This site is for those who are suffering from Lung Disease or those who are caretakers of those with lung disease.

This is my 9th Lung Transplant Anniversary!!!

Sandys Hopeful Room

Today, September 30th is a wonderful day for me!  It was 9 years ago today that I received my double lung transplant.  I am joyful and so very grateful for the chance I was given to live on.  It is a day of deep gratitude for the family of my lung donor and my lung donor himself!  It is also a day of thought and sadness that a family lost their loved one.  How do you thank someone who has given you the chance to live???

It reminds me of a Psalm:  How can I make a return to the Lord, for all the good he has done for me?

I think of my donor ~ what did he look like, what did he love and not love, did he have a wife or children???  Did he laugh lots and love more? Who were his favorite sports teams and what…

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This is a story about Tim Whitaker and his last day suffering from Pulmonary Hypertension written by his mom, Annie Boxsell Whitaker.

Sandys Hopeful Room

The story you are about to read is about Tim Whitaker.  Tim had pulmonary hypertension and was dying.  This is the story of his last day.  Tim’s mom Annie is a brave woman!  She and her family stood by Tim with all the love they could muster to help Tim in his illness. . .hope was always there that he would survive. . .but as time passed, it became apparent that he would not survive.

This story is poignant, heartfelt and very brave.  Tim became an organ donor and helped others get another chance at life.

I salute Tim and Annie Boxsell Whitaker and the entire family!!!  You showed tremendous courage and support.  How could a mother forget the child of her womb???

Please remember to become an organ donor. . .As many of you know, I am alive because of an organ donor.            I received my gift of life…

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This morning around 6:30am my friend Joe Smith died.  Joe became a friend of mine when I was told that I would need a double lung transplant.

You see, Joe had had a heart transplant 6 years previously at this time.  We became friends because his daughter, Sandy, worked with my daughter, Megan at the VA Hospital in the CCU.  Megan told Sandy that I needed a transplant and that’s when she told Megan that her dad might be of help to me as I waited for my transplant.

Not long after that Joe called me and talked to me about his transplant and how he felt about it.  He was working full time and he loved being busy.  He worked away from home during the week and went home on weekends to his wife.

Joe had said something to me that made all the sense in the world, he said, “You will not understand how very sick you are until you’ve had your transplant and feel well.  Then you will understand how sick you were”.  You know what?  Joe was right!

He answered any questions I had and encouraged me to hang in there.  He understood my anxiety and told me that the waiting is the hardest part because you just never know when you will get the call.  It’s very nerve-wracking because you know when you get the call it may be the beginning of  new life or the end of the present one.

Joe and I talked on the phone from time to time.  I enjoyed those calls.  Joe was a very brave man.  But I must say that anyone who waits and goes through transplant is very brave.  Sometimes it might be easier to just die than to go through the rigors of a transplant.

A week or so after I had my double lung transplant Joe and his wife visited me.  I didn’t know what he looked like because our meetings were always on the phone.  My daughter asked me  if I knew who this was and I said no.  Megan told me who it was and Joe said, “Hi Sandy, how are you doing?”  Then he started to cry.  He was so happy to see me once I had made it through  the surgery.  It was such a wonderful meeting.  This man helped me come to grips and stay strong. . .

Over the years, 6 1/2 since my transplant we kept in touch with Christmas Cards and an occasional phone call.  I must tell you that I have some regrets where Joe is concerned.  I regret that I didn’t go see him when he was really sick sooner than I did.  I visited him a couple weeks ago in his hospital room.  He was curled in a fetal position and alone in his room.  I had to wear a gown, mask and gloves.

I talked with him  for about 5 minutes or so.  He was having trouble staying awake.  I told him that I was sad about what was happening to him and that I was praying for him.  I let him know that I loved him and I was so grateful for the help he was to me years before.

Joe was afraid to die.  Joe was only in his mid to late 60’s and wanted to live much longer.  I asked him if he was in any pain and he said that he was but they had given him some pain pills.

He apologized that he couldn’t stay awake.  I kissed him on the head through the mask and told him, “I just love ya Joe”.  He started to cry and said, “thank you”.

I told him I would come back to visit.  However in the last couple weeks he was moved to senior living home, then sent back to the hospital to ICU.  I never got a chance to get back there before he was moved out of town to another hospital.

One year ago Joe was diagnosed with Post-Transplant Lymphoma.  Today it took his life.

Joe my friend, rest in peace.  I will pray for you and I hope you will pray for me.  You already have my love.

Sandy Ozanich ~ Copyright 2012

For those of you who are suffering through COPD (Emphysema, Bronchiostasis, Chronic Bronchitis) I would like you to really try to do everything the Drs. say you should do. It will keep you healthier longer. 

 Sometimes the Dr will put you on a Prednisone Burst because your breathing is not great.  You are short of breath and feel like you can’t do anything but sit.  However, Prednisone is one of those good/evil drugs. It makes you breathe better, but it also makes you more hungry, may give you a, let’s say, cranky attitude sometimes, etc.and over years can cause diabetes and other things. It is one of those things that all of us have to deal with. But not to worry now. . .you will be fine.  See this link about Prednisone:

http://www.webmd.com/drugs/mono-9383-PREDNISONE+-+ORAL.aspx?drugid=6007&drugname=prednisone+Oral&source=2

This link will take you to WebMd.  Read about Prednisone and all of the things it will do for you.  Read the side effects and learn all you can about the drug.  You will be using it probably for  the rest of your life and it is important that you know as much as you can about the drug.  Actually, you should try to learn as much as you can about your disease and how to treat it.  Don’t be afraid to ask questions of your Pre-Transplant team, they are there for that also.  If you don’t understand it, ask about it.  This will help you learn and cause you to do what you need to do to stay alive and as healthy as you can be! 

Another thing that happens sometimes with lung disease is acid reflux.  I don’t understand why or what causes it, but it does happen.  I did have acid reflux for about 5 years before I began my emphysema journey to my double lung transplant in Sept. of 2005. I had it pretty bad and had to take Nexium 40mg twice a day.

My lung doctor, Dr Michael Bennett told me that I also had an Asthma component to my Emphysema.  He explained that Asthma and emphysema sometimes go hand in hand.  It is a vicious cycle ~ Asthma will trigger the Acid Reflux and the Acid Reflux will trigger the Asthma. . Go figure!!!

After transplant my acid reflux just wouldn’t calm down and it was causing trouble. Two years ago I had a surgery called a Nissen Fundoplication. The surgeon took the end of my esophagus and pulled it down a wee bit into my stomach, then he wrapped the neck of my stomach around my esophagus. What this did essentially was turn the end of my esophagus in to a small funnel.  Just like a funel prevents anything from coming back up into the funnel, this surgery prevents the acid from coming back up and causing heart burn. I also found out that sometimes if the reflux is bad enough, the acid can come up and drip into your transplanted lungs and can possible cause rejection. My acid reflux also had a big part to play in the sinus infections I got quite frequently.

I don’t take Nexium anymore. And THAT IS AMAZING!

I wish you all the best!!! Truly! But always remember that the Drs. and your pre-transplant team know much more than you do about this disease. . .so PLEASE do what they tell you, believe me, you will have a much better outcome if you do.

As I said before, in another post, Pulmonary Rehab is one of the best things you can do for yourself.  Check into it and go!  You may not be able to walk very far now, but once you go to Pulmonary Rehab you will discover that you have more stamina!!!  I loved it and I made many friends.  And some of those friends have gone on to have their lung transplants (double lung, double lung/heart or lung volume reduction surgery) and they are doing well.  It was so good to see them come back looking pink because they can breathe well and looking healthy!!!  What a gift!!!  It is a most priceless gift that brings joy to the heart.  AND, you do want to take good care of your lungs because someone gave them to you.  You have a duty to keep those organs well so that your donor’s family can know that their gift was not in vain.  It if wasn’t for donor families, we would not have life. . .

Life with COPD is interesting to say the least, but you must know that this journey to transplant is not for wimps!!! We have attitude with gratitude and we face our difficulties head on. . .we fight on and on and on for our new life. I want you to fight with the right attitude – ATTITUDE is EVERYTHING!!!

(This is part of a post I sent to my friend Joanne who is waiting for her lungs and a chance of a new life – God Bless You Joanne!)

Much love to you and may God’s richest blessings be yours!

Today I was discussing with a new friend that during my pre-transplant time I felt like I was living in slow motion.  But, in fact I was.  My day to day life was one of doing everything so much slower than before because I only had 20% function in my lungs.  Makes for a very slow life.  What would usually take 20 minutes now would take 40 minutes to an hour.

I found it so difficult even to take a shower, to dry off, to walk the stairs.  I knew I was in trouble the day I grocery shopping, walking slowly, leaning on my shopping cart.  I took the cart to the car and loaded the trunk, then it dawned on me.  What the heck am I going to do to get these groceries in the house!  No one else was at home that day.  I did the only thing I could do, unload the things that needed refrigerated and leave the rest in the truck for my husband or my son to bring in.  This was also the first day I felt helpless or pretty close to it.  I sat in the living room and cried.  I kept thinking, “is this how it’s going to be?  Will I be confined to my chair and my car?  I am 54 years old and I feel like 84 years old.

Ok, so enough of this pity party!  Nothing happens unless I get a better attitude and get it fast.  This was my epiphany!  I realized from that day forward my life was in God’s and my hands.  If I hold God’s hand, give my health to Him I was on the road to healing. . .If you learn anything from the entire blog, I hope it is this: “ATTITUDE IS EVERYTHING!  DON’T YOU EVER FORGET IT!”  You need to grab hold of your attitude and read it the riot act!  If you don’t believe in God and you don’t believe in yourself you will find yourself in a real predicament.  It is difficult to endure some of the things that encompass an organ transplant.  This stuff is not for wimps.

I worked in a hospital at the age of 17 as a Nurse Aide.  I worked on a floor that was a mixture of Oncology (Cancer) and Orthpoedics.  Strange combo, I know.  But the point I wanted to make is this ~ if you want to live, you will live.  You will live longer.  But, I must qualify this by saying that if you have a life-threatening illness your attitude will help you no matter what you have to face.  You may be healed and live a very long time, you may not live a very long time.  But I tell you this. . .life is worth living, even for a short time.

OK, but I digress!  I lived in slow motion for a couple years.  I kept on and I did the best I could with the help of my husband, grown children and friends.  AND I did very well with Pulmonary Rehabilitation.

Pulmonary Rehab is a God-send to those of us who suffered and continue to suffer with lung disease.  I remember asking my Pulmonary Dr. about Pulmonary Rehab and would he refer me.  He didn’t think it would be of help to me.  He said it isn’t going to raise your lung function.  I tussled with him until he relented and gave me a referral.

That was the best thing he could have done for me.  I went 2 days  a week and exercised for an hour and a half.  We were all closely monitored by nurses, respiratory therapists and physical therapists.  Exercise cocnsisted of the treadmill, statonary bike, rower, recumbant bikes and weights.  We had weight machines as well.  Going to Pulmonary Rehb gave me more stamina, a bit better breathing and a sense of accomplishment.  I knew that Pulmonary Rehab made my recovery from my double lung transplant much easier.

What I will say to anyone who is not working out in Pulmonary Rehab is truly missing out and their bodies and lungs are missing out.  Please do what you can to get involved, you will not be sorry.  Oh, you may hate me at first, but after a short while you will thank me.  AND you may just get to move on from living in slow motion!

To be continued. . .

Sandy Ozanich ~ Copyright 2012

Chuggin’ Right Along

Now that I am chuggin’ right along, the days are getting easier and physical therapy is better, I’m beginning to think that everything is going to be okay.  I am walking more and loving it even though normally, exercise was not by best thing.

I was looking forward to feeling much better and going home.  I had made good friends on 9D.  The staff there is remarkable.  They started to feel like family, so as weird as this sounds, the idea of going home would be a bittersweet thing.  But, I also knew that I would be coming back to visit from time to time.

The only thing that was difficult was getting my appetite back up to speed.  I must admit though that losing some weight would not be a bad thing.  From a few months before my transplant to the present time I had lost about 60 lbs.  Woo-hoo!!!

Things were going well and the hospital decided to discharge me 4 weeks after transplant.  I was so stunned and I was happy to be going home.

But!  Not so fast!!!  I was discharged on a Friday and re-admitted on Saturday to the very room that I was discharged from.  This is so not fair. . .but, I was in incredible pain.  It was the worst abdominal pain I had ever felt.  What a bummer. . .back in the hospital and in terrible pain.  I couldn’t understand it.  Why this pain all of a sudden.

What I didn’t know is that my stomach was not happy.  For five years prior to the transplant I was taking Nexium 40mg twice a day for Acid Reflux or Gerd.  When I had the transplant they gave me Protonix instead.  It was now all out war between my stomach and Protonix.  It seems that my system was so used to Nexium that it apparently was having a temper tantrum because it was not getting Nexium.  The Drs. confirmed my theory.

What does that mean to me?  The pain I was having was uncontrollable.  I told my daughter that I would rather have had 3 babies over the course of that weekend than have this pain.  All I can say that it was a very long time between Saturday and Monday before we would know what was wrong.

In the meantime, after hours of haggling with a nurse who had no idea what she was doing and not calling a Dr. to get me more pain control instead of Tylenol that was ordered, I managed to get mophine in the AM when the day staff came in.  In fact, the pain got so bad that I threatened the nurse that I would go and find a doctor myself or throw myself from the window if she didn’t do something.  Her response was, “so the tylenol isn’t working for you?”  I had only been telling her that for hours.

When the day staff came in I told them what happened.  They were NOT very happy.  They could see by my demeanor that I was in terrible pain.  They were angry that someone would leave me in such pain because “pain control is what we do on this floor”; except for the nurse that I had assigned to me.  I told the day staff to never assign her to me again.  They never did. . .

On Monday, I had an endoscopy to see what the problem was.  It turns out that I had severe gastritis.  I have heard that some lung transplants have had stomach troubles.  I also happen to know that those of us with asthma also more than likely have Gerd.  It appears that the Gerd can trigger your asthma and the asthma can trigger your Gerd.  One big happy vicious circle.

Now that we have determined what was wrong, I stayed another 2 weeks and then was discharged.  Yay!!!

Sandy Ozanich ~ (C) 2012

Every Day A New Adventure

During my stay on 9D at Presbyterian Hospital in Pittsburgh I went down to radiology almost every day for a chest x-ray.  They could tell if the lungs were inflating properly and working.

After a couple weeks post-op those of us who have had lung transplants get to have a bronchcoscopy and a biopsy.  These tests do a couple things; the Dr. is able to visualize the lung, they can see if there is any unusual bleeding.  They also do what is called a lavage which sends sterile water into the lung and then they suction that fluid back out to do a culture so as to check for any infections or viruses.  In my experience I was always put under so I wouldn’t have to “watch” them putting that tube down my throat.  As I have mentioned before, I am a bit claustrophobic and afraid of suffocating, so this was a great blessing for me to be asleep while doing the tests.  The Dr. also takes a very small sample of lung tissue to examine to look for any abnormalities.

**********

I visited a new friend who had a double lung transplant 5 weeks ago.  She is a co-worker of my daughter.  They are both nurses at the local VA Hospital.  She is going through pretty much the same kinds of things I and other lung transplant patients go through.  There are differences because each of us are different and not all lung transplant recoveries are the same.

Michelle for example had her ventilator removed only hours after her transplant only to have it re-inserted after a couple weeks due to breathing problems from an infection.  It does happen and it is dealt with.

This is a really interesting point, Michelle had her transplant on my birthday!  How great is that?  I am a firm believer in connections.  Michelle and I found this connection and it is glorious.  Other friends of mine, two actually, have many connections together.  The 3 of us are connected is so many ways from living in the same area years ago, to working at the same place at different times, to working at a place where my husband worked, etc.  These connections tell me that we were meant to be friends for whatever reason God desired.  I love when that happens.

Michelle may get to leave the hospital in a couple weeks and I will be watching her progress.

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During the course of my first month after transplant I did a lot of walking and healing.  On one of those days when Physical Therapy came to “walk” me I just wanted to rest or sleep. . .but no, today I was going to walk steps.  Great!!!

We walked to the stairs outside the exit door on my floor.  That group of steps looked like Mt. Everest.  Holy Cow!  I had to walk up those steps!  Whew. . .what a project.  For anyone who has been sick for any length of time, just lifting your legs to go upstairs is quite a challenge.  Didn’t know my legs could weigh so much!  My legs felt like lead weights, but I managed to get up I think 6 of those steps while the therapist carried my oxygen tank.  (Yes I was still on a small amount of oxygen for a few weeks post-transplant)  I was happy because I knew my trip back down the steps would be much easier.  That was enough for me for the afternoon.  Makes a person tired.

The days went on and my strength got better.  I was now walking the length of the floor and back.  The first day I made it all the way down the hall to the nurse’s station was a major accomplishment.  I thought I had run a marathon.  In my world at that time, it was.

The day I went home for awhile. . .

To be continued. . .

Sandy Ozanich ~ Copyright 2012