Monday, December 6, 2010
I just finished a batch of apple/celery juice. What I am doing now is making a big batch at once and storing the juice in stanless steel lined drink cups. I read that stanless steal helps to maintain the nutrients. I used to do the drinks as I wanted to drink them but now a days I do not have the energy to do the drinks a few times a day and clean up the machinery. I make enough that lasts me about 3 days. Conserving energy and getting my vitamins. I also ate 1/2 canteloupe so I am good to go for a while.
Well I finally heard from Duke or shall I say my nurse practioner did. They want me to do 2 tests and when Duke receives and reviews the results they will schedule an appointment. In the meantime I have reached out to Duke to see what the process is and how long this will probably take. I had to leave a message and am awaiting a call. My calculations estimate that the visit could be within the last two weeks of this year at best. YIKES! To think that I wanted this all done before this winter. Well you cant always get what you want when you want it.
I also called Cleveland Clinic to get information from their program. I know they will fly me into their facility at time of transplant. I had to leave a message there as well. I did get to talk to the transplant coordinator at University of Pittsburgh Medical Center but I would have to live in PA within 3 hours of Pittsburgh and their average wait time is 6 months. This would be like starting over for me so this facility is out as far as my second choice. It is between Duke and Cleveland Clinic."
Not too late
It's never too late to richly live the moment you're in. Don't let regrets about the past destroy the unique opportunity you have right now.
Do you feel frustrated by your lack of progress? Then tap into the energy of that frustration to bring yourself fully to life in this moment that you now have to work with.
Today, you are more experienced and knowledgeable than you've ever been. Today, you can be more motivated than ever before to reach in and connect with your own special goodness.
And today you can put all of what you have into making real and positive progress. Today you can connect in a new and fulfilling way with what matters most.
You've already made an amazing journey to get to this moment. You've brought yourself here for a reason, so let yourself live that reason.
Make life the best it can be right now by doing something truly meaningful with it. Whatever you've come through, wherever you've been, it is never too late to feel the beautiful joy of being alive and making a difference.
-- Ralph Marston
Wednesday, December 1, 2010
Well I had an "a-ha" moment last week. I was talking with a friend about my family's emotional well being during my dad's pulmonary fibrosis and his lung transplant. When I told her that 'the waiting was the worse time' it dawned on me that, that is where I am now. I am waiting and this by far has become the most stressful time to date. Yes there are moments that I cannot stop coughing nor can catch my breath that become very stressful but these times pass. They come and go. Waiting on the transplant list is an underlying stress with many peaks and valleys but the stress is always there.
So what do I do. I continue to go to pulmonary therapy 3 times a week. I still drink my green smoothies daily. I have not talked much about raw foods lately. I guess I have been consumed by the transplant however I have not lost sight on how important diet and exercise is. I want to be the absolute strongest I can be for this surgery.
Remember I start training for volleyball and 5K races the day after surgery. :)
Monday, November 1, 2010
It is no secret that the stronger I am before surgery, the stronger I will be post surgery. To think of all the work, work outs that I have done trying to stay in shape. Working my lungs with cardiac exercises, the conditioning and the strength training. Now when I need to do these things the most is when I have the least energy. Yes, that does make sense due to the progression of this disease but it stinks. I could never let all that work go in vein so I started pulmonary therapy when I realized that I could no longer play volleyball. Playing volleyball with two oxygen tanks took a lot of coordination and strength. When the two tanks could not deliver my needs I knew it was time to quit (temporarily of course!) Ironically enough, as I think about it now, it was shortly afterward that I started using oxygen 24/7. So I guess I did get the best bang for my buck as far as oxygen goes. :)
I go to pulmonary rehab three times a week and I can only do 26 to 30 min of cardio but guess what? I do 26 to 30 min of cardio! I know am transitioning back to as much raw, healthy, nutritional foods. Life happened and I fell off the "raw foods" wagon. I am really just trying to get back to being vegetarian. I have been enjoying seafood. Some times I can do these things overnight and other times it is a transition. I have not given up my green smoothies though. These I enjoy almost daily. I feel that if I can eat mostly vegetables perhaps that will get my energy levels up some so that I can move around more. I have become too sedentary. I live my life avoiding oxygen deprivation and avoiding coughing.
Besides I have a few 5K's to run after my surgery. My nurse and I are running the Donor 5K in Philadelphia next year, I have a 5K in Puerto Rico in honor of my cousin. There are three more that I have planned with friends. I have a lot of training to do but first I need to upgrade my equipment.
Sunday, October 31, 2010
Days after I was on the organ transplant list I made a list of reasons for myself as to why I should be on the list. For some reason my life experience, lab test results and internal suffering was not enough. I had to see it on paper in order to try and justify it to myself.
I have been on oxygen 24/7 since the end of June 2010. So I keep at a level that is good enough for me just sitting or laying down. If I have to stand up or move or talk I have to adjust the level higher.
This was a list I created months ago:
Moving in bed, walking to the bathroom, brushing my teeth, bathing, talking and standing up. I kept telling myself, this is not normal Alma. It may be part of my world and others dependent on oxygen supplementation but it certainly is not normal. Nor are the coughing spells I go into. I can cough anywhere from 3 to 4 minutes to 20 to 25 minutes. These spells come from anything. Sometimes it is from exertion where I did not get enough oxygen, sometimes it could be the weather. Be it humidity, heat, cold or wind. It could be pollen, dust, perfume or scents. People with IPF (Interstitial Pulmonary Fibrosis) are hyper-sensitive to many smells.
Saturday, October 30, 2010
The best example I could use is that if I had met anyone with any of my cousin Teddy's or niece Patricia's organs it would have comforted me. Unfortunately too much time lapsed for them to give organs because of the way they passed. The comfort and joy that I believe I would feel if I knew my relatives would have given others a second chance in life is what helps me to accept this gift for myself. I was able to process these feelings better when they were for my father but it is very different to internalize for myself.
This is assuming that the organs I receive are from someone who has registered as an organ donor. Now imagine getting organs from someone who was never on the list. These dedicated employee's that work for UNOS make calls to families during the worse times of their lives. These people are grieving and making arrangements for their loved one's passing they are asked to save other people's lives through organ transplantation.
Friday, October 29, 2010
Gosh, I have been procrastinating on posting and now that I actually am sitting down to post I am overwhelmed by everything. I guess writing what I am about to say is another way of having to face the reality of my health and my life.It is 6 years this month that I am on oxygen. I am now on the organ transplant list and I am waiting for two lungs. A lot of life has transpired in the last 6 years and I could never recap it all but I must say that I have put my best foot forward and have lived my life with a zest like never before. Out of the last 5 years, this past year has been the most challenging of all. I am unable to play volleyball and get around as before. I basically stay at home and wait for assistance to go shopping, to clean my home, for meals and any leisure activities outside my home. However, let me tell you what I can do!
I can keep my positive attitude.
I can keep a smile on my face.
I can keep working out at my pulmonary rehabilitation sessions.
I can keep making goals and visualize them.
I can keep making affirmations and I can pray.
I can keep working towards making myself stronger before surgery so I can come out stronger from it.
Decide to enjoy
Even the most difficult work feels easy when you let it flow from your heart. You can take on the most complicated and challenging tasks with effortless ease when you let go of your resistance to them.
Do you feel resentment about what you must do? If so, you're only making it more difficult and unpleasant.
Can you choose instead to feel sincere gratitude for the opportunity to get it done? Of course you can, and by so doing you dramatically improve your performance.
If the effort feels disagreeable, that's only because you want it to feel disagreeable. And why exactly would you want that?
Resentment and resistance will only bring you down, and cause you to work longer at doing what you don't want to do. Yet it is always within your power to make a positive change.
Decide to enjoy what you're doing, and just like magic you'll suddenly be doing what you enjoy. Not only that, you'll be doing a much better job of it.
-- Ralph Marston