After I had posted the blog, I looked out the window to see Lee walking down the driveway to get the paper. Our dog, Bella, was walking along beside him.
I want to share this with you because from the time Lee became ill, my prayer was that I would once again be able to see my husband walk to the mailbox, free from oxygen, and with renewed strength. He has been able to do this most every day since we returned home last November.
My prayer was answered. Thanks be to God!
More Later..................................................Brenda
Thursday, September 29, 2011
Autumn @ Home
As I gaze out my window, the signs of autumn surround me. Some of the trees have shed most of their leaves and others are beginning to turn the golden color. The maple trees are so wonderful in their contribution to the canvas of color. It is so good to be home this time of the year. Earlier this his morning, the air was fresh at 58 degrees, now, the sun is up, and everywhere I look there is a sense of the beauty of this earth. What a blessing to find so much beauty to lift us up when we have the bumps in the road.
Lee is doing better each day. I would liken the recovery from the RATG treatment as to recovering from the flu. It did sap his energy, and he is having to work to get back the strength he had before the treatment. He has not returned to his rehab sessions this week which is, probably just as well because of the lowered immune system right now. He will return next week if all goes well.
Lee continues to have a high potassium blood count and we have tried diligently over this past year to adjust his meals around a potassium free or a low potassium diet. That is very hard to do, but we have managed. He has had almost no tomatoes, potatoes, dark green veggies, many fruits ( particularly citrus), dried beans and peas, and the list goes on to include good things like melons. I talked to the doctor about this and he did concede that it is caused by his medication for rejection. He said to allow some of these foods, space them apart and to watch the proportions.
As you can see, each day is a challenge. Lee's status can change in a 24 hour period. We are grateful for each good day he has and we try hard to be alert to any changes that will created a problem. It is so good to know that Duke is immediately available via phone and only 3 hours drive. It is comforting and reassuring to know that whatever the problem, they will aggresively try to resolve the situation.
I have been in touch with many of our transplant aquaintances via e-mail. It is good to have the support group that we met while in Durham. Having these conversations helps us to be prepared for any changes that may occur and how the problems are being resolved. There are times when we don't get good news, but sad news, and that of course, makes us face the reality we face on a daily basis.
Good to be back with you bloggers.......thanks for being there to listen and for allowing me to unload some of my concerns.......
More Later........................................Brenda
Lee is doing better each day. I would liken the recovery from the RATG treatment as to recovering from the flu. It did sap his energy, and he is having to work to get back the strength he had before the treatment. He has not returned to his rehab sessions this week which is, probably just as well because of the lowered immune system right now. He will return next week if all goes well.
Lee continues to have a high potassium blood count and we have tried diligently over this past year to adjust his meals around a potassium free or a low potassium diet. That is very hard to do, but we have managed. He has had almost no tomatoes, potatoes, dark green veggies, many fruits ( particularly citrus), dried beans and peas, and the list goes on to include good things like melons. I talked to the doctor about this and he did concede that it is caused by his medication for rejection. He said to allow some of these foods, space them apart and to watch the proportions.
As you can see, each day is a challenge. Lee's status can change in a 24 hour period. We are grateful for each good day he has and we try hard to be alert to any changes that will created a problem. It is so good to know that Duke is immediately available via phone and only 3 hours drive. It is comforting and reassuring to know that whatever the problem, they will aggresively try to resolve the situation.
I have been in touch with many of our transplant aquaintances via e-mail. It is good to have the support group that we met while in Durham. Having these conversations helps us to be prepared for any changes that may occur and how the problems are being resolved. There are times when we don't get good news, but sad news, and that of course, makes us face the reality we face on a daily basis.
Good to be back with you bloggers.......thanks for being there to listen and for allowing me to unload some of my concerns.......
More Later........................................Brenda
Tuesday, September 27, 2011
Stomach bug or food?
I did not write yesterday because both Lee and I have been trying to get over a peculiar "belly ache". We were both stricken at the same time late Sunday afternoon with nausea. With the help of Lee's nausea medication for him, and dramamine for me, we have slowly begun to feel better. We have narrowed it down to one of two things: Same food we both ate on Sunday, or we came in contact with a bug at approximately. the same time. I have recovered quickly, but Lee's still lingers somewhat. I believe this is due in part to his lowered immune response.
Today has been a better day for both of us. Lee was able to drive by himself to the doctor's office for the routine lab work and the drive-through for his Bojangles biscuit. He also went through the drive-through at the Drug Store for a pick-up of my prescription. It is good to be doing the normal routines again. We really do appreciate the "normal" days now when we can have them. I would suggest to all of you bloggers to just stop and realize how important your normal ( sometimes called, mundane or boring) days are. Now that we have many of the surprising and not so normal days, we look forward to those we once simply brushed aside.
I once read and have never forgotten this statement: "You never know the worth of a man, until he is gone."
I suppose we never know the worth of our days, our time, our lives and all it encompasses, until it is gone. I suppose I could go on with, "you cannot appreciate the full cup, until it is empty", or unto each life a little rain must fall, .................................................O.K.....enough!
More Later.................................Brenda
Today has been a better day for both of us. Lee was able to drive by himself to the doctor's office for the routine lab work and the drive-through for his Bojangles biscuit. He also went through the drive-through at the Drug Store for a pick-up of my prescription. It is good to be doing the normal routines again. We really do appreciate the "normal" days now when we can have them. I would suggest to all of you bloggers to just stop and realize how important your normal ( sometimes called, mundane or boring) days are. Now that we have many of the surprising and not so normal days, we look forward to those we once simply brushed aside.
I once read and have never forgotten this statement: "You never know the worth of a man, until he is gone."
I suppose we never know the worth of our days, our time, our lives and all it encompasses, until it is gone. I suppose I could go on with, "you cannot appreciate the full cup, until it is empty", or unto each life a little rain must fall, .................................................O.K.....enough!
More Later.................................Brenda
Sunday, September 25, 2011
In Charge Man
Yesterday was amazing! We have now learned how to get discharged from Duke in a timely manner. Lee began his day at Duke Hospital and as soon as he was visited by the nurse, the PA, and the pulmonary doctor, he began making them all aware of his goal to be out of the hospital no later than 3:30 p.m. Next, he asked the nurse if she would try to begin the four-hour I.V. by 11:00 a.m. She said that could be done. He then approached the PA and asked if she could have all his discharge papers and medications completed by 3:00 p.m. She said she could do that. After getting the official discharge from the doctor, everyone worked very hard to meet Lee's request. He had taken control and was the man in charge of his departure!
Based on past experiences, we now know that efficiency works if everyone knows the plan. When no one realizes the plan, then hours may be sacrificed. Lee remembered the time Labor Day week-end 2010 (our first trip home since May31 ) and how it took three hours to get out of the hospital after the doctor wrote the official discharge! One of the longest and most exasperating waits was for the transport person. What we did not know then, and know now, is that whenever you are discharged from Duke, your name is sent to the transport service and they will only come get you on a "first come, first serve" basis. If your name is at the bottom of the list............long wait!
So, in view of this, I decided to find our own wheelchair for Lee. This is not an easy find @ Duke as all the wheel chairs belong to the transport dept. I walked along all the adjacent hallways and was about to give up when I finally found one lurking around a corner, in front of another patient room. It was empty, and as I stood there for a few minutes, I felt sure that it was not being used. I cautiously approached the w/chair and took it to Lee's room. When I told him how I got it, he accused me of stealing someone's w/chair and told me to go get approval from the desk person. Feeling like a guilty child, I did, and it was then ours. We would not have to rely on the transport person.
The last I.V medication finished at 3:00 pm.. The designated picc-line person ( per Lee's request also ) came and pulled the picc line. Lee dressed quickly, I put him in the wheel chair, and we were out the door to valet service for our car promptly @ 3:30 p.m.
We had a good trip home, maybe a few minutes longer than if Lee had driven, but I do not ride with a driver who has slurred speech! The benadryl was still in his system! After a stop for food for supper, we arrived home around 7:00 p.m. All is well.............................
More Later..............................................Brenda
Based on past experiences, we now know that efficiency works if everyone knows the plan. When no one realizes the plan, then hours may be sacrificed. Lee remembered the time Labor Day week-end 2010 (our first trip home since May31 ) and how it took three hours to get out of the hospital after the doctor wrote the official discharge! One of the longest and most exasperating waits was for the transport person. What we did not know then, and know now, is that whenever you are discharged from Duke, your name is sent to the transport service and they will only come get you on a "first come, first serve" basis. If your name is at the bottom of the list............long wait!
So, in view of this, I decided to find our own wheelchair for Lee. This is not an easy find @ Duke as all the wheel chairs belong to the transport dept. I walked along all the adjacent hallways and was about to give up when I finally found one lurking around a corner, in front of another patient room. It was empty, and as I stood there for a few minutes, I felt sure that it was not being used. I cautiously approached the w/chair and took it to Lee's room. When I told him how I got it, he accused me of stealing someone's w/chair and told me to go get approval from the desk person. Feeling like a guilty child, I did, and it was then ours. We would not have to rely on the transport person.
The last I.V medication finished at 3:00 pm.. The designated picc-line person ( per Lee's request also ) came and pulled the picc line. Lee dressed quickly, I put him in the wheel chair, and we were out the door to valet service for our car promptly @ 3:30 p.m.
We had a good trip home, maybe a few minutes longer than if Lee had driven, but I do not ride with a driver who has slurred speech! The benadryl was still in his system! After a stop for food for supper, we arrived home around 7:00 p.m. All is well.............................
More Later..............................................Brenda
Friday, September 23, 2011
Great Day!
Lee has had a great day! The treatment is visably working....he is stronger, looks so good, color is good and the cough is already gone. Rejection is incidious.....it creeps on ....and there are barely noticeable symptoms. I can see now that with this immediate improvement that the rejection was making him very tired and was responsible for the cough. I believe it probably started around the first week of July because that is when he started to cough and he just could not develop any strength.
It is such a relief to see him feeling better. He has been doing laps around the hosptal corridor like a pro-runner. (compared to this time last year). The doctor said that he could be discharged from the hospital as soon as he finished his third treatment tomorrow. That will be completed by 3:00, but it has been our experience that it takes a long time to actually get out of the hospital! So...............if it is late, we will spend Sat. night here and go home early Sunday a.m.
All in all..............this has been a Great Day!
More Later...............................Brenda
It is such a relief to see him feeling better. He has been doing laps around the hosptal corridor like a pro-runner. (compared to this time last year). The doctor said that he could be discharged from the hospital as soon as he finished his third treatment tomorrow. That will be completed by 3:00, but it has been our experience that it takes a long time to actually get out of the hospital! So...............if it is late, we will spend Sat. night here and go home early Sunday a.m.
All in all..............this has been a Great Day!
More Later...............................Brenda
addendum to yesterday's blog
A better morning for me and for Lee. I am still at the condo because the 2nd treatment will not begin until after 12:00. I prefer to be with him during the treatment so I can observe for any possible adverse reaction and call for help if needed. I talked with Lee this a.m. and he said he was feeling great! He had already been up walking in the hallways after having had another big breakfast. The headache from the evening before left around 9:00 and he was able to sleep soundly all night. Such good news! I, on the other hand, could not go to sleep until after 12;30 and was awake @ 6:00 a.m. Sometimes I have a difficult time shutting down the conscious brain.
I have tried, without success, to grab a nap this a.m., but finally gave up......did make a run to Whole Foods for some milk and yogurt for me. I will pack a lunch bag for me, take the kindle and finish the John Grishman novel "The Confession", and plan to leave here within the hour.
The weather here is heavy! Very warm and the moisture just hangs like a blanket in the air. We are to expect flash flooding in areas here and adjacent to Durham, perhaps a thunderstorm. I plan to take the shuttle to and from the hospital.
Thought I would write early in case I am late returning.....I will give you and update as soon as I can. As for now, Lee is doing great.............I am the "zombie" from lack of sleep!
More Later................................Brenda
I have tried, without success, to grab a nap this a.m., but finally gave up......did make a run to Whole Foods for some milk and yogurt for me. I will pack a lunch bag for me, take the kindle and finish the John Grishman novel "The Confession", and plan to leave here within the hour.
The weather here is heavy! Very warm and the moisture just hangs like a blanket in the air. We are to expect flash flooding in areas here and adjacent to Durham, perhaps a thunderstorm. I plan to take the shuttle to and from the hospital.
Thought I would write early in case I am late returning.....I will give you and update as soon as I can. As for now, Lee is doing great.............I am the "zombie" from lack of sleep!
More Later................................Brenda
Thursday, September 22, 2011
RATG
You are probably asking, "What is that?" So did I, especially since the pronounciation is RAT G. I have had many medical persons explain this term to me, and after some confusion on my part, I did some research on my own ( these wonderful internets!). By definition, RATG is an acronym for rabbit antithymocyte globulin. (yes, a rabbit is involved). To explain further, it is a polyclonal antibody preparation to decrease rejection of the lung by reducing the lymphocyte counts and modulating t-cell formation. ( These are parts of our white blood cells that protect us from bad invading organisms).
Lee's protective cells in his body are recognizing his lung as an alien and is fighting to throw it out....Ratg....will reduce his fighting cells and reverse the rejection. The down side is that he will have no protection and it will take 4-6 weeks for him to build back to a level that his body will can live peacefully with the transplanted lung. So there you have it.....Rejection and Treatment 101 from me!
The I.V. was started @ noon following precautionary meds I.V., such as benadryl, steroids, tylenol. We were advised that he would most likely get a headache, maybe a fever and generally feel like the flu. He had all of the above but not the fever. Fortunately after about two hours, he fell asleep for two hours. The benadryl worked.
I stayed with him until the I.V. was DC and came back to the condo around 6:45 this evening. He still has the headache and feels very tired, but all the other reactions have disappeared. I will return tomorrow and the next I.V. will probably begin around noon. If all goes well, this one may run 4 hours instead of 6.
I will keep you informed of his progress.
More Later.................................Brenda
Lee's protective cells in his body are recognizing his lung as an alien and is fighting to throw it out....Ratg....will reduce his fighting cells and reverse the rejection. The down side is that he will have no protection and it will take 4-6 weeks for him to build back to a level that his body will can live peacefully with the transplanted lung. So there you have it.....Rejection and Treatment 101 from me!
The I.V. was started @ noon following precautionary meds I.V., such as benadryl, steroids, tylenol. We were advised that he would most likely get a headache, maybe a fever and generally feel like the flu. He had all of the above but not the fever. Fortunately after about two hours, he fell asleep for two hours. The benadryl worked.
I stayed with him until the I.V. was DC and came back to the condo around 6:45 this evening. He still has the headache and feels very tired, but all the other reactions have disappeared. I will return tomorrow and the next I.V. will probably begin around noon. If all goes well, this one may run 4 hours instead of 6.
I will keep you informed of his progress.
More Later.................................Brenda
Wednesday, September 21, 2011
Rejection
Lee and I were hoping we would not have to write a blog titled "Rejection", but then again, we were advised in the beginning that it is not IF your will reject, but WHEN. We are now experiencing the WHEN.
We were here at Duke last week for a check-up and follow-up post infection for the past two months. Last Friday he had the usual lab, breathing tests and a bronchoscopy. We were told at that time that his breathing test were down and showed some reduced air flow in the smaller respiratory areas. His lab work is beginning to show some increased levels of creatinine and his blood potassium is too high. We could not get the reports from the bronchoscopy until Tuesday so we decided to go on to the beach for a few days. That was a good decision. The weather was beautiful and Lee and I were able to have a really good respite from the bumps in the road that he has had to experience lately.
He was admitted to Duke Hospital this afternoon and will begin the agressive globulin (HgT) treatment in the morning. He will have to be monitored closely with one on one nursing.....lots of lab tests and stats. He will be observed closely for any adverse reaction to this treatment. Reactions can range from mild to severe. It is unique to each individual, so each is cared for in case of a severe reaction. He will remain on contact isolation while this is being done.
All in all, it has been a good 10 months since he was discharged in October last year. We have enjoyed family gatherings, dinners with friends and to church when we think it is safe. Lee has steadily become more and more independent and now he functions very much as he did prior to his illness and transplant. He loves to get in his truck and go wherever he pleases. I'm sure he misses work on the farm and I know some of the decisions he had to make were difficult. He sold all his cows and leased all the farmland to a neighbor. To date he has sold all of his farm equipment with the exception of his two favorite tractors and some other small pieces of useful equipment. He wanted to do a garden, but finally decided it was too stressful to try to tell others how to do it the way he wanted, so eventually left it alone.
Lee continues to go to the rehab unit at Catawba three days a week and his strength is returning. Getting his legs back has been the most difficult. In talking to others who have had lung transplants, we have discovered that others have the same loss of strength in their legs.
I have to say that it is good to know you are there tonight, blog followers......it is hard to stay in the condo without Lee....very lonely. We have been "joined by the hip" for almost two years now!
I had to close the blog when my book was sent to the publisher. One of their requirements as dictated by the contract. If you are interested in my book:
Check the web site: publishamerica.com
Mention my name:
Title of my book: Now We Have Hope
More Later......................................Brenda
We were here at Duke last week for a check-up and follow-up post infection for the past two months. Last Friday he had the usual lab, breathing tests and a bronchoscopy. We were told at that time that his breathing test were down and showed some reduced air flow in the smaller respiratory areas. His lab work is beginning to show some increased levels of creatinine and his blood potassium is too high. We could not get the reports from the bronchoscopy until Tuesday so we decided to go on to the beach for a few days. That was a good decision. The weather was beautiful and Lee and I were able to have a really good respite from the bumps in the road that he has had to experience lately.
He was admitted to Duke Hospital this afternoon and will begin the agressive globulin (HgT) treatment in the morning. He will have to be monitored closely with one on one nursing.....lots of lab tests and stats. He will be observed closely for any adverse reaction to this treatment. Reactions can range from mild to severe. It is unique to each individual, so each is cared for in case of a severe reaction. He will remain on contact isolation while this is being done.
All in all, it has been a good 10 months since he was discharged in October last year. We have enjoyed family gatherings, dinners with friends and to church when we think it is safe. Lee has steadily become more and more independent and now he functions very much as he did prior to his illness and transplant. He loves to get in his truck and go wherever he pleases. I'm sure he misses work on the farm and I know some of the decisions he had to make were difficult. He sold all his cows and leased all the farmland to a neighbor. To date he has sold all of his farm equipment with the exception of his two favorite tractors and some other small pieces of useful equipment. He wanted to do a garden, but finally decided it was too stressful to try to tell others how to do it the way he wanted, so eventually left it alone.
Lee continues to go to the rehab unit at Catawba three days a week and his strength is returning. Getting his legs back has been the most difficult. In talking to others who have had lung transplants, we have discovered that others have the same loss of strength in their legs.
I have to say that it is good to know you are there tonight, blog followers......it is hard to stay in the condo without Lee....very lonely. We have been "joined by the hip" for almost two years now!
I had to close the blog when my book was sent to the publisher. One of their requirements as dictated by the contract. If you are interested in my book:
Check the web site: publishamerica.com
Mention my name:
Title of my book: Now We Have Hope
More Later......................................Brenda
We are Back
It's been a while since I have visited you......going home......summer........readjustments to our new lifestyle. I am writing this from the beach. We have been here since Saturday after leaving Durham for a check-up for Lee. We were called by the lung transplant nurse yesterday and advised to return to Duke for Lee to be hospitilized for a few days. His bronchoscopy last week shows rejection.......the kind that must be treated aggressively. I will be busy packing to return and will catch up on the blog tonight. I have lots of news to share with you so stay here.
More Later.............................Brenda
More Later.............................Brenda
Subscribe to:
Comments (Atom)