9.5 Years after Single Lung Transplant

About 11 years ago my dad had a cough and he thought he had a cold.  He went to a doctor and was given medication.  He went to the doctor a second time because he still had a cough and the doctor thought he might have bronchitis and gave him another medication. After a month of coughing my dad went back to the doctor and he suggested that my dad have a bronchoscopy.  Well his lung collapsed during the procedure.  This was the first time this doctor ever had a lung collapse during this procedure before a sample of the lung tissue was removed.  He then had to go through a mediastinoscopy and following this he went through an open lung biopsy. 

The biopsy results were Idiopathic Pulmonary Fibrosis.  His pulmonologist suggested he contact a lung transplant center and they agreed on Hospital of the University of Pennsylvania (HUP).  Here dad went through extensive testing and physical examination as well as an intensive medical history.  He was an out patient at the hospital for 3 days in order to fulfill all the requirements.  Long story short, he was placed on the lung transplant list.  He waited 19 months for his lung.  Today the lung allocation score (LAS) is used but then where you were on the list is where you stayed.  It was on a first come, first served basis.  Now the allocation of lungs help the patients who needs them the most and is calculated by a series of calculations and formulas.
Here it was Thanksgiving weekend November 24, 2001.  My parents and I had gone out to eat.  I was at home watching a special on TV and my parents called during the part that I had been waiting for.  Playing around I hung up on them and they called back and I did not answer because I thought they were playing with me.  After I watched the 5 minute segment I called them back.  Well it was no joke, my dad had received 'the call' and they were just about out the door.  I met them at HUP and here it was.  It was a "go" and not a dry run.  It was real foggy that night.  So foggy that they could not bring the lungs in via helicopter.  They told us that the lungs were coming in by car.  Well they gave dad some medication to relax and he slept until the doctor woke him up to tell him they were going to start the surgery.  To this day he questions why the doctor even woke him up.  He would have never known.  Anyway, mom and I were up all night and into the next day. He received a right lung.

When we finally got to see dad and he was aware that we were there, we asked him how his breathing was and he gave us a 'thumbs up.'  Later when he was able to talk he said that his first breath was so deep that he thought he had died and gone to heaven.  He said he kept breathing in deeper and deeper.  Three months of pulmonary therapy in Philadelphia and the rest is history.

If you have any questions for my dad please let me know and I we will be happy to answer.  Until then...

Celebrate Life,

Alma

On Transplant List

(The original date of this post was 10/29/2010.  Imported from rawwealth.blogspot.com). 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

Celebrate Life,

Alma

Why organ transplant

(The original date of this post was 10/31/2010. Imported from rawwealth.blogspot.com).
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.

No limit

There is no limit to how much love your heart can hold. So put a little more love in your life right now.
There is no limit to how much beauty you can admire. So make a point in each moment to see some new beauty you've never noticed before.
There is no limit to how much joy you can experience. So go ahead and feel the joy that lives inside, as you generously let it flow out to the whole world.
There is no limit to kindness, to hope, or to faith. There is no limit to the goodness and value that you can imagine.
Though some things in this world are occasionally in short supply, there is no limit to the best things in life. There is no limit to what really matters.
Treasure those good things that have no limit. For there is no limit to the richness they can bring.
-- Ralph Marston

Celebrate Life,
Alma

What is Pulmonary Fibrosis?

(The original date of this post was 12/09/2007. Imported from rawwealth.blogspot.com).
Someone recently asked me what Pulmonary Fibrois was. I sat down and wrote out my understanding of this disease and this is what I wrote. Pulmonary fibrosis is the stiffening of lung tissue. In the classic cases of pulmonary fibrosis (PF) the lung tissue usually forms into honeycombs at the edges. I do not have the honeycombing. When you look at the film of a cat scan of my lungs they show spots that look sort of like cotton candy. Almost like what a freezer burn looks like on meat.

The effect this disease has on my body is that I cannot supply enough oxygen when I exert myself. So if I were to walk at my normal speed, let’s say 100 yards, I would probably need my oxygen, because my body could not product enough oxygen for my efforts. If I do not have my oxygen on and I exert myself I will cough until my blood oxygen level goes back to normal. I am told that I am at the acute stages of this disease and that my body recovers from the lack of oxygenvery fast. Given perfect weather, I could probably take this walk without any problems and I would be fine but those days are few throughout the year. Another effect of PF is a lot of mucous production in the lungs. This is one of the reasons why I started watching what I ate. I know that many foods produce mucous like dairy products.

I basically do everything I used to just perhaps a bit slower. I actually started exercising more and watching what I ate after surving lung cancer and finding out about my PF. So in many ways I have better health and fitness now than before. Changing my diet and becoming vegetarian has helped me out tremendously. Before the dietary changes I would need my O2 to go to the restroom, the mailroom or cafeteria at work. Now I really do not use the O2 at work unless it is an extremely humid day. I also need oxygen if I have to carry anything over a couple of pounds. Now after going raw my health has gone up to another level. I am now able to run under the ball at volleyball and I even jogged ½ mile out on the street last month. That is what the ticker on my blog signifies.

Trust me I have gone through a lot of turmoil over my PF. This past summer I learned to embrace this disease after years of anger and madness. Now I say, given pulmonary fibrosis what is possible. I learned to trust my lungs and relax my shoulders. I do not guard my lungs like I used to. I could actually touch inbetween my arm socket and chest and feel sore. I did not know what it was until I was told that I was holding my shoulders rigid in order to protect my lungs. This was stopping me from deep breathing because I used to guard myself from coughing. Now I can breath down into my stomach. I guess I could go on and on huh? Anyway overcoming this has become my total focus.

"There's only one way to succeed in anythingand that is to give everything." - Vince Lombardi

Celebrate Life,

Alma

Waiting is the worse

Well I had an "a-ha" moment last week.  (The original date of this post was 12/10/2010.  Imported from rawwealth.blogspot.com).  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.    :)

You deserve
You are worthy of a life that's rich and filled with  meaning. And you are worthy of working through the difficult  challenges to make that life a reality.
At any given moment, including this moment right now, you  are fully deserving of life's greatest experiences. It is  never too early and it is never too late to fully feel how  it feels to be uniquely alive.
You deserve to be extraordinarily happy in your own special  way. And you deserve to realize and to understand that you  are the only person who can choose to let that happiness  flow.
You deserve to find the strength within yourself to triumph  over difficult challenges. You deserve to feel the sense of  accomplishment that comes from a job well done.
You deserve whatever you truly desire and whatever you most  authentically imagine. Get busy now, with a love of the  possibilities, and give yourself what you deserve.
-- Ralph Marston

Celebrate Life,

Alma

Breathing is better than chocolate!

My first entry in my new blog. I am very happy to say that I have been blessed and given a second chance at life. I received a lung transplant on 05/03/11. I am doing fantastic and I have to say that BREATHING IS BETTER THAN CHOCOLATE!

I did a blog search on 'lung transplant' and there were only two. Neither addressed Idiopathic Pulmonary Fibrosis (IPF).  I am going to take this opportunity to address IPF, Cystic Fibrosis (CF), Chronic Obstructive Pulmonary Disease (COPD) and any other lung disease that addresses the need for a lung transplant. 

I will be posting entries or links from my other blog that addressed my transplant.  I have many ideas and lots to write about in hopes that this can help future lung transplant recipients and their families.  So for now...

CELEBRATE LIFE,

Alma