Back on the Roller Coaster

If you have ever ridden a roller coaster you know that there are dips, curves, hills, and thrilling moments that are also scary ones.  That is what happens when you have to experience what Lee has had to go through these past eight months.  Each time Lee has a really good day, we become very excited and at times temporarily forget that this is indeed very much like a roller-coaster.  Today was one of the "dip" in the coaster days.  Lee has been somewhat short of breath and tires very easily.  Tomorrow is a clinic day and he is scheduled to see the lung doctor @ 10:00 a.m.

In spite of another Low day, he insisted on returning to the Center for Living for his rehabilitation session.  Again, he was able to complete all sessions.  He was so tired that I had to push him in the rolator from the door to the car and from the car to the condo.  He just could not stand and walk.  He was only able to walk one and 1/3 laps today as opposed to the 3 he walked yesterday.  It is very discouraging to both of us when progress does not continue.

One thing I talked to Lee about today is the way he is breathing whenever he is engaged in any activity.  He developed the habit of shallow breathing when he was on oxygen because he could only breathe from the upper parts of his lungs.  He still wants to breathe like that.  I am trying very hard to help him learn to breathe normally again in order for him to ventilate the new lung in the deeper parts.  That is very important.  I have mentioned this to the doctors and nurses and the therapist several times and they all reassure me that this is a normal response. Many people who have had a lung transplant must learn to breathe again.  Lee even had a private session with the expert on breathing when in the hospital.....he still has a problem with that.

We are looking forward to the doctor's visit tomorrow so we can determine if any of the following has happened:
1.  Possible rejection
2.  Infection
3.  Fluid retention
4.  Other

We hope it is none of the above or maybe another blood chemistry level that may be corrected.  Anyway we will keep you informed with the results.

Today we did enjoy a visit from Worth and Betty.  A belated Happy Birthday to Betty!  Worth had an appointment here and it was so good to see them.  Another surprise was a box of delicious chocolate chip cookies from Betty and Wayne Jones, our friends from Lincolnton.  THANK YOU!   Later this evening some of our transplant friends returned for a visit.  It is good to hear them all compare notes about their experiences.

Tomorrow begins early for the clinic............will close for now.

More Later......................................Brenda   

An Old "Toughie"

After asking Lee to give me a description of his day today, he said, it was a tough day.  It was a tough day for him and I am seeing good results for him.  He was able to complete all his assigned sessions with more repititions added to all areas.  I'm sure he will be sore in the morning. I'll share with you an example of how closely the therapists work with the lung recepients.  Lee was sitting in a chair talking to an acquaintance from Hickory when the therapist asked him if he was resting or visiting.........he responded with....visiting.  She told him he needed to continue his walking!  I think he was being reprimanded!

Today was the first time I have not had to walk into the CFL with Lee.  I left him alone to walk in with his new friend, Jerry.  It was so good to see him functioning independently and with such confidence.  One of the surprising results of having been as sick as Lee has been is the loss of independence.  For eight months now Lee has had to depend upon others for most of his care.  He is now becoming more and more independent.   This is one of the most encouraging signs of his rehabilitation.  Everyone who knows Lee, knows him best for his strength, dependablility and for his independent nature.  That is returning.  It will take a while for the strength to return and he is working very hard in that department.

Now ABOUT yesterday's blog............................I must have imagined that I had a birthday and turned a dreaded age................after giving it much thought, I have decided that I was hallucinating and must have actually believed it myself.  So today............I am still young!  I have discovered that as we age, we have the right to change our mind.  I always admired my grandmother who seemed to decrease her age each year.  She explained this by rationalizing that she would have to live that year out before she would be a certain age.  I have adopted her rule on aging.

More Later................................................Brenda

Beginnings

I am beginning this blog again.............after the computer removed my almost completed blog to you!  So here we go again.  There were some new beginnings today.  Lee and I left Durham for the first time in 3 months.  We drove to Raleigh and visited Dennis and Betsy for a celebration supper for my 70th birthday.  Yes, I have now entered that dreaded decade......the 70's.  My Son asked me how it felt to be 70 and I told him it felt like 50..............and that he would know in two years when he turns 50!  Now that is hard for me to believe!

Oops..........need to stop and give Lee his meds.............will finish later.

Meds are given.  Lee is watching ballgame and getting very sleepy.  He is definitely awake now since I had to give him an injection in his belly.  That is his anti-coagulant.  He will probably be on that for another two - weeks.

Anyway, this has been a very good day.  New beginnings both for me and for Lee.  Lee was able to once again enjoy an afternoon in the courtyard under the gazebo with a vanilla milkshake (sugar-free) while I had my now famous capuccino chiller.  Hope you have tried it.........very good.  It was so good to have Lee able to walk out of the condo and spend some time outdoors.  Glad the weather is cooperating.  August is such a good month.  It's cooler nights give us subtle hints of days that will be more refreshing with less heat and humidity.

We are looking forward to this week for Lee getting to do more rehabilitation.  He is slowly regaining his strength and we pray that he will be able to continue in that direction.This has been a great day with lots of phone calls from well wishers and some surprises too!  We are both beginning to feel the good kind of fatigue that accompanies happy days.  Goodnight to all.

More Later.........................................Brenda

More Later..................................Brenda

A PARTY

Today was a very good day for both of us.  Lee was able to attend an outdoor garden party by the pool for a celebration of my birthday.  Julia, Greg, Daniel, Will, Michaela and Lillie, along with my brother Dennis all came to see us.  We gathered under the gazebo and our neighbors, Jerry and Gloria joined us.  Dennis contributed watermelon and pound cake, Gloria brought the tea, and we had a pizza party.  It was so wonderful to see Lee be able to sit outside and enjoy the fellowship of all.  It has been a lovely day and the weather was quite comfortable.  The children showered me with gifts (books, pictures, and movies for the two of us along with some special treats for me.)  This was a welcoming day for us!

Lee has not been as sore today as he was yesterday.  He is able to move about without much difficulty.  Every day he improves more and more.  What a blessing!  We are indeed grateful for each step he makes toward recovery and the road back home!  We are now able to speak in terms of "when we go home" and that is a good feeling.  Our lives are slowly returning to a more normal lifestyle.

Lee has found a Panther's game to watch this evening and I do hope it is a good game.  We are happy that football season is back because that is his favorite sport. I am glad that he is now able to watch the games  from his recliner and not a hospital bed.  Last season he was in the hospital for the Super Bowl and he and I ate pizza in his hospital room and watched the game.  This year we hope he can invite his "buddies" over for the Super Bowl game @ our house in Vale.  We are planning on that anyway.

As you can see, we are beginning to feel comfortable making plans for the future.  We now speak in terms of planning ahead and when we return home.  It is good to be able to do that because for so long we were not able to even think in terms of our future, much less discuss it.  This is what happens, I suppose when one goes through a major life adjustment due to extreme illness.  We have learned so much throught this experience and we have grown stronger spiritually.  We appreciate our time and all that we share with our family, friends, neighbors and others.

More Later..........................................Brenda

Sore muscles and Knees

Today Lee has experienced the results of his hard work this past week.............he now has very sore muscles and knees.  That is a good kind of soreness.........it means the muscles are responding to the exercises and the weights he did during rehab.  He will, however, need the two-day break over the week-end to recuperate.  In spite of this, Lee is wrapping up this past week with good results.  This has been much different than the week before.  We continue to be cautiously optismistic because we are well aware of how fast things can change here.

We are excited that some of our children are coming for a visit on Saturday.  Greg, Cathy, Will, Julia and maybe her daughters will be here for a late lunch or an early supper.  My brother Dennis will join us for the visit.  We plan to sit under the gazebo and share our food....topped off with an ice cold watermelon.  A perfect end of the Summer visit.

As you can see, the time is almost 9:00.....this is the time we begin the night-time rituals.  The medication must be given on time (especially the anti-rejection ones).  Lee and I are usually so tired that we hasten to be in the bed and asleep around 9:30.  No, we cannot say it is old age...........just so much to do!  We do not admit to the age thing!  Will have a longer blog and more to say the next time.  We wish all of you a wonderful week-end, we miss you terribly, and we hope you enjoy this beautiful August weather (one of my favorite months of the year, even if it does bring me another year older!)

More Later............................................Brenda

Good to have Lee Back!

This has been one of those days when I have just enjoyed watching Lee be himself once again.  After the last crisis with his blood pressure and his lethargic days, it was wonderful to have him being his busy self today.  I listened to the normal sounds of him conducting business over the phone and from a distance watched as he went through the mail and handled the usual financial business that is a monthly chore.  I have had to do this for so long and was happy to relinquish that to Lee again.  He is getting stronger quickly now and is able to function independently with several things that I have had to help him with before.  Slowly, I am removing some of the many "hats" I wear.

I reminded Lee that in addition to being his wife, I carry the title with the "hat" for:  Cook, maid, chauffeur, nurse, encourager, prayer warrier, sometimes a mother, and the most recent one, barber.  I will elaborate on the role of barber.  Last Sunday I told Lee that he desperately needed a haircut and I was just going to cut it for him.  He felt so bad that day that he allowed me to do it.  I thought I had done a decent cut until we were at the clinic on Monday.  I kept looking at his hair and realized that the left side was at least one inch longer than the right.  I could not wait to get home and cut again!  Finally, after the next cut, it does look a little better......................I have to admit that after Lee looked in the mirror he began to look for a convenient barber shop on the way home from the clinic..........................My role as a barber has come to an end.

Today was another good day at the CFL and Lee was able to increase his time and weights by 1/3!  That was very good.  Our neighbors  ( also lung transplant ) rode with us and the wife and I left to shop @ Wal-mart while the "boys" were doing rehab.  It is so good to finally reach this stage of rehabilitation.  It is more normal and allows for some developing friendships with the others.  We decided to share our dinner meal tonight and fellowship with the couple who live here.  It was a very good evening.  We had to end it early because we both have to stay with our routines of medications and the nightly rituals.

To brother Charles...........we are so sorry we missed your birthday.  Hopefully the next one we will be able to share with you.  We are sure your family made it very special.  To Mary Nell, Howard, Genice Patrick, Stanley Spence and my sister Bonnie...........Happy Birthday!

Our love to all..........................more later...................................Brenda

What A Difference A Day Makes!

Lee and I both slept a straight 10 hours last night.  We have been sleeping @ 4 and 5  and sometimes 2-hour intervals for so long that last night was a treat.  We have had a very, very good day.  Lee, once again, was able to complete all sessions at the CFL.  One of the transplant friends who had his transplant the 2nd week of July, commented that Lee had improved 50 % since yesterday! The physical therapist confirmed that he did  In addition to a good day at rehab, Lee began his day with his first shower in a long time.  We had to wait until today when the electrodes were removed from his chest because of the holter-monitor.  He really enjoyed that shower.  He is able to do this without concern for time (which was so stressful when he had to have the oxygen, and we had to closely watch the levels.  He usually emptied a tank or cylinder of oxygen to shower).  Each day we realize how blessed and fortunate he is to have a good lung.

As I write this blog, he is watching T.V. and he wants you to know that things are getting better for him and that he feels they will continue to get better if he does not encounter another "bump in the road".  We both think of you, our friends, family, followers who are so faithful with your thoughts and prayers for us.  What a comfort to us to know you are there all the time.  He says to say thank you for all the cards and for your comments on the blog.  He looks forward to reading every correspondance.

While Lee was at the CFL, I made a quick stop @ the grocery and then back to the condo.  I called my two neighbor caregivers and we sat outside in the courtyard and enjoyed a cappucino chiller.  This has become the highlight of at least one afternoon per week.  All of this depends, of course, on whether or not we are all free from clinic or bronchoscopy days.  I have become quite good at making those delicious treats and must say that mine taste as good as TCBY.  I will share my recipe for you to enjoy:

Low fat vanilla frozen yogurt
cold coffee
low fat whipping cream ( in can)
Sprinkle of cinnamon
Stir frozen yogurt, coffee together to milk shake consistency, pour into glass, top with W/cream and sprinkle with cinnamon
ENJOY

Now you know that we are doing much better when I have the time to share a simple recipe.

Blessings to all..................................More Later.............................Brenda

Medication Adjustments

We are beginning to realize that it takes a while to adjust to the medications post-lung transplant and heart surgery.  So many of Lee's complications have been the result of either too little or too much of a certain medication.  I will try to explain:

1.  Atrial fibrillation is usually the result of his surgcal procedure, but it can also be the result of a high potassium level in the blood.  Lee was on Potassium for weeks after surgery.  Now his potassium is high and he is having to take medication to bind and remove the excessive potassium in his body.  ( hight potassium levels can cause atrial fibrillation).

2.  He was having fast heartbeats ( atrial tachycardia) and was put on a medication to slow the heartrate and reestablish a normal rhythm..................this drug, however, caused his blood pressure to fall too low to function.  Fortunately this has been discontinued for now.

Lee is on so many medications that  we are both becoming more educated to these drugs as far as their action, interactions and adverse side effects.  It is important that we also recognize the medications as to their appearance.  One almost feels like an amateur pharmacist when preparing the weekly doses of medications all at once.  That is my task every Saturday.  I must fill all meds into the proper time slots for the following week.  This makes it very convenient each day of the week to have the meds ready in their correct time slot in the medicine box.

Lee wants you to know that this was a GOOD day.  He was able to complete one full session at the CFL this afternoon.  We were all  ( staff, other patients and caregivers ) so very proud of him and so happy to have him back.  After we left we made a run down Guess Road to the Walgreen's Pharmacy to pick up another 2 bags of medicines that were called in for refills.  On the way back, Lee wanted some fish so we picked up some flounder.  Again, he ate with gusto!  At 163 lbs, I am letting him have some fat!  Right now, he is napping during the news...............he is very tired and very pleased from his work-out.

For me, it was good to have a couple of hours free in the afternoon.  I put them to excellect use...............I took a nap!  The I.V.'s have been discontinued so now I can go to bed by 9:00 if I wish and not @ 11:30.  I can now also sleep later and not have to get up @ 5:00 for the I.V.  Yeahhhhhhhhhhhhhhhhhh!

As you can see, we have once again moved over the "mountain" and are on the other side of yet another crisis.  We just hope for no more but if there is, hopefully they will be small hills and not mountains.

More Later.................................................Brenda

A Full Clinic Day

Our day began @ 6:00 a.m. with Lee's I.V. Medication to be started.  I hung the I.V. and had my first cup of coffee while waiting for it to complete in 30 minutes.  We had clinic day scheduled and we would have to move more quickly this morning.  By the time Lee was out of bed, we had to check his BP (which was 116/80!!! yeaaaaaaaaaaa!), his temperature and his weight.  That is a daily ritual for us.  Then he dressed and was up for his first cup of coffee.  Next, the blood sugar had to be checked ( I give the insulin ) and Lee has to do a breathing test.  ( This is also done each a.m. and recorded ). After a light and fast breakfast (to include the drink, instant breakfast ) it was time for all 30 of his pills.  I, in the meantime give him his injection in his abdomen of his anti-coagulant.  Whew !  We finally are out the door @ 8:30 for our clinic day.

We use the valet service @ the clinic because it is much faster and we get wheelchair service.  So, onto the 2nd floor for bloodwork.  This is finished and Lee now has to take his anti-rejection meds (cannot take these before bloodwork ). Next he goes to x-ray followed by a trip back to the pulmonary lab for a breathing test and arterial blood.  Our next stop was to the Holter-Monitor Lab for Lee to be fitted with the device.  This will monitor his heart rate and rhythm for the next 24 hours.  We are finally finished with the a.m. clinic and return to the condo by 11:00.

I hurridly start the 11:00 I. V., check Lee's blood sugar, give insulin and prepare lunch.  We Leave @ 12:30 to go back to the clinic for the 1:00 doctor's appointment.  Unfortunately, we were not there @ 12:45 when they call for Lee.  We apparently were placed at the end of the line for the 1:00 appointments.  We were finally seen by the doctor @ 2:45 p.m.  A new prescription, the medication that was causing the problem was discontinued.

Lee already feels much better.  He is now more alert and has more energy.  He even got to eat some fried Bo-Jangles chicken for supper tonight and I do believe I saw him licking his fingers.  He really enjoyed that meal!  Once in a while we have to feed him something that he really likes.  I apologize for the blog tonight.  I hit (what I thought was save and it was publish blog prematurely)  that is the reason for the strange looking blog tonight.  Maybe tomorrow I will do better.  It has been a very tiring day.

More Later....................................Brenda

Lo pressure, Lo energy, Lo day

It has been another LOoooooooooo day for Lee.  The blood pressure is still so low that he just wants to sleep all the time.  He says he feels terrible and has no energy.  Every time he trys to get up he gets very light-headed.  His BP has been around 80-88/60 all day.  I called the nurse lung coordinator and told her I cut his dose in half last night and this a.m. but he is still too low.  She said to take him to the emergency room.  I told her we had been there, done that and everything checked out fine.  All his breathing tests that we do here are fine and all his other vitals are normal.  I reminded her that he was fine until discharge from the hospital and the MD doubled some of his meds.  The discharge nurse even questioned his decision to do that.  I also reminded her that we have an appointment at the clinic tomorrow.  She relented and said that the medication would be changed tomorrow and to omit the dose for tonight and tomorrow.  Thank Goodness.  I don't believe I would have been able to convince Lee to go back to the ER.

I am hoping that with the elimination of the med tonight and in the a.m. I will be able to get him to the clinic tomorrow.  I am afraid to walk him with the low BP.  Two of the guys @ the CFL have "blacked-out" and had disastrous results from the fall.  One guy who had one lung about the time Lee had his......had this to happen and broke ribs on the new lung side.  He had to be in the hospital for several days with chest tubes, etc to drain all the blood that had accumulated around his new lung.  As you can see, Lee must have a blood pressure of at least 100/? to get on his feet.

We are looking forward to tomorrow and anticipate some changes in his medication.  Hopefully the remainder of the week will allow him to begin to walk and get back into his rehab which is so important.  That is our key to returning home!

Thank you all for being there for us.  I can't tell you how therapeutic it is for me to write each day knowing I have you there.  When I can write it all down and read it, I am able to deal with each crisis that arises.

More Later.......................................Brenda

A more normal Saturday

Today seemed more like our normal Saturdays in that we did not have to go anywhere.  It was good to have the time to do what we need to do here.  Sometimes our days are so full of appointments that we hardly find time to do all the necessary things, to include preparation of meals and eating!  What feels most normal right now is that Lee is watching the Panthers pre-season game.  Hearing the sounds of a ballgame is very much like being home in Vale.

Lee continues to have trouble with his low blood pressure.  His pressure is so low tonight that I am afraid to give him the medicine that lowers his BP.  I will talk to the nurse and will hold it until I get the call.  At the CFL on Wednesday, Lee invited two other transplant enrollees to share dinner with us tonight.  They are living here at Duke Towers and he had promised them some of my chicken 'n Dumplings.  We all gathered under the gazebo in the courtyard and had a meal.  It was so nice to be able to go outside and enjoy the fellowship.  I was amazed at how the three of them..............Lee, Jerry and Nancy were able to breathe so easily.  Each of them were extremely dependent on oxygen prior to their transplants.  It was the beginning of a more normal existance for us even though we miss our children and grandchildren terribly.  It has been almost three months since we have been home and we do have periods of homesickness.

I will have to write more tomorrow.  It is time for the late night I.V. and Lee has fallen asleep in his recliner........................also....................I am very tired and sleepy but must wait another hour for the I.V. to finish.

More Later.......................................................Brenda

A Low BP Day

Lee's day began as encouraging because when I checked his blood pressure early this morning, it was 112/70.  I said to him that he would probably have a really good day at the rehab because that was his best BP in days.  He did, however; continue throughout the morning to feel very tired and wanted to sleep all the time.  Each time I checked his BP, it seemed to go a bit lower.  We had to go to the clinic for blood work and he did fine during that time.  We left for the Center for Living ( CFL ) around 12:15 and I felt so good about his day that I left.

After doing a little shopping, I returned to the condo just in time for Lee to call.  He said he had been sitting in his chair the past hour because they will not rehab unless your BP is at least 100.  His BP was 80/50.  I left to retrieve him.  They would not even allow him to walk out..............had to ride in the chair.   The transplant nurse called around 4:00 and told me how to adjust his meds to hopefully help the BP.  He is scheduled on Monday to get fitted with the Holter-monitor.  This will allow an accurate reading of his BP, Pulse for a 24-hour period.  We will be glad to get the medicine adjusted accordingly.

Lee looks very good!  His color is great and his breathing is as good as mine!  No problems there.  He has; however lost a lot of weight...........In Dec. 2009 he weighed 212.... He now weighs 162.  He said he had not weighed that since middle school!  ( I didn't think middle school was implemented back then! )  At any rate......since he was 13 or 14 years old.  He is eating much better since here for me to prepare his food.  I enjoy seeing him enjoy his meals.  I am acutely aware of his diet......sugars.....carbs and at the same time trying to increase protein, vegetables and some fruit.  He also has lots of hight
 protein drinks as snacks.  We are both working very hard to get him better, stronger and able to work on his strengthening exercises.

Time to get with the meds and night-time routines.

More Later......................................Brenda

A Determined Lee!

Lee was determined to make it back to The Center for the Living today despite a continuing low Blood Pressure.  His BP was 108/78..............I told him he could do the rehab with that.  We were told when we got there that you must have a BP of 100/? in order to stay for rehab.  He was able to stay from 12:30 to 3:30!  WOW!  That was really good considering how tired and sluggish he is feeling.  He is actually having to start from the beginning post-transplant surgery.  Of course it is disappointing to him and to me but we have to accept whatever his body does.  It is hard not to judge his progress against others.  We see those who have had lung transplants and recover and go home in 4-6 weeks.  We have been advised to never become competetive with others.  All patients are different and must rehabilitate at their rate.  This, of course is determined by so many factors:  Pre-lung sickness and debilitation, extent of surgery, other procedures, age and complications.  Lee was very, very sick before surgery, had two procedures (lung and heart) and has had complications of his heart.  I believe I will omit age because he will read this!

Anyway, everyone was glad to see him there and congratulated him on his perseverance and his strong determination.  I know that you are as proud of him as we are.  Tomorrow is clinic in the a.m. and hopefully some more rehab in the afternoon.

It was good to have a visit from Howard, Mary Nell, Genice and Roger tonight.  They did not stay longer than 20 minutes and came from Raleigh to see us.  We missed a visit from Worth and Betty when Worth came for his check-up @ Duke.  Lee was involved @ The Center for the Living.  We would have enjoyed their visit.

So...............time to give meds..............prepare the I.V. for later...........................all the bedtime stuff...........We are tired and I am sleep deprived.

More Later.............................................Brenda

Our New Routine

Just thought I would share our "new" daily routine with you:

5:00 a.m................................Start the  q 6 h I.V.  (to run 40 min.) must do saline flush and alcohol clean

5:45 a.m...............................Wake Lee....DC the I.V. saline flush, heparin flush

6:00......................................Check Lee's BP, pulse, temp and weight & record

7:00......................................Lee is dressed and up....................I begin breakfast

7:15.....................................Lee checks his blood sugar, I give insulin

7:25.....................................Lee does spirameter measurements and I record

7:30.......................................Breakfast  followed by swish for mouth

8:00.......................................A cup of pills for Lee to take with applesauce

9:00......................................Injection of anticoagulant in Lee's abdomen
                                             Lee takes by mouth anti-rejection meds (must be same time each day)

10:00...................................Lee naps.........................I dress

11:00...................................I start I.V. medication again

11:30.................................Check Lee's blood sugar and give insulin

11:45.................................Lunch followed by swish for mouth

12:15.................................Leave for Center for Living

3-4:00...............................Lee leaves Center for Living and returns to condo

5:00.................................Start I.V. meds and DC by 5:45  check Blood sugar and give Insulin

6:00................................Prepare supper

6:30.................................Supper followed by swish

7:00.................................T.V. or whatever

8:00.................................Cup of meds for Lee

9:00................................Injection in abdomen of anticoagulant
                                       Anti-rejection drugs
Bedtime care

10-11:00........................Start I.V.    Lee goes to sleep

11-11:30..........................I go to sleep

That is our day!  On some days we must work in a morning clinic visit for blood work or physicians visit in the afternoon.  Sometimes we have to cancel The Center for Living visit.  Lee must complete 23 session there before he can be discharged to home.  One can understand why it takes so long to finish.  We are very, very busy.  The only time we have to visit is on week-ends but if you are in Durham, call and we will try very hard to see you.  Call first to see what our schedule is.

More later today....................................................................Brenda

 

Rest for Recovery

Today was used to recover from all the activity from yesterday.  Sometimes we must make our own judgment calls about our daily activities.  This morning Lee had a very low blood pressure which made it difficult to stand and walk.  After talking to the nurse post-lung transplant coordinator we waited for the doctor to tell her what we needed to do (medications, etc.)  Lee came home on three different medications to lower his BP and since he does not have high BP.......it really lowers it.  So................we are now back on a very low dose of the elevating BP meds but must continue the lowering ones.  (Now if you can make any sense of that statement you are doing very well..............better than I am). 

As explained to me.........this recipe of meds seems to work to keep Lee out of atrial fib.  I'm hoping it is temporary and that he can gradually remove them.  It is so important that he be active and rehabilitate for the lung.  It is one of those situations where you are caught between a rock and a hard place.  What is good for the lung, is bad for the heart and vice versa.  Time will tell.  Right now we just take it one step and one day at a time.  Tomorrow our plans are to return to The Center for the Living and try again.....much slower this time.

After that exciting and overwhelming day yesterday we arrived back at the condo with a note that a package had arrived for us.  With great anticipation I hurried to retrieve it before the office closed.....I knew or hoped I knew that some home-grown tomatoes were there.  Sure enough, Midget Redneck had mailed through the post office, a box of her "maters".  Even signed "maters"!  Many of them had little messages written on them for us.  After a very difficult day, Lee and I were able to enjoy the gift and laugh a little.  Thank you "Little Joe, Joy, Jo, alias Midget Redneck" for bringing so much joy to us on a day when we really needed that!  They are delicious and only a few were soup!

I would like to introduce my bloggers to  Midget Redneck (alias Joy).  She is the wonderful nursing assistant who helped us through Catawba County Home Health.  She was there for us when I had surgery and could not take care of Lee.  She, along with the other nurses and physical therapy and Oxygen from Lincare were absolutely amazing.  God's Angels.  Joy brought laughter back to Lee and helped him through all those stories she shared.  I wish all of you could meet her.

I want to thank all of you , family, friends and many others for your continuing support of us.  We are amazed at the cards we still receive from you knowing that we have been on this journey since Dec. 18, 2009.  There are many congregations from many churches who let us know that Lee is still on their prayer lists.  From our home church , First Baptist in Lincolnton, we thank you all!  We miss all of you and it is good to weekly visit through the CD and get to see you again.  To our SS Class (Harmony), Hang on, keep praying, our love to all and we are coming back!

More Later............................................Brenda

What A DAY!

I am late writing because this has really been an overwhelming day!  It actually began last night when I had to start Lee's I.V. medication @ 11:00 pm and let it run for 45 minutes.  I set the alarm because Lee and I were very tired.  He fell asleep and I read a book until the alarm sounded.  Finally, I was able to get to sleep around midnight.  I had to be up at 5:00 for the I.V.  You cannot imagine how difficult it is to connect an I.V. medication using sterile technique, saline flushes, and heparin flushes the FIRST THING IN THE MORNING when you are really STUPID!  So..............I was up for the day.  Lee slept until 7:00. ( you see, in some ways he really has it made!)

Anyway.........by 9:00 we were out the door to the clinic for a swallowing test for Lee.  Good News!  He passed with flying colors!  Back to the condo by 10:55.............Hurridly started the 11:00 I.V. and prepared lunch.  Out the door @ 12:00 to go to rehab @ The Center For The Living.  I waited until they evaluated Lee and got the "all clear" to leave after 45 minutes. I was to return @ 3:15.  On to the grocery I went and stocked up on supplies since Lee was back and I would be doing more food preparation.

When I returned to get Lee @ 3:00..............Trouble.  He had become light-headed and his BP had dropped to 70/5 0.  He was resting in a chair.  The transplant nurse coordinator was contacted and advised to have ambulance transfer Lee to ER.  We were in the ER until 7:30 pm.  Good News....all test were normal and he was dehydrated from the activity.  We were back @ the condo by 8:00.  A quick supper, meds, I.V. and now we are ready for bed.  Absolutely exhausted!  We will pray for rest and recovery tonight.

More Later......................................Brenda

Out of the Hospital Again!

Lee was discharged from the hospital today and we arrived at the condo @ 2:00 pm.  Dennis had to be in Durham for meetings and was able to finish in time to make the necessary trip to the pharmacy to pick up all the new medications that he now has to take. 

As soon as we could, I began to sort out all the meds again, removing those that were now discontinued and adding those that were new.  Lee settled into his good old red leather recliner (that came with us ) and reached for the remote.  Dennis had brought some watermelon and a loaf of freshly baked bread by Betsy.  He was now in "Hog Heaven".  He loves watermelon!

It wasn't long until we were bombarded with telephone calls from our nurse coordinator and our home health care nurse.  Appointments were made beginning in the morning for physicians, speech therapists testing and for the Center for The Living to begin the rehab.  At 3:00 there was a knock at the door and a man from the I.V. station delivered four large boxes that the home health nurse would explain to me when she was scheduled to arrive @ 4:30. 

We now have an I.V. pole in the middle of the living room and the home health nurse observed as I connected his I.V. antibiotic to his PICC line in his left arm.  I will have to administer the I.V. every 6 hours for the next two weeks.  The hours are 11-5, 11-5 each day.  Late to bed and early to rise!

Lee was able to eat a HUGE supper compared to the way he had been eating in the hospital. Thanks to  Donna who had left a roast for him in individual servings in the freezer. Along with that and brown rice and some of our canned green beans.................he was a satisfied man!  So good to see him eat.

Well...............we have much to do .............more medications to give, bath time and hopefully a night's sleep (even with the alarms set for the I.V.s)  We have to be at the clinic tomorrow @ 9:00.  Wish us Well!  It looks like a busy, but better week!

More Later........................................Brenda

20 LAPS!

HE DID IT!!!  Lee walked twenty (20) laps today.  He was told by the doctor last week that he would once again have to complete the 20 laps before he could be discharged.  So, it looks like he may be discharged tomorrow.  When I arrived at the hospital this afternoon, he and Donna had already completed 7 laps.  At 3:00 he walked 7 more laps and at 5:00 he walked the remaining 6 laps for a total for the day of 20 laps.  That is a little over one mile! 6000 feet as measured there.  We are both excited about leaving the hospital and getting him back at the condo.

Around 4:00, Lee was tired from his walk and wanted to take a short nap.  I decided to go to the cafeteria on first floor.  As I entered the lobby I was drawn to the sound of the piano being played.  I stood by the gift shop for a few moments looking through some books and other literature.  The piano player was playing jazz and the improvisations were amazing.  I moved closer to the direction of this beautiful sound and found a chair immediately adjacent to the piano.  Seated at the baby grand was a patient, resplendent in his hospital gown, walking socks and connected to a collection apparatus that had a tube that was connected to his head.  A closer inspection of the maestro seated at the piano revealed that he had had brain surgery with the scar extending from one ear, across his head to the other ear.  He had a patch over his left eye and was obviously blind in his right eye.  His age appeared to be45- 50.  Two nurses were there with him.

By this time a large crowd had begun to develop and fill the chairs.  He continued to play, oblivious to the crowd.  He was smiling and was patting his left foot as he played.  I noticed an elderly lady standing close by along with the two nurses.  I spoke to her and learned that this was her son.  He had brain cancer and had recently had the operation.  I shared with her that I , too, have a son who enjoys playing classical piano.  She said her son was also classical......I asked him to play his preference in classical.  He immediately began a beautiful Shubert selection.   I was moved to tears, along with many in his audience.

I looked around and there stood a young couple with their 3-4 year old child in a wheelchair who had either brain surgery or head trauma.  Somehow he seemed to be connecting with the music he was hearing, bringing smiles of anticipation from the parents.

I share this true story with you so that you will understand that we meet  here from all over the country, even the world, who come to Duke.  It is place for all those who still have hope. I will be lifting the piano player and the small child up in my prayers tonight as I know you will too.

More Later.......................................Brenda

Marathon Man Has Returned!

Lee just completed 18 laps on this Saturday.  The doctor told him yesterday he would have to be able to walk 20 laps before he could be discharged again.  Tomorrow his goal is to walk the 20 laps and he is wanting to be discharged on Monday.  So far it looks like the "Marathon Man" can accomplish his goal!  I can't tell you what a relief it is to see Lee once again resurrect!  He says he is feeling good and has a good appetite.  Walking is getting easier for him.  He now does five straight laps.....that is quite amazing considering that last week he could not do one complete lap without stopping to rest three different times.

This rebound is because his heart is functioning at a normal pace and no longer is he having to endure the weakness from atrial fibrillation and atrial flutter with atrial tachycardia.  This was making him so weak that he just could not accomplish the smallest tasks.  This is now his fourth day of return to normal rhythm.  What a difference!

Of course I am excited................we are both so anxious for him to continue the program at a pace that ensures progress.  Hopefully next week he will be back on the 23 sessions schedule.  I,too, am feeling almost normal.  Vertigo and nausea have all disappeared except for riding or driving.  I believe that will be fine within the next 24 hours.  At least that is my goal!

Donna has been with Lee all afternoon and the roast she put in the crockpot before leaving is beginning to smell delicious.  She and I plan to enjoy this meal and will put the rest away to wait for Lee to return.  She is staying overnight and I am so fortunate to have her here.  I have been blessed with such a wonderful family and children.  They always come when I call or need them..........all of them. 

Lee Jr. Jennifer, Greg, Cathy, Bo and Julia have been busy at our house in Vale putting the bedrooms back together after we had carpet removed and hardwoods down.  Thanks to our neighbors for looking after the cows and farm and to Margaret for opening the house when needed.  We are truly blessed with friends and neighbors, and family.

We look forward to the day when we see all of you again...........maybe in the not too distant future.


More Later...........................................Brenda

Report from Lee

I still have not been able to go to the hospital to see Lee.  I did a trial run in the car to the Whole Foods Store and discovered that my balance is still not up to driving or riding.  I just finished talking to Lee via phone and here is his report:

Everything seems to be moving very quickly now in his favor!  What a blessing! 
Early this morning he began walking his laps and had to stop to go for an MRI of his chest.  This was a good report and the doctors came in and removed his chest tube.  He was also taken out of Isolation (he had been on isolation with gowns and gloves required of everyone who entered the room ).  So to put it in Lee's language "I am no longer being quarantined."

He also had an EKG and it was good.  His heart is maintaining a normal sinus rhythm and has been for the past 4 days.  He said his blood sugars today were much lower than they had been and his weight is now 165 lbs.  (Lee weighed 212 lbs in November before he became sick).  He has dropped another 10 lbs during these past 2 1/2 weeks.  He is now eating better and hopefully will not lose any more weight.  As he gains his muscle, the weight will come back.  He is now able to complete 10-12 laps per day and says he must make it 20 laps in one day to be released again.  I believe he will accomplish that by the end of the week-end!  He said that after he walked 5 laps his heart rate was 91, BP 112/70 and O2 was 95.  That is great news!

Plans are being made for him to be discharged on Monday or Tuesday.................depending, of course on his maintaining current status.  He has had a good day!  Doug, Elizabeth and the boys came by to see him.  Doug also brought the boys to see me while Elizabeth washed Lee's hair.  I was so glad they came, especially in my absence.  Tomorrow Donna will be here and by Sunday I should be up to driving again.

I am much better................improving by the hour..............just can't drive or ride easily.  That, too, will pass.   Such good reports from Lee!

More Later..............................................Brenda

For Mater Lady........Thanks

Our mailing address @ the condo has been requested:

807 West Trinity Avenue
Condo 142
Durham, N C      27701

We Two are Improving

It is good to feel well enough to write the blog today.  Vertigo can be very debilitating.  I kept using all the tactics that I have used in the past ( acupressure, positional changes in the head etc.).  I finally gave up and am now relying on good old dramamine.  Even though it makes me very sleepy....it seems to work.  I was able to keep a much needed hair appointment with Betsy's hairdresser in Raleigh.  Dennis came over and drove me there and back.  When I stood up to leave I almost fell over some of the furniture ................very embarrasing.  A kind receptionist helped me out to the car.  So, as you can guess I have not been able to stay with Lee at the hospital.

Lee is doing much better.  From his report, he has had a good day.  His heart rate is still regular and his blood pressure is good.  After Dennis dropped me off he went to the hospital to spend some time with Lee.  He also took some mail and the phone charger.  Now he can communicate with those back home again.  It has been hard to stay away these past two days but I know that I must do that.  It could be that I have a "bug" that is causing the nausea and vertigo and do not want to pass that on to Lee.  Elizabeth and Doug will be here Friday and Donna is coming Saturday, Saturday night and Sunday morning.  Thank goodness for the help.  While talking to Lee today, he still has a chest tube in and I know he cannot come home until that has been removed.  It looks like another week-end in the hospital.

The next time one of you is headed this way, we are accepting a few good tomatoes out of your garden again.  Are you there Midget R.?  Thanks for the offer again....We need to reimburse you for all your trouble.

Once again we have had an unbelievely hot day in Durham.  99 today with heat index of 105.  Very hot.  I'm sure the same is true for the rest of you.  Fortunately we all have air conditioning and the condo is very comfortable.  It is so hot that no one uses the pool because the water is as warm as bath water!  Fall will be a most welcomed Season.  We are hoping that it works out for us to return home before the end of Fall.

More Later..........................................................Brenda

Lee's Dizzy Blonde

This is being dicated by Brenda and written by Dennis and/or Betsy while Brenda is trying to recover from a bout of vertigo.  (Brenda just answered the phone so Dennis will add this:  She seems to be doing better this evening than this morning when she had nausea.  Now she is sipping on some ginger ale and staying fairly stationary in the recliner. She developed the vertigo most intensely while on the shuttle to the hospital, but had to return home before the visit. Larry the "shuttle-guy" offerred to take her to the emergency room, but she knew better and returned to the condo to rest.)

Now for Lee:  Lee has had two really good days.  His blood pressure and heart rate are normal.  He says he feels good; has appetite back and can eat.  He is actually enjoying walking for the first time in two and a half weeks. Lee enjoyed his visit from Gaye Dorsey because she brought eleven pictures--one of each new calves!
 
Today has been an amazing turn of events. Lee is now trying to look after me from the hospital by calling Dennis and Betsy and asking them to check on her.  Brenda says this is not the first time she has had vertigo.  It seems that the vertigo comes in times of stress and fatigue.   The "good" thing may be that it forces her to rest.  She says she "anticipates a full recovery soon!"

Brenda says "more later...."

Like a Toothache

I'm sure you have heard the expression and/or experienced a situation that is like having a toothache for several days and it is only when you finally go to the Dentist that the toothache goes away.  Well, that is what happened to Lee today.

Yesterday we waited all day for the cardiac doctor to see Lee.  We were told today that it was a "communications break-down" and the cardiac doctor was not informed.  Med-speak for "someone forgot to call them".  We were promised that they would indeed come by to see Lee today. I was there all morning and forgot my phone so came back to the condo to retrieve it and rest for a couple of hours.  When I returned @ 3:45 p.m.  Lee had a NORMAL sinus rhythm and his heart rate was a regular 84.  Of course the cardiac doctor appeared about  4:30 and was surprised after the urgency of the call that Lee's irregular hear rate seeemed to have corrected itself on its own.  WOW!.....................Now he says, we will wait and see.  Give it a couple of days to see if all is well again.

So................the good news is that all is well tonight and Lee already looked better and stronger.  Time will tell of course.  We have had so many ups and downs these past few weeks that we just have to roll with the punches as they say.  We have to always remember that it could be a lot worse.  When the pulmonary doctor was in earlier today he reminded Lee that if he had not had the surgery when he did he probably would not even be here right now.  They were very concerned that he would die before they got his lung.  His lungs were very sick and I believe we are now seeing the results of the strain it was making on his heart.  We had been told in February that if he did not have a lung transplant his heart would probably wear out first because of the tremendous strain  on his heart at that time.

We have to remember that whenever one is as dependent on oxygen as Lee was it causes a back pressure against the right atrium and eventually can cause a problem there.  The right atrium is not meant to carry pressure, it just conveys blood from one part to another.  Right now his problem is in the right atrium.  The doctors at Duke have not said that, but I do remember the doctors @ Baptist and Forsythe (Select) telling us about the complications to the right atrium of the heart. 

I am hoping that when I return to the hospital in the morning Lee will still be in a normal sinus rhythm.  Remember him in your prayers tonight.

More Later................................................Brenda

What goes up, Must come down

Lee is still in the hospital and when I was there today I asked him how he would  title today's blog.  His answer was,"What goes up, must come down".  I will try to explain:

As you recall, yesterday was a really good day and I was able to convey that to you with exciting optimism. Today he is once again in atrial tachycardia which began as atrial fibrillation around 9:30 last night.  Atrial tachycardia is when the upper chambers of the heart are beating too fast.  His heart rate is 120-125 constantly.  That is what Lee means when he says "what goes up, must come down".  We are hoping the up rate will come down. He does not have a normal sinus rhythm pattern on the monitor.  So......................here we go again................................

The pulmonary team came in around 11:00 and they too were surprised that this had begun to happen again.  Seems the medication that works to regulate the heart rate also lowers the blood pressure too low.  They had to stop giving it temporarily.  The pulmonary team has now referred him back to the cardiac team.  We waited all day for the cardiac team to come and as of 6:00 p.m. they had not.  They may come later or they may not come until tomorrow. Meanwhile Lee is back to dealing with the weakness and trying to walk even though it is very difficult.  He also has trouble eating and sleeping because he is constantly aware of this rapid heart rate.

I was very discouraged when I left and decided that I absolutely had to do something that felt normal.  I stopped by the grocery store on the way to the condo and bought the ingredients for a lasagne.  This has always been comfort food for me and is a dish I usually reserve for family get togethers etc.  I made one and somehow it just was not the same .  It is a sad thing to eat alone, especially if the dish is one you have always shared with others.  Probably will not do that again..............bad idea.  I'll just wait until I can share with Lee or others. For the time being I will just rely on my other comfort food.........a Snickers bar....the entire thing.  I have lost enough weight now that I will just enjoy all that fat, sugar and cholesterol!

Lee and I are mindful of the good things now, even with this "another bump in this long, bumpy road".  He can breathe on his own and his color is very good.  The new lung is functioning so well that I am hesitant to even say that for fear it too will reverse.  The bronchoscopy he had last week was good........no rejection.  For that we are truly thankful.  Now for the heart..................we will continue to pray for that recovery and I am asking prayers from you also.  Thank you for your cards, your prayers and those good thoughts that you send our way.

More Later...............................................Brenda 

Sunshiny day!

When I ended Saturday's blog I said that Tomorrow would bring the sunshine.............or something to that effect.  Just wanted you to know that is exactly what happened.  Lee called me @ 8:00 this morning to let me know that he was able to walk four rounds Saturday night @ 9:00 without stopping one time to rest!  Each round is 300 feet.  His heart rate remained stable throughout the evening and night and he was feeling GOOD this morning.  He said he ate every bite of his breakfast.  We were both very excited about his progress.

His doctor came by and seemed delighted that Lee had done so well and had responded favorably to the medication to correct his arrythmia.  He said that if he continued with no more irregularities of the heart and if the chest tube stopped draining there was a good chance of being discharged by the middle of the week.  I asked him what did he think caused this episode of atrial fibrillation and flutter with atrial tachycardia.  He said that it could have been the chest tube or just the fluid in the pleural cavity.  He said it did not take much to "tickle the heart", thus causing the problem.  He added that hopefully with time that would go away.  Boy, do we ever hope that is true!

Lee did have a good day all day today.  He walked three different times and his total for the day was 2700 feet.  He is on his way!  Once again we are seeing the light at the end of this very long and very dark tunnel.  We have to remember that Lee has been a patient now entering his 9th month.  That is a long time to be under the care of physicians, nurses and ME!  Even the 2 1/2 months home in Vale to prepare to come to Duke, he was still a patient and restricted to his mobility around the house.  Other than the trips to the hospital, the Center for The Living, the clinic and the condo, he has virtually had no independence.  He has been dependent upon  me and others for his care.  That has to be a very hard thing for a strong, resilient person like Lee to accept.

Accept it he has......................and he has done this with great courage and dignitiy.  I want you to know that he does not complain......................ever.  I have been amazed at his patience and his tolerance during this entire process.  He is an amazing man and he is our hero.

We will sleep well tonight.

More Later...............................................................Brenda

Not Supposed to Happen again!

When I arrived @ Duke this morning, Lee seemed more apathetic than the night before.  The reason was because he had another episode of atrial fibrillation earlier this morning.  Looking at the monitor I could see that he was in atrial tachycardia.  Not Good.  Atrial tachycardia is not an emergency but it does make Lee feel very, very weak.  This, of course is more noticeable whenever he gets up to walk. His legs get very weak and he just does not have the energy to walk.  His heart rate was holding around 120-125 constantly.  I talked to the nurse and ask that we have access to a doctor as soon as possible.  I just could not see waiting around until grand rounds or whenever some doctors happened to be on the unit.

Within the hour, three doctors were in his room.  One being his main pulmonary physician.  I was delighted that they came so quickly.  When his doctor looked at him he said," Mr. Kanipe, this was NOT SUPPOSED TO HAPPEN AGAIN."  He went on to say that the 10 hour procedure last Friday was one of the longest ones for atrial ablation.  Seems like everthing that Lee does sets some sort of RECORD!  Any way as the doctor left he said he wanted to look at the EKG that was done this morning and at the chest x-ray that was done yesterday.  After that he would decide on the method of treatment.

Lee was very tired after lunch and wanted to take a nap so I left for a couple of hours.  I have learned to make cappucino chillers ( like TCBY ) and invited two of my neighbors over to share.  It was a much needed break in the middle of the day for these three caregivers.  When I returned to the hospital, the nurse had just started the new medication for his heart.  Within an hour, his heart had settled  into a normal sinus rhythm and his rate was 83.  This remained steady until I left him around 6:30 pm.  Just talked to him via phone @ 8:00 and he sounded good.  He was getting ready to walk again.

We both want to see him be discharged to the condo on Monday and able to return to the Center for the Living where they are so good at helping him rebuild his strength.  Hopefully that will come to fruition for us.  I miss having him here as we are both so tired of the hospital environment.  It is especially hard with the gowns and gloves for isolation.  I really don't mean to whine so much.....just using all your good strong shoulders to lean on tonight.

Just like Annie of the musical "Annie"..........Tomorrow, Tomorrow, the sun will come out Tomorrow..........

More Later.............................................Brenda

Draining!

This morning when I went to see Lee, the pulmonary doctors arrived shortly thereafter.  After talking to Lee, listening to his chest and checking out his chest drainage they expressed concern that he was not draining from the chest tube.  One of the doctors injected 60cc of ? into the tube and the main pulmonary  (in charge) doctor told us that if the tube did not drain by this evening then they would have to take him back to the operating room and drain the pleural space under anesthesia. He told him to get up and walk and move around to try to break open that pocket of fluid.

Well!  I was just praying that the lung would drain. We walked him around 4:00 and while we were walking, the drain began to drain and drain and drain.  We were very excited!  Now maybe things will change for the better.  Once the fluid dimenishes he will feel more like moving about.  We have been told it will probably be Monday before he can be discharged back to the condo and to the Center for the Living. 

Today he did get to have some visitors for a short while.  Mary Nell, Roger and Genice came by and then took me out for lunch.  While I was gone, our friends Ted and Diane Cable came by from Chapel Hill where Ted got a good report from his doctor.  Lee was so glad to get to visit with them.

Lee did not have a very good hospital lunch today and I was able to get him a low sugar strawberry smoothie that he enjoyed.  I had taken all the mail and he was able to go through his mail and I had the computer there so he seemed to enjoy going on-line and also reading the blog.

It is good to see him wanting to do more and to appear more interested in daily activities outside the hospital.  I'm sure he thinks about the farm because the cows are having calves and the last count was 11 calves.  He always enjoyed this time of the year.  We both miss the farm so very much.  I try not to think about it, it becomes too painful emotionally.  We just don't discuss it.  Our focus is here and on Lee's recovery.  Someone mentioned to me  today that soon Summer would be over and how fast it had gone.  I realized that the seasons and the time other than here have ceased to exist for us.  Strange how that happens when you are totally caught up in a medical situation that is a constant threat to someone you love.  I share some of our feelings with you because I know you care about what we are having to experience right now.  It is very comforting to both of us to know that at all times we are not alone.

Tomorrow holds the promise of a better day for Lee because of the draining chest tube.  Thus the importance of the word DRAINING!

More Later...............................................Brenda 

A See Saw Day

Big, Bad Storms are passing through Durham.  Fortunately, the one here is now on its way to another location.  I don't know when I have heard such violent thunder along with the wind that ushered the rain.  Good thing the storm only lasted about 20 minutes,  so now I feel comfortable getting on the computer.

Lee has had a fair day today.  It started off really good and he said he felt good.  About 10:00 he had to go to the I.V. lab and have a PICC line inserted into his L brachial vein.  (Catheter goes all the way to the heart)  this is a line that is about 20 inches long and can stay in his arm 3 weeks to 3 months.  He has to have it because he will need to stay on antibiotics via  I.V.  Anyway he was a little tired after that and the chest tube in his right side was causing some discomfort.  He was able to walk more today and his heart did very well.  He continues to maintain a normal rhythm.  He know that he does have to walk to get his strength.

One thing that I noticed as the day wore on is that Lee appeared to become increasingly short of breath.  The pulmonary doctors came by around 7:30 pm. and they felt that his chest tube may be occluded.  Again it just seems like every time one thing gets fixed another breaks down.  It is no wonder that Lee is beginning to be discouraged from time to time. 

I suppose this is the one thing that neither Lee nor I were prepared for. (break-downs and fixes or See Saw days and weeks )  We were both so naive that we truly believed that once he got new lungs or lung he would immediately be able to regain his strength.  Somehow we  were both under the delusion that all problems would be solved after that.  We were prepared for the risks and they were explained in detail to both of us but being the eternal optimist that we both are.......I suppose we looked the other way.  As Lee has encountered these "bumps in the road"( as they are referred to here), we have both found encouragement from all of you  and we want you to know that has played a major role in our survival. (  Lee's  physical,  mine mental ).

Dennis, once again, rescued me for dinner and we got caught in that awful storm I described earlier.  Tomorrow I hope to be able to see my sister-in-law, Mary Nell for a visit along with Genice and Roger.  It is always good for Lee to see those of you from home.

Take care Blog followers and along with me let's pray that Lee will have a good day tomorrow and that his chest drainage will improve.

More Later............................................Brenda

Lee is Back!

Two meanings to the title of todays blog.
 1.  Lee came back from the bronchoscopy (3 hours from the time he left the room) and the reports look good so far.  A biopsy was taken and we will not hear from that for a few days.  This is done to determine whether or not he is rejecting the lung.  This is routinely done on all lung transplants at specific intervals the first few months and throughout the first year.  The old chest tube was removed and another one is now in place.  The doctor was very encouraging when she talked to Lee.  She explained that all the complications he has experienced so far are not unusual.  Some people get through the rehab program, only to go home and have to return again.  She said it was good that Lee was getting his taken care of before going home to Vale.

2.  Lee is now like his old self. He appears happy and definitely is showing more strength.  It is so good to see the twinkle in his eye and have him communicating as he did before the heart problem.   He was starved when he returned from the bronchoscopy and ate ALL of his evening meal!

I met with the two discharge nurses today and they told me they are making arrangements for Lee to be discharged from the hospital.  He will have to have another PICC line inserted because he will have to continue to be on I.V. antibiotics when he returns to the condo.  They may do that tonight or sometime tomorrow......I suspect tomorrow.  I do know that he cannot be discharged with a chest tube and we will have to wait until that is removed.  My speculation is that it will be Saturday or Sunday.  It will be so good to get back into the rehab routine because that means he will get stronger and closer to our return home.

What a joy it was to leave him this evening feeling good about how he is doing.  He had been so very weak from the atrial fibrillation of his heart that it was discouraging for both of us.  His heart simply would not allow him the energy to do the least activity.  Now he is able to walk in such a way that you can see his strength returning!

It is amazing that these other caregivers are able to have a two-hour crash course on medications, feeding tubes, I.V. meds and sterile dressing changes and are able to do it!  My neighbor had to do that yesterday..........it was overwhelming and she asked for my help....................she was amazing!  Each day I am so thankful that I have a nursing background. 

Lee and I look forward to the time when we can personally see and thank all of you for being so faithful in following our daily blog and for keeping us in your prayers.  Thank you for your e-letters through Duke.org.  He was so happy to read them all.  He received 22 in one day!

More Later....................................................Brenda

A good night's sleep

Lee had a good night't sleep and I believe is ready for the challenges of this day.  As I was talking to him he was preparing to go for a chest x-ray. His days begin very early!  The cardiac team had already been in to talk to him and they told him that his heart was doing very well and his hert rhythm was normal.  They were discharging him from their service unless the pulmonary team of doctors saw a reason otherwise.  That is good news since it means that his heart has recovered from all the problems he had previously.

I suppose what happens next will be determined by the chest x-ray........whether to remove the chest tube that is in and/or put another in if there is still a pocket of fluid around the lung.  I'm praying the fluid is gone or will be gone and that we can move toward his getting out of the hospital soon.

I will let you know their decision whenever I get the report later today.

More Later.....................................Brenda

Blessings

Today is one of those days when we must stop and count our blessings.  Sometimes I get caught up in the difficult things that are happening and then I have to remind myselt that for this day, there were more good than bad things that happened.

For example:  Today Lee was able to double the walk of yesterday.  Not only did he double it once, he doubled it twice. Now that is a blessing!

Today Lee had a normal sinus ryhthm ALL DAY and ALL LAST NIGHT.  Now that is a blessing!

Today Lee ate as thought he had an appetite for food.  Now that is a blessing!

Today Lee Laughted out loud at something Elizabeth said to him.  Now that is a blessing!

Today Lee's oxygen level was maintained @ 95 to 100 percent on room air!  Now that is a blessing!

I was not there earlier today when the pulmonary doctors made rounds and Lee told me that they would discuss the best course of action for the remainder of his hospital stay at conference.  (There is a conference on all the pulmonary patients each Tuesday morning).  I left @ 8:00 this evening and we did not have another visit from any of the doctors.  I anticipate that they will enlighten us in the morning.  I may not get there early enough so Lee will have to pass that along when I get there.

Another good thing today and truly a blessing....our good friend, Carol H. from Hickory came for a short visit as she was passing through Durham.  Seeing a good friend, even briefly is always a blessing!

As you can see, whenever we look a little beyond what is directly in front of us, we find Blessings!

More Later...............................................................Brenda

Slowly but Surely

Lee appears to be regaining his strength slowly but surely.  He is still very weak but is now able to help feed himself and can brush his teeth.  I tell you this so that you may understand just how weak he is.  The physical therapist was able to get him to walk twice today.  He was able to walk a little more than one lap with many rest stops in the chair along the way.

I was able to talk to the pulmonary doctor today and she said she may be able to remove the chest tube this evening after she sees the CT scan that was done around 8:00 p.m.  His foley catheter was removed earlier and he still has his I.V. for all those antibiotics he is now on for the bacterial infection in his chest cavity (not his lung ).  The doctor said that if he will continue to walk and if the chest tube comes out, they will probably do a bronchoscopy on Friday or Saturday and then he may be able to be discharged back to the condo and resume his rehab bach at The Center For the Living next week.  From what I see now, he will have to get much more stronger than he is right now.

I was able to have lots of relief and time away from the hospital again today.  Elizabeth came from Radford, Va. at 1:00 p.m. and stayed until 6:30 p.m.  I was able to catch up on some necessary paperwork today that required a lot of my time.

The Good news is that his heart rate is normal and there is no atrial fibrillation.  The bad news is that because of the bacterial infection we must wear those very hot and uncomfortable gowns and gloves while in the room with Lee.  It will be so good to get him back here once again and back into a routine that allows us to move closer to completing the 23 sessions and returning to Vale.  We are both homesick!

Pray for us as we continue this journey that we will focus on what we must do to rehabilitate Lee and not become so impatient to return home.  We can only do that as Lee's body allows.  I do ask that you keep him in your prayers as I know you are.  Thank you for that.

More Later.................................................................Brenda

 

Michaela came in to cheer Granddad up with a song!

Lee had some visitors! Lillie showing off her new cloths.

Starting Over Again

Great News!  Lee has finally awakened (took him about 24 hours).  He was not asleep but he was very groggy until later this afternoon.  He is eating better now and finally................no atrial fibrillation.  His blood pressure is very good also.

Bad News is that last night he bled quite a bit from the incision for the ablation procedure.  This incision is in his left groin area and that is where the catheter was introduced.  That is also one of the predictable complications of that procedure.  A vice-type clamp was placed over it last night and most of today and he had to lie flat in bed until it was removed later this afternoon.  When Lee Jr. and I left about an hour ago, he was dry (no bleeding) and he looks the best he has looked since this episode began last Sunday.

He is now on contact isolation because he was cultured during the procedure and found to have some bacteria in the culture.  Contact Isolation means that everyone entering the room must wear a gown and gloves.  So far, no masks are required.  He is also on several I.V. antibiotics.  It is my understanding that this isolation will continue as long as he is in the hospital.  At this time, he still has an I.V., a chest tube to drainage, and a foley catheter.  I am not sure how much activity (walking) he will be able to do tomorrow.  I'm hoping that he will be able to start walking again.  That is the key to regaining his strength.

Since I had lots of help from Todd, Donna and Lee, Jr. for Saturday and all of Sunday, I decided to accept Dennis and Betsy's invitation to Dinner @ their home in Raleigh.  It was wonderful to relax in their home and enjoy their good home cooking.  I stayed overnight and was able to attend their church service on Sunday morning.  I was so glad to be able to do that especially since Dennis will be retiring from Graystone Baptist the end of August.
As we were finishing lunch, Julia called and said she and the girls were on their way and would arrive at the condo around 2:45.  I left Raleigh and was here shortly before they arrived.  Seeing the children and some grandchildren this week-end was a good tonic for me after the difficult week before.

After having supper with them and Lee, Jr. we sent the girls on their way home to Morganton and Lee Jr. and I stayed with Lee, helped him settle in for the night and decided to call it a day.  Lee Jr. is here with me tonight and he will leave for the beach to join his family after visiting his Dad in the a.m.  Elizabeth is coming tomorrow and I will probably use that time to catch up here.

This Sunday night promises to be much better than last Sunday night.  Hopefully, much more progress will be made by next Sunday. Thanks to all of you who follow our life story and for all the support we feel from you .

More Later............................................Brenda