Well, I will do my best to inform everyone about what I go through with all things transplant,
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I am one to research, but never overwhelm myself. Too much information can be just as damaging as too little, at least for me. This is the way I have treated my COPD and research on my double lung transplant...if approved.
I am 46 yrs. old and don't mind saying that I get like most of you at times...frustrated and depressed. But most of all, I get mad, more than mad.
I had a pulmonologist for years that never suggested any testing for LVR or any other studies going on. I got to the point where I was having such severe symptoms and was getting no answers or further testing done by the doctor I had. Many of you have had doctors like this.
I was basically, and still do, feel like my whole body just shuts down. I feel paralyzed at times and just actually cannot move. When I described this to my Primary Care Physician, she told me I had to get to a certain lung center, and that I was decompensating. This lung center did not accept my insurance so another person on here suggested where I go now. She knows who she is. So I went to Penn that was suggested that they may accept my insurance, and they did.
I was now at the point that I was feeling hopeless, frightened, and wondering if this was a normal course of the disease. I went to Penn grudgingly and had made up my mind that there was no more that could be done.
Boy, I couldn't have been more wrong. What a difference in care.
The first doctor I saw took me down the hall with the pulse ox and told me that it did drop and wanted to do testing. He also took down my history. He asked if I was sick alot when younger, types of jobs I had in the past, and family history. He was concerned with my dad working with asbestos and my being around him when he was. Also, both parents have/had heart and lung cancer. He was also very interested in the types of chemicals I had worked around and how long. I never was questioned so much before. I was astounded. He then told me about the different studies and operations that they had going on at their center. He didn't know if I was able to participate but after getting a ct scan he would know better. He ordered a ct scan. I never had a ct scan done. I was properly diagnosed in 2003, even though I had symptoms in the early to mid 90s. But my other lung doctor had never had me get a ct scan or even fought for it. He also had me go for blood tests and sputum test and I had an HIV test done that day.
I returned in 3 wks. and the doctor explained that according to the ct scan, I was not eligible for any of the testing or procedures. All my lobes are affected and therefore lvrs cannot be done. He also said that I was far beyond his expertise and recommended another doctor at Penn that could handle my case. I agreed. I respected that. A great philosopher said, "The wisest is willing to say I don't know." I agree. I left that day with a smile on my face. No, I didn't receive great news but I now know why I feel the way I do, and what is happening. I also know that now I have gone to one of the best places for my lungs. I guess it was just a piece of mind.
Next, I met with this new doctor and he was also very thorough. He showed me my ct scan and explained every slide to me. He told me and showed me on the scan why I was not eligible for any other studies or procedures. He talked to me about the disease. He said that given my age and health, that I was the perfect candidate for a transplant and it would be a double. He explained alot about the statistics and expectancies. He also talked about rejection and such. He told me to think about it and research it if it was something I wanted to think about doing.
I said in the car on the way home...I am doing it. I hadn't researched and hadn't thought about it. I just knew that would be my decision, no matter what. I did research here and there. Maybe not like I should have. Maybe I am scared I will change my mind if I research too much. My next appt., I told the doctor yes. I spent my summer the way I wanted and it was time to get moving. He told me that I would get a call from the transplant center. in about one to two months.
I received a call just 1 1/2 weeks later. I was astounded. I still question why so fast. But I should consider myself lucky and not question it.
My appt. with the transplant doctor was made. I then met with him. He looked over the ct scan and explained about the testing and the procedure and medications and rejection and and and..
. Alot to process. A myth has been dispelled for me. A heart transplant can lengthen your life, a lung transplant doesn't do that. It just gives a quality of life. I guess that was truly a deciding factor for me. Quality over quantity. I choose quality, even if just for a short time. This doctor also told me about life expectancy and what to expect after the transplant. The transplant doctor also told me that I should have all my dental work done while I could.
, I procrastinated so I am going to have to rush to have that done. I will have to go to an allergist because I am allergic to so many derivatives of the medications they use for transplant..but the doctor said they could get past it. He said I was a perfect candidate, but the 3 day testing must be done and hopefully they won't find anything to hold me up from getting on the list.
The doctor explained that in a about a month the office would call to schedule an appt. for 3 day testing. He said they will test for just about everything. After the testing, all the numbers and data are input into the computer (age, health,blood type, and etc.) and it will spit out a number. It is this number that determines where I will be on the list. They no longer put you at the end of the list...it goes by a number. He talked about alot that day and I am relating here the best I remember.
I always take my friend with me to my visits in case I forget to ask something or if he has a question. Also, in case I forget what was said. I have done that quite a bit.
Well, one week later I received a call for the testing...I wasn't home so I called back, they called back and yep, I wasn't home again.
. I started to get worried that they wouldn't think I was serious. I called them back and then it was the holidays. I hadn't heard back from them so after the holidays, I called them back. They scheduled it for the three days. Then they sent a schedule of tests and a pamphlet for referrals to get from my primary through e-mail.
So, folks, here I be.
Most days I am angry. The way I deal with the anger to get it out of my system? I bang a fry pan till I am absolutely out of breath, then I catch my breath, and I start laughing. I am angry because, like some of you, I feel cheated. I felt I was not given good care soon enough. I had the symptoms in my early and mid thirties. I am also scared alot. Not about the operation, but what happens after. That will be the hardest I think. I feel sad, because most days, I just can't be there for my grandson, and after three years of caring for him and of him living here, he expects that...heck he deserves it and deserves to think it. I also find myself crying alot lately....maybe stress of the upcoming tests? I don't know really. I think everything ties together somehow.
My family...another story altogether. So, this is my sole decision.
I am sorry if this is too long for some. I felt that some history was needed about how I got to this stage and how I came to be at the Penn Lung Ctr.
I was asked to do this and didn't know where to start. I guess I found my keyboard,
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I hope this helps others in the long run. If you have questions, I will answer if I can. If I can't, then maybe someone with the experience of a transplant can. If you have information you would like to add....feel free.
As long as I am at peace with my family, my spirituality, my physical, and emotional being and try to keep it all in balance, I will be okay.