Update

Hello!

I wanted to write an update on things.  Thank you to so many people who have been asking and care so much.

I have had tons of testing done in the past 2 months.   My LAM doctor from years ago in Cincinnati Ohio (an incredible LAM scientist) is now working with and collaborating with my Iowa City doctors.  This happened perfectly in God’s timing, which I am so thankful for.  In my last blog, I told you that I would be having a biopsy done on the growth to diagnose it as LAM or cancer the Monday coming up.  That weekend, I received several text messages from women that read my blog about what I was going through who told me under absolutely no circumstances to do that biopsy because of the fact that the growths (if it was LAM) would be filled with ascites and would spill a poisonous substance in my body that would be very detrimental to me.  I emailed the doctor in Cincinnati that I used to work with, even though I have not spoken to him in over 7 years, and he wrote me back immediately and told me to absolutely not do the biopsy and that he would contact my lung team and begin to discuss and work with them on my case.  So, they canceled my biopsy preventing any further problems for me.  Thanking God for that timing and that I wrote my post when I did.

I met with the lung transplant team that week instead.  We did some additional testing, and the LAM doctor was strongly thinking that it was LAM that had developed in my abdomen.  I am not exhibiting common physical symptoms of cancer, so although we cannot positively rule out cancer, I am pretty sold on it being LAM.  My transplant doctor (whom I ADORE) told me that the main growth in my pelvis is the size of a baby.  She referred to it as my LAM Baby.  (They do say laughter is the best medicine, don’t they? 🙂 )  The main growth is massive, but there are also lots of smaller ones…they have taken over most of the abdomen area, specifically pushing my bladder all the way over to the right.  They started me on a treatment called Sirolimus.  This is the medication I took years ago when I was in the clinical trial in Ohio.   The goal of the Sirolimus is to shrink the growths.  It worked somewhat on the LAM in my lungs years ago, but only for a short period of time. I am hoping that it works better in the abdomen.

The immediate concern with the abdominal LAM is the effect on my bladder.  I saw a urologist last month.  He said that it was “quite impressive.”  Again.  Laughter is the best medicine, right?  I had another UTI when I visited him, only my 2nd UTI in my  life, both in less than 2 months.  These growths have displaced the bladder and are pushing the ureters and smashing them.  The ureters are there to transfer urine between the bladder and kidneys, keeping us healthy.  My kidneys are already poor due to all of the medications and immunosuppressants I take.  This extra stress on these organs is not good.  So, it is imperative to get these growths to shrink because removing them is not an option.  Next month I will have an MRI to see if it is working or not.  This is such a rare disease, not a ton of research or cases to really know if things will work, but I am praying with my whole heart that it does.

I know I am in good hands, great doctors and a great God.  Some days I feel better than others.  I feel a dull ache in my belly a lot of the time.  I have so much pressure on the bladder, so I am in the bathroom a lot.  I am nervous that the LAM will develop in my lungs or other areas or that the Sirolimus will affect the great way in which my medications have been keeping me and my lungs going 8 years later.  But I have to just trust that God has a plan here.  In other news, my autoimmune disease has been kicking my butt in the past month.  Lots of pain in my body which isn’t helping.  But I am doing my best.  Regardless, I am living life like normal and doing all that I can do each day!  Hoping I kick this Lam Baby’s butt!!

Thank you for all of the love and prayers.  What would I do without you guys?

Health Issues

TKP_7274copyIt has been a while since I have written. The past couple of years have gone decently well. I have had a few issues here and there, but I have come out of it OK.  This is to be expected after a lung transplant. I still can’t believe I have survived almost 8 years. It blows my mind.

This past weekend has been one of the worst weekends I have had in a very very long time.   Friday night I was sitting at my older son’s baseball game. I was feeling a sharp pain in my side and was feeling overly nauseous. I had no idea why I was feeling that way. As per usual, anytime a transplant patient feels off, it requires a call to the transplant nurse. I told her my symptoms, and she told me to get to the emergency room right away. It was my guess that she was thinking it had something to do with my appendix or something else.  I begrudgingly took the kids home, and Jay took me to the emergency room.

From the start, I don’t think the doctor really thought it was my appendix. I didn’t have all of the symptoms there. He requested a CT scan of my abdomen thinking maybe I had kidney stones.   He walked back in the room about two hours later with shaking news.  First he told me I had a urinary tract infection. Not a big deal. But then…he said that the abdomen CT scan showed an overgrowth of lymph nodes in my whole pelvis. They were so overgrown specifically on the left side that they were pushing things inside my pelvis to the right side, exactly where I was hurting. The radiologist specified that it looked like Lymphoma.

Cancer.

My absolute worst nightmare.

I can’t even begin to describe the feelings I felt in that moment.   I immediately started feeling panicked. I turned and looked at Jay, and his face was completely white. I could tell he was freaking out. He started scrambling and asking the doctor if he thought it could be other things, and the doctor kind of rambled on about a few other things it could be, but that he didn’t think the lymph nodes would be as big as they were if it was something more minor. He told us that he had talked to my transplant doctor, and that they were going to call me on Monday and make a plan with me.

I don’t even know how I made it through Friday night. I was screaming and crying and shaking and completely beside myself the entire night. I could not get control of my emotions. You always know after a transplant that you are not guaranteed forever. You know 100% that there are many things that can go wrong.  Yet, I was ashamed at how upset I was.  I have been given 8 extra years already!  How can I be so upset??

On top of that, I started hallucinating from the UTI medication all night.  I was a mess, all over the place.  I couldn’t stop apologizing to Jay because of what I was putting him through.  Just so many overwhelming emotions.  He was also very heart broken and emotional in his own way.

The HARDEST moment happened Saturday morning when I was waiting to leave for Jayden’s baseball game.  Josiah was already gone with Jay to his game.  I thought I heard Jayden sniffling and I grabbed his allergy medication.  I walked in his room, and he was under his blankets listening to his favorite Christian album just bawling his little eyes out. Uncontrollably.  I tried my best to comfort him, but it was hard because he was trying not to hurt me by crying.  I immediately turned into protective mom mode and did my best to reassure him I would fight my hardest no matter what it is, and that’s just what I intend to do.

Today I was in Iowa City for my consultation.  The basics of it is that the transplant team are thinking 2 options…Option 1 is that this could be LAM (the lung disease that I have that caused me to need a lung transplant) that has grown in my pelvis.  I had no idea LAM could do that!  Sickening to think it could possibly be back in my body again.  The only positive is that if it is LAM, there is no sign of it in my lungs at this time, and my lung function has been steady lately.  Option 2 would be Lymphoma.  Both are scary. Neither is ideal or what I want to deal with.  But, both options bring with it different treatment options that can hopefully help me.   I am unbelievably thankful for that.  And whether it’s chemo, medication, or other treatments, I will do whatever it takes to be here as long as I can.

Monday I have a biopsy scheduled.  I have a PET Scan and other blood work results in the works as well.  I truly have the best transplant team in the entire world, and I could not ask for more.  They are also collaborating with the leading LAM doctor in Cincinnati for advice.

Please pray for me.  Pray for my family mostly. After all we’ve gone through, the idea of seeing my kids and husband go through this again is more than I can bear sometimes.  Anxiety and fear get in the way and that is really hard to deal with for me.  Please pray for peace in my heart.  And faith that God has got this.

 

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.

 

*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.

Lung Disease & Transplant