Well, I will do my best to inform everyone about what I go through with all things transplant, .
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, .
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.
What a beautiful description of the beginning of your journey. I am sure it will be of great help for those who are thinking about following your path. Maybe even me. I hope your testing goes just the way it should, perfectly, and that you don't have to wait long for your new life. You're going on my prayer list!
Post by Blossom/Jackie W. on Feb 15, 2010 8:45:42 GMT -5
Excellent description Antoinette. I have a question..... you were recently put on oxygen. Was it as a result of going to Penn, or, was it your own Dr that scripted it?
And; another question that you may or may not want to answer. You said that unlike a hear transplant where it can extend your life, a lung transplant can give you QOL..... Do you mind my asking.... what is the average or norm for the number of years you can expect. Again; if you don't know and don't want to know or answer then don't give it a second thought.
Aero, thank you for your explanation of the procedure so far. You have given a beautiful description. I too hope to join you in that procedure. I see my plumo doctor in March and we will again discuss it and hopefully he is satisfied with everything and ready to call Methodist Hosp. in Indianapolis. I have discussed with my children as to their thoughts, but both are in favor of a transplant. Mine would also have to be a double as both lungs are bad. My concern is I have a rare blood type and I'm not sure how difficult that will make things. Please continue posting it will definitely help all of us to understand. I wish you the best dear friend as you go down this road. My prayers are with you .
Jackie, as for the oxygen, my Primary Care Physician ordered it. I had had a very bad exacerbation on New Year's Eve and that is when it was scripted. At my regular pulmonologist appointment at Penn on 1/25, I was told to stay on it. My primary had ordered an overnite study and before the results were given to her, I had this exacerbation.
Ahh, a good question about the expectancy. There is such a wide range. Even the doctors have a very hard time giving an answer to that. Indeed, I don't think they like to. It is sorta like COPD, each transplant is different. The exceptional is 13 or 15 yrs., and I was told by doc that this is very unusual. It also depends on how well you take care of yourself too. I have heard stories where people skip meds and such, not good!!!!!!!! Also, the meds can have an affect on overall health. Some of the meds may affect kidneys. Overall, after the first year and getting past the first year, then I was told I could get 5 to 7 great years. The low end of the spectrum is 3 yrs. Many factors play a part in the number of years of QOL you can get. But, I can also get a second transplant, if my health is still good.
Martie, glad to hear you are considering this and that your family supports you. As far as rare blood type, I read somewhere, maybe another forum, that rare may work in your favor for a transplant. In this I mean that there would not be as high a demand as a common type. You are one step up on me on that one, I don't know my blood type. Yep, all these years and don't know it, .
If all things go smoothly with the testing, then March is my follow up on the determination.
I hope I answered the questions okay.
Today, I started my 24 hr. urine collection. Tomorrow starts the testing at Penn Lung Ctr. It will be a day long procedure. I will start a new thread for that. Tomorrow looks like a tiring schedule , but not difficult as far as tests go.
Thanks for the prayers everyone. I am always thinking of my family here and maybe I don't say that enough, but just remember that.
Aero, You go girl, Ill be watching you very close because Ive been thinking long and hard about doing it myself. You did a excellent job of describing it all thank you. Im also going to get my teeth done next month... I figured that would be the first thing they wanted done. Good Luck. And I was wondering the same thing as Jackie thats pretty much what my Plumo told me also. Bobbi
Hi Aero, You did a wonderful job of describing the thinking and feelings which led you to decide on a TX. As I was reading this entry and the account of your first day of testing, I began thinking of another persons blog, I think her name is Penny. (I have read so much in such a short time, I become confused over where I read what) The other woman was having a lung reduction and had to do pulmonary rehab first. She continued past the six weeks up until her surgery. What made me think of it was that all the other people in her rehab were TX candidates and she said one of the most encouraging things for her was that some of the people who were there when she started rejoined her several weeks after their TXs. What an experience. People she first met pre-TX, rejoining the group with a set of healthy lungs. It made me feel good just reading it. If you're interested in reading her blog, let me know and I'll find it. I've been thinking of you today as you go through your second day of testing. Though I am not at your side, my thoughts are with you and I want the very best for you.
You have such a beautiful spirit, were all going to be on this journey with you, reading your post is like actually speaking to you. I want to be there for you, and if you need me i will hop a plane and take care of you. You deserve nothing but the best. I'm sorry it took so long , but you are getting the care you should have gotten al along.
gosh, I have to ditto everything Toni just wrote....I have just read all that you have written and am so impressed with how you have described it all....very vivid and very thorough! you have done great Areo and the worse is behind you now as far as testing goes...........