Tuesday, April 2, 2019

March: a new normal


Tell everyone who is discouraged, be strong and don't be afraid!  God is coming to your rescue!

Isaiah 35:4



March has been a busy month, but I have made significant progress in the recovery process.  We are settlng into apartment life and venturing out a bit on nice days.

My schedule is very busy.  I now understand why I have to be so close for three months.  Every Monday I have labwork, xrays, spirometry, and see a provider in the transplant clinic. That takes half a day.  I go to rehab and work for about two hours- every single day except Saturday and Sunday.  Most weeks I need extra bloodwork- one week I actually had to go every day!  

I have about 14 books here that I was looking forward to reading.  Because of the crazy schedule and the prednisone, I find that I cannot focus well for extended periods of time- I work better with one task for a period of time, then switching to something else.  The books will have to wait for now. 

One of the things they worry about with lung transplant patients is aspiration.  Swallowing can be affected by the surgery, so there are some "routine" tests such as the gastric emptying test I had done this month.  



This test tells how quickly food moves through your stomach.  They feed you a meal with radioactive tracers and then take pictures at various intervals for four hours.  It was hard to get the food down- they prepared these yummy eggs in the lab in a microwave.  I am not a huge fan of eggs so I tried to mix the jelly with them.  Why can't they put the radioactive tracers in cheesecake?



Thankfully, the test was normal.  Next month I will have some tests to check my swallowing and the acid level in my stomach.  I can't wait.

Some really great things happened this month- I finally had ALL of my staples removed- here are the last of them- I started with 32.



I should have been collecting them all for some fancy piece of commemorative jewelry.

I also was able to get in the shower -for real.  I was a bit nervous, to tell the truth.  I had my shower chair here just in case.  Imagine how wonderful it was to be able to make it through a long, hot shower without having to sit down and rest!  That's what healthy lungs will do for you.

I am finding that I am having to re-learn to breathe.  Often I will notice that I am doing pursed lip breathing for no reason.  I have woken up a few nights wanting my oxygen.  It is not that I need it, or even think that I need it, it is just that it was a part of me for many years.  It is odd not to feel the cannula on my face and hear the soft noise of the concentrator at night.  

I am having to find who I am without lung disease.  I did not realize how much I was stuggling to breathe and to walk before the transplant.  

I saw Dr. Robbins early in the month.  He told me I could go home for Easter- for the entire weekend!  He also stopped my Neurontin.  

One small glitch- I have had an annoying cough for over a month.  He is not too worried because my lung function is good, my labs are good, etc.  They had me try an antihistamine but it did not help.  We are just going to give it some time.

During the surgery, nerves are cut, which impairs your ability to cough effectively, and affects the gag reflex.  It is very easy to develop pneumonia, so maybe all the coughing I am doing is preventing something worse.  I also am unable to laugh normally at this point.  I am told that will get better.

We were so happy to visit with our friends David and Cindy Willard.  We miss them so much and we are going to be more intentional about spending time with them.



They brought homemade bread, jam, and marmalade.  It did not last long.


My good friend Jennifer McManis made this bright throw and sent it to me.  It is perfect for spring!



Speaking of spring, it has been cold most of the month, but just outside our window is a beautiful reminder that God is making all things new.



One of my students sent me this awesome shirt!



Sometimes you have to travel a little farther than your 10 mile radius because you NEED Chick Fil A.  Dr. Robbins laughed when I confessed, but I know you understand.  




They brought us each an ice cream cone when we finished our meal.  Is this a senior citizen thing?



Sometimes you also have to try out famous local establishments after working hard at rehab!  



Christy and Anna Kate came on a Sunday afternoon and we went to the Southern Women's show.  It was fun!

Of course I wore my mask.  I am used to people looking- and it does not bother me.  I generally will talk to children about it when I see them looking.  However, one of the vendors looked at me and addressed me as "Bird Flu lady."  I promptly told him I had a transplant and he hung his head.  



One of our graduates, Dr. Ethan Simpson, came to see me.  He is a CRNA at Vanderbilt and a wonderful young man.  It is so encouraging when students actually want to come visit their stuffy old professors!



He brought me some goodies!  I really love the badge clips, and he got them from a colleague who was selling them to raise money for a mission trip.  All the better!


Michael and I had our 33rd anniversary on the 22nd.  He went to Jackson to take care of some things, and the girls came up here for a fun weekend.

They had never been to the Pancake Pantry, so......




We spent some time at the Parthenon.  It was fascinating.  I want to go to Greece now!




As beautiful as this statue must have been, it is nothing compared to the glory of the one true God!  Those ancient Greeks are in for a surprise.

I was able to keep up without finding somewhere to sit and rest.  Amazing!




Poor Anna Kate was worn out from all the culture!  Chelsea brought Willie, so he supervised all naps.






Meanwhile, in Jackson, Henry was supervising Michael's work outside.



This is my good friend Karen Mitchell, who had a double lung transplant in the summer of 2017.  Her sneaky husband told me she was going to be in Nashville with their youth group, so I surprised her!  It was great to see her.  Doesn't she look amazing?



These goodies were left outside of Chelsea's apartment door by an anonymous friend.  Chelsea thought we had sent them to her!



This is Dr. Stephanie Norfolk, one of the transplant pulmonologists.  I saw her for my last visit this month.  I had not seen her since I was in the hospital. She told me that one of her patients was talking about "the amazing nurse who is a blogger, etc."  Of course she could not confirm or deny that I am a patient. I hope that I have encouraged others. I love all of my providers, but Dr. Norfolk has a way of connecting with patients that is special.  She looks at you while you are talking and listens intently.  She puts a hand gently on your knee and validates what you are saying.



She was very pleased with my progress.  She made me VERY happy by decreasing my steroids and stopping my antifungal.  Fewer pills- yay!  She also gave me permission to go home for the weekend.

My FEV1 is up to 91%, which is awesome.  My labs are good - kidneys are not perfect, but MUCH better.  I am walking 3 miles on the treadmill in an hour on a level 3 random program, using the Rex for 20 minutes, and doing arm and leg weights twice a week.  I have a goal of walking in a 5K that our students are hosting to raise money for St. Jude and honor my donor.  It will be on May 4th so I should be ready.  

One of my challenges in rehab is the elliptical.  I can only do 2 minutes on it.  It is an instrument of the devil.

I still have the cough.  Dr. Norfolk said there has been an opacity in my lower right lung on xray since my bronchoscopy.  It has not changed.  She ordered a CT, and they feel that it is a hematoma from the bronch, and it will resolve.  She ordered some hypertonic saline in the nebulizer, and has me using a flutter valve to loosen any secretions.  Pray that this resolves soon. I am sick of it!

Going home for the weekend was such a treat.  Nothing like a big drink from Sonic for the ride (and maybe a burger and some tater tots.)



I slept for 8 straight hours for the first time since January 22.  I did not tell anyone I was home because I was not sure how tired I would be.  It rained on Saturday and I just enjoyed watchiing the Food Network with Henry.

Here is something odd/funny.  I have had songs running through my head that normally would not.  One morning it was "Addicted to Love."  If you know me,  you will know that I never really listened to pop music.  I assumed that Huey Lewis sang it!  The only words I even know are the ones in the chorus, so those are the ones stuck in my head over and over. I wonder if this song was a favorite of my donor......

As we prepare our hearts for Easter, please remember my donor's family.  This will be their first Easter without him/her.  I am so grateful for the gift they have given me. I have had the opportunity to spend time with my family this month doing things I could not do before.  My quality of life is so much better- even two months out.  I want to make this family proud of what I am doing with their gift.  I am still amazed at God's hand in all of this.  The story is not mine- it is HIS. 

My three month bronchoscopy is scheduled for April 23.  If there is no rejection, I should get to go home for good that week! 






Sunday, March 3, 2019

February: Showers of Blessing


You can be sure that God will take care of everything you need, his generosity exceeding even yours in the glory that pours from Jesus.
~Philippians 4:19 MSG

February was a month of blessings. I was overwhelmed by the outpouring of love from family, friends, colleagues, and people I do not even know!  It was so hard to receive, because most of us are on the giving end.  I had to come to the realization that God would bless this, and that it was being done in the name of Jesus.  In addition, it honors my donor.

While I was in the hospital, my dear colleague and friend Dr. Cathy Ammerman brought a huge bag full of practical items- one particular was a soft blue blanket- it was so nice to put this on my hospital bed.  Another friend, Shelley Williams, brought a basket full of items for our apartment.

The day after I came home, my friend Betsy Taylor brought frozen homemade soups and casseroles!  Along with Betsy, the chefs were Emily York, Honey Wage, Beth Dubis, and Jenny Pagoaga.  Our freezer was full of comfort food.

In the College of Nursing, we have faculty and staff known as the "Elves."  They are anonymous and do all kinds of nice things when they see a need.  I was the recipient of their kindness.  The "Elves" gave us an old fashioned "pounding."  They sent huge containers of food and supplies to stock our cabinets.  They also included my favorite snacks, cleaning supplies, remedies for my dry mouth, and things  I probably have not seen yet!

My friend Patsy knows me well.  She sent the softest throw I have ever seen- and I am not sharing it.  She also sent bags of my favorite candy, soup mix, and a Panera card.  Charlotte sent a beautiful soup mug/tea mug and book, and LeAnne brought a snuggie and a candle.  The undergrad students and faculty sent me the most awesome poster.







Dr. LeAnne Wilhite came on Sunday and brought another load of love!


The next weekend my friend and fellow transplant patient brought her daughter Kyndall all the way from Texas to visit me.  I don't know how they fit all of this in their vehicle.  My favorite was the drawing by Kyndall.  I love how the lungs are happy and strong.



We went to the transplant floor to take our picture with "the sign."  As AA says, this represents four lives and two miracles.  Kleenex, please.


Michael gave me an awesome gift and it was just what I needed!


Our friends and colleagues Jim and Dr. Joyce Snyder came by.  I loved listening to their mission trip stories!  They brought a fancy teapot and yummy tea!



 My colleague Dr. Jay Bernheisel, who had a liver transplant at Vandy, came by to visit.  He reminded me that there are four genomes in this picture!


Chelsea brought one of the best gifts ever- a visit from Willie!  Way better than medicine.


Do you see my chipmunk cheeks? Of course you do (but pretend you do not - and please do not tell me that my face "looks good fuller.") Ladies, there is one upside to the prednisone "moon face."  No botox or fillers needed!

Christy painted this for me.  More kleenex, please.


My friend Shannon, who along with her family is taking care of my dog, designed and sent this mug!  She also sent me a book written by the wife of a man who received a lung transplant.


Here are some pictures of our "city house."  We are so grateful as it is just across the street from the Dayani center, where I go for rehab.  It is also just across the street and down a half block from where I go to get labs, X-ray, and see the transplant doctors.  On pretty days we can walk.  The apartment is furnished, and all utilities, satellite, and internet are included.  Thanks to gifts from friends and the clearance rack at Marshall's we have made it warm and inviting!







Steve and Debbie Wilson brought this oversize recliner all the way from Jackson for us.  It has come in handy!  I know you won't believe this, but Michael found the table you see beside the chair downstairs to be thrown out.  What can I say?  He has a gift!





The throw is just on there for the picture.  No one is allowed to touch it but me!



Each one of  these drawers is filled with medicines and supplies that I use.  


The bed became much more comfortable when we purchased a feather bed.  I feel like the princess and the pea!




Michael is taking care of the laundry.  I have no clue where anything is.



It's not my house, but it is our home until late April.  I am grateful for our little city house!


Interesting that I should title this post "showers" of blessing.  I think it has rained almost every day in February.  There has been devastating flooding all over the south. On one warm day we spent a little time outside.  Don't worry, I only took my mask off for the pictures.

My quads are very weak and getting up from this position was quite comical!





Chelsea had a milestone birthday on February 21.  That Saturday the entire family came and we went to Maggiano's to eat.  If you go there, be sure to get the family style meal.  You will be painfully full, and have days worth of food to take home.  We are all crazy about Italian food, and it was delicious.

This is just the entrees. The antipasta, salad, and appetizers are gone!  Dessert is yet to come.


Dig in!


Mee Maw and the great grands!

 
Christy is into the game. If you have never played "Hearing Things" you should get it now!


Chelsea is looking confident because she and I are winning.



We also played Five Second Rule, and of course Skip Bo.  It was a great day.

One day we had to make a quick trip to Walgreenes.  We noticed this.  Each full sized stuffed animal was 69 cents.  Do you know where my mind (and heart) went?


Five minutes later.


If you guessed "Dominican Republic" then you are right.  We bought every one of them for $62.  Four huge sacks full!

So, lots of fun things this month.  Also I had to swallow some pride and accept showers of blessing.  

Amidst all of this there was the transplant stuff........

The weeks are busy.  I am doing VERY well, but it is hard work.  Twice a day we still do all the vital signs and breathing tests.  I am still taking over 30 pills a day. At least one day each week I have labs, a chest X-ray, breathing tests, and I see the doctor/nurse practitioner.  Then I go to rehab.  That is a full day.  Sometimes I have to have extra tests- for example, they have had trouble regulating my tacrolimus this week so I have had labwork every day.  Last week I had a CT.  There are additional things that come up, and I am in rehab every single day.  


I actually like rehab.  It makes me feel good to move.  That will probably change as they push me more!  I started my third week this week, and I am walking 30 minutes on the treadmill at 3 miles per hour, with a 2.0 hill program.  I do leg weights every other day, and the seated elliptical on the other days.  They add exercises and intensity each week.  


I saw Jean the nurse practitioner the day after I came home from the hospital.  I was 20 pounds over my pre-transplant weight.  The swelling was terrible.  She put me on a diuretic.  I had fluid in my lungs and around my heart.  She made an appointment for me to have the pleural effusions drained. Later, after I left, she called and said Dr. Robbins wanted me to keep up with my  intake and output, and to take 100 mg of prednisone for the next 3 days. YIKES! He also wanted me to call him on Saturday.

On Monday I saw the doctor who was going to drain the effusions.  He talked to me for a long time about why he did not want to drain them.  He felt they would resolve on their own. He also wanted me to take 80 mg of Lasix.  He called Dr. Robbins and they agreed.

When I was in the hospital they started me on this horrible medication called Bicitra.  I cannot describe to you how awful it is and I am not sure why I was still on it- possibly something to do with my kidneys but who knows   It is a liquid that must be diluted and swallowed.  It tastes like a really bad grape sour patch kid, except it never gets sweet.  It is taken twice a day.  Each time I took it was worse than the time before. 

I saw Dr. Robbins and begged to have the Bictra stopped.  He said he would stop it.  He is my favorite!  He also felt it might be adding to the swelling.  Finally, the swelling began to resolve, and my kidney function also got better.  It took about a week. It felt so good to have all that fluid gone and to be myself again.  


Monday I had my first bronchoscopy to check for rejection and.....



NO REJECTION.  
All glory to God!  He is faithful.

Another praise is that I took my last dose of Lovenox last week!  No more shots!  Maybe I will lose the lovely shade of purple that has taken over my abdomen.


I saw Jean last week and she removed half of my staples (week 5).  My appointment with Dr. Bacchetta for my one month post-op was last week.  He was very pleased with my progress.  He removed a few more of the staples and said the rest could come out week 6.  Yikes!  Maybe I will just keep them.  I should have saved them all- the would have made an interesting piece of jewelry!

Look, he is smiling!


I have been so busy with the tasks of recovery that I still have not wrapped my head around the fact that someone else's lungs are in my chest.  I should know this because I can breathe better (FEV1 84% last week).  But it is odd.  I do think about my donor and his/her family, but I do not think the full realization is there.  Sometimes I still think that others were "sicker" and more deserving.  When I see patients with oxygen in clinic and rehab, I wonder if they should have received these lungs. Don't judge me, I know that God meant for me to have these lungs, but I am just being honest.

I can sleep in the bed now, but usually wake up in the middle of the night and have to move around due to stiffness in my ribcage.  One night I woke up and realized I did not have my oxygen on.  For a few minutes I felt a little anxious about it.  So many emotions!

But on that note, I am also thinking toward the future.  What can I do with healthy lungs? I love to travel, and it will be easier now.  I want to reschedule the beach trip we had planned for this month.  My niece is getting married in November of 2020.  I can't wait to go to Connecticut WITHOUT my oxygen concentrator!  

The day I got home from the hospital the first time, this came in the mail:


Coincidence?   I think not.  What a wonderful way this would be to celebrate my transplant.  One summer when my father was stationed in Italy, we took a month and camped all over Italy, Germany, and Switzerland.  I remember visiting many of the places on this tour including Oberammergau. Of course we did not see the Passion play that year. It was also right after the 1972 Munich Olympics.  I think Michael would love this trip.  Now to convince him........

Henry is here for a visit.  I was so excited to see him!



So, this has been a very busy month, but God is still in the miracle business.  I am progressing so quickly and well that the doctors just smile and shake thier heads.  I know that the next two months will be even harder, and I am all in.  Bring it! There have been a few bumps in the road, but God is still in control.  I trust him fully and have complete peace.  

Here's my heart Lord, take and seal it, seal it for thy courts above.
Come thou fount, come thou King; come thou Precious Prince of Peace
Hear your Bride, to You we sing, come thou Fount of our Blessing.