6 1/2 years

Hello!

Another Christmas has come and gone, and as most people who know me are fully aware…Christmas is my favorite holiday.  We had our best season yet!

I can’t believe that I am now 6 1/2 years post double lung transplant!  Never did I imagine this.  I always found myself saying that I want to just live long enough “for the boys to understand and process things”.  Then, I always say “until the next baseball season”, or “until junior high”, or “until next Christmas”, etc.  I am beginning to realize that I will never feel fully ready for that day to come.  I found myself the other day daydreaming about who my boys would choose to marry and what it would be like to be there.  I have written letters to their future wives already knowing that chances are, I won’t be here for that.  But I want to!!!!  I want to see those lucky ladies.  I want to be a part of those special days.  But…who knows.  I don’t know what God has in store for me, but I will just keep pecking away and see where He takes me.  I don’t even think about life expectancies as much as I used to anymore.

In June of last year, the doctors told me that I have a type of rejection going on called Antibody Mediated Rejection (AMR).  This is where my B cells produce antibodies that attack the donor lungs.  The plan was to do 6 months of intravenously administered medications in Iowa City to stop antibody production and then retest in December.  Unfortunately,  upon retesting in December we realized that it didn’t work.  But my numbers were not worst than when I started treatments.  They just stayed the same.  So, now I am continuing my treatments in Iowa City until further notice, possibly forever.

The other issue I am dealing with right now is my auto-immune disease.  This one is rough at times.  Unfortunately, I never know when my flare ups will come on or how long they will last.   These flare ups of my auto-immune disease sometimes happen a few times a month, sometimes every other month.  No rhyme or reason there at all.   Christmas Eve night I had one of my worst ones ever.  I had fevers, chills, excruciating pain shooting all over my side and chest, and there was nothing I could do to make it go away.  It lasted about a week and a half.  There are no treatments for this.  It just is what it is.  To make matters worst there, when I am in that type of pain, I always find myself having anxiety attacks, feeling like I am going to die and like I am in the hospital again with no hope to survive.  Panic attacks are terrifying and feel so real.  I have a new understanding and compassion for people who deal with those things on a regular basis.  I try talking myself down, and not much makes them go away besides just praying and waiting for them to end.

Outside of those things is just trying to stay away from sick people!  I have been trying really hard not to go in public often.  Staying away from public situations.  My immune system is very compromised because of all of my immunosuppressant medications.  With Influenza A and B out there and all of the other viruses, I stay home as much as I can and try to avoid all of it!  I wear a mask when I do go out and don’t touch anything!  🙂  I have noticed that people avoid me like the plague.  They think I am the sick one!  Haha.

I will continue to try to stay healthy and will count my blessings every day.  I never get tired of this life and still appreciate every single day as it comes.  Jay is still the best husband in the world.  He is better than any man I have ever seen in any chick flick I have ever watched!  🙂  And my boys are now 9 and 12, and they are excelling in school and sports and making me a very proud mom each day.  I still live every day with a thankfulness in my heart that I don’t believe I ever would have had if I hadn’t gone through all that I have.  God has been so good to me.

 

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*5 years*

I feel awful that I haven’t written in a year!  But on another hand, I guess it’s a great thing because nothing too dramatic has been going on.  I hit FIVE YEARS with my double lung transplant in June!  I still can’t believe it.  I really can’t.  Never did I think the day would come when I would say five years.  I have always been even-keeled about my situation, wondering if I could defy odds and still be around a year later…much less 5 years later…yet here I am.  Thanks be to God!  Unbelievable.

These five years have been just amazing.  I still have my health issues and my struggles.  My lungs themselves are not causing any real issues.  I am still at about 75% lung function.  That’s great for me compared to where I have been.  But, I still struggle with my auto-immune disease.  Sometimes I feel great and sometimes not.  I still struggle with anxiety and PTSD.  Side effects of my medications.  Heart troubles at times.  Still proving that this double lung transplant was definitely trading one set of problems for another.  But through all of it, I am still here.  I am breathing, and I am here.  I could not feel happier or more blessed for that.

As I am sure I have stated in so many of my blogs, we are HUGE Christmas buffs in our house.  We were all decorated up a week before Thanksgiving.  We have been enjoying our tree and home decor and have done all types of Christmas things already!  I love it.  As easy as it is to feel resentful for the hand I have been dealt with all of my health issues, I know that the passion and gratefulness for life that I have now would not have been the case had it not been for my circumstances.  So, I guess it is true that God knew what he was doing.  Feeling the gratitude that I do now for my life, I would never want to live any other way.

Now, being honest, I have had multiple emotional moments this past month thinking about Christmas.  With every moment I am enjoying with my family, I find myself thinking about the sadness of what if it is my last?  What if it is the last time I put up the tree with the kids?  What if this is the last Christmas program I get to see at school?  What if this is the last season of making Christmas lists with the kids?

I have tortured myself in the past year also with sports as well.  We are a huge sports family.  There is almost nothing in the world that I love more than watching my boys play sports.  The boys play travel baseball and play other sports as well.  I am BY FAR their biggest fan.  Never missing a game.  Always being their cheerleader.  I am there to get their Gatorades.  There to support them and love them.  There to wet their cooling towels between innings.  But what if this is my last season with them?  What happens when they have their first games without me and look out into the crowd and I am not there?  I can’t stand the thoughts.  I can’t stand the idea of missing anything.  I am not a crier, but this gets me crying.  A lot.

I quickly get reigned in by my amazing hubby.  My feelings are valid, and they will never go away.  All I can do is make every moment count…and I do.  I most certainly do.  I plan on living every day of this Christmas season like it’s my last!  Whether it is or it’s not.  And I hope all of my friends and family do as well.

Merry Christmas!  As always, thank you for all of the love and support.

4 years and counting…

So, here I am!  4 years and counting.  Incredible.  Every time I hit a mile marker, I think, “How did I get here?”  It’s beyond what I ever expected when I chose to get on the lung transplant list and was transplanted on June 10, 2011.  I am so blessed.

Emotions ran high for me when my 10 year old Jayden came home from school yesterday.  He said he had been worried all day about me in school because I was on my 3rd day of feeling sick and in pain with a flare up of my auto-immune disease.  He walked in and sat next to me and gave me a big hug.  He then said, “Mommy, I am not looking forward to the winter.”  Having no idea when he was talking about, I asked him why.  He had such a sad look and said, “I don’t want the winter to get here because I don’t want you to die because it will be closer to the 5 years.”

We have been honest with the boys that as the years go by, my chances get smaller.  The national statistics at this time are that 83% of people survive 1 year, 53% of people survive 5 years, and 28% of people survive 10 years.  Those are just the facts, and the boys know it.  I guess this is just the first time that I realized that it is in the forefront of his little mind to worry about that.  Kind of breaks my heart, actually.

I can’t begin to say the feelings that rushed over me in that moment.  Jayden is such a sweet, sensitive kid.  More than Josiah who is only 7, Jayden experienced everything with my surgeries and time away.  He remembers what it was like moving house to house with friends while Jay and I were gone, and he was the one who always felt like he had to take care of me, etc.  He has dealt with so much more than any boy his age should have to.  I want thinking about my life expectancy to be the LAST thing he ever thinks about.

It was just a great reminder this week to appreciate each and every moment.  Everyone should.  I am like a broken record saying this on my blog.  🙂  But it is so true! Sometimes, I let time get away from me, and I let days go by when I am not as appreciative as I should be.  I let days go when I don’t spend as much cuddle time with the boys as I should and where I lack the awe that should come with my extension on life.  Luckily for me, my 10 year old checked me on that yesterday.  I reminded him how much I love him and that even though we have no idea how long I will live, I reminded him that we have TODAY.  I asked him if we did everything yesterday that we could to enjoy each other and the miracle of that day.  And we spent time together thanking God and praying that we have many more days left in His plan for us.

Definitely something for me to focus on and thank God for each and every day.  And anyone reading this blog too!  Life is such a precious gift.

Disney Trip & Health Update (3 1/2 years post lung transplant)

Going to Disney World with my family was something I never in a million years thought would happen!  At my sickest, I would say to myself that it was one regret…for my kids not to have that magical memory with their mom forever.  Well, 3 1/2 years after my lung transplant, Jay and I surprised the kids with a magical trip to Disney World.  Outside of aching feet, the entire trip was truly magical and wonderful.  Every bit of it.  I walked around 10-15 hours a day and went on every attraction that I wanted to go on.  It was such a blessing and a miraculous time that I know I will never forget.  PhotoPass_Visiting_Magic_Kingdom_Park_7202818331

It’s funny how God works because had I not been through all of what I have been through, I definitely don’t think I would have had the capability in this busy and generally unappreciative culture to really enjoy and savor every last minute.  I know what it feels like to know you don’t have forever, and I know what it feels like to know that this may be your only opportunity.  This allowed me to really enjoy these memories.  I feel so full after this experience.  I can’t explain it enough to you.  ❤

Health-wise, my lungs are doing well.  My Pulmonary Function Tests are remaining steady at about 76% lung function.  That is seemingly low compared to a normal person, but I am loving this and making it work while not noticing a difference at all!  I have not a single complaint about that.

Outside of my lungs, I have developed an autoimmune disease which has caused some significant trouble at times.  It began about a year and a half ago where I would all of a sudden get fevers and severe (and I mean SEVERE) swelling and pain around my lung cavity with pain shooting all over my back and arms.  I have had spells of this where I have been bed-ridden for weeks at a time, and I have had spells of this where it has just been a week or two of flu-like symptoms and pain.  These spells come completely out of nowhere and I have no idea when they will come about or how long they will last.  The pain I endure during this time creates great levels of anxiety in me, unfortunately.  I have been diagnosed with PTSD, and this causes me to often have anxiety attacks during bouts of pain in my body where I feel like I will die and like I can’t make it anymore.  I absolutely HATE when this happens.  It is so uncharacteristic of my personality, but I can’t control it when it is happening.  Jay is really patient with me and helps me through it.  I think that when I feel pain, it makes me feel like I am in the hospital dying and like every day will be my last day.  I know that logically my feelings don’t make sense, but if you have ever had an anxiety attack before, you know that it pretty typical.

We don’t really have a plan of action yet.  We are handling things with each spell I have of this new autoimmune disease.  We aren’t really sure which one I have, but Familial Mediterranean Fever Syndrome and Lupus have been tossed around as the top contenders.  The scary thing with this is that all of the medications that I take are meant to eliminate most of my immune system so my body doesn’t notice my lungs as the foreign organs they are and attack them.  Well, every time I have an attack or spell of this autoimmune disease, the white blood cells in my body go crazy with all of the inflammation and swelling that I have.  So, it is counter-productive and definitely hazardous.  With the last 2 week spell I had a month or two ago, we used high levels of steroids to try to stop the attack, and it did seem to alleviate it a bit.  We will just keep trying new things to see what works.  I guess I am a work in progress.

Please pray for my body to cooperate and that this new disease does not hurt my chances.  I believe that God always knows what he is doing, and I will leave it all to Him.  I just know the power of prayer, and a little bit of begging never hurt anyone.  🙂

God bless, enjoy the Easter season.  I am looking forward to my 4 year lung birthday on June 10th.  I have so much to be thankful for.  As always, thank you to my donor and her family for sacrificing her organs to give me this extra time, and thank you most of all to God my Savior for all that He has given me.

Emotions

In true Melanie Putnam fashion, I have to write down and be honest about how I am feeling today.  I am a part of a closed Facebook group for lung transplant recipients and patients waiting for lungs.  I read it often for inspiration and to offer advice to other individuals experiencing all of what I have.  Last night, I was heartbroken to read the story of a very young woman who had a lung transplant and is in chronic rejection.  (This is when your body permanently rejects your lungs.) Her heart and kidneys are too sick from all of the transplant medications that she takes, so she does not qualify for another transplant.  Her lung function is down to 20% or lower at this time.  All that her doctors can do for her at this point is to keep her comfortable.  There is no other treatment or help that can be offered for this beautiful young lady.

And last week, I read about a young, incredibly healthy and active man who was only 3 years out from his lung transplant who out of nowhere ended up in rejection and needing new lungs within a matter of just a few months.  He is hoping that he will qualify for a second set of lungs and will get them in time.

This is my reality.  While I am doing fine right now, I know what the future holds.  I know that there will be a day when I will get that news and my life will consist of just “being kept comfortable”.  For the inevitable.  And this could be next month, in a year, 4 years, etc.  I have no idea.

I remember experiencing the feelings 3 years ago when I knew I was going to die if I didn’t get my lungs in time.  I knew that I would not see my 2 year old and 5 year old grow up.  I knew that.  It was my reality.  But, I had the hope of getting my organ transplant.  I could focus on that.  I had options.  Reading testimonials of people I have online relationships with who are in chronic rejection and know they will die with no options whatsoever is terrifying to me.  Absolutely terrifying.  

I can’t comprehend a day knowing that there is no hope for me and that I will miss my family’s milestones.  I can’t begin to think of what I will say to Jayden and Josiah knowing that I will not be around for them.  It’s more than I can fathom right now.

I think I will allow myself this one day to grieve these feelings and thoughts that I am having.  I can’t stop crying today and thinking about all that can happen.  However, tomorrow, I want to wake up and once again just live like I am dying.  I want to live every day like it is my last and just be grateful for every moment no matter what!  I imagine that people in my shoes will probably relate to my feelings right now, and I am sure these feelings are normal.  I just don’t want to dwell on them going forward.  I know it is okay to feel emotional at times, but then I have to pick myself up and move forward on this awesome journey of life.  

Tomorrow is a new day, and I will do just that.

3 Years

June 10th marks 3 years of new life for me.  What a miracle.  Every day, every month, every year that passes by makes me feel so grateful and so scared at the same time.  Thrilled that I have had that many more opportunities to be with my family and scared that I am getting closer to the scary statistics.  It truly is a bittersweet thing to see the days go by.  As I tell so many people, I just feel beyond blessed to be a part of my kid’s lives, and I can’t even begin to say how much I am looking forward to another 6 months and another year, etc.

My year has been fairly uneventful.  I did have a stint in the hospital for a few days with some heart issues, but those seemed to have been a fluke.  Other than that, I have had minor issues…nothing to complain about.  Keep the prayers coming, and thank you for all of your love and support!

Thank you Jesus for another year.  And speaking of thanking Jesus, here are some journal entries my kids wrote about 7 months ago that I never want to forget.  Those 2 boys of mine are miracles to me, and they are well beyond their years in understanding.  Their grateful hearts help me to remember each day to be thankful for all that I have been given.  I asked them the question, “Tell me about a miracle in your family.”  Here were their precious answers.

JoMiracle

Caption: “When Mommy went to the hospital, God saved my mommy.”

JPMiracleCaption: “When Mommy had bad lungs, the Doctors said my mom was going to die.  But God made her live just in time, and we made a party for her.”

FAM

US

Two and a half years later…

I had a pretty awesome 2013.  Josiah is in kindergarten and Jayden is in second grade. They both are doing so great in school and are becoming such good little boys.  Jay and I are so proud of them every day.  I can’t even begin to say how happy we are for who those two little guys are.  We have enjoyed so many fun things this past year, and we are so blessed for all of this extra time that my lungs have provided.

Even though my lungs are doing fairly well, I must be honest that I am still guilty of thinking of negative things these days.  One thing I always said when I started this blog YEARS ago when I first got sick was that I refused to not be honest about my feelings.  If I am going to write my blogs, I am going to be honest and say what I feel and not what others would want me to say.  I am human, I bleed red like everyone else, and I am full of emotions sometimes.

I worry often about life expectancy. Lung transplant statistics show that 50% of people don’t make it past the 5 year mark.  And it just goes down from there.  Now, I have so much hope that they will continue to develop new anti-rejection medications and new ways for all of the medications that I take to not be so toxic on my organs.  I keep praying that the steroids and anti-rejection medications will keep tricking my body into thinking that I don’t have foreign lungs, and therefore will not reject them.  But, the truth is, I don’t have any control over any of that.  I can’t do anything more to change the outcome of what will happen.  I am following all of my doctor’s orders, taking all of my medications, and trying to keep my body as healthy as possible.  Other than that, my life is in God’s hands.  It is so bittersweet being 2 1/2 years post lung transplant because I am so blessed and happy to have made it this far, but the farther I go out, the closer I get to the statistics that scare me so much.  Make sense?  🙂

This past year, I had an CT scan which showed that the bottom of my new lungs had some air trapping going on.  We have no idea what it is, but it is scary thinking that maybe LAM is developing again in these lungs too!  We did some testing to see if maybe the damage was being caused by acid in the stomach, but those tests were negative.  So, we will just keep an eye on it and see what my lungs do going forward.  Another thing that I totally cannot control.  Only God can.

This year, I also underwent a hysterectomy.  We did this procedure due to complications from another condition I have called PCOS.  (Polycystic Ovarian Syndrome) which was causing excessive bleeding and also symptoms of anemia such as fatigue, weakness, etc., among other things.  Of course further child bearing has not been an option because of medications I take and the fact that my lung disease is worsened by pregnancy.  It was very hard to have the hysterectomy done because I always wanted a huge family of 4-5 children.  This surgery was so final to me.  It was tough to swallow, but had to be done.  A miracle did happen in all of this, though.  When I went in for my follow up, my OB/GYN walked in almost in tears.  She is an amazing Christian doctor and is so very special to me.  She said that the pathology report came back and showed an overgrowth of precancerous cells in my uterus.  She said that due to my PCOS and general health history, she had no doubt in her mind that I would have had full blown uterine cancer in no time.  It was a blessing and a miracle that I decided based on her recommendation to have the procedure done.  Again, another thing that was out of my control, but as always, God protected me and saved me from whatever could have happened.

Life is just a captivating thing, it really is.  It is only a short-termed place for us to be in.  It is temporary in light of what eternity will be.  And truthfully, I am not afraid to die any more.  It is just this natural fight I have in my heart sometimes that makes me feel like there is just not enough time to do and experience all that I want to do.  My prayer always is that I can just STOP, and enjoy every moment.  No one is guaranteed tomorrow.  And as much as I have been fighting these feelings this past year, I came across this video today of a young wife and mother of 2 small children who lost her fight against cancer.  And 4 months prior to her passing, she gave this truly amazing speech in which she says everything that I feel, and exactly how I want to live my life no matter how long it is.  I wanted to share it with everyone.  It is 11 minutes, but the entire speech was actually an hour.  It can be found at http://www.deathisnotdying.com.  This speech truly moved me to tears, and inspired me in my heart to remember how much God loves us and that every day is a gift to be cherished.

http://www.godvine.com/Mother-Dying-of-Cancer-Gives-a-Godly-Life-Changing-Final-Speech-3703.html

Lung Disease & Transplant