everything from if my mother had a normal pregnancy to if I had migraines. And then came the 3.5 hours of testing.
I won’t get the results for a few weeks, but they are supposed to be able to be used as a tool to help with my learning and going and back to school so I am excited to get the results.
After I picked up some “goodies”…some Gabapentin…from the pharmacy (it’s for the nerve damage the was caused during my surgery and is in my hands and feet), but even though I did not have to wait in line for it and had to order a TONE (the tech could not believe I was getting that much) I did not have to wait more than a minute! So they were goodies-especially since have been out for 3 days and I am getting SORE!

PR SATURDAY!!!!!

04/05/2011
Last week some major milestones happened. On Saturday I biked 50 miles!!! Would have never thought I would be able to do that. I would have never thought that I would be healthy enough to bike that far and that hard, and unless Lance Armstrong is telling you he did it, biking 50 miles is pretty hard to do. The total miles for this week were over 120 miles!!!

Earlier this week I also had a MAJOR spill on my bike and I think I cracked the top layer of my sternum. They doctors are not sure what is going on with it and have done numerous tests, but the bottom is still held together, but there is definitely a hole in my sternum going the length.
I had my first 3 month follow up with the heart transplant clinic; this is the first time I have been able to stay away from them for more than a month! I have always felt sick in a month and felt that uh-oh feeling that I just needed a checkup, but this quarter I told myself there was no way I was going to go in with in the three months, and I made it! And I got a 23 (on a scoring range of 0-34, but anything under a 34 is good) on my Allomap, this is the lowest that I have ever gotten!
Natalie a lung transplant patient and transplant buddy passed away this Tuesday afternoon. She was 33 years old and was an amazing person. She graduated from college while undergoing chemo for non-Hodgkin’s lymphoma, the effects of the treatment ultimately cost her, her lungs and then her life, but she always lived her life to the fullest and was such a sweet girl and was one of my first recipient friends I made at the donor network while we volunteering at many events.
Even since my many notes that I wrote to my donor family in December I have been meaning to write again and just get an update. When I came into the clinic my social worker gave me a note from my donor’s family! It had a picture of my donor, Ruben, his older daughter (who is 9 years old and the mother of his children) (he also has a 2 year old daughter) and another picture with his mother and his 2 brothers and 3 sisters. I also found out Ruben was 36 years old when he passed. It was somewhat hard to get the letter because without the letter I could always think of him as a single being (without a family, children, etc.) but now that I see that he a regular person and I could relate being a donor to someone I know, which is a great but scary gift. Rubens final resting place is in Colima, Mexico where his parents live. His sister (who was his next of kin) is still in Fresno, and she would like to meet with me but I am not sure about his daughters or other family members.

Exciting News

My friend Jonathan is getting his heart transplant tonight-Valentines day-how fitting! He was in the hospital over christmas on IV milrinone, but because he does not have an ICD he could not go home. Then he though he could stay off the milrinone for awhile, so he went home, but was a status 2, for about a month! He had to go back to the hospital last Friday to go back on the Milrinone. Then the gave him the IV pump like I had and a life vest (like I was going to get) and let him go home for 1 day for his younger brothers birthday. Jonathan is 17 years old and I meet him at my heart transplant support group when he was an inpatient and trying to entertain him on facebook on chat-I have not talked on that since highschool, he made me sign onto that lol!. Although we are a few year apart, we have a lot of sililarities! He is supposed to be in his senior year of high school, but is having to take the year off to get a heart transplant. Amazingly he is taking it in stride! I am having to do the same thing with college.
I have been talking with Jonathan and for so long about the transplant, I am so excited for him tonight and I can't sleep!-It's midnight! I am remembering what my transplant was like, how I was feeling, what the afternoon, evening, night went.

I feel like my blog is naked! I haven't taken any pictures in FOREVER and I have nothing to put on here!

So it has been 14 months since my heart transpant. I am now ready and able to start doing things that I was not able to do before my heart transplant. I have found that Leukemia/Lymphoma Society (LLS) can help me do this and allow me to give something back in return. In the last year I have been in and out of the hospital and have seen many different things. I had the unique and very difficult experience of going to the department where cancer patients were being given chemo. This experience has only added to the connection I feel to LLS. That is why I have joined Team in Training (the fundraising arm of LLS). They will prepare me to ride my bike for 100 miles around beautiful Lake Tahoe, in one day!
Since its inception the Leukemia and Lymphoma Society has raised over a billion dollars. This has made a huge difference in the survival rates of blood cancer patients. Not only does the money raised go towards research, but it also goes towards patient services. Because of the support that I received during my recovery, I have realized just how important this aspect is for patients with blood cancers.
The financial commitment that I have made is $3,500. Please visit my website, at: http://pages.teamintraining.org/sf/ambbr11/aweese to donate directly to LLS via credit card and to get updates on my progress. Donations can be made by check to the Leukemia Society. And of course, your donation is tax deductible. If you would like to make a donation and are able, it would be greatly appreciated if it could be made by Monday, March 14, 2011.

02/09/2011 Not a ZERO-But Happy With What I have!

So, in January I went off Prednisone-for good-finally! A year late-but defiantly worth the wait! I thought I was rejection/having more problems with restriction in my heart like I had in December went I went off the Pred., so I had an "emergency" heart biopsy for the next morning, but it showed up with the same results I have when I take my small maintenance dose (5 mg) of Prednisone (I got a 1R/1R-so still rejection). This was finally the good news I have been waiting a year for. I was supposed to come off the Prednisone last January, but because of my rejections and inflammation issues I had to go on many tapering's of it. I don't have to go back to the transplant offices until March/April and I don't have to have another biopsy until November (or unless the Allomap gives faulty results-I am not a fan of Allomap-it is a relatively new test and is still working out its kinks and I never get good results. But, hopefully since I am off the prednisone I will start getting better Allomap results).
A few weeks after the biopsy I started feeling better-it takes awhile for me to feel better after getting tapered off the prednisone-it is pretty hard on your body. I started riding my bike more, and I signed up for Team in Training to ride 100 miles in June!-a century ride! I am getting to do something that I have always wanted to do and something that most people don't have time to do. I am loving cycling and exercising! I got into cycling because it was the only exercise that was not hurting my back (laying on my back for hours during and after surgery hurt my back), but I was finally able to get a shot in my spine and it HELPED! so, I am able to do more walking an do different excercising.
I am working in speech therapy on my memory and hopefully that will help me. I don't know about it so far, but the brain is elastic so I am trying to work it out more and hopefully it will come back soon. I am taking one class this semester just as practice for next semester at SMU.
It is getting exciting to a.) be getting healthier, and b.) getting used to everything and just get into my routine and c.) being able to move on with life! I am getting more used to everything transplant related (like meds causing me to be nauseous, the pain in my legs, my migraines, and my memory). I haven't updated this in so long because I have been so busy and I am filling up my days again!

Hilly Road Ahead

01/18/2011-A Hilly Road Ahead
The morning started off waking up at 7:00 am-I have not woken up at that time for quite a while and it was pretty difficult to do, but I am trying to make new habits and going to bed earlier and waking up earlier is one of them.
So by 9:30 am-I met my Auntie and Uncle (who are brother and sister to my mom) in the parking lot of a closed down Mervyn's) with my "Auntie" Meena to go for my first real (non trail) road bike ride. It was good-mildly hilly, but not awful. I did not have to stop on any hills and walk up them-and I did not have to shift to first gear at any of them. It was a total of 11 miles, which was pretty good for my first day out. We were going to make it a little longer, but the next signal is REALLY busy, so we turned around a signal early and that took off about a mile or maybe 2.
Some of those hills looked so hard to do and that I could not do them, but once I was on them, I could not stop and just got through them. I sort of surprised myself that I did so many, and such steep hills. The other day I tried to do one hill and I could not do it. I think it has a lot to do with warming up my heart. During surgery the nerves to my heart were cut so I have no autonomic nervous system (ANS) the system which tells you to fight or flight. So this means I have to warm up, this can take a good 5 minutes or more. I think it also helped that my Auntie was there and she would not take it if I walked up the hill.
So I have a new exciting work out schedule-I am training-which is a total surprise, but I will tell you all later. It is mostly an exciting because it is with family, and possibly with one of my best friends!
So-to the medical stuff-at first I typed studd-I wish there was a medical studd-preferably a Dr., but I would take a RN.
So my Immune Cell Function Test (this shows how well I am immunosuppressed, it is bad to be to under suppressed-you will always get sick (like with colds) and are more prone to cancer and other things) or over suppressed-your body will be fighting off the organ) from a few weeks ago came back not good, and they gave me the choice to either up my Myfortic or my Gengraf (I was smart and choose the Gengraf) so the doctor upped my Gengraf a very little bit (it has bad side effects (I choose Myfortic over Gengraf because I think Myfortic makes me feel worse than Gengraf and I don't think I could tolerate anymore Myfortic). So a week later I took the test again and it ends up that I was the smart one and choose the right drug because after taking a break from the Myfortic in December (to go on Rappamune to see if that would help with the nausea and end the chronic rejection-which it did not-it made me sicker because it depleted my potassium and magnesium) my drug level test showed that my body is not absorbing my Myfortic (which is pretty serious-since I tapered off prednisone and was off of it-so I was only on 1 anti-rejection drug, all transplant centers require 2 drugs, some 3). Actually the nurse said either you arn't taking myfortic or your body isn't absorbing it, and I immediately started promising her that I take it ever day as prescribed. So we decided that I am not absorbing it. So I am running out of anti-rejection drugs that work. I got them to give me the name brand of cellcept-I have to make sure that I only have to pay my small copay and not a gillion dollars because I can not take the generic-I thought it was going to kill me.
Anti-rejection meds that work: gengraf, name brand cellcept, rapamune (but would be a last resort)
Anti-rejection meds that don't work=prograft (can't see when I take this), generic cellcept, myfortic
And this is all kaiser is giving out anymore, I have heard of neoral, and Imuran, but Kaiser did not offer it to me. So let's all pray that my ICF will get better (and I will still feel ok) with the cellcept (I haven't taken it in a year).
On a funny side note-I called the transplant coordinator at 4 because I knew my lab results should be back by then, but she still had not talked to the Dr. about them, so she had to call me back. Well I was out running errands and I though it was going to just be a few minutes more, so I waited in the parking lot....for 40 minutes. And then I finally left. And of course 5 minutes later she called me and told me about the med change and wanted me to run out and get the new meds. In my head I though: "So, basically I have only been taking 1 anti-rejection medication for a month, what is one more day, I will go out tomorrow after rush hour,".

Pump Head

01/09/2011 Pump Head
So I guess I have been in a writing mood lately because I think this is the third day in a row that I have written, usually I start out reading friends blogs and commenting, but lately I have been riding a lot-and when I ride I get lots of deep thoughts and this is sort of the therapy.
So from the heart transplant surgery I got developed this condition (that will go away over time) called pump head-that's it's real name-you can look it up on wikipedia, isn't it such a vulgar name? Basically what it is, is memory loss-of different kinds (short and long term) caused by the surgery-when I was on the heart lung machine. There are many theories what actually goes wrong with the pump, one of the things is that your red blood cells are crushed when they go through the pump and are ruined-but there are many other theories.
Anyways-I am talking about this for a reason. For awhile I have noticed that it is so weird the things I actually am remembering/remember. I have forgotten many things from my long term memory, it somewhat feels like I have a slight amnesia-I know the basic things like my name, family, etc. But some things that I expect myself to remember I am not remembering. They kind of catch me off guard because I just don't expect it and I am always surprised.
I have gone to church for my whole life and this morning we were singing songs in church that I have sang my whole life, but I could not remember the words, I had to read them from the screen. It was it kind of made me all the sudden evaluate my life and what I really value. I am having no problem telling people about medical crap-sorry, but I can real off a whole load of stuff, it took me 2 days to remember 20 medications I had never heard of (the dosage, why I took them, and when I took them, etc.) (and I am not just talking about knowing medications-I am a nursing student so just knowing about general stuff going on) but I totally am forgetting verses that I have always known-I just draw a blank.
I know it is important to know about my health, but it made me think that I also need to put a lot more time in reading the word. It is so weird how it took this pump head to figure this out.

This is the stuff they don't tell you about

02/08/2011 This is the stuff they don't tell you about!
So I was watching this cheezy movie about heart transplant patients; yes I must watch and read all books about heart transplants, fiction or non-fiction to either learn more or to see how close they really capture what it is like to have a heart transplant.
After one of the characters got their heart transplant, they were speaking to a fellow heart transplantee about just how great they felt-"You know, the stuff they don't tell you about". I have been thinking about writing this for an hour now, and now I can't put it into words, but after my great night I can totally relate to this character.
The stuff that they did not tell me about was how all the sudden I would be more out going and willing to try more things. I have done more things with friends, gone out with friends of friends, and tonight I went to a friends work party as her "date". I think in a way the transplant has given me some sort of confidence because I would have never done these things before.
The night was amazing! I got to meet some really cool people, a Chief or Surgery for UCSF, SF Judge, and many Lawyers, and some guy tried to pick up on me-this was the first time since transplant (I inadvertently covered my scar with a scarf-people ALWAYS stare at my scare when I talk to them- so I don't know if that made me more approachable). but I turned him down-he smoked and had a tattoo on his neck :(. I am so glad I went, it was just such a cool adventure.
Today was Katies winter ball and I woke up early (10 am) and ran out to the craft store and bought peacock feathers and made her a headpiece. I think it actually looks really cool and really good. It really got my creative juices flowing in another way. I love how lately I have been back into doing art-for fun. I get inspirations from watching movies or just looking at materials I think of something amazing I would like to make.
I love Katies dress that we picked out about 5 days before the dance. I will have to post pictures later. Last year she was very formal, this year she was very fun.
I got to do her hair fun, and touch-up her highlights which turned out amazing looking-he hair was looking to blond.
And finally, Jackie always does her make-up, but she is away, so she asked me to do it. And I though I could do a fine job, but that it would just look like everyday make-up since that is the sort of make-up that I do, but then my creative juices started flowing and I blended the colors of her eye shadows to make it look like a peacock-to keep with the theme. Even my grandmother and mom liked it! Their only complaint-and my grandfather was very pissed about this was that the dress was pretty short-but you gotta have fun!
So we both had a great night! This is what the doctors don't tell you about!

Birthday

1/7/2011
I have been feeling a little "under the weather" from the medication change, but Tuesday I had my biopsy and convinced my doctors to changes my meds back and now I am feeling back to normal. Really though, after getting my labs back, all that I think was wrong is that my magnesium and potassium were REALLY low. As soon as the office got the results, they called me and told me to take 8 pills of K+ and 900mg of Mg and in a few hours I felt waaaaaaaaaaaaaaay better. Some of the antirejection medications make mineral and vitamins leach from your bones and body and I think that was what was happening to me. When you do not have enough or you have too much K+ and/or Mg you can have irregular hear beats which can make you feel really rotten. I really thought everything was going wrong with this new medication and I was rejecting again, but after I took the K+ and Mg I felt fine and then the next day I got my biopsy results and it was another 1R/1A-which is no change on the rejection (I always have minimal rejection) and the inflammation went down! So now I am trying to get off the prednisone AGAIN and will go back in 2 months (after I have been off for awhile) to see if everything is ok.
If I was a normal heart transplant patient by now I would be off the prednisone, have a regular medication schedule, getting labs every month (I get them about every other week to every week), and go to the clinic every three months. Knowing this, I just did not feel that it was a good time to start nursing school, so I finally emailed my counselor and told her to push me off until the fall of 2011 because of the complications. I feel good about this decision because it will give be more time to get back to normal and do things that I would have never been able to do.
Well I just celebrated my 23rd birthday! I have to thank God and my donor for letting me be with my family for another year.
The next part not everyone may agree with or want to read, but my blog is about an honest account of what it is like to have a heart transplant.
On my birthday, the one present I really wanted was to not have to take my 3 sets of many pills. The day was kind of a hard day because for many days before and after I was not feeling well and by that day I felt like I should just get to be a Princess and not have to take my meds, but I still did. I have never missed a dosage of my medications, but I still have a love hate relationship with them. I love them because they keep me alive (thank you Norm Shumway for realizing cyclosporine prevented rejection!) but I hate them because they can make me feel sick (I must take them with food), I hate the taste and smell of them and I hate sorting through them knowing that I must take them-this is part of my rebellious nature. But I am back to feeling "normal" being back on the myfortic.
So for my first post of 2011 I am posting my resolution and that is to just keep on with what I did with 2010-be thankful for my new life and don't hold back! Go out, have fun, do stuff! Volunteer with CTDN so all the people I know waiting for their transplants can get a chance at their new lives!

Last Entry of 2010

12/31/2010-Last Entry of 2010!
I have to sneak in one last entry of 2010! This has been one amazing year! A lot of hard work, many, many struggles, a lot of learning, changes, going out of my comfort zone, getting many opportunities and experiences that most people don't normally get, and a full year with someone else's heart!
Heart/Health wise this year started off really tough and it did not turn around utill the last few months. I had bad rejection many times and was on prednisone tapers that were anywhere from 1000 mg of Prednisone/Solumedrole to 100mg of Predrisone to being off for 3 weeks (and I finally got my face back! but now I am back on the prednisone so it is gone again). But I was so lucky that I did not have the antibody rejection and have to stay in the hospital, the worst I had was having to go in 3 days in a row for IV medication.
I am also so fortunate that this heart feel so strong! It honestly feels....undescribable...I don't know if everyone is walking around with hearts feeling like this, but you if you are, you are some lucky ducks. Even on my worst days, when the medication makes my heart feel so weird and the beats are off, or the rejection was bad, I still feel way better than when I was 5 years old-before there could have been that much damage to my heart. I said this to someone before, it just feel so good, so natural with this new heart. To not have to have something mechanically keeping your heart going (like a pacemaker, LVAD, ICD, etc.) the mechanical stuff is great for an emergency, but it is not the same as a real heart. It is not great for people who are still highly active and/or will need the mechanical support for long-term use.
I am finally used to the right heart caths! You can poke me in the jugular as much as you want! I am getting used to the nausea, sort of. I changed one (of my 3) antirejection meds to from myfortic to rapamune (because my biopsy showed mild rejection/inflammation. I am not liking the rappamune, it has done a number on me and I am hoping I can go off of it at this next appointment. So far my headaches have gradually returned, I am short of breath, by blood pressure is high (normally it is perfect and I don't even have to take anything to lower it! I am so lucky!) and I am still nauseous, and I don't know if the acid reflux is worse all the sudden or it has been bad for a while and I have just not been paying attention (the antirejection meds really rip up your stomach so you are put on 2 antacids). But yet all this was not enough for me to call the doctors office early and get a sooner appointment or get try to get off the meds.
It is just starting to hit me-13 1/2 months later, that this is not really my heart. I got this heart because poor person died. I know I could not have prevented their death, and my illness had no correlation to their death, but it has just started hitting me that this could have been one of my family members (or myself) who got in a fatal accident and died (it happens everyday). I think I came to this conclusion with all of the excitement over the float in the Rose Bowel Parade and seeing all of the donors florographs-it put a "face" on the donors (like how being a volunteer with CTDN and talking about my transplant I am trying to put a "face" on transplants, it was just one of those moments), so many of the donors are so young, like my age, you just don't expect people to die young. But it also makes me remember that I have to live for my donor and their family, and the life I was given will not be in vain.
I have gotten so many experiences that I (probably) would not have been able to do/been given if I was in school/working/did not get the heart transplant. I got to travel and live with my sister and cousin-away from my parents. That was sooooooo cool! I grew a lot closer to my sister, we had a lot of fun, and learned about how to rent a house and set it all up-without any help from our parents!
I have gotten many speaking opportunities, many volunteer opportunities with CTDN, and a internship with a nurse educator. At all of the place I learn so much-and hopefully I am again putting a face on transplant. These opportunities I would not have been given without the transplant or if I was in school and they have been so cool.
One thing I have tried to do this year and will try to do in 2011 is be a support person for the younger people that need a transplant. I did not know anyone young that had a transplant, it wasn't until 6 months out that I met some friendly transplant people at TRIO, but it wasn't until I went and talked to another young person in the hospital that I met someone closer to my age that had/needed a transplant. The reason this makes a difference is so many of the people that are transplanted at my hospital were near retirement when they got their transplant, so they just retired. I am just starting my life and I still need to go back to school, so there are a whole different set of issues with me and it is nice to talk with other people my age to see if they are struggling with the same things. But for me I definitely had to step out of my comfort zone to even go to groups like TRIO, much less talk to people my age about transplants, but I think that this was is such a pertinent part of the transplant process for someone waiting, that one of my goals (and if you are the prayerful type-you can pray for this) is to keep stepping out of my comfort zone and talking with transplant people.