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.

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.

Giving Back

So I have had many mile stones and I wanted to write them out so hopefully they will get out over a few small posts. Here is the first one of the day before my one year heart transplant anniversary.
I guess it is good that I have been too busy to write about my one year heart transplant anniversary, but I really want to write about it before I forget about it. On Friday, November 19 I donated blood for the first time. Since I was by myself I don't have a picture, but here is a picture of the sticker I got:




I wanted to donate blood because it was one of the things that I was donated to me that I could finally give back. I was given many, many units of blood during and after my surgery-something like 9 units, so I feel like I need to replenish the supply. One bag of donation can save 3 lives. I took awhile to get through the screening process, but it only took me 4 minutes to fill the bag-because I have such a strong heart!
I thought about writing about what happened this day a year ago, but maybe in a few months.

11/6/10-"I Don't Buy Green Banana's?"

11/6/10-"I Don't Buy Green Banana's?"
I think that the only people that like the songs that make you appreciate your life by talking about the singers impending death are people who are not sick, people who will never be sick, people who are perfectly healthy. People who are sick, people who might not make it until they are 40, or people who have lead "different" lives because of an illness detest them. Do I honestly need to be reminded to live like I was dying, or that I might not get to eat the produce that I just bought?
At lot of this comes because Dr. K, against the wishes of other members of the team (but for very good reasons) decided to lower my prednisone by half-hopefully to get me off of it eventually. Last time I did this I was in Texas, rejected, went to the ED and made and emergency flight home. I know everything will be fine and I have always pulled out of the rejection, even if it does take some IV solumedrol, but I don't like what it does for the long term effects/damage of my heart. Will this episode of rejection not make this heart last as long?
I do not need these songs because I appreciate the life that was given to me and I always will. I know that a lot of transplant patients say that once they get back to their normal life, they forget to live like they had a second chance. I know it is easy to say that that would never happen to me, but I am certain it will not. I have too many reminders everyday of what my life was, taking my medication everyday, going to clinic visits, getting dreaded biopsies, etc. For so long I was too exhausted to do ANYTHING and was just pushing through life, now I am actually getting to enjoy life, and I get to see the difference!

The songs I am refering to are Tim McGraw's-Live Like You Were Dying and some other guy's I Don't Buy Green Banana's

10/19/10 Practicing Life After Transplant

So I am long overdue for an update. Life has been really busy, I have just been really looking forward to getting to Texas-to see my sister, volunteering, being with family, and just the everyday heckticness of life. I am almost exactly one month away from being a year out!!!!
I must start out with a hilarious incident that happened when I was volunteering with the California Transplant Donor Network doing grand rounds with the pediatricians the day before I left for Texas. Right after transplant I used to always wear clothes that covered my scar, but they don't make clothes for women like that, so I scrapped that idea and have just gone back to dressing normally. At the end of the presentation people always come up and talk to me. I was wearing a V-Neck shirt and everyone that talked to me stared directly at my scar! I expect this in the normal public, but not really from doctors who see scars everyday. So later that day I was talking to my sister on the phone and she said that next time that happens to ask the person if they have a question. Well the last person I talked to was the 80 year old Chaplin-I don't think in the 10 minute conversation I had that they looked at my face once! It does not bother me at all, I just think it is too funny!
I feel like I still have so much to write about my transplant life, but yet it is so hard to pinpoint what I want to write about. Earlier today I started to write just a general update, but it just felt so generic that I stopped. Later in the day I was writing an email to a heart/kidney transplant friend (Hi Bob-http://www.txtrib.blogspot.com/) and I finally thought up a good-original blog, its sort of a two-fold subject.
Originally when I went to Texas with my sister in the end of May, we were planning that I would move down here with her and I would come back home every so often to go to doctors appointments. Well I had to get immediately home because I felt sick and had an issue with heart rejection. At that point in my transplant I was about 7 months out.
It feels great to be back here, to see my sister, to get away from the stresses of life. But after I got here and "let loose", I realized this is a practice run. There are so many things after transplant that I had to make into a habit to do, like take medications 3X a day, take my vitals 2X a day, refilling my medications, being in contact with my doctors, etc. Being on vacation and really taking care of yourself is another thing that I have to learn to make a habit of doing.
When I first got here, I thought: "Hey, I am on vacation I am going to sleep when I want, eat when/what I want etc." and because of the time change my medications schedule got off-even though I have NEVER missed a dosage-EVER! But after two days it made me feel not great. It just made me realize that I had to keep in the motion of normal life if I wanted to stay feeling well. There is so much of this transplant life that I still have to learn about and this is just one of the things, that I can't just basically be lazy.
So, the other part of this is that I am beginning to feel like I am in the "free and clear zone." I am not sure of this because I still am waiting until next month to have my annual, but things are getting easier. I have not had major rejection since may-minor since July, I am getting used to the nausea, less migraines, and I am getting used to the back pain. I am working out the foggy head and at the yearly the doctor will decide if I need to see a specialist so I feel more confident about returning to school. Medication is working for anxiety, I honestly don't feel like I am getting anything from the therapist they hooked me up with-she is nice, she just doesn't seem to understand what it is like to have a chronic illness, and I just no longer feel the need to see her, I feel like a long of the people I have met in the transplant world have helped me think through the issues I had with my transplant better than any session I had. Life is just getting into a good rhythm! I am starting to think about making plans, I am seriously considering going back to school in January or if it doesn't work out in the Fall-like a school I have to go to-like physically go to, not online. This trip just made me realize that the original trip I was not quite ready to take, I was just not quite there health wise and I think that the minor rejection sent me back before I did anything too stupid; although this time I drank the tap water for three days before anyone told me that you are only supposed to drink bottled water! Should I make my plane ticket home now, or wait out the three weeks?

The pic is when I took my nana to the hospital, she had an allergic reaction to the flu shot, but I still had to wear the mask-the duck mask (ask all the other patients called me in a wisper "look at that girl in the duck mask").