Ginny's Pre-Heart/Lung Story 

 

 

 

My name is Ginny. I am 29 years old. I have been on Oxygen for 13 years. I was recently put on a heart/lung transplant list this past May/2003. I was injured in a malpractice event that occurred 13 years ago when I was pregnant. I had toxemia and pre-eclampsia that went undiagnosed which resulted in me becoming very ill. I was 8 and a half months pregnant when I went to the hospital very ill and was told I would be kept 4-6 days. They only kept me 4-6 hrs. That night I went into seizures and cardiac arrest. When I arrived at the hospital, an Oxygen mask was put on me, I vomited into it and it was not removed. I inhaled vomit onto my lungs which caused pulmonary edema. After I was stabilized, they delivered my son. He and I were not doing well and we were both flown to TMC in Tucson where he died 4 days later and I was in a coma for many months. I was diagnosed with ARDS(Adult Respiratory Distress Syndrome). Over the years I have had pneumonia several times and other infections which have caused more scarring. I am now diagnosed with Bronchiectasis. I knew that someday I would need to make the decision to get a transplant or not. I had always said no way as I did not know much about it and all the things I knew were scary and not good. But, the day has come and I want to continue fighting as I always have. I have always lived life to the fullest and am not about to give up so easily. When my Dr. had mentioned transplant to me it was as if it was a new thing as I had put it out of my mind. I thought I would stay the way I had been for years, going and going. At that time my Dr. changed my meds and said that the longer I can wait for transplant the better. So, I stabilized and went about my way. Then, these past years have gotten harder and I have gotten slower and less active. Also, I was beginning to need antibiotics and steroids on a regular basis. I started seeing a new Dr. and he sent me to get a transplant evaluation right away. I went to my local hospital and in the meantime I got engaged and began planning my wedding. The transplant coordinator decided to put the testing on hold until I had time to think and the wedding was all over.  After visiting and talking with my Dr. he suggested UCSD Medical Center. They sent me for evaluation there where I was excepted not only for a double lung transplant, but a heart/dbl-lung transplant. This came as a surprise to me to say the least.  After I came home I immediately planned a long trip to Hawaii for my husband and I as we had never been away on an extended vacation and I wanted to show him a piece of “my world” in case I did not make it. I wanted him to have that memory. We had a wonderful time. I find myself doing that a lot. Wanting to make nice memories for the people surrounding me. It is weird, as we are planning to live we also are planning in case we die. So, here I am now, waiting for someone to die so I can live. It is very strange, and even sad to think about someone dying for me to continue on my journey. Sometimes I feel sad, but then I realize that this person or their family wanted someone to live if they or their loved one had died. It is the most precious and unselfish gift of all. I am ready for sure, but the thoughts of the regime and expectations can be very stifling. Although I have always been able to somehow deal with what I have been dealt, I do hope I can rise to the occasion once again. The waiting is hard for me as I think and think about what will it feel like, what will I have to do, will I do well……..WILL I LIVE! My new husband is terrified and this is another stresser. The pressure of not wanting to hurt anyone by dieing or just the process from transplant to discharge and all that comes along with it. I don’t want to let my family and friends down as many have suffered right along with me. It is true that no one knows what you are going thru unless they have been thru this. We carry a huge weight and are told at the same time not to have too much stress in our lives as it is not good for our health. Some people don’t know what is to come, they think it is such and easy in and out surgery then you can breath again, plus, you live without illness after the transplant. Well, we all have been taught that it is trading one set of problems for another. Not everyone would look at the odds and say sign me up; when you can’t even do the little everyday things, and your mind still wants to go to the moon and back, then you tend to look at it differently. I see it as my chance to make more memories. I am ready for whatever the Lord has in store for me. Currently, I am going to Pulmonary Rehab trying to get myself in the best shape that I can be in for transplant. After all, I still have to keep the rest of me in shape so it can keep up with my new heart and lungs! I have replaced the “What if I don’t make its,” with “ When I get my transplant I am going to…” This is the best feeling. Daydreaming of just walking my dog, washing clothes, running and most of all dancing. It will be sweet. I have always been a dreamer and I think that is what has kept me going, not to mention the great support I have. Although, I had lived on my own for along time just going day to day as hard as I could, it is nice to have the support to take off some of the edge. Being a career patient, we tend to be very independent and head strong, to say the least. Now, I am able to ask for help and let someone else do stuff which has made it possible for me to spend my precious energy on other things. My life is so amazing. I have met so many wonderful people who are pre and post transplant. I am one of them now. It is a very close group as we all know exactly what each other is experiencing. We all know what is at stake, the thoughts we have when no one is around, what goes thru our heads as we stare quietly at flowers, the ocean, our loved ones, the tears that might fall from time to time when we hear a song or when something wonderful happens. We are happy, we are sad, we are stoic, we are full of hopes and dreams of the future, we are full of fight. I see my Dr. every three months and the past two times I was put in the hospital. It is no fun, but I make it fun. I am what most would call a character and a model patient. The nurses always say I am an easy patient as I don’t complain much and it makes their job easier. This is because after so many hospital stays we can practically predict what is going to happen next, we can usually diagnose ourselves. Also, we have been poked, prodded, pounded and the blood has been sucked out of us so much that we can sleep right thru a lab visit. Funny what you take pride in after awhile, ha ha.

Although I would rather be at home, I have a good time with the Dr.’s and nurses, transplant coordinators, respiratory techs, they all become your close friends. I love to make them laugh, because this makes me laugh and I feel better. It passes the time between fevers and blood pressures being checked. It passes the time until I am well enough to go home. When I look in the mirror, I don’t see who I used to be anymore. She is still there, that girl who was tanned so beautiful and dark from swimming all summer. The girl who loves to travel, loves the ocean. The one who was unstoppable, a whirlwind, hard to keep up with. Now it is me who has to keep up with others, with time, with this illness that is showing me a new way to be. Slower is not necessarily bad; you see every detail, smell every smell, taste every rich taste that life has to offer.