Good News! Today was a really good day for Lee. After several failed efforts yesterday for him to get on his feet, it was time to try again. With the help of a really good nurse and two others, Lee got out of the chair and on his feet to walk! He walked out of the room, past the nurses station and back again.. All of the nurses and doctors @ the nurses station applauded and gave him the thumbs up with loud cheers as he came by! It was an exciting and thrilling moment. The amazing part was that @ the beginning his blood pressure dropped dramatically and the nurse said, "Let's go". As soon as Lee started walking his blood pressure improved with each step. By the time he returned to his bed the blood pressure was very good! We were all so proud of him. His nurse said, "Congratulations Mr. Kanipe, you just ran the equivilant of a Marathon for me!"
Now I know that he is on his way.......................He will be monitored to make sure he is out of danger of the irregular heartbeat from yesterday and will be moved in the next 48 hours or so to the step-down unit where he must complete four laps around a preassigned area. When he does that and all other signs are good, then he will be discharged to the Living Center for rehab and will be able to live here at the condo. All this, of course depends on him so my timing could be wrong. He looks really good and is breathing on his own with NO oxygen! I asked him how he felt and he said,"I have not only been hit by a Mac Truck, I have been hit by a loaded Mac Truck!
I know your are all yelling a big YEAAAAAAAAAAAA & Praise the Lord for Lee! Thanks to all.........................More later...................Brenda
Wednesday, June 30, 2010
OTHERS TOO
I am preparing to go to the hospital and just wanted to pass some more information to you. I talked to Lee's nurse last night and again this morming. He rested well last night but continues to go into atrial fib. This a.m. as we talked he was again in atrial Fib. The doctors were there and they were in the process of determining a better course of treating this situation. I will learn more after my visit today. I wait to visit after rounds, morning procedures, etc. It is during this time that I would just have to sit in the waiting room and read. I choose to go when I know I can see him.
I am going to ask you to remember OTHERS TOO during your prayers. There are many people staying here @ Duke Towers because they are receiving treatment @ Duke. For example, I recently met one of our neighbors who is being treated for pancreatic cancer and will undergo a new type of surgical procedure for that. Meanwhile he is on chemo. While talking to him he asked for my prayers and I told him I would put him on our prayer lists. He wants you to know his name: Wayne Byrd. He is an attorney who traveled and was so proud of his son who recently received his law degree. I have seen him here helping his Dad.
There are so many stories here: The couple I see walking daily and one can see the scars across his scalp and realize that he probably had brain tumors. The lady who walks daily, knowing that is her key to staying alive now. The couple we met earlier who had a double lung transplant on May 4 and will be leaving to return to Roanoke July 6. Another Lady, retired atcheologist waiting patiently to be put on the list for a lung, all the while knowing that her condition is getting worse. We continue to make new friends along this journey. I would ask that your remember Jerry and Gloria as they are waiting to be placed on the list. So many wonderful people brought togerther by a common goal of survival.
Duke Hospital and the surrounding area is a medical community that gives hope to so many people. I ask that you pray for this facility and for all the doctors and nurses and all those who work so deligently to bring that hope to so many to fruition. I will share more about Lee later today when I have more news. Thank you for your prayers for us and others too.
I am going to ask you to remember OTHERS TOO during your prayers. There are many people staying here @ Duke Towers because they are receiving treatment @ Duke. For example, I recently met one of our neighbors who is being treated for pancreatic cancer and will undergo a new type of surgical procedure for that. Meanwhile he is on chemo. While talking to him he asked for my prayers and I told him I would put him on our prayer lists. He wants you to know his name: Wayne Byrd. He is an attorney who traveled and was so proud of his son who recently received his law degree. I have seen him here helping his Dad.
There are so many stories here: The couple I see walking daily and one can see the scars across his scalp and realize that he probably had brain tumors. The lady who walks daily, knowing that is her key to staying alive now. The couple we met earlier who had a double lung transplant on May 4 and will be leaving to return to Roanoke July 6. Another Lady, retired atcheologist waiting patiently to be put on the list for a lung, all the while knowing that her condition is getting worse. We continue to make new friends along this journey. I would ask that your remember Jerry and Gloria as they are waiting to be placed on the list. So many wonderful people brought togerther by a common goal of survival.
Duke Hospital and the surrounding area is a medical community that gives hope to so many people. I ask that you pray for this facility and for all the doctors and nurses and all those who work so deligently to bring that hope to so many to fruition. I will share more about Lee later today when I have more news. Thank you for your prayers for us and others too.
Tuesday, June 29, 2010
A LATE DAY
Sorry to be late for my blog followers. It has been another very busy day for Lee. The good news is that his new lung is doing GREAT! The bad news is that his heart isn't adjusting very fast from the double coronary by-pass procedure. A lot of stimulation triggers Atrial Fibrillation and then they have to do a cardioversion. This is done by using a defibrillator to shock him or by using I.V. medication.
After I left him yesterday evening, he was sitting up in a chair beside the bed. I learned this morning that when they stood him up to put him back in bed he lost consciousness and then went into atrial fib. They had to use med to reverse him and that worked. He remained stable during the night.
Today he looks a lot better and gradually more and more tubes, connections, etc are being removed or eliminated. He said he felt like the room was 10 degrees cooler with most of the electronics removed above the head of his bed. While they were doing some more procedures today he went into atrial fib again and had to be reversed by shocking him. They do give him medication (same as used for most colonoscopies) and he does not feel it nor does he remember it. He was able to again be placed in the sitting position in this special bed that he is in and they were only going to get him out of bed when his blood pressure stayed higher than it was at that time.
I share this detailed information with you so you will understand how difficult this is for Lee and how he continues to be in a critical condition. We have been reassured that everything is under control and that he will progress only in the time frame that his body will allow. Meanwhile, he must stay in an area that monitors him very carefully. Whenever he can walk, he will be moved into a step-down area that is also an intensive care area and in that area the concentration will be on getting him up and walking with immediate access to monitoring when needed. It will be from that area that he will be discharged to return here to the condo and back into the rehabilitation program at the Center for Living.
During his recuperation, Lee will have to attend a minimum of 23 rehab sessions, during which time he will have weekly visits to the clinic for blood tests and to the hospital for bronchoscopies.These are done for determining rejection of the lung at the earliest stage so the medication may be adjusted accordingly. These will gradually decrease as he increases in recovery. We anticipate being in Durham at least through August. As you can see, It is still a long road home.......................more later.......................................Brenda
After I left him yesterday evening, he was sitting up in a chair beside the bed. I learned this morning that when they stood him up to put him back in bed he lost consciousness and then went into atrial fib. They had to use med to reverse him and that worked. He remained stable during the night.
Today he looks a lot better and gradually more and more tubes, connections, etc are being removed or eliminated. He said he felt like the room was 10 degrees cooler with most of the electronics removed above the head of his bed. While they were doing some more procedures today he went into atrial fib again and had to be reversed by shocking him. They do give him medication (same as used for most colonoscopies) and he does not feel it nor does he remember it. He was able to again be placed in the sitting position in this special bed that he is in and they were only going to get him out of bed when his blood pressure stayed higher than it was at that time.
I share this detailed information with you so you will understand how difficult this is for Lee and how he continues to be in a critical condition. We have been reassured that everything is under control and that he will progress only in the time frame that his body will allow. Meanwhile, he must stay in an area that monitors him very carefully. Whenever he can walk, he will be moved into a step-down area that is also an intensive care area and in that area the concentration will be on getting him up and walking with immediate access to monitoring when needed. It will be from that area that he will be discharged to return here to the condo and back into the rehabilitation program at the Center for Living.
During his recuperation, Lee will have to attend a minimum of 23 rehab sessions, during which time he will have weekly visits to the clinic for blood tests and to the hospital for bronchoscopies.These are done for determining rejection of the lung at the earliest stage so the medication may be adjusted accordingly. These will gradually decrease as he increases in recovery. We anticipate being in Durham at least through August. As you can see, It is still a long road home.......................more later.......................................Brenda
Monday, June 28, 2010
A REAL WORK OUT FOR LEE
Today has been a very busy day for Lee. It started at the change of shift 7:00 a.m. The usual routine with the report being passed from nurse to nurse does not allow time for sleep and that is usually followed with rounds consisting of many doctors. Lee's lung surgeon was in early and he told Lee to cough two or three times. The nurse said Lee did very well. After he left two of the four chest tubes were removed. This was followed by a chest x-ray, which was immediately followed by a breathing test. Not long after that the speech therapist came in to examine Lee and to determine his swallowing functions. (This is very important post lung procedures to prevent any aspiration contents from entering the respiratory tract thus into the lungs.) Fortunately, he passed the water and ice chips and she was to return later this afternoon to have him swallow some applesauce.
I arrived at the hospital around 10:00 but was not allowed to see him until about 11:30 because there were many procedures to be done today. Good that I remembered to bring his razor and toothbrush because he was asking for that. He really looked better after the shave, facewashing and brushing of teeth that I did. He even wanted me to comb his hair. Personal appearance concern is always a a good sign! I could not stay long because an I.V. specialists arrived to establish a pic line in his Left upper are. This is a long-term I.V. site to be used for meds and blood samples over the period of the next few weeks. Once this line was done the subclavian vein was discontinued. He was so tired after that, I suggested he try to sleep for a while. Within 15 min (and he was napping) the physical therapist came in to get him out of bed and into a chair.
I left and returned when they called and was able to see him sitting in the chair. He looked very good. His color is excellent even though he was sitting very gingerly due to the discomfort. As I was leaving, the speech therapist had returned to test his swallowing with applesauce. I was told that he will probably stand and walk tomorrow.
More Later.............................Brenda
I arrived at the hospital around 10:00 but was not allowed to see him until about 11:30 because there were many procedures to be done today. Good that I remembered to bring his razor and toothbrush because he was asking for that. He really looked better after the shave, facewashing and brushing of teeth that I did. He even wanted me to comb his hair. Personal appearance concern is always a a good sign! I could not stay long because an I.V. specialists arrived to establish a pic line in his Left upper are. This is a long-term I.V. site to be used for meds and blood samples over the period of the next few weeks. Once this line was done the subclavian vein was discontinued. He was so tired after that, I suggested he try to sleep for a while. Within 15 min (and he was napping) the physical therapist came in to get him out of bed and into a chair.
I left and returned when they called and was able to see him sitting in the chair. He looked very good. His color is excellent even though he was sitting very gingerly due to the discomfort. As I was leaving, the speech therapist had returned to test his swallowing with applesauce. I was told that he will probably stand and walk tomorrow.
More Later.............................Brenda
Sunday, June 27, 2010
YEAAAAAA!
Lee is sitting up in bed and the ventilator is out! He can now talk to us and he is connected to one (1) Liter of oxygen just as a precaution. He is breathing on his on! The lung is working! Yeaaaaaaaaaaa! More later.............................Brenda
Surgical Intensive Waiting Room
Doug, Todd, Julia and I have been in the waiting room most of the day. We have had to wait longer for short visits today because there have been many procedures today. This morning the heart balloon was removed. This was a balloon that was introduced to the heart via the femoral artery and was already in place during the surgery. It was left in place to assist his heart during the critical post-operative period. He has experienced some irregular heart beat and @ times the defibrillator had to be used. We have been asked not to stimulate him and to keep our visits short because that may contribute to another episode. We visit in two's and we just want to reassure him of our presence whether in this room or in the waiting room. We have been told that he must continue to lie flat until the six-hour period post balloon removal has expired. We are now anticipating the time when respiratory therapists will be able to get him off the vent as that is supposed to happen today. I'm sure Lee will be more comfortable then. Passing a feeding tube is another procedure that will be done. They have tried several times but it causes his heart to become overstimulated and that causes an atrial fibrillation which in turn requires defribillation.
I know all this sounds very complicated and believe me it is. They do, however, have this down to a fine art. There are monitors and medications already connected that can be utilized at a moments notice. The medicines are already drawn and in place connected to many tracks and stopcocks f or ease of on and off. He has stationary defib pads on his chest already connected to the defibrillator and can be fired in a matter of seconds. As you can see, no time is wasted in any emergency or crisis that may arise.
I will say that he looks better today. His color is good and he does not appear as swollen as yesterday. When we ask how he is doing the answer is usually, very good, great, or he is really a good sport or a good fighter. We take these remarks as encouraging words for now.
Just thought you might want to know about the power of your prayers for Lee getting a lung. We have been told by many, many people that Lee received his lung the fastest of any they can remember. Our thanks to all of you for that very special requests. We appreciated all your prayers and for your love. More Later....................Brenda
I know all this sounds very complicated and believe me it is. They do, however, have this down to a fine art. There are monitors and medications already connected that can be utilized at a moments notice. The medicines are already drawn and in place connected to many tracks and stopcocks f or ease of on and off. He has stationary defib pads on his chest already connected to the defibrillator and can be fired in a matter of seconds. As you can see, no time is wasted in any emergency or crisis that may arise.
I will say that he looks better today. His color is good and he does not appear as swollen as yesterday. When we ask how he is doing the answer is usually, very good, great, or he is really a good sport or a good fighter. We take these remarks as encouraging words for now.
Just thought you might want to know about the power of your prayers for Lee getting a lung. We have been told by many, many people that Lee received his lung the fastest of any they can remember. Our thanks to all of you for that very special requests. We appreciated all your prayers and for your love. More Later....................Brenda
Saturday, June 26, 2010
RECOVERY
Julia, Doug and I just returned from the hospital after spending some time with Lee between 8 and 9 p.m. Julia surprised us by coming back again tonight. This was good for me because Jennifer and Lee left earlier and it seems as though I hit a low around that time. My adrenalin level has dropped after all the excitement of getting the lung and now I have been experiencing fatigue. My other concern was that Lee looked especially tired today. He had a very busy morning. After I had talked with the nurse earlier, Lee had some irregular heart rhythm and had to be shocked five times to get the normal rhythm back. He also had to have a bronchoscopy done and he was very tired and in some pain following his rough a.m.
Fortunately, when we returned tonight he looked much better. He was watching Americas Funniest Videos and was enjoying it! We watched it with him and it was good to see him looking much better thatn he had earlier today. He told us that tomorrow they may take him off the ventilator. He is breathing on his own even though he is on the ventilator if he needs help. It is getting late so will turn in for tonight and let you know what tomorrow brings.
Thank you for your prayers........................more later..................Brenda
Fortunately, when we returned tonight he looked much better. He was watching Americas Funniest Videos and was enjoying it! We watched it with him and it was good to see him looking much better thatn he had earlier today. He told us that tomorrow they may take him off the ventilator. He is breathing on his own even though he is on the ventilator if he needs help. It is getting late so will turn in for tonight and let you know what tomorrow brings.
Thank you for your prayers........................more later..................Brenda
A GOOD NIGHT
A good morning to all my Blob followers! Yes, it really is this early and yes, I have been awake since 5:45. I called the intensive care unit @ 6:45 and got a really good report on Lee. To quote,"He had a GREAT night". He was able to rest and get some sleep. That is good because this could be a busy day for him. There are many tubes connected and some of these may come out today. Yesterday he was trying to communicate to me and I just could not follow what he was trying to say. In his frustation, he pointed to my hair and I knew he was referring to my "blond status", a standing joke between us. As you can see, he has his sense of humor.
Allowed visits to the intensive area is for immediate family only (this also applies to the waiting area) and we limit our time to 10 min. Lee is usually very tired and at times asks us to leave. We have learned his hand signal for that now! Hopefully his tube in his trachea (connected to the ventilator) will be removed soon and he will be able to talk to us. He has been able to let us know that his throat is very sore from the tube.
For those of you who wish to visit I will have to let you know when. At this point, no visitors outside immediate family. There will continue to be some restrictions as he progresses because precautions must be taken to prevent any conditions that may contribute to his rejecting the new lung. Just stay tuned to the blog for information concerning that.
As for now, Lee Jr., Jennifer, and Doug are still with me and my challenge begins next week when I find myself alone. I am so blessed to have Dennis, Betsy, Roger, Genice and Michele who live in Raleigh available to me. Last night Dennis and Betsy fixed dinner for everyone.
Almost time to prepare to leave for the hospital...................more later.............
Brenda
Allowed visits to the intensive area is for immediate family only (this also applies to the waiting area) and we limit our time to 10 min. Lee is usually very tired and at times asks us to leave. We have learned his hand signal for that now! Hopefully his tube in his trachea (connected to the ventilator) will be removed soon and he will be able to talk to us. He has been able to let us know that his throat is very sore from the tube.
For those of you who wish to visit I will have to let you know when. At this point, no visitors outside immediate family. There will continue to be some restrictions as he progresses because precautions must be taken to prevent any conditions that may contribute to his rejecting the new lung. Just stay tuned to the blog for information concerning that.
As for now, Lee Jr., Jennifer, and Doug are still with me and my challenge begins next week when I find myself alone. I am so blessed to have Dennis, Betsy, Roger, Genice and Michele who live in Raleigh available to me. Last night Dennis and Betsy fixed dinner for everyone.
Almost time to prepare to leave for the hospital...................more later.............
Brenda
Friday, June 25, 2010
33 hours post surgery
Just came out of the intensive area and Lee looks really good. He is , of course, pale but he is able to communicate with his hands and eyes. He is able to nod yes or no and it is good to be able to communicate even in the most primal ways. He says that he is pain free and the biggest problems to him at the moment are the pessure stockings on his legs. Everytime he trys to sleep they expand and cause him to awaken. Right now he is still on the ventilator for assistance with his breathing. The challenge for the medical team today is to remove fluid from his body and at the same time allow enough fluid for his heart. His monitors look good as best as I could tell. The nurse said everything was stable at this time.
Lee has been able to maintain his sense of humor and we have at times been able to laugh some with him. For example, yesterday evening Todd and I were with him and he kept trying to do a hand signal with his forefinger and thumb to look like a G or C and at the same time he would quickly close both eyes and drop his face toward his chest. After many questions as to pain, discomfort, or calling the nurse we finally figured out that he wanted us to GO so he could take a nap! Todd and I had to laugh that he was actually ordering us out of the room!
We still do not know when he will come off the vent or the time for getting him moving about. We do know that we trust their judgment in all these matters and that we put our trust and faith in the Lord. Thank you for you calls and concerns and most of all for your continuing support through your prayers. More later......Brenda
Lee has been able to maintain his sense of humor and we have at times been able to laugh some with him. For example, yesterday evening Todd and I were with him and he kept trying to do a hand signal with his forefinger and thumb to look like a G or C and at the same time he would quickly close both eyes and drop his face toward his chest. After many questions as to pain, discomfort, or calling the nurse we finally figured out that he wanted us to GO so he could take a nap! Todd and I had to laugh that he was actually ordering us out of the room!
We still do not know when he will come off the vent or the time for getting him moving about. We do know that we trust their judgment in all these matters and that we put our trust and faith in the Lord. Thank you for you calls and concerns and most of all for your continuing support through your prayers. More later......Brenda
Thursday, June 24, 2010
After checking on Lee in Intensive care earlier this morning, I felt it was in my best interest to return with Julia, my daughter, and try to get some sleep and rest. I just talked to Lee's Intensive care nurse and this is the report on Lee as of 4:45 p.m.:
He has at small intervals been allowed to begin to emerge from the drugs that allow him to sleep, and was promptly put back under as it is not quite time for him to wake up. Withdrawal at small intervals from the ventilator have also occurred but he will remain on the ventilator as of now. The lung surgeon will be back to check and make more decisions whenever he returns from the case he is now on in the operating room. The plan at this point is to help maintain his stablization. All his vital signs are holding well.
I was really tired when writing the last blog so will try to clarify some things:
Lee had two (2) coronary artery bypass procedures. He did have to have the center through the sternum incision which also meant that he had to be placed on the heart by-pass unit. This is a special perfusion unit that allows the surgeons to stop the heart and allow the unit to take on the work of the heart during the procedure. It is usually used on all by-pass coronary procedures that require more than one bypass.
Lee tolerated this precedure well and the lung transplant was also done through this incision. The good news is that he probably will not experience as much pain post-op as he would have with the under the rib or crab incisions usually reserved for lung transplants.
I am told that right now there is a balancing of sorts to be able to do what is best for the heart vs what is best for the lung. For example: The heart needs more fluid in the vessels and the lungs need to be kept more dry so it is a challange during these critical post-op hours to complete that with success. These first 24-48 hours are critical and Lee is receiving one on one care with many doctors nearby. It is amazing to watch how thorough and confident these nurses and doctors are and to know that they certainly know what they are doing. To this ancient nurse, the feeling and comparison is likened to having steped into another time zone that is comparable to the "Star Trek" series of the 70;s.
Please continue your prayers for Lee as I know you will and for me to have the physical and mental strength to be everything I need to be to help him along his journey to recovery. We are both looking forward to the time for him to move freely without being tethered to a line of oxygen. More Later.........Brenda
He has at small intervals been allowed to begin to emerge from the drugs that allow him to sleep, and was promptly put back under as it is not quite time for him to wake up. Withdrawal at small intervals from the ventilator have also occurred but he will remain on the ventilator as of now. The lung surgeon will be back to check and make more decisions whenever he returns from the case he is now on in the operating room. The plan at this point is to help maintain his stablization. All his vital signs are holding well.
I was really tired when writing the last blog so will try to clarify some things:
Lee had two (2) coronary artery bypass procedures. He did have to have the center through the sternum incision which also meant that he had to be placed on the heart by-pass unit. This is a special perfusion unit that allows the surgeons to stop the heart and allow the unit to take on the work of the heart during the procedure. It is usually used on all by-pass coronary procedures that require more than one bypass.
Lee tolerated this precedure well and the lung transplant was also done through this incision. The good news is that he probably will not experience as much pain post-op as he would have with the under the rib or crab incisions usually reserved for lung transplants.
I am told that right now there is a balancing of sorts to be able to do what is best for the heart vs what is best for the lung. For example: The heart needs more fluid in the vessels and the lungs need to be kept more dry so it is a challange during these critical post-op hours to complete that with success. These first 24-48 hours are critical and Lee is receiving one on one care with many doctors nearby. It is amazing to watch how thorough and confident these nurses and doctors are and to know that they certainly know what they are doing. To this ancient nurse, the feeling and comparison is likened to having steped into another time zone that is comparable to the "Star Trek" series of the 70;s.
Please continue your prayers for Lee as I know you will and for me to have the physical and mental strength to be everything I need to be to help him along his journey to recovery. We are both looking forward to the time for him to move freely without being tethered to a line of oxygen. More Later.........Brenda
OUT OF SURGERY
Lee's surgery was over ! 1:30 a.m. The surgeon came to talk to us and Lee tolerated the coronary bypass, the heart-lung bypass and the lung transplant very well. He is now in the intensive care unit and we are waiting to be able to see him briefly. Just spoke to the anesthesiologist and he said that Lee did better than he had expected. Lee is still asleep and will not awaken for some time. We feel blessed that we got this good report. After I see him, will get some rest. More later....................Brenda
Wednesday, June 23, 2010
THE HAPPENING !!
It has finally happened! We received the call today around 11:15 a.m. that a lung was ready for Lee. He had just finished half of his lunch when she asked if he had had anything to eat or drink. When he told her he was having lunch she said to finish his lunch and come to the admissions @ the hospital.
Lee was admitted to the hospital and into the pre-op holding area around 1:30 pm. After waiting a long time and after having another 20 vials of blood drawn again, Lee was interviewed by the anesthetist and other special medical persons. Finally, around 6:00 pm the call came that the lung was satisfactory and it was a Go! He was immediately moved from the 9th floor to 3rd floor. I was able to stay with him in the holding area until 7:30 . I have to tell you this is one calm man! Just being near him helped me to calm my fears. He was wearing a red hat and I teased him @ having been iniated into the Red Hat Society. Shortly after I was asked to wait in the waiting room. It was very hard to leave him but we both knew that this was what we had prayed for and it was now here.
We were told ! 9:00 that surgery had just begun......................it will be a long night. He will be having two operative procedures. A double coronary bypass and one lung (right) transpslant. Todd, Donna, my brother Dennis are with me. Dennis has been with me since 3:00 and had prayer with us before he left. Doug, Greg and Julia are on their way here.
I will update the blog as we learn more about Lee. I know we are in your prayers. Thank you. Brenda
Lee was admitted to the hospital and into the pre-op holding area around 1:30 pm. After waiting a long time and after having another 20 vials of blood drawn again, Lee was interviewed by the anesthetist and other special medical persons. Finally, around 6:00 pm the call came that the lung was satisfactory and it was a Go! He was immediately moved from the 9th floor to 3rd floor. I was able to stay with him in the holding area until 7:30 . I have to tell you this is one calm man! Just being near him helped me to calm my fears. He was wearing a red hat and I teased him @ having been iniated into the Red Hat Society. Shortly after I was asked to wait in the waiting room. It was very hard to leave him but we both knew that this was what we had prayed for and it was now here.
We were told ! 9:00 that surgery had just begun......................it will be a long night. He will be having two operative procedures. A double coronary bypass and one lung (right) transpslant. Todd, Donna, my brother Dennis are with me. Dennis has been with me since 3:00 and had prayer with us before he left. Doug, Greg and Julia are on their way here.
I will update the blog as we learn more about Lee. I know we are in your prayers. Thank you. Brenda
A RECORD HOLDER!
Yesterday Lee acquired a new status at The Center For Living. He was told that he holds the record for requiring the HIGHEST OXYGEN NEED for walking. He has to have 50 Liters to walk more than three laps around the 400 foot track. Yesterday he walked 5 laps but only with the high volume of O2. This gives you some idea of the challenge he has faced all along and how hard he has had to work to move from 20 feet on March 11 to 2000 feet today. He is getting stronger every day and yesterday was another first. He did not use the rolater to walk into and out of the center. He just pushes his double cylinder cart in front and walks along with no assistance.
This, of course, is good that he is able to demonstrate strength returning, but at the same time it also gives you a good perception of just how bad his lungs are and how desperate we are to get a new lung. We pray every day that this time comes soon. Lee would like for me to tell you that rehab is becoming easier and completing all the different phases can now be completed within the alloted time frame. He asks that you continue to pray for a good lung for him and to remember to pray that he will be able to endure this procedure without complications. He said to thank you for your continuing support.
Must share my visit with my grand neice, Camilla from Sacramento. She is a very beautiful almost 5 year-old with very curly blond hair and big blue eyes. During our tour of the courtyard, she said it was time to "cool our dogs." I, thinking she was talking about her imaginary dogs, Just said, "o.k." Come on, she said.....and I asked, where are your dogs? She pointed to her feet and said , let's put our dogs in the pool! It was good to have a good laugh with a 5-year old.
Lee has been invited to be part of a research program and will meet with a representative this afternoon. I will drop him off @ 12 and return for the caregivers class @ 3:40. Today is my day to lunch with the other caregivers. More later...............................Brenda
This, of course, is good that he is able to demonstrate strength returning, but at the same time it also gives you a good perception of just how bad his lungs are and how desperate we are to get a new lung. We pray every day that this time comes soon. Lee would like for me to tell you that rehab is becoming easier and completing all the different phases can now be completed within the alloted time frame. He asks that you continue to pray for a good lung for him and to remember to pray that he will be able to endure this procedure without complications. He said to thank you for your continuing support.
Must share my visit with my grand neice, Camilla from Sacramento. She is a very beautiful almost 5 year-old with very curly blond hair and big blue eyes. During our tour of the courtyard, she said it was time to "cool our dogs." I, thinking she was talking about her imaginary dogs, Just said, "o.k." Come on, she said.....and I asked, where are your dogs? She pointed to her feet and said , let's put our dogs in the pool! It was good to have a good laugh with a 5-year old.
Lee has been invited to be part of a research program and will meet with a representative this afternoon. I will drop him off @ 12 and return for the caregivers class @ 3:40. Today is my day to lunch with the other caregivers. More later...............................Brenda
Tuesday, June 22, 2010
OUR ROUTINE
Wow! 100 degrees in the shade in Durham! We are back to our schedule with free mornings and afternoons from 12-5:00 filled with time travel to the Center For Living and for Lee's time there for rehab. An example of the day looks like this:
12:00.....................leave for the drive for Center for Living (3.9 miles)
Lee stays in car on his oxygen @ 15-30 Liters while I retrieve oxygen from the learning center along with the rolator (lLee walks on 30L)
We exchange our oxygen for the one I brought out and Lee walks into the center with the rolator. I follow alongside with our oxygen.
Once inside, Lee uses his card with the barcode and he proceeds to the meeting area. I leave.
While Lee is there his exercise program begins promptly @ 12:30 after a short meeting with the physical therapists. He is required to do a specified number of minutes on the following:
1. Floor exercises
2. Upper extremities weights
3. Lower extremities weights
4. Stair steps
5. Bicycle
6. Walking around the track
He is expected to accomplish these with only a short break or none at all between.
Lee completes his sessions @ 3:30 and goes into the classroom. He will sit in the classroom until 4:30. Today's session is on Stress.
I will pick him up at the end of this class, take him to the car while he waits with their oxygen and I go to retrieve ours. After we exchange, I return oxygen to Living Center then meet Lee at the car or shuttle and we return to the condo.
As you can imagine, Lee is exhausted by the end of the day and must rest as soon as we return. We do welcome week-ends for the respite.
Just thought you might want to know all he has to do and how everything requires very high volumes of oxygen. This requires at least 30-50 Liters of oxygen!
I have been driving him to & from since we are on the list and also because it is so very hot here. The shuttle bus is very hot and sometimes makes many stops along the way. This causes some anxiety about our status on the amount of oxygen needed on the trip and that is eliminated when I drive.
This afternoon, my nephew Ivan, wife Susan and kids are dropping by on their way to Raleigh. I invited them for Ice Cream, went to Krogers and became so busy with a new place to shop that I bought too much. While unpacking my treasures, I realized I had forgotten the main purpose of my trip.....ICE CREAM!
Oh Well..................................More Later..........................Brenda
12:00.....................leave for the drive for Center for Living (3.9 miles)
Lee stays in car on his oxygen @ 15-30 Liters while I retrieve oxygen from the learning center along with the rolator (lLee walks on 30L)
We exchange our oxygen for the one I brought out and Lee walks into the center with the rolator. I follow alongside with our oxygen.
Once inside, Lee uses his card with the barcode and he proceeds to the meeting area. I leave.
While Lee is there his exercise program begins promptly @ 12:30 after a short meeting with the physical therapists. He is required to do a specified number of minutes on the following:
1. Floor exercises
2. Upper extremities weights
3. Lower extremities weights
4. Stair steps
5. Bicycle
6. Walking around the track
He is expected to accomplish these with only a short break or none at all between.
Lee completes his sessions @ 3:30 and goes into the classroom. He will sit in the classroom until 4:30. Today's session is on Stress.
I will pick him up at the end of this class, take him to the car while he waits with their oxygen and I go to retrieve ours. After we exchange, I return oxygen to Living Center then meet Lee at the car or shuttle and we return to the condo.
As you can imagine, Lee is exhausted by the end of the day and must rest as soon as we return. We do welcome week-ends for the respite.
Just thought you might want to know all he has to do and how everything requires very high volumes of oxygen. This requires at least 30-50 Liters of oxygen!
I have been driving him to & from since we are on the list and also because it is so very hot here. The shuttle bus is very hot and sometimes makes many stops along the way. This causes some anxiety about our status on the amount of oxygen needed on the trip and that is eliminated when I drive.
This afternoon, my nephew Ivan, wife Susan and kids are dropping by on their way to Raleigh. I invited them for Ice Cream, went to Krogers and became so busy with a new place to shop that I bought too much. While unpacking my treasures, I realized I had forgotten the main purpose of my trip.....ICE CREAM!
Oh Well..................................More Later..........................Brenda
Monday, June 21, 2010
Checking Time Stamp
Brenda this is Bo. I believe that I have fixed the time problem you asked about.
A DRY RUN!
We were awakened @ 11:15 to the sound of Lee's cell phone (which was in the kitchen charging). I had only been asleep less that an hour and was very disoriented at being awakened suddenly. It was the lung transplant nurse calling to tell us they had a lung and we were to go to the emergency room. Fortunately I had made a list and packed most everything we would need on Sunday afternoon. I hurridly dressed and then helped Lee to dress. After linning up the oxygen I realized we did not have enough to travel. I changed the two cylinders and of course one of the valves kept leaking. At this point I am getting a little frustrated. Lee was very calm and told me to get the screwdriver and the washers and he would fix the valves to keep them from leaking. Can you imagine facing a lung transplant and a coronary artery bypass and being calm enough to leisurely change the two valves on the oxygen cylinders???!! I tell you the truth, he is wired differently....truly the bionic man!
Anyway, we called our children who had asked to be called regardless of true surgery or dry run, then we called the shuttle and were on our way by 11:45 p.m. Lee was quickly moved to the prep area and after they drew 20 vials ( yes 20) of blood samples, did a chest x-ray, EKG, and a physical exam by a doctor who could not have been a day over 17, we were told to make ourselves comfortable and the nurse would call when the lungs were ready.
After being given warm blankets, Lee settled in and fell asleep around 1:00 while I in my very uncomfortable recliner finally dozed after 2:00. We both were awakened by another phone call @ 7:00 telling us that unfortunately the donated lungs could not be used and that we were discharged to go back home.
We had a big breakfast and now Lee is asleep in his recliner and must attend rehab @ 12:.30 today I will probably sneak a nap this afternoon.
Please be in prayer also for those who so generously release the lungs of a loved one recently expired. We are so thankful for their unsurpassed generiosity. We do not know where nor whom the donor & family is but we want to always be in thoughtful prayer for them. More later..........Brenda
Anyway, we called our children who had asked to be called regardless of true surgery or dry run, then we called the shuttle and were on our way by 11:45 p.m. Lee was quickly moved to the prep area and after they drew 20 vials ( yes 20) of blood samples, did a chest x-ray, EKG, and a physical exam by a doctor who could not have been a day over 17, we were told to make ourselves comfortable and the nurse would call when the lungs were ready.
After being given warm blankets, Lee settled in and fell asleep around 1:00 while I in my very uncomfortable recliner finally dozed after 2:00. We both were awakened by another phone call @ 7:00 telling us that unfortunately the donated lungs could not be used and that we were discharged to go back home.
We had a big breakfast and now Lee is asleep in his recliner and must attend rehab @ 12:.30 today I will probably sneak a nap this afternoon.
Please be in prayer also for those who so generously release the lungs of a loved one recently expired. We are so thankful for their unsurpassed generiosity. We do not know where nor whom the donor & family is but we want to always be in thoughtful prayer for them. More later..........Brenda
Sunday, June 20, 2010
Summer Sundae
HAPPY FATHER'S DAY to ALL! Sorry we cannot be there with you cause we know you would all be at the farm celebrating with Grandaddy Lee. Today has been a quiet one...we have heard from our children and each one related their view of the wedding yesterday. Even though it was hot, everyone said it was a lovely affair and the bride was beautiful. We would loved to have seen John, age 11 looking very dapper and handsome in his tux with the pink cumberbund and tie. John is our shorts and barefoot kid on the farm. He even goes barefoot in January if the temperature reaches 50 degrees. We would have enjoyed John in the tux! Look forward to the CD that Julia promises to deliver. We hear that the decor was lovely by Norma, Jennifer's friend and that Julia's girls, Julia and Greg played an impressive ensamble on the cello, violin, flute and piano. I'm sure Laura was a beautiful bridesmaid and that the mother of the groom looked far too young and beautiful to have a son old enough to marry.
We are now trying to grow accustomed to being on call and playing the waiting game. I spent most of the morning making lists and placing items together in a ready position..........I suppose I could liken this to getting ready for the baby to come! Like most new expectant parents I, too will probably forget everthing I have so organizingly packed and forget the most important things in my haste to depart!
More and more, Lee and are I aware of the urgency of this procedure. He has began to cough more and @ times is experiencing some irregularities of his heart. We are grateful for all his good times, his increasing strength and endurance,. but we are always aware that we must be cautious and not push beyond his limit.
Since today is Father's day, Lee's treat will be an outing to Ben & Jerris for a special ice cream (sugar free) treat and perhaps an afternoon ride to explore our new neighboorhood. We took a short ride yesterday and I found Rite-Aide, Dollar General, and the Mall! Yeaaaaaaaaaa! Now I can add them to the Food Lion, and Whole Foods. Good to be finding our way around.
So now you understand the title of today's Blog. Sundae!...........More later...................Brend
We are now trying to grow accustomed to being on call and playing the waiting game. I spent most of the morning making lists and placing items together in a ready position..........I suppose I could liken this to getting ready for the baby to come! Like most new expectant parents I, too will probably forget everthing I have so organizingly packed and forget the most important things in my haste to depart!
More and more, Lee and are I aware of the urgency of this procedure. He has began to cough more and @ times is experiencing some irregularities of his heart. We are grateful for all his good times, his increasing strength and endurance,. but we are always aware that we must be cautious and not push beyond his limit.
Since today is Father's day, Lee's treat will be an outing to Ben & Jerris for a special ice cream (sugar free) treat and perhaps an afternoon ride to explore our new neighboorhood. We took a short ride yesterday and I found Rite-Aide, Dollar General, and the Mall! Yeaaaaaaaaaa! Now I can add them to the Food Lion, and Whole Foods. Good to be finding our way around.
So now you understand the title of today's Blog. Sundae!...........More later...................Brend
Saturday, June 19, 2010
ON THE LIST
Yesterday we met with the nurse lung coordinator and Lee signed all the necessary papers. They called us again @ 4:30 verifying that he is on the national registry for a lung. Amazing how that changes your daily agenda. For example this morning ( after a relatively good nights sleep for both of us) I find myself making sure everything is in order. All the clothes are neatly placed so they may be retrieved easily, cleaned out that foreboding refrigerator that was looking scarier and scarier. My disposal really had a work-out this a.m. The apartment is more orderly, however when I look at self I find that I am not ready at all! Much to do there!
I don't think I told you that Lee walked 2000 feet yesterday. He now wants to walk in his tennis shoes because he says " I am the only one at the Center for Living wearing crocs!" So, he now has his tennis shoes here, thanks to Dennis & Betsy who just returned from our beach house.
Today is our grandson, Jeffrey's wedding day. It is sad that we cannot be a part of this important day with the family. It is good that our children and our grandchildren realize the importance of Lee's situation right now and to them and to their understanding we are grateful. The mother of the groom, Jennifer said that getting "on the list" was the absolute best wedding gift to her son and his new bride Priscilla. So.....today at 4:00 we will try to get on SCYPE and visualize some of this wonderful day.
Thanks to all of you who are following the Blog....I always feel as though I have had a visit with each of you when I write and share our days and important events with you. Keep the comments coming too.....Lee especially enjoys hearing your thoughts and seeing your encouragement in words. We make hard copies of them all and plan to keep them for later. More later............................................Brenda
I don't think I told you that Lee walked 2000 feet yesterday. He now wants to walk in his tennis shoes because he says " I am the only one at the Center for Living wearing crocs!" So, he now has his tennis shoes here, thanks to Dennis & Betsy who just returned from our beach house.
Today is our grandson, Jeffrey's wedding day. It is sad that we cannot be a part of this important day with the family. It is good that our children and our grandchildren realize the importance of Lee's situation right now and to them and to their understanding we are grateful. The mother of the groom, Jennifer said that getting "on the list" was the absolute best wedding gift to her son and his new bride Priscilla. So.....today at 4:00 we will try to get on SCYPE and visualize some of this wonderful day.
Thanks to all of you who are following the Blog....I always feel as though I have had a visit with each of you when I write and share our days and important events with you. Keep the comments coming too.....Lee especially enjoys hearing your thoughts and seeing your encouragement in words. We make hard copies of them all and plan to keep them for later. More later............................................Brenda
Friday, June 18, 2010
AFTER 3:00 P.,M ON FRIDAY, JUNE 18
After we meet with the nurse-lung coordinator @ 3:00 p.m. today to sign the necessary consent forms............Lee is ON THE LIST!!!! This, of course means that we must be ready for THE CALL @ anytime. Again, I will stress that this could go on for days and weeks. Having said that, we also know that because of the seriousness of his lung condition there is some indication of urgency here. It is exciting to know that Lee is so much further along than either of us expected and at the same time it is now with more apprehension that we approach this new phase of our journey.
My thoughts at the moment are that I am not ready! I have not purchased the necessary supplies needed for the time he is discharged from the hospital. (unfortunately these were discussed on one of the class days we had to miss for a clinic appointment.) I have a running list of things to do in preparation for being away from time to shop, etc..... There are questions looming such as...do I pack and If so what? What are the necessary items I need for the long wait during the surgery. I do remember them sayin at one time that I should bring my computer, cell phone, reading materials and snacks. So I must get busy as soon as we return.
It is difficult to describe my emotions at this moment. How do you convey excitement, jubilation, anxiety, fear and dread in mere words?! Probably in one word Insomnia!
I plan to leave here @ 2:15, pick up Lee at the Center for Living where he is doing his rehab and I must confess when I gave him the news he was very calm but gave me a big smile and thumbs up!
This next phase will be one that will be our biggest challenge and we hope and pray our biggest victory. Keep us in your prayers............more later...................Brenda
My thoughts at the moment are that I am not ready! I have not purchased the necessary supplies needed for the time he is discharged from the hospital. (unfortunately these were discussed on one of the class days we had to miss for a clinic appointment.) I have a running list of things to do in preparation for being away from time to shop, etc..... There are questions looming such as...do I pack and If so what? What are the necessary items I need for the long wait during the surgery. I do remember them sayin at one time that I should bring my computer, cell phone, reading materials and snacks. So I must get busy as soon as we return.
It is difficult to describe my emotions at this moment. How do you convey excitement, jubilation, anxiety, fear and dread in mere words?! Probably in one word Insomnia!
I plan to leave here @ 2:15, pick up Lee at the Center for Living where he is doing his rehab and I must confess when I gave him the news he was very calm but gave me a big smile and thumbs up!
This next phase will be one that will be our biggest challenge and we hope and pray our biggest victory. Keep us in your prayers............more later...................Brenda
Thursday, June 17, 2010
An Outstanding Day!
I asked Lee how he would describe the kind of day he had, and this was his description of his DAY!
1. We received a call from nurse lung coordinator this a.m. and she informed us that Lee's name would be on the list by the end of TODAY OR TOMORROW!
2. Lee was able to complete all four phases of the physical therapy program today!
3. Lee was told by the therapist who is a member of the transplant review committee that the committee was "shocked" that Lee had been able to go home as sick as he was and actually rehabilitate himself. They did not believe it could be done because his lungs were so bad and he was in such a debilitated condition. Needless to say they have been impressed with this 'Herculean" husband of mine.
So.......we are awaiting the phone call to confirm his being ON THE LIST! After that the average wait here @ Duke is around 15 days. It could be one day to 30 days, but We believe it will be as soon as possible. We also know that they may do a heart bypass to one coronary artery along with the transplant and that he will receive one lung (unless something changes that).
We now wonder why we actually thought we would have the time to watch all those movies we brought along and why we were sure we would be bored! We now covet each moment we have to rest or have some respite from the busy days we have.
Stay tuned to the blog for more info to follow as it happens............................................Brenda
1. We received a call from nurse lung coordinator this a.m. and she informed us that Lee's name would be on the list by the end of TODAY OR TOMORROW!
2. Lee was able to complete all four phases of the physical therapy program today!
3. Lee was told by the therapist who is a member of the transplant review committee that the committee was "shocked" that Lee had been able to go home as sick as he was and actually rehabilitate himself. They did not believe it could be done because his lungs were so bad and he was in such a debilitated condition. Needless to say they have been impressed with this 'Herculean" husband of mine.
So.......we are awaiting the phone call to confirm his being ON THE LIST! After that the average wait here @ Duke is around 15 days. It could be one day to 30 days, but We believe it will be as soon as possible. We also know that they may do a heart bypass to one coronary artery along with the transplant and that he will receive one lung (unless something changes that).
We now wonder why we actually thought we would have the time to watch all those movies we brought along and why we were sure we would be bored! We now covet each moment we have to rest or have some respite from the busy days we have.
Stay tuned to the blog for more info to follow as it happens............................................Brenda
Wednesday, June 16, 2010
IPF
Seems we live in a world of acromyms. The one dominating our lives includes three simple letters: IPF. IDIOPATHIC PULMONARY FIBROSIS. This, of course means that it is of undetermined origin. Thought I should clear up what Lee being in "the window" means. My blog yesterday was not accurate. The window means a "period of time". This period of time is crucial in IPF. This time is a period when a decision must be made concerning lung transplant candidacy while the candidate is in very good physical condition and not to wait too long or IPF may quickly get worse and then the candidate will lose the opportunity for a transplant. So..............that is where we are. We still need lots of prayer.
Good news ! For the past three days Lee has been able to walk from our condo to the car without using the rolator. His strength is visible, however his oxygen need is very strong. He continues to need 30 liters to walk and 7-8 liters on resting. Taking a shower is becoming easier and he has more independence with that and his oxygen management.
Today I had lunch with other caregivers whose husbands have either had transplants or are waiting like we are. It was both encouraging and frightening to hear their stories. Lee and I have a very hard mountain to climb , especially Lee. He will have to work very hard and endure a great deal of pain for a very long time. It will be good to see him walk quickly without being tethered to a line of oxygen. I have observed many post lung transplant patients in the center for Living and they look amazingly well. My prayer is that I will be able to see Lee like that in the next 6-8 weeks!
More later..........Brenda
Good news ! For the past three days Lee has been able to walk from our condo to the car without using the rolator. His strength is visible, however his oxygen need is very strong. He continues to need 30 liters to walk and 7-8 liters on resting. Taking a shower is becoming easier and he has more independence with that and his oxygen management.
Today I had lunch with other caregivers whose husbands have either had transplants or are waiting like we are. It was both encouraging and frightening to hear their stories. Lee and I have a very hard mountain to climb , especially Lee. He will have to work very hard and endure a great deal of pain for a very long time. It will be good to see him walk quickly without being tethered to a line of oxygen. I have observed many post lung transplant patients in the center for Living and they look amazingly well. My prayer is that I will be able to see Lee like that in the next 6-8 weeks!
More later..........Brenda
Tuesday, June 15, 2010
Meeting the surgeon
Tuesdays are very important days. That is when the lung transplant team ( representatives from all areas concerned with lung transplant candidates have their weekly meeting). We always anticipate some news that afternoon or onWednesday.
I dropped Lee off @ 12:15 @ the Center for Living rehab for his usual afternoon of walking, weights, biking stairstepping and a class @ 3:40. I returned to the condo and immediately had a call advising me to have Lee @ Clinic to see one of the lung transplant surgeon. I inquired as to when and was told NOW. So having learned that things can happen quickly here, I left to retrieve Lee and go to the clinic.
We met with one surgeon who explained all the risks involved with this procedure and allowed us to ask any questions and express any concerns we had about the operation and the recovery period. He asked many questions about any relatives who may have had pulmonary fibrosis as they now know it tends to run in families. We also learned that it is a condition that can suddenly appear or be very gradual over a period of years. There are no answers as to what causes pulmonary fibrosis. One can be genetically inclined and something can trigger the process, which would explain Lee's reaction to something he has insisted he inhaled.
The main surgeon came in after this surgeon and one could tell immediately that he was the "Man In Charge"! He looked rather unassuming until he spoke and we were in awe at the way he explained many issues to us. One thing he said was that we had to establish trust because he wanted us to know that the team had a responsibility to give Lee a better choice of life and that they also had a responsibility to ensure that the donor of the lung was used for a recipient who would not abuse it and would strive to take care of himself. He also said they had a responsibility to the person that may have lost their place for the same lung and for their reasons for selecting Lee, if that be the case. He explained that everything that will be done during surgery and the recovery period would be in the best interest of all.
Now to the conclusion: Lee's MRI last Friday showed a blockage of one of the tributaries of the LAD or left anterior descending artery of the heart. This is of concern to them. They also found that Lee had over the years had small silent heart attacks. ( several was the term used ). So, as of today we know that the cardiac surgeons will meet with the lung team and everyone will determine what to do that will be in the best interest for Lee to have a lung transplant.
We do know that he is now in the "window", which means he has a really good chance of being on the list in the near future.
As we get closer to final decisions, I tend to get more apprehensive and Lee is super CALM!.. Actually I'm doing o.k. and We will both be fine. Thanks to all of ;you for the support we know we have! More later.......Brenda
I dropped Lee off @ 12:15 @ the Center for Living rehab for his usual afternoon of walking, weights, biking stairstepping and a class @ 3:40. I returned to the condo and immediately had a call advising me to have Lee @ Clinic to see one of the lung transplant surgeon. I inquired as to when and was told NOW. So having learned that things can happen quickly here, I left to retrieve Lee and go to the clinic.
We met with one surgeon who explained all the risks involved with this procedure and allowed us to ask any questions and express any concerns we had about the operation and the recovery period. He asked many questions about any relatives who may have had pulmonary fibrosis as they now know it tends to run in families. We also learned that it is a condition that can suddenly appear or be very gradual over a period of years. There are no answers as to what causes pulmonary fibrosis. One can be genetically inclined and something can trigger the process, which would explain Lee's reaction to something he has insisted he inhaled.
The main surgeon came in after this surgeon and one could tell immediately that he was the "Man In Charge"! He looked rather unassuming until he spoke and we were in awe at the way he explained many issues to us. One thing he said was that we had to establish trust because he wanted us to know that the team had a responsibility to give Lee a better choice of life and that they also had a responsibility to ensure that the donor of the lung was used for a recipient who would not abuse it and would strive to take care of himself. He also said they had a responsibility to the person that may have lost their place for the same lung and for their reasons for selecting Lee, if that be the case. He explained that everything that will be done during surgery and the recovery period would be in the best interest of all.
Now to the conclusion: Lee's MRI last Friday showed a blockage of one of the tributaries of the LAD or left anterior descending artery of the heart. This is of concern to them. They also found that Lee had over the years had small silent heart attacks. ( several was the term used ). So, as of today we know that the cardiac surgeons will meet with the lung team and everyone will determine what to do that will be in the best interest for Lee to have a lung transplant.
We do know that he is now in the "window", which means he has a really good chance of being on the list in the near future.
As we get closer to final decisions, I tend to get more apprehensive and Lee is super CALM!.. Actually I'm doing o.k. and We will both be fine. Thanks to all of ;you for the support we know we have! More later.......Brenda
Monday, June 14, 2010
ANOTHER TEST DAY
We just returned from the clinic where Lee had an esophageal manomotry done. He now has a small catheter from his nose to his esophagus close to his stomach. This is connected to a meter that is strapped to his waist. We must keep a diary for the next 24 hours in regards to eating, lying down and getting up. We must report any discomfort or change during that time. We will return to the clinic @ 8:30 in the a.m. for removal of the catheter. Right now he is resting comfortably in his recliner and just finished a bowl of oatmeal. He was a little hungry having been NPO since midnight.
Week-end was filled with some of our family. Todd, Donna and boys came Saturday morning and left Sunday morning. They were able to get an apartment here for a night. The boys enjoyed the pool in the afternoon and after supper they loved playing in the couryard with the shuffleboard and the giant checkers. ( and you thought shuffleboard was only for old people!) Donna and I went to WallyWorld (Wal-mart) and I was able to get some more supplies needed here.
On Sunday we enjoyed the CD from First Baptist in Lincolnton and were able to see so many of our friends there. The music was beautiful. As close as we can get to being home on Sundays. Later that evening my neice, Genice and husband Roger Nix came over with a steak (filet mignon) supper with all the trimmings from Outback.......and she made a pecan pie. We were all so stuffed that the pie is waiting for another time. We had such a good visit in spite of the rain and storm that they had to drive through from Raleigh.
Today Roger is @ Best Buy in Raleigh purchasing a printer for us. We have discovered that all the schedules etc. are sent by e-mail and we are expected to bring printed copies with us for appointments. So far my handwritten schedules look pretty archaic. I guess you could say we have had to move into this 21st century, like it or not.
This should be the last of testing and the psychologist meeting this afternoon @ 1:30 will wrap things up in time for the lung transplant meeting in the morning. We should have something to report by tomorrow evening or Wednesday. Thanks to all of you for your comments and keep those prayers coming! Brenda
Week-end was filled with some of our family. Todd, Donna and boys came Saturday morning and left Sunday morning. They were able to get an apartment here for a night. The boys enjoyed the pool in the afternoon and after supper they loved playing in the couryard with the shuffleboard and the giant checkers. ( and you thought shuffleboard was only for old people!) Donna and I went to WallyWorld (Wal-mart) and I was able to get some more supplies needed here.
On Sunday we enjoyed the CD from First Baptist in Lincolnton and were able to see so many of our friends there. The music was beautiful. As close as we can get to being home on Sundays. Later that evening my neice, Genice and husband Roger Nix came over with a steak (filet mignon) supper with all the trimmings from Outback.......and she made a pecan pie. We were all so stuffed that the pie is waiting for another time. We had such a good visit in spite of the rain and storm that they had to drive through from Raleigh.
Today Roger is @ Best Buy in Raleigh purchasing a printer for us. We have discovered that all the schedules etc. are sent by e-mail and we are expected to bring printed copies with us for appointments. So far my handwritten schedules look pretty archaic. I guess you could say we have had to move into this 21st century, like it or not.
This should be the last of testing and the psychologist meeting this afternoon @ 1:30 will wrap things up in time for the lung transplant meeting in the morning. We should have something to report by tomorrow evening or Wednesday. Thanks to all of you for your comments and keep those prayers coming! Brenda
Friday, June 11, 2010
TGIF! We are looking forward to resting and visiting this week-end. It will be good not to have to go to Clinic or hospital for tests and a good reprieve for Lee from the hard work at the Center for Living rehab. We are already booked throughout the day for Monday and most of Tuesday for more studies to be done. So far Lee has tolerated all the tests and the trips to and from the areas very well. I did insist, against his wishes that we use the wheelchair. Seem that I, not Lee get very anxious if the oxygen supply drops below a certain level. I have learned almost exactly how much it takes to get him to and from the clinic, the Center for Living and the hospital and back to the condo again. The wheelchair reduces the amount he needs and helps me to relax and not fret so!
We do not know for sure but we do believe that by next Wednesday we will either be told that his name is on the list or what else needs to be done with an estimate of how much longer it will be. Everyone seems to be trying to get a lot finished before the decision meeting that will take place on Tuesday, June 15.
We have met many new friends here and we all share common stories in regards to lung conditions. Most of the wives gather in a common area when dropping off husbands or picking up. The ladies have formed a support group and meet for lunch each Wednesday @ 1:00 and then return for the 3:30 mandatory meeting for caregivers. They have invited me to join them and I am looking forward to the lunch next Wednesday. Hope all of you have a wonderful week-end and I look forward to your comments. More later..Brenda
We do not know for sure but we do believe that by next Wednesday we will either be told that his name is on the list or what else needs to be done with an estimate of how much longer it will be. Everyone seems to be trying to get a lot finished before the decision meeting that will take place on Tuesday, June 15.
We have met many new friends here and we all share common stories in regards to lung conditions. Most of the wives gather in a common area when dropping off husbands or picking up. The ladies have formed a support group and meet for lunch each Wednesday @ 1:00 and then return for the 3:30 mandatory meeting for caregivers. They have invited me to join them and I am looking forward to the lunch next Wednesday. Hope all of you have a wonderful week-end and I look forward to your comments. More later..Brenda
Thursday, June 10, 2010
Clinic Days
Another busy, busy day for Lee! At 9:00 we had an appointment with the social worker who determines who will be the primary and the secondary caregivers for Lee. After that was established, we headed back to the condo for lunch and prepare to go back to the clinic @ 12:00. All afternoon was spent with Lee having an MRI of the heart (to determine the condition of the 13 year old stents) and to view a small blockage that was there in March. After that he had a stress test and a thalllium stress test followed by an EKG. Once the team decides you are a possible candidate, things begin to happen and move quickly. Tomorrow morning we will be going to the hospital @ 8:00 for Lee to have a barium swallow. This is important because any reflux of stomach contents could end up in the new lungs and of course that would be a big problem. Monday morning he is scheduled @ the clinic for another swallowing test. That is all we know right now. It will probably be next Wednesday before we have anything to report from the above.
On a bright note: Todd, Donna, Chase and Carson will be coming on Saturday for a visit. We are looking forward to seeing them. We would love to see everyone and in due time will again I'm sure. Another bright note....We finally received our mail! We now have newspapers and magazines to read and bills to be paid! Now it does seem more like home.
Last night Lee and I were so exhausted from a busy day at the clinic, more rehab for Lee and class for both of us from 3:30 to 4:30 that I opted to go to Whole foods for grilled salmon for supper. It was very good! We were both in the bed by 8:30 and slept 9 straight hours. We did not have rehab today, the clinic sent in our absentee excuse so a couple hours to go over mail etc. was welcomed. More Later.....Brenda
On a bright note: Todd, Donna, Chase and Carson will be coming on Saturday for a visit. We are looking forward to seeing them. We would love to see everyone and in due time will again I'm sure. Another bright note....We finally received our mail! We now have newspapers and magazines to read and bills to be paid! Now it does seem more like home.
Last night Lee and I were so exhausted from a busy day at the clinic, more rehab for Lee and class for both of us from 3:30 to 4:30 that I opted to go to Whole foods for grilled salmon for supper. It was very good! We were both in the bed by 8:30 and slept 9 straight hours. We did not have rehab today, the clinic sent in our absentee excuse so a couple hours to go over mail etc. was welcomed. More Later.....Brenda
Wednesday, June 9, 2010
ONE HOT TOPIC!
We left @ 7:30 this morning for Lee's appointment @ the lung transplant clinic. We had been advised by the rehab person to walk in...........good that we did not know how FAR Lee would have to walk.....after a loooooooong walk from the lobby to the elevator and a looooooooogeeeeer walk to the clinic Lee definitely made the 1000 foot walk! He did have to stop and rest because his O2 dropped into the low 80 Anyway, the important thing is he made it! He never ceases to amaze me @ his physical endurance. After the preliminaries, we were visited by one of the lung transplant nurse coordinators who promptly told Lee that he was the "hot" topic @ the lung transplant meeting on Tuesday! It seems that as they compared him to the condition he was in when he was discharged from Duke to what he has been able to do now, everyone is in awe!
So......After meeting with the lung doctor who is also the medical director of the clinic Lee was told that there were a few more things to check before putting him on the LIST. Some of these were done this a.m. Blooc work, Chest x-ray. Tomorrow @ 1:00 pm he will have an MRI and he may have a repeat Cardiac Cath later this week. The doctor wants all the tests completed by the end of this week. At that point it will be determined whether to put his name on the list or if more work needs to be done.
We were also told that he would be a candidate for one lung, not two. This is based on his age and his preexisting condition of pulmonary fibrosis.
Things seem to be moving very fast and we are excited and encouraged. More Later....Brenda
So......After meeting with the lung doctor who is also the medical director of the clinic Lee was told that there were a few more things to check before putting him on the LIST. Some of these were done this a.m. Blooc work, Chest x-ray. Tomorrow @ 1:00 pm he will have an MRI and he may have a repeat Cardiac Cath later this week. The doctor wants all the tests completed by the end of this week. At that point it will be determined whether to put his name on the list or if more work needs to be done.
We were also told that he would be a candidate for one lung, not two. This is based on his age and his preexisting condition of pulmonary fibrosis.
Things seem to be moving very fast and we are excited and encouraged. More Later....Brenda
Tuesday, June 8, 2010
Moving on Up!
Dropped Lee off @ rehab and when I returned to condo I got a call from the lung transplant nurse. Lee's case was presented to the lung transplant team this a.m. and they were so impressed with his progress that he is scheduled to see the lung transplant surgeon tomorrow morning @ 8:00. They feel that he has progressed to the point to be moved forward toward his goal of being listed as a recipient!!!! We are to be prepared for him to have some lab tests and chest x-ray done. This is very exciting and we will know more after tomorrow. Lee has worked very hard and it looks like it is really paying off! Thanks to all of you for helping make this possible for Lee.....For all those walks through the house, for accompanying us on short trips and most of all for visiting and letting Lee know what a HUGE support team he has. Even though you cannot be with us personally right now, keep us in your thoughts and prayers as we know you will.
More Later.....................Brenda
More Later.....................Brenda
Monday, June 7, 2010
Fast Forward Again!
Today was another good day for Lee! I left him @ the Boot Camp @ 12:00 and he was to be picked up again @ 4:30 p.m. I called him @ 3:30 to see how things were going and he was getting ready for his 3:40-4:30 class on Anatomy & Physiology of the lungs. When I asked how he was doing he responded with a strong GREAT! When I returned to get him the in-charge person talked to me and wanted me to know that one of the rehab doctors (who used to train doctors on the current transplant team) had spent some time with Lee and because he was so impressed with how far Lee had progressed since leavining Duke in March and after observing how hard he is working now has determined that Lee should be reviewed by the transplant team tomorrow! This is a big plus for Lee! We are very excited and hopefully this may even move him along a little faster........we will certainly keep you all posted. SO, let's all give Lee another BIG HAPPY Buck today!
It is amazing how I can already see his strength returning. For example, here in the apartment he does not use the rolator.....he is able to move from room to room and to the bathroom pushing his portable 02.
Thank to all of you for your continuing prayers. We are very greedy and can't get too many. We know that we are able to feel all the love that has been expressed to us by all of you. Know that you are in our prayers also and to all of you we are deeply indebted. We want you to know how much we miss you, but are really doing better than anticipated. Other that the first week here ( I was homesick), we are fine.
More tomorrow. Brenda
It is amazing how I can already see his strength returning. For example, here in the apartment he does not use the rolator.....he is able to move from room to room and to the bathroom pushing his portable 02.
Thank to all of you for your continuing prayers. We are very greedy and can't get too many. We know that we are able to feel all the love that has been expressed to us by all of you. Know that you are in our prayers also and to all of you we are deeply indebted. We want you to know how much we miss you, but are really doing better than anticipated. Other that the first week here ( I was homesick), we are fine.
More tomorrow. Brenda
Sunday, June 6, 2010
Day of Rest
Actually this has been a week-end of rest. We were concerned that we would be bored here and are amazed how how fast the time goes. After the morning of breakfast, medicines, personal care and walking exercises for Lee. It is NOON! After a small lunch, walking again. Fortunately we do have a lovely courtyard with lots of shaded sidewalks with not too many turns. Our best walk is late in the evening when it is a bit cooler. We are looking forward to the anticipated drop in temp next week.
Thought this might be a good time to share some of the descriptions of our new abode. Space is limited but it also has advanatages. For instance, I can stand in the middleof the kitchen and without moving my feet I have immediate access to the microwave, the dishwasher, the refrigerator, the stove, the kitchen sink and all my cabinet space! All I have to do is turn my upper body in either direction and there I can have anything! Another big advantage is that the one bathroom is located directly across from the kitchen and allows for no distractions from cooking, etc. I can apply my make-up and cook a pot of spagetti at the same time! Now I have to ask how many of you have that added convenience!? I will only leave it to your imagination as to the many other success I or Lee may have because of the limitied space!
Another added convenience is that I can sit on the bed and iron. Now that is comfort......a little tight, but if I tire I only need to lie down and rest for a while.....maybe even nap.
Seriously, Lee and I are very happy with Duke Tower. We have the lovely courtyard, good walking area. two flat-screen t.v's and all our needs are being met. We have free shuttle service serveral times a day or whenever we need it. That is truly a gift.
Our plans for this afternoon will be to watch a movie. MY Turn! So far we have watched all the golf, baseball, softball channels and all the baseba!l chanels. I have selected a good love story. This will guarantee a long nap for Lee!
More tomorrow from Boot Camp. Brenda
Thought this might be a good time to share some of the descriptions of our new abode. Space is limited but it also has advanatages. For instance, I can stand in the middleof the kitchen and without moving my feet I have immediate access to the microwave, the dishwasher, the refrigerator, the stove, the kitchen sink and all my cabinet space! All I have to do is turn my upper body in either direction and there I can have anything! Another big advantage is that the one bathroom is located directly across from the kitchen and allows for no distractions from cooking, etc. I can apply my make-up and cook a pot of spagetti at the same time! Now I have to ask how many of you have that added convenience!? I will only leave it to your imagination as to the many other success I or Lee may have because of the limitied space!
Another added convenience is that I can sit on the bed and iron. Now that is comfort......a little tight, but if I tire I only need to lie down and rest for a while.....maybe even nap.
Seriously, Lee and I are very happy with Duke Tower. We have the lovely courtyard, good walking area. two flat-screen t.v's and all our needs are being met. We have free shuttle service serveral times a day or whenever we need it. That is truly a gift.
Our plans for this afternoon will be to watch a movie. MY Turn! So far we have watched all the golf, baseball, softball channels and all the baseba!l chanels. I have selected a good love story. This will guarantee a long nap for Lee!
More tomorrow from Boot Camp. Brenda
Friday, June 4, 2010
Day three of Boot Camp for Lee
Well! Lee has made it through his first week of "boot camp" rehab at Duke's Center for Living. I promises to be quite a challenge for both of us, but most of all for Lee. Here is a typical day Monday -Friday:
Mon. 11:30 Class for Lee, 12:00 Lee eats his packed lunch, 12:30-3:3-rehab and 3:40-4;30 class.
Every Wednesday I join him for classes @ 11:30and again @ 3:40.
Lee has to take responsibility for getting out of the car and walking into the building mostly by himself. I follow along beside. My responsibility each day is to get him there with his oxygen and then go inside and prepare his tanks and supplies and take them to him. In the afternoon, I go in to get him and follow him to the car. A lot of teamwork! He is exhausted when we get back to the condo and usually has a long nap. We were actually wondering what we would do with our time here......too busy to even think!
Yesterday was an interesting day and I was able to observe the clients who are hoping to get new lungs. There were approx 15 people there...mostly men, but I did count 4-5 women. It seems that most of them were suffering from COPD , a pulmonary disorder that usually is the result of smoking, but can be damage from pneumonia and asthms, and allergies. I only saw one person under the age of 50 or 60, a young man who looked to be 16-20.....I would suspect he had cystic fibrosis..just guessing. Compared to everyone else Lee looked good...good color and breathing quietly. He did, however, require more oxygen than anyone else I observed. It would be so good if any young person thinking about smoking could walk through this center. Air hunger is a terrible thing and those who experience it could liken it to drowning.
Sitting in that room, I was conscious of how fortunate all of us are when we have healthy lungs. As I sat there, I was aware of coughing (spasmodic type) from so many and you could hear breathing from all areas of the room. Lee does not cough like that and he does breathe quietly.There have been some times when he is short on oxygen that he will have some coughing, but recovers rapidly.
On a happy note, Lee was able to do all the required sessions today with no problems. I guess he deserves a big HAPPY B UCKI!
Tomorrow is Saturday so I may not post unless something unusual happens. I plan to sit by the pool and Lee will walk around the pool. We will rest a bit to prepare for the next big week. Brenda
Mon. 11:30 Class for Lee, 12:00 Lee eats his packed lunch, 12:30-3:3-rehab and 3:40-4;30 class.
Every Wednesday I join him for classes @ 11:30and again @ 3:40.
Lee has to take responsibility for getting out of the car and walking into the building mostly by himself. I follow along beside. My responsibility each day is to get him there with his oxygen and then go inside and prepare his tanks and supplies and take them to him. In the afternoon, I go in to get him and follow him to the car. A lot of teamwork! He is exhausted when we get back to the condo and usually has a long nap. We were actually wondering what we would do with our time here......too busy to even think!
Yesterday was an interesting day and I was able to observe the clients who are hoping to get new lungs. There were approx 15 people there...mostly men, but I did count 4-5 women. It seems that most of them were suffering from COPD , a pulmonary disorder that usually is the result of smoking, but can be damage from pneumonia and asthms, and allergies. I only saw one person under the age of 50 or 60, a young man who looked to be 16-20.....I would suspect he had cystic fibrosis..just guessing. Compared to everyone else Lee looked good...good color and breathing quietly. He did, however, require more oxygen than anyone else I observed. It would be so good if any young person thinking about smoking could walk through this center. Air hunger is a terrible thing and those who experience it could liken it to drowning.
Sitting in that room, I was conscious of how fortunate all of us are when we have healthy lungs. As I sat there, I was aware of coughing (spasmodic type) from so many and you could hear breathing from all areas of the room. Lee does not cough like that and he does breathe quietly.There have been some times when he is short on oxygen that he will have some coughing, but recovers rapidly.
On a happy note, Lee was able to do all the required sessions today with no problems. I guess he deserves a big HAPPY B UCKI!
Tomorrow is Saturday so I may not post unless something unusual happens. I plan to sit by the pool and Lee will walk around the pool. We will rest a bit to prepare for the next big week. Brenda
Thursday, June 3, 2010
First day of class @ Center for Living
Today was a very long and tiring day for both of us. We began class @ 11:15 and ended @2:00. we ate a packed lunch in the classroom because Lee's rehab sessions were to begin @ 2:15. I came back to the condo to get my car because the shuttle service was busy bringing folks in for a wedding this week-end. Promises to be busy and noisy around the pool! Unfortunately, the day was a little much for Lee and they decided to end his session earlier than planned. We were not able to attend the afternoon class since they advised that Lee come back to the condo to rest.. Seems that he just kept running out of O2 and his heart was racing. The doctor was called and they ran an EKG . He was better after resting for 30 min. but still not allowed to continue. Hopefully he will do better as we progress. Right now he is napping and appears to be fine. I think sitting in class in an uncomfortable straight chair and then up to walk was too hard on his system.
We now know the minimum requirements for Lee's name to be on the transplant list:
1. Walk 1000 ft in 6 min.(no stops in betweeen)
2. 20 minutewalk (1/2 mile no rest stops)
3 .Must meet all rehab sessions as scheduled
All goals must be met to be a candidate
We will keep you posted on his progress. Lee has a lot of work to do, keep him in your prayers.
We now know the minimum requirements for Lee's name to be on the transplant list:
1. Walk 1000 ft in 6 min.(no stops in betweeen)
2. 20 minutewalk (1/2 mile no rest stops)
3 .Must meet all rehab sessions as scheduled
All goals must be met to be a candidate
We will keep you posted on his progress. Lee has a lot of work to do, keep him in your prayers.
Wednesday, June 2, 2010
Update on Lee
We are finally settled in @ Duke Tower Condos...not affiliated with Duke Hosp. To see our new home check out http://www.duketower.com/ and take a virtual tour of the premium condo. We are close to the pool and the courtyard is quite lovely with flowers and places to sit outside under the trees. At night the trees are bright with little sparkling lights. We have 24/7 free shuttle service and maid service once weekly.
Good news! Today Lee began his first rehab session which was an evaluation to determine how long he would need to stay in the six week program. After working him for an hour an half, it was determined that he was strong enough to move to the next level. He had moved ahead six weeks in one hour! Tomorrow he will be entering the next phase which is rehab four hours a day, five days a week. He will be asked to work very hard, but he will be given adequate oxygen and will be monitored closely. We are very excited about this. We will both be attending educational sessions each week. Lee will go every day for an hour and I will be attending sessions each Wednesday and a couple other days. We will be very busy and probably very tired!
I will not be able to stay with Lee during the rehab and this will free me to do some other things ( like maybe enjoy the pool and shop!)
Please continue to keep us in your prayers. We are confident now that we will be closer to Lee getting new lungs.
Good news! Today Lee began his first rehab session which was an evaluation to determine how long he would need to stay in the six week program. After working him for an hour an half, it was determined that he was strong enough to move to the next level. He had moved ahead six weeks in one hour! Tomorrow he will be entering the next phase which is rehab four hours a day, five days a week. He will be asked to work very hard, but he will be given adequate oxygen and will be monitored closely. We are very excited about this. We will both be attending educational sessions each week. Lee will go every day for an hour and I will be attending sessions each Wednesday and a couple other days. We will be very busy and probably very tired!
I will not be able to stay with Lee during the rehab and this will free me to do some other things ( like maybe enjoy the pool and shop!)
Please continue to keep us in your prayers. We are confident now that we will be closer to Lee getting new lungs.
Subscribe to:
Comments (Atom)