Hi and happy Friday!
Somehow I thought it would feel different to actually be on the transplant list. Nope! It's probably because I know how long it's going to take to find a set of lungs that will work in my body. Yesterday, just before the lecture part of rehab, several people were saying they were listed and got a call within a day or hours...mine's going to be months so I'm not too worried. FYI...their calls ended up being "dry runs".
It was interesting to listen to the other transplant candidates asking each other what their LAS (Lung Allocation Score) was...sort of like asking someone what grade they got on a test. Since I don't even know my LAS I can't participate in those discussions. Lee and I noticed that Duke has added at least ten people to the group since I started the first of October. They keep on going!
I didn't have any tests this week (after my non-tests on Monday) so I've actually been able to go to rehab for the remainder of the week. In an earlier blog I had mentioned that I'd have to go to 23 days of rehab both before and after transplant. When I said that I was thinking to myself how easy that would be. Nope! It's not easy at all to get 23 full days in. Since I started on October 5 I have completed only 10 days!
Lee and I went to two "Transplant School" classes this week. Those are lectures for the patient and caregiver that are geared specifically to transplant. The first one was about diabetes. It's very likely that I will have diabetes, at least for a while, after the transplant. Apparently they start testing your blood sugar levels during surgery and start insulin as needed right then! The medications that I'll be given have a real tendency to drive sugar levels way up. Then, as they taper down those meds, my sugar levels might drop back down. But...not necessarily. That's why they have a lecture specific to diabetes. Finger pricks and shots may become a new way of life but I will be able to breathe and that's a good trade-off for me :-)
The second lecture was about Duke Home Care. Alice, the head of Home Care came to talk to us about how we won't be alone - even if we might feel like it. They are going to teach us (patient and caregiver) how to do all sorts of stuff like giving insulin shots or cleaning feeding tubes or hanging food for the feeding tube, etc. She did stress that wound cleaning was not required of the caretaker. I was glad to hear that for my caretaker team ;-) All in all it was interesting and Lee was good with what he heard.
It seems to have been a long week for both of us. We're both tired and ready for a rest with no appointments for the next two days. I have a massage appointment at 9:00 tomorrow morning but that's different!!!!
The waiting continues...
Have a great weekend.
Love,
Lee, Wendy and Missy
Friday, October 30, 2009
Monday, October 26, 2009
Week 4 of Rehab
It's hard to believe that we've been here long enough to have a blog title that says "week 4"! It makes me wonder if we will ever get the apartment completely settled. Every time it starts to look good, we just unpack some more boxes and there you have it...instant mess!!!
Today was another IV medication day. Instead of the Rituxan today I received IG medicine (as if I understand that :-) Apparently the protocol is to alternate the medicine to kill off my antibodies with immune system boosts on the other week. It doesn't make a lot of sense to me to "boost:" my immune system because I thought that was what was causing these antibodies...I guess not. Maybe by the time this is over I'll have a good grasp on the medicine.
After the IV session (only four and 1/2 hours this week) I went back up the the GI lab to have the ph probe stuck down my throat for 24 hours. I wasn't looking forward to it and I still feel sort of cruddy. When they told me that the test I had last week (big probe in throat to see how I swallow) had to be repeated I drew that magical line...NO WAY were they going to do that one again unless Dr. Zaas said it was mandatory. The girl was very nice about it and kept telling me she understood however she was going to stand firm on repeating the test. I called Khara who called Dr. Zaas and the short story is that I some how got out of both tests (no probes for me today!!!)
By then it was around 2:00 and I hadn't eaten so I went home instead of rehab. I was going to do some work around the house but I fell asleep and didn't wake up until 5:15 p.m. It really cuts down how productive you can be. Vanessa...that's why I need you to come out for a couple of weeks. You'll get me into shape. We could then both go up to Amy's and help here organize her new house! I'd sing Disney songs :-)
Khara is going to talk to Dr. Zaas and make sure there is nothing else that needs to be done so that they can list me...I have mixed thoughts on that..."finally!" and "so soon???"
I was thinking that being on a transplant list is sort of like being pregnant. You have to be ready to go at a moments notice. Lee and I need to finalize our "ducks in a row" to make sure there aren't a few still swimming in the pond. Can it be possible for Lee and I to be so organized that we won't forget to arrange for Missy and we keep gas in the car so we can go somewhere at 3:45 a.m on Sunday if we need to and we remember to have our cell phones charged and we remember to have them with us and and and and...it seems a little daunting when I start writing it all down. Not to worry because that's why we can out to NC. We weren't born ready but we're working on it :-)
Lee's not feeling really great and I hope I didn't give him the flu. What a group we make when Missy is the healthiest one! I'll try to give him orange juice and vitamin C!
Well tomorrow I start rehab again and it will be like starting over. Having missed this much time isn't a good thing. My miniscule muscles start wimping out as soon as I stop exercising. I wonder if they'll take it easy on me or start me where I left off...I'll let you know.
Hope all is well and I'll talk to you soon.
Love,
Lee, Wendy and Missy
Today was another IV medication day. Instead of the Rituxan today I received IG medicine (as if I understand that :-) Apparently the protocol is to alternate the medicine to kill off my antibodies with immune system boosts on the other week. It doesn't make a lot of sense to me to "boost:" my immune system because I thought that was what was causing these antibodies...I guess not. Maybe by the time this is over I'll have a good grasp on the medicine.
After the IV session (only four and 1/2 hours this week) I went back up the the GI lab to have the ph probe stuck down my throat for 24 hours. I wasn't looking forward to it and I still feel sort of cruddy. When they told me that the test I had last week (big probe in throat to see how I swallow) had to be repeated I drew that magical line...NO WAY were they going to do that one again unless Dr. Zaas said it was mandatory. The girl was very nice about it and kept telling me she understood however she was going to stand firm on repeating the test. I called Khara who called Dr. Zaas and the short story is that I some how got out of both tests (no probes for me today!!!)
By then it was around 2:00 and I hadn't eaten so I went home instead of rehab. I was going to do some work around the house but I fell asleep and didn't wake up until 5:15 p.m. It really cuts down how productive you can be. Vanessa...that's why I need you to come out for a couple of weeks. You'll get me into shape. We could then both go up to Amy's and help here organize her new house! I'd sing Disney songs :-)
Khara is going to talk to Dr. Zaas and make sure there is nothing else that needs to be done so that they can list me...I have mixed thoughts on that..."finally!" and "so soon???"
I was thinking that being on a transplant list is sort of like being pregnant. You have to be ready to go at a moments notice. Lee and I need to finalize our "ducks in a row" to make sure there aren't a few still swimming in the pond. Can it be possible for Lee and I to be so organized that we won't forget to arrange for Missy and we keep gas in the car so we can go somewhere at 3:45 a.m on Sunday if we need to and we remember to have our cell phones charged and we remember to have them with us and and and and...it seems a little daunting when I start writing it all down. Not to worry because that's why we can out to NC. We weren't born ready but we're working on it :-)
Lee's not feeling really great and I hope I didn't give him the flu. What a group we make when Missy is the healthiest one! I'll try to give him orange juice and vitamin C!
Well tomorrow I start rehab again and it will be like starting over. Having missed this much time isn't a good thing. My miniscule muscles start wimping out as soon as I stop exercising. I wonder if they'll take it easy on me or start me where I left off...I'll let you know.
Hope all is well and I'll talk to you soon.
Love,
Lee, Wendy and Missy
Friday, October 23, 2009
TGIF - next week's got to be better!
I haven't felt good since Wednesday night...cold? flu? Who knows and it really doesn't matter what they call it if you don't feel good. Duke took a strong interest in my being sick and I am now on an anti-biotics, a steroid and tami-flu. Those ought to do something!!!
I don't have a sore throat any more and I'm not coughing as much and my headache is pretty much gone so I keep forgetting that I'm supposed to be sick. I know that sounds dumb but with all the lung problems I have when I get sick it seems to stick around. Today Lee and I were lifting stuff and I was moving some things around. All of a sudden I felt a little dizzy and a little short of breath so off to find the pulse oxymeter. Well my sat number was 84 (not good) and my pulse was 146 (a little too good). I sat myself right down and hung out waiting for one number to go up and the other to go down! It was a bit scary because my pulse has never gotten that high before. It came down but I need to remember to rest and take it easy. Who wants to do that when you feel a little better??? I'll be a good patient this weekend - practice for the transplant :-)
I got the results back from my PET scan...I have an odd little module in my upper right lobe that they can't really determine if it's malignant or not. Don't freak out Amy because there is lots of good news and not any bad news...
I'm just really glad that nothing unexpected showed up...that would have been a real bummer and could have created transplant problems. The only test left is to swallow the probe for 24 hours. I tried everything I could think of to get out of that but it just didn't fly :-(
On to some good news...a garage came open today so tomorrow - unless it rains - we can move all the junk we've been piling up in the dining room into our new garage. Wow, it will seem like our apartment got so much bigger! I don't know if we are going to move our dining set that we currently have in the kitchen into our dining room or leave it in the kitchen. I'll just leave that up to Lee, our interior decorator!
The craft room is coming along. I have all the embroidery thread organized (thanks to Lee) and the sewing machine and serger and embroidery machine are all set up and operating. My newest toy, a Stahl's Heat Press, is now set up and I've done my first three shirts...VERY cool! Guess what you're getting for Christmas -- just kidding :-)
Oh! I should have shared this info right up front....
Lee drove to Walgreens three times today and didn't get lost once! He wasn't using his GPS either!!!
He said he's going to try for the grocery store tomorrow without using GPS. I think his goal is to be able to drive three miles in any direction without GPS :-)
Missy is well...she LOVES her walks because she gets Lee with her. Today Lee and Missy walked a couple of miles through the apartment complex and down the street to the stop sign. It's really great exercise for both of them and they both come back with smiles (or wags)!
I'm done blabbing and off to read my book (the last of the Twilight series). I wish I'd never gotten hooked on those books but now I want to read the last one slowly to make it last!
Love to all and hope everyone has a great weekend,
Lee, Wendy and Missy
I don't have a sore throat any more and I'm not coughing as much and my headache is pretty much gone so I keep forgetting that I'm supposed to be sick. I know that sounds dumb but with all the lung problems I have when I get sick it seems to stick around. Today Lee and I were lifting stuff and I was moving some things around. All of a sudden I felt a little dizzy and a little short of breath so off to find the pulse oxymeter. Well my sat number was 84 (not good) and my pulse was 146 (a little too good). I sat myself right down and hung out waiting for one number to go up and the other to go down! It was a bit scary because my pulse has never gotten that high before. It came down but I need to remember to rest and take it easy. Who wants to do that when you feel a little better??? I'll be a good patient this weekend - practice for the transplant :-)
I got the results back from my PET scan...I have an odd little module in my upper right lobe that they can't really determine if it's malignant or not. Don't freak out Amy because there is lots of good news and not any bad news...
- The nodule hasn't grown since the CT scan in August
- No lymph nodes are inflamed
- No where else on my body "glowed"
- If it is cancer then the transplant will cure it!
- They will definitely still transplant if it came out as cancerous
- The only way to determine if it's cancer or not is to have a biopsy and why bother if we're going to take out the whole lung!
I'm just really glad that nothing unexpected showed up...that would have been a real bummer and could have created transplant problems. The only test left is to swallow the probe for 24 hours. I tried everything I could think of to get out of that but it just didn't fly :-(
On to some good news...a garage came open today so tomorrow - unless it rains - we can move all the junk we've been piling up in the dining room into our new garage. Wow, it will seem like our apartment got so much bigger! I don't know if we are going to move our dining set that we currently have in the kitchen into our dining room or leave it in the kitchen. I'll just leave that up to Lee, our interior decorator!
The craft room is coming along. I have all the embroidery thread organized (thanks to Lee) and the sewing machine and serger and embroidery machine are all set up and operating. My newest toy, a Stahl's Heat Press, is now set up and I've done my first three shirts...VERY cool! Guess what you're getting for Christmas -- just kidding :-)
Oh! I should have shared this info right up front....
Lee drove to Walgreens three times today and didn't get lost once! He wasn't using his GPS either!!!
He said he's going to try for the grocery store tomorrow without using GPS. I think his goal is to be able to drive three miles in any direction without GPS :-)
Missy is well...she LOVES her walks because she gets Lee with her. Today Lee and Missy walked a couple of miles through the apartment complex and down the street to the stop sign. It's really great exercise for both of them and they both come back with smiles (or wags)!
I'm done blabbing and off to read my book (the last of the Twilight series). I wish I'd never gotten hooked on those books but now I want to read the last one slowly to make it last!
Love to all and hope everyone has a great weekend,
Lee, Wendy and Missy
Wednesday, October 21, 2009
Just some more info - Wednesday October 21, 2009
Wouldn't you just know...I've got a cold.
I've been pretty healthy (and I know that's a relative statement!) since I got out of the hospital in May. I've been on a good amount of steroids since then and I know that has really helped. I woke up yesterday and was pretty much out of breath. As the day progressed I was still short of breath and last night I started really feeling sort of nasty. I ended up trying to sleep in the recliner because lying down in the bed was hard for my breathing. As many of you probably know from my 3:00 am e-mail I didn't get much sleep last night.
This morning - when my throat hurt and my chest hurt - I called Khara and the answer to my question was " No, do not go to the Fitness Center for rehab". They don't want me getting anyone else sick. I was started on anti-biotics (I always keep them on hand now) and I'm supposed to call tomorrow with my update. If I start running a fever I have to call right away. When I'm feeling "normal" I forget what a tenuous hold I have on health. My frail little lungs get wimpy pretty easily. But that's one of the reasons I'm on the transplant list.
Speaking of transplant list, I think this would be a great time to talk about "Dry Runs".
A dry run is when we get the phone call to come to the hospital and we've called everyone and headed to the hospital and have waited around and then - often several hours later - we are told to go on back home because there is a problem with the lungs and there won't be a transplant today.
I imagine that must be very hard to go through but the staff explained that it does happen to a percentage of the transplant patients. The main reason would be because Duke makes the decision to accept the lungs of the donor based on a phone call from other people. Those people provide test results (discussed yesterday) and blood type and size and I'm sure different specific stuff I don't even know about. When Duke says they want the lungs, then someone from Duke goes to get them at the same time they are calling the patient to come into the hospital. This is important because they want the patient to be prepped and ready to go when those lungs arrive at the hospital so there is minimal time out of the body.
When the lungs arrive at Duke then the docs take a look at them and do other tests (I'm guessing). At that point if the surgeon doesn't feel they are going to be OK he will cancel the procedure. He doesn't want bad lungs replacing bad lungs. Now that does make sense to me.
So the reason for this discussion is just a heads up that that might happen. I'm hoping it doesn't but we need to be open to the possibility. Going back to rest now.
Love to all,
Lee, Wendy and Missy
I've been pretty healthy (and I know that's a relative statement!) since I got out of the hospital in May. I've been on a good amount of steroids since then and I know that has really helped. I woke up yesterday and was pretty much out of breath. As the day progressed I was still short of breath and last night I started really feeling sort of nasty. I ended up trying to sleep in the recliner because lying down in the bed was hard for my breathing. As many of you probably know from my 3:00 am e-mail I didn't get much sleep last night.
This morning - when my throat hurt and my chest hurt - I called Khara and the answer to my question was " No, do not go to the Fitness Center for rehab". They don't want me getting anyone else sick. I was started on anti-biotics (I always keep them on hand now) and I'm supposed to call tomorrow with my update. If I start running a fever I have to call right away. When I'm feeling "normal" I forget what a tenuous hold I have on health. My frail little lungs get wimpy pretty easily. But that's one of the reasons I'm on the transplant list.
Speaking of transplant list, I think this would be a great time to talk about "Dry Runs".
A dry run is when we get the phone call to come to the hospital and we've called everyone and headed to the hospital and have waited around and then - often several hours later - we are told to go on back home because there is a problem with the lungs and there won't be a transplant today.
I imagine that must be very hard to go through but the staff explained that it does happen to a percentage of the transplant patients. The main reason would be because Duke makes the decision to accept the lungs of the donor based on a phone call from other people. Those people provide test results (discussed yesterday) and blood type and size and I'm sure different specific stuff I don't even know about. When Duke says they want the lungs, then someone from Duke goes to get them at the same time they are calling the patient to come into the hospital. This is important because they want the patient to be prepped and ready to go when those lungs arrive at the hospital so there is minimal time out of the body.
When the lungs arrive at Duke then the docs take a look at them and do other tests (I'm guessing). At that point if the surgeon doesn't feel they are going to be OK he will cancel the procedure. He doesn't want bad lungs replacing bad lungs. Now that does make sense to me.
So the reason for this discussion is just a heads up that that might happen. I'm hoping it doesn't but we need to be open to the possibility. Going back to rest now.
Love to all,
Lee, Wendy and Missy
Tuesday, October 20, 2009
Is is only Tuesday????
Wow! It's only Tuesday and I feel like I've done enough for the week :-)
Yesterday morning I went to have my first IV treatment to reduce the antibodies in my blood. Lee went with me and for some reason I thought it would take around one hour....we were finally finished at 2:10 in the afternoon!
These treatments are done in the oncology treatment clinic and I was quite impressed with the way they have things set up. I arrived at Clinic 2A (took me 15 minutes to find the place!) and told the receptionist my name and that I had an 8:30 appt. She checked me off and gave me one of those vibrating beepers like you get at The Outback Restaurant...I'm not kidding...it made me chuckle to myself. But it really was efficient. No one had to have their name called out and when yours started to beep you just took it to the nurse across the hall and she greeted you by name and took you to your table - ok, your bed.
My nurse, Brenda, was super. Not only was she really nice, she started an IV in me on the first try with no pain...that is an absolute first!!!! I asked her if she could come to all my tests where I need an IV put in but unfortunately she's pretty tied up in oncology.
The medicine I am getting is called rituxan - or rituximab - and it's used primarily as a chemotherapy drug for people with lymphoma. I am receiving it because it also kills off the b cells - whatever they are - and help to get rid of antibodies that would cause me to reject donor lungs. The first course of treatment - there are four - is done very, very slowly to see if I am going to get a reaction. They always start the treatment by giving you IV benadryl and IV solumedral (a steroid) and two tylenol. I don't know why they do that but it's protocol so I go with the flow. I did really well with the medication and didn't have any reaction. Because of that, I'll only need two to three hours next week.
Today I went to the GI Special Procedures Lab (doesn't that sound impressive!) for a motility test (can I swallow right) and a ph test (stick a probe down my throat for 24 hours to measure acid in my stomach). Well I didn't read the fine print and didn't stop taking my acid reflux meds. Because of that they were only able to do the motility part of the procedure and I go back next Monday to have the probe put in for 24 hours.
I hadn't eaten all day because of the GI tests so we went to lunch in the food court in the basement of Duke South (all the clinics). I use the word food court very generously because it's just nasty :-( They are going to be opening a Chick Fil a express soon and that will definitely be the highlight of the food court. We're going to have to branch out and find some other places to eat around the clinic and the hospital or Lee will starve while I'm in for my transplant! That would be an unpleasant way to lose weight!
While we were downstairs Khara (pre-transplant coordinator) called and asked me to go back up to Clinic 2F (pulmonary) and sign my consent forms with Dr. Zaas. So we hiked back up there and waited our standard time before they called us in. The poor coordinator who was working clinic today didn't know how to work Microsoft 2007 (where's the menu across the top????) so she was having a lot of trouble printing out the forms for us to read over before I signed. Finally success! She brought them in and then Dr. Zaas came in to talk with us about them. The first one basically states I want Duke to be my transplant hospital. The second one says that I agree to make some lifestyle changes and go to rehab and go to clinic and take my meds etc.
The last one discusses "high risk" lungs...I needed to decide if I was willing to accept lungs from a donor that the CDC termed high risk. Dr. Zaas talked about this with us for quite a while. Of note is the fact that the CDC is currently changing its criteria for high risk because the definition as it stands now includes an awful lot of people that aren't high risk. Duke hospital requests every donor lungs be tested for HIV, Hepatitis A, B and C and a couple of other things I can't remember. If any of those tests are positive the lungs aren't accepted. They are told if the donor falls into the high risk category and if all tests are fine, Duke will accept the lungs. Approximately 15 percent of all donor lungs come from high risk donors as the definition now stands.
Dr. Zaas said that we have the choice of accepting high risk lungs or deciding not to accept them. Either way was fine with him but we need to stick by whatever decision we make. If we say no then I wouldn't be considered for transplant unless the donor was from a non-high risk group. If we say yes then I will be told if my lungs are coming from a high risk donor but I will not be told why the donor fits the criteria. That is to protect the privacy of the donor family. He wants to make sure we understand what we are agreeing to because last year he had a patient who had agreed to accept high risk lungs and Duke asked for the lungs to come for that patient. After the lungs came, the patient refused to accept them. Duke had no other patients at that time that the lungs could be used for and because Duke accepted them, no other hospitals had even considered them. The lungs ended up in the trash!!!!! Dr. Zaas said the worst part was they were the best lungs he had seen in over five years. That really was sad. What a waste for the unused lungs and the donor family.
Dr. Zaas had said that as far as he knew no lung transplant patient, anywhere in the US, had ever contracted a disease from the high risk lungs. He said if it were him, or his family, he wouldn't hesitate to accept them. He also reminded us that Duke really doesn't want the New York Times etc. to be down in Durham because they accepted some bad lungs and infected one of their patients! All this said and he left Lee and I to look everything over and make our decisions. This was a tough call and Lee and I made it together. The final analysis came down to this:
We will now turn it over to God because it's getting to be a lot to handle alone.
It's now 6:15 at night and we are both sort of drained. Easy dinner and kick back with TV sounds good to me.
Oh, one other thing. I'm going to ask Amy to continue my blog when I actually go into the hospital. When I'm feeling up to it, I can then take over. OK with you Amy??
Take care and love to all.
Wendy, Lee and Missy
Today I went to the GI Special Procedures Lab (doesn't that sound impressive!) for a motility test (can I swallow right) and a ph test (stick a probe down my throat for 24 hours to measure acid in my stomach). Well I didn't read the fine print and didn't stop taking my acid reflux meds. Because of that they were only able to do the motility part of the procedure and I go back next Monday to have the probe put in for 24 hours.
I hadn't eaten all day because of the GI tests so we went to lunch in the food court in the basement of Duke South (all the clinics). I use the word food court very generously because it's just nasty :-( They are going to be opening a Chick Fil a express soon and that will definitely be the highlight of the food court. We're going to have to branch out and find some other places to eat around the clinic and the hospital or Lee will starve while I'm in for my transplant! That would be an unpleasant way to lose weight!
While we were downstairs Khara (pre-transplant coordinator) called and asked me to go back up to Clinic 2F (pulmonary) and sign my consent forms with Dr. Zaas. So we hiked back up there and waited our standard time before they called us in. The poor coordinator who was working clinic today didn't know how to work Microsoft 2007 (where's the menu across the top????) so she was having a lot of trouble printing out the forms for us to read over before I signed. Finally success! She brought them in and then Dr. Zaas came in to talk with us about them. The first one basically states I want Duke to be my transplant hospital. The second one says that I agree to make some lifestyle changes and go to rehab and go to clinic and take my meds etc.
The last one discusses "high risk" lungs...I needed to decide if I was willing to accept lungs from a donor that the CDC termed high risk. Dr. Zaas talked about this with us for quite a while. Of note is the fact that the CDC is currently changing its criteria for high risk because the definition as it stands now includes an awful lot of people that aren't high risk. Duke hospital requests every donor lungs be tested for HIV, Hepatitis A, B and C and a couple of other things I can't remember. If any of those tests are positive the lungs aren't accepted. They are told if the donor falls into the high risk category and if all tests are fine, Duke will accept the lungs. Approximately 15 percent of all donor lungs come from high risk donors as the definition now stands.
Dr. Zaas said that we have the choice of accepting high risk lungs or deciding not to accept them. Either way was fine with him but we need to stick by whatever decision we make. If we say no then I wouldn't be considered for transplant unless the donor was from a non-high risk group. If we say yes then I will be told if my lungs are coming from a high risk donor but I will not be told why the donor fits the criteria. That is to protect the privacy of the donor family. He wants to make sure we understand what we are agreeing to because last year he had a patient who had agreed to accept high risk lungs and Duke asked for the lungs to come for that patient. After the lungs came, the patient refused to accept them. Duke had no other patients at that time that the lungs could be used for and because Duke accepted them, no other hospitals had even considered them. The lungs ended up in the trash!!!!! Dr. Zaas said the worst part was they were the best lungs he had seen in over five years. That really was sad. What a waste for the unused lungs and the donor family.
Dr. Zaas had said that as far as he knew no lung transplant patient, anywhere in the US, had ever contracted a disease from the high risk lungs. He said if it were him, or his family, he wouldn't hesitate to accept them. He also reminded us that Duke really doesn't want the New York Times etc. to be down in Durham because they accepted some bad lungs and infected one of their patients! All this said and he left Lee and I to look everything over and make our decisions. This was a tough call and Lee and I made it together. The final analysis came down to this:
- I'm already going to be cutting my donor pool short because of my antibodies that don't get destroyed
- I don't have cystic fibrosis or pulmonary fibrosis so those patients will be ahead of me
- If I don't include high risk donors, I've cut my donor pool down by another 15 percent
- I am already in my "window" and I don't want to reach the end of my window and not have a new set of lungs.
We will now turn it over to God because it's getting to be a lot to handle alone.
It's now 6:15 at night and we are both sort of drained. Easy dinner and kick back with TV sounds good to me.
Oh, one other thing. I'm going to ask Amy to continue my blog when I actually go into the hospital. When I'm feeling up to it, I can then take over. OK with you Amy??
Take care and love to all.
Wendy, Lee and Missy
Friday, October 16, 2009
End of another week 10-16-09
Well the week is over and I've had two more tests. The heart cath went very well except for the bruising. My leg, where they went into the artery and the vein looks purple! And then there are the bruises from trying to put an IV in :-(
I also had a heart echo test with a bubble test. Basically it's an ultrasound of my heart and then they shoot bubbles into a vein to watch how it moves from the right side of the heart to the left. They are looking for leaks. It also meant another IV....ugh
Lee and I were talking at dinner tonight about the transplant list. Dr. Zaas intends to list me next Friday (one week!) as long as the rest of my tests are done. I think they will be because next week is pretty full with tests and tests and more tests! We are trying to make plans but I'm sure we are not thinking of something. We got a house phone because our cell phones weren't that clear in our house and we want to be able to hear the phone if it rings at 3:00 in the a.m. We were talking about Missy -- we're going to ask the neighbor (they are very nice) if they will walk Missy if Lee can't get back to the apt. We were talking about what we do if one of us gets the call and we aren't together (what if I'm at Amy's; Fitness Center; shopping; etc) We will have up to 2 hours so we should be able to connect and get to the hospital in that time.
I have some papers I need to sign with the pre-transplant coordinator on Monday. Per Khara, one is a contract that I need to sign that says I will go by all the rules. Well, if I am going to have a transplant I'd think it's a no-brainer to follow the rules but apparently that isn't always the case. Lee and I still talk about the high percentage of transplant patients that go back to smoking after a transplant - that just makes NO sense to us. It took me 11 trys to quit smoking so I know I'd never want to go through that again!!!!
I'm really looking forward to January when NC law makes it illegal to smoke in bars and restaurants. So far we have only been in one restaurant that still has a smoking section. We have avoided The Waffle House (highly recommended by Stephen) because I know that they allow smoking and they all look like dives to us anyway.
Lee and I both got our flu shots this week and Lee also got a tetanus and I got #2 of Hepatitis B. I know it must seem like we are really big into needles but we really aren't!
I know this sounds sort of disjointed tonight (if not always!) but I'm really tired and I sort of don't feel good so I think I'll head to bed and wake up feeling great.
Love to all,
Lee, Wendy and Missy
I also had a heart echo test with a bubble test. Basically it's an ultrasound of my heart and then they shoot bubbles into a vein to watch how it moves from the right side of the heart to the left. They are looking for leaks. It also meant another IV....ugh
Lee and I were talking at dinner tonight about the transplant list. Dr. Zaas intends to list me next Friday (one week!) as long as the rest of my tests are done. I think they will be because next week is pretty full with tests and tests and more tests! We are trying to make plans but I'm sure we are not thinking of something. We got a house phone because our cell phones weren't that clear in our house and we want to be able to hear the phone if it rings at 3:00 in the a.m. We were talking about Missy -- we're going to ask the neighbor (they are very nice) if they will walk Missy if Lee can't get back to the apt. We were talking about what we do if one of us gets the call and we aren't together (what if I'm at Amy's; Fitness Center; shopping; etc) We will have up to 2 hours so we should be able to connect and get to the hospital in that time.
I have some papers I need to sign with the pre-transplant coordinator on Monday. Per Khara, one is a contract that I need to sign that says I will go by all the rules. Well, if I am going to have a transplant I'd think it's a no-brainer to follow the rules but apparently that isn't always the case. Lee and I still talk about the high percentage of transplant patients that go back to smoking after a transplant - that just makes NO sense to us. It took me 11 trys to quit smoking so I know I'd never want to go through that again!!!!
I'm really looking forward to January when NC law makes it illegal to smoke in bars and restaurants. So far we have only been in one restaurant that still has a smoking section. We have avoided The Waffle House (highly recommended by Stephen) because I know that they allow smoking and they all look like dives to us anyway.
Lee and I both got our flu shots this week and Lee also got a tetanus and I got #2 of Hepatitis B. I know it must seem like we are really big into needles but we really aren't!
I know this sounds sort of disjointed tonight (if not always!) but I'm really tired and I sort of don't feel good so I think I'll head to bed and wake up feeling great.
Love to all,
Lee, Wendy and Missy
Wednesday, October 14, 2009
Meeting with the Pulmonologist 10-14-09
Hi all.
Lee and I had our first "clinic" appointment. It was scheduled for 8:00 a.m. with Dr. Zaas. I think I mentioned that he's my pulmonary doc and the head of the transplant team.
We showed up at 7:50 and they called us right at 8:00. Yea! Yea! Yea! I only need to loose three more pounds! That's so exciting. My blood pressure was great and my O2 level was 99 (why in the world would I need a transplant with numbers like I had???)
The nurse gave me three pieces of paper and put Lee and I in a room (just as small as CA) and we were set to wait the "normal" 45 min - 1 hour but Khara - the other pre-transplant coordinator came into the room within ten minutes. She - like Lauren - are both RNs that specialize in lung transplants. They both are members of the transplant team and coordinate everything medical for the pre-transplant patients. It's sort of like having your own concierge at the hospital and clinic :-). Khara has just come back from maternity leave (she has a cute little baby girl named Kyneddy) and this is the first time Lee and I have met her. I asked if she was going to be my new coordinator and the great answer for me is no. I will have both Lauren and Khara - at least for a few months until Khara is back on board. Two for the price of one and just that much easier to get a hold of!
Anyway back to the appt...Khara asked a couple of medical questions and started reading my electronic chart. I asked if I could just have the Right Heart Cath tomorrow instead of both the Left and Right sides - it makes a huge difference in the procedure (Left requires an artery and Right only just requires a vein). Khara agreed that because I'd had a Left and Right done in October of last year then the Right is probably all I'd need. She'd ask Dr. Zaas. Other than that she was happy with my progress in Rehab and she left.
Next came Dr. Zaas. He is so nice. First question about our move - how did it go, etc. Then he asked how I like the Rehab program. As you probably have figured out by now, I am really impressed with the program. Dr. Zaas was glad to hear it and he told us that a couple of weeks ago he as visiting another transplant program that asked him why Duke's numbers were so high (survival rate). He said he directly attributes it to their Pulmonary Rehab program - both before and after transplant. Good to know. He liked the weight loss and asked me to continue losing weight if I can...again there's a direct correlation between optimal weight and survival rate. When put that way how do you argue with continued dieting?
We discussed the heart cath and I do have to have both the Left and Right side done. He said he wants Duke to do the procedure because a few months ago they transplanted a man and a couple of weeks later he dropped dead from a heart attack. It had nothing to do with the transplant and they had no clue that he had significant heart issues that should show up on a heart cath. That said, I'll have both sides done. Dr. Zaas said if they do find heart problems they are VERY aggressive towards fixing them and it will not rule out a lung transplant - it will just require more work before the transplant.
We talked about the esophageal wrap surgery that I will probably have to have. It keeps acid in your stomach and doesn't let it go back up into the esophagus to ruin a new set of lungs. They do that surgery two to three weeks after the transplant.
After all the not fun discussions took place Dr. Zaas leaned back in his chair and said "why don't we try and move your PET Scan to next week so we can list you next Friday". Good thing I was sitting down because I was really surprised. He probably knew that because the first words out of my mouth were "Are you sure?" He was sure.
Then we talked about those nasty little anti-bodies that I have in my blood. You know...the ones that would attack 90 percent of the donor lungs I'd receive. He doesn't want to to the cleansing process (where they take out all the anti-bodies) because there is a stronger chance of infection. It's pretty much dialysis. I'm going to have a series of IV medications given over the next 4-5 weeks. They will kill off the anti-bodies. Meanwhile they try to match me up with a donor that doesn't have all those anti-bodies. He said that most people with anti-bodies get their transplant before they ever finish their IV treatments.
So now I'm really excited and really scared! Every time I think I've seen the reality of this situation something comes along to make it more real! End of next week....WOW! That means we will have to be available 24-7 and could get the call at any time. WOW! We're ready. Sure we are :=)
Amy called to see how the doctor's appt. went. When I told her about next week she was really surprised. She then asked what her responsibilities were as the back-up caretaker. You have to laugh or you'd probably cry so I'm laughing!!!
Amy got just as freaked out as Lee did when she heard what he was told last week. Flushing PIC lines. Cleaning Feeding tube clogs. Giving food through the feeding tube. Giving Insulin shots. Amy thought these sounded like jobs for a home health worker and shouldn't we have one? I explained it was really easy (according to the person who told us about it) and that they will train her and Lee in how to do this stuff. I'm going to quote Amy on my favorite and most reassuring comment she made during the conversation...."I don't know if I can give you a shot. I might faint." Oh joy! The only difference between Amy and Lee is that she voices her concerns and Lee keeps his to himself - but it's very obvious! Lucky for Amy that Michael's Aunt is a nurse. I suggested Amy discuss this with Carol so Carol can reassure her. Maybe Carol could reassure Lee -- and Me!
Not to worry though. I have complete confidence in both Amy and Lee. I love them and they love me so I'm sure they'll do well. Lee thought it would be a great idea to fly Vanessa out too as an additional support person. Oh you bet! This is the person who told me if I pulled out my own IV she'd have to hurt me! She watches House so she knows how that stuff can fly all over you! Poor Vanessa had to sit with me in the ER while I was still in Sacramento. We sat for hours and it gave me an opportunity to learn more about her. Let's see, she doesn't do needles (she too faints) and she doesn't do blood! The more I think about it, Vanessa would probably be a great addition to the support group! Either way, I'd love for her to come out for a long visit...you too Stephen. I love you guys and miss you!
They aren't the only ones we love and miss either! If ANYONE wants to sign up for the caretaker roll, feel free to call us or e-mail us. But don't feel bad if we don't get back to you right away because the list of interested parties will probably be really long :=)
I'll let you know how things are progressing.
Love to all,
Lee, Wendy and Missy
Lee and I had our first "clinic" appointment. It was scheduled for 8:00 a.m. with Dr. Zaas. I think I mentioned that he's my pulmonary doc and the head of the transplant team.
We showed up at 7:50 and they called us right at 8:00. Yea! Yea! Yea! I only need to loose three more pounds! That's so exciting. My blood pressure was great and my O2 level was 99 (why in the world would I need a transplant with numbers like I had???)
The nurse gave me three pieces of paper and put Lee and I in a room (just as small as CA) and we were set to wait the "normal" 45 min - 1 hour but Khara - the other pre-transplant coordinator came into the room within ten minutes. She - like Lauren - are both RNs that specialize in lung transplants. They both are members of the transplant team and coordinate everything medical for the pre-transplant patients. It's sort of like having your own concierge at the hospital and clinic :-). Khara has just come back from maternity leave (she has a cute little baby girl named Kyneddy) and this is the first time Lee and I have met her. I asked if she was going to be my new coordinator and the great answer for me is no. I will have both Lauren and Khara - at least for a few months until Khara is back on board. Two for the price of one and just that much easier to get a hold of!
Anyway back to the appt...Khara asked a couple of medical questions and started reading my electronic chart. I asked if I could just have the Right Heart Cath tomorrow instead of both the Left and Right sides - it makes a huge difference in the procedure (Left requires an artery and Right only just requires a vein). Khara agreed that because I'd had a Left and Right done in October of last year then the Right is probably all I'd need. She'd ask Dr. Zaas. Other than that she was happy with my progress in Rehab and she left.
Next came Dr. Zaas. He is so nice. First question about our move - how did it go, etc. Then he asked how I like the Rehab program. As you probably have figured out by now, I am really impressed with the program. Dr. Zaas was glad to hear it and he told us that a couple of weeks ago he as visiting another transplant program that asked him why Duke's numbers were so high (survival rate). He said he directly attributes it to their Pulmonary Rehab program - both before and after transplant. Good to know. He liked the weight loss and asked me to continue losing weight if I can...again there's a direct correlation between optimal weight and survival rate. When put that way how do you argue with continued dieting?
We discussed the heart cath and I do have to have both the Left and Right side done. He said he wants Duke to do the procedure because a few months ago they transplanted a man and a couple of weeks later he dropped dead from a heart attack. It had nothing to do with the transplant and they had no clue that he had significant heart issues that should show up on a heart cath. That said, I'll have both sides done. Dr. Zaas said if they do find heart problems they are VERY aggressive towards fixing them and it will not rule out a lung transplant - it will just require more work before the transplant.
We talked about the esophageal wrap surgery that I will probably have to have. It keeps acid in your stomach and doesn't let it go back up into the esophagus to ruin a new set of lungs. They do that surgery two to three weeks after the transplant.
After all the not fun discussions took place Dr. Zaas leaned back in his chair and said "why don't we try and move your PET Scan to next week so we can list you next Friday". Good thing I was sitting down because I was really surprised. He probably knew that because the first words out of my mouth were "Are you sure?" He was sure.
Then we talked about those nasty little anti-bodies that I have in my blood. You know...the ones that would attack 90 percent of the donor lungs I'd receive. He doesn't want to to the cleansing process (where they take out all the anti-bodies) because there is a stronger chance of infection. It's pretty much dialysis. I'm going to have a series of IV medications given over the next 4-5 weeks. They will kill off the anti-bodies. Meanwhile they try to match me up with a donor that doesn't have all those anti-bodies. He said that most people with anti-bodies get their transplant before they ever finish their IV treatments.
So now I'm really excited and really scared! Every time I think I've seen the reality of this situation something comes along to make it more real! End of next week....WOW! That means we will have to be available 24-7 and could get the call at any time. WOW! We're ready. Sure we are :=)
Amy called to see how the doctor's appt. went. When I told her about next week she was really surprised. She then asked what her responsibilities were as the back-up caretaker. You have to laugh or you'd probably cry so I'm laughing!!!
Amy got just as freaked out as Lee did when she heard what he was told last week. Flushing PIC lines. Cleaning Feeding tube clogs. Giving food through the feeding tube. Giving Insulin shots. Amy thought these sounded like jobs for a home health worker and shouldn't we have one? I explained it was really easy (according to the person who told us about it) and that they will train her and Lee in how to do this stuff. I'm going to quote Amy on my favorite and most reassuring comment she made during the conversation...."I don't know if I can give you a shot. I might faint." Oh joy! The only difference between Amy and Lee is that she voices her concerns and Lee keeps his to himself - but it's very obvious! Lucky for Amy that Michael's Aunt is a nurse. I suggested Amy discuss this with Carol so Carol can reassure her. Maybe Carol could reassure Lee -- and Me!
Not to worry though. I have complete confidence in both Amy and Lee. I love them and they love me so I'm sure they'll do well. Lee thought it would be a great idea to fly Vanessa out too as an additional support person. Oh you bet! This is the person who told me if I pulled out my own IV she'd have to hurt me! She watches House so she knows how that stuff can fly all over you! Poor Vanessa had to sit with me in the ER while I was still in Sacramento. We sat for hours and it gave me an opportunity to learn more about her. Let's see, she doesn't do needles (she too faints) and she doesn't do blood! The more I think about it, Vanessa would probably be a great addition to the support group! Either way, I'd love for her to come out for a long visit...you too Stephen. I love you guys and miss you!
They aren't the only ones we love and miss either! If ANYONE wants to sign up for the caretaker roll, feel free to call us or e-mail us. But don't feel bad if we don't get back to you right away because the list of interested parties will probably be really long :=)
I'll let you know how things are progressing.
Love to all,
Lee, Wendy and Missy
Monday, October 12, 2009
Week 2 of Rehab
As I was typing the title of this blog it came to me that our life is no longer measured in simple days or weeks..everything seems to revolve around my breathing - or lack thereof. I'm not sure that is a psychologically healthy way to look at things. I wonder - haven't yet asked - if Lee wouldn't prefer some non-problematic measurement. How about week 2 of our adventure? We'll probably try that one for a while.
Rehab started an hour earlier today - don't know why but I do know that we got out early and that was nice. I wasn't any less tired though :-) Worked out more on leg strengthening. Duke is obsessed with leg strength and I'm glad they are because I wasn't. The staff is incredible. They know every one's name that walks through that gym and why they are there and how they are doing. It's almost like watching a politician running for office when they walk through the place and say "hi there Ken. how is Sally (wife) and your kids? are both the boys still in soccer" It's not quite that bad but I'm really impressed because I haven't learned half of their names yet - thank heaven for name badges! Did I tell you that I have my own Duke Health badge for the gym? Everyone has one and the bar code on the back says what they are here for. We all have to "scan in" when we arrive...no "scan out" so I guess they don't care how long we are there.
I learned a valuable lesson today. When they suggest you bring snacks for your afternoon, they weren't kidding. I didn't bring anything except water today and I could sure tell by the time I headed to the bikes. I've been bringing 1/2 peanut butter sandwich, apple slices and low fat cheddar cheese. I missed the protein today. But I survived and they didn't half to drag me off the floor and take me to the ER!
When I left it was raining and for the first time since we arrived in NC I really thought it was cool outside...of course who would have brought an umbrella (it was sunny when I left the house) and who would have brought a jacket because it was sunny when I left the house :-) Needless to say I was real wet and real cold by the time I had trudged to the car...not sure how someone lugging oxygen can exactly trudge but it seems like that what I did.
I got home early today so Lee suggested we go to Sam's Club. I was all for it because we found that owning only one GPS is not a good thing when neither driver has a clue where they are going and both are driving separate places at the same time. As you've guessed we bought a second Garmin (yea!). Now I can venture out and know that eventually I'll get home!
Speaking of rain, Missy is definitely not into it. She sort of skulks down the sidewalk and tiptoes onto the grass to go potty. It's like she doesn't want to get any wetter than she has to. I don't think she has any concern at all for the poor dumb fool who's hold the other end of her leash and getting soaked! Tonight Lee tried the "I can't take her out because it's raining". Why? Will he melt? I don't think so. I took her out but he gets the next one and if she wakes us up in the night to go out I'm going to wake Lee up. Missy is just like any little kid...go wake up Mom and don't bother Dad. Why???? Lee is her best buddy all during the day but when the sun goes down it becomes me. I thought I'd gotten past that but I guess some things just go on and on!
Tomorrow morning we have Lee's doctor appointment (I wanted to share the wealth!). Actually he is meeting this doctor so he has one for medicine refills and so he get get a Doctor's clearance to join the gym. They have a long questionnaire and if you answer two of them with a "yes" then you need a clearance...I'd like to meet the one person who managed to answer that questionnaire with only one "yes"!!!
Tomorrow afternoon I meet a cardiologist who's going to do my Heart Catherization on Thursday. I hope he looks older than 12 and he has steady hands - my two criteria for success!
Because I have a Dr appt I get an excused absence from rehab. I'm surprised they didn't ask me to come in before and after the appt! I shouldn't make fun because I know when they are done with me I will be in really good shape for surgery and when I finish the program post-transplant I'll be in great shape and that's something I've never been!
Well I'm signing off because I have a lot of stockings to finish tonight and then it's off to bed.
Love,
Lee, Wendy and Missy
Rehab started an hour earlier today - don't know why but I do know that we got out early and that was nice. I wasn't any less tired though :-) Worked out more on leg strengthening. Duke is obsessed with leg strength and I'm glad they are because I wasn't. The staff is incredible. They know every one's name that walks through that gym and why they are there and how they are doing. It's almost like watching a politician running for office when they walk through the place and say "hi there Ken. how is Sally (wife) and your kids? are both the boys still in soccer" It's not quite that bad but I'm really impressed because I haven't learned half of their names yet - thank heaven for name badges! Did I tell you that I have my own Duke Health badge for the gym? Everyone has one and the bar code on the back says what they are here for. We all have to "scan in" when we arrive...no "scan out" so I guess they don't care how long we are there.
I learned a valuable lesson today. When they suggest you bring snacks for your afternoon, they weren't kidding. I didn't bring anything except water today and I could sure tell by the time I headed to the bikes. I've been bringing 1/2 peanut butter sandwich, apple slices and low fat cheddar cheese. I missed the protein today. But I survived and they didn't half to drag me off the floor and take me to the ER!
When I left it was raining and for the first time since we arrived in NC I really thought it was cool outside...of course who would have brought an umbrella (it was sunny when I left the house) and who would have brought a jacket because it was sunny when I left the house :-) Needless to say I was real wet and real cold by the time I had trudged to the car...not sure how someone lugging oxygen can exactly trudge but it seems like that what I did.
I got home early today so Lee suggested we go to Sam's Club. I was all for it because we found that owning only one GPS is not a good thing when neither driver has a clue where they are going and both are driving separate places at the same time. As you've guessed we bought a second Garmin (yea!). Now I can venture out and know that eventually I'll get home!
Speaking of rain, Missy is definitely not into it. She sort of skulks down the sidewalk and tiptoes onto the grass to go potty. It's like she doesn't want to get any wetter than she has to. I don't think she has any concern at all for the poor dumb fool who's hold the other end of her leash and getting soaked! Tonight Lee tried the "I can't take her out because it's raining". Why? Will he melt? I don't think so. I took her out but he gets the next one and if she wakes us up in the night to go out I'm going to wake Lee up. Missy is just like any little kid...go wake up Mom and don't bother Dad. Why???? Lee is her best buddy all during the day but when the sun goes down it becomes me. I thought I'd gotten past that but I guess some things just go on and on!
Tomorrow morning we have Lee's doctor appointment (I wanted to share the wealth!). Actually he is meeting this doctor so he has one for medicine refills and so he get get a Doctor's clearance to join the gym. They have a long questionnaire and if you answer two of them with a "yes" then you need a clearance...I'd like to meet the one person who managed to answer that questionnaire with only one "yes"!!!
Tomorrow afternoon I meet a cardiologist who's going to do my Heart Catherization on Thursday. I hope he looks older than 12 and he has steady hands - my two criteria for success!
Because I have a Dr appt I get an excused absence from rehab. I'm surprised they didn't ask me to come in before and after the appt! I shouldn't make fun because I know when they are done with me I will be in really good shape for surgery and when I finish the program post-transplant I'll be in great shape and that's something I've never been!
Well I'm signing off because I have a lot of stockings to finish tonight and then it's off to bed.
Love,
Lee, Wendy and Missy
Friday, October 9, 2009
End of the first week!
Wow, this week didn't come to a close any time too soon! I am absolutely exhausted. Even though I'm so tired, it is a good kind of exhaustion. I wasn't sure I'd be able to finish everything every day but somehow I did it.
I really like all the staff. There must be at least 15 respiratory therapists plus some other people that I'm not sure what their title is. We don't all get one-on-one treatment (no personal trainers!) but someone seems to always be there if you need anything at all. Everyone is very encouraging even when you feel like you're ready to fall down.
I better understand why the program doesn't let the spouse or caregiver attend rehab. They explained that their experience has shown that caregivers have a tendency to "hover" or worry too much and it can interfere with the patient's progress. I can think of a couple of times this week that I would have loved to have had Lee there so he could step up and say I looked just to weak to continue!! Just kidding because I know I have to give it everything I have because I owe it to my future donor to make my body as healthy as it can be prior to transplant. When I think about getting a transplant someday it really motivates me to work even harder than I have been. This may seem to morbid for some of you - and if it is I apologise -but I know that the only way I'm going to be given a new life is for someone else to die. I owe it to that person's family to give it everything I have and more.
Now on to other topics...Lee got new tires on his truck today. His still had plenty of tread but there has to be a max number of years they are good for. The truck is a 1998 and had original tires! The man needs to drive his truck more!!!! ;=)
We haven't finished unpacking my craft/embroidery room but last night we put a little dent in it. We don't want to hammer nails in apartment walls so I bought shelving units to put in the closet to store my extra stuff that was in all of my cupboards in CA. We'll keep unpacking and setting up tomorrow and Amy is coming out on Sunday so we can sew. We are putting together an order for a woman that Amy met. That will be nice.
Then after Sunday it all starts again. Next week, in addition to rehab, I have my first medical appointment with Dr. Zaas (my pulmonologist). I'm really looking forward to it because we have lots of questions. I also want to know how close I've gotten to losing the 10 pounds I need to shed! I also see the cardiologist on Tuesday and have my second heart cath on Thursday (they will let me take that day off of rehab).
Well I'm ready for bed. We sure miss everyone in CA and we hope everybody is doing great!
Love,
Lee, Wendy and Missy
I really like all the staff. There must be at least 15 respiratory therapists plus some other people that I'm not sure what their title is. We don't all get one-on-one treatment (no personal trainers!) but someone seems to always be there if you need anything at all. Everyone is very encouraging even when you feel like you're ready to fall down.
I better understand why the program doesn't let the spouse or caregiver attend rehab. They explained that their experience has shown that caregivers have a tendency to "hover" or worry too much and it can interfere with the patient's progress. I can think of a couple of times this week that I would have loved to have had Lee there so he could step up and say I looked just to weak to continue!! Just kidding because I know I have to give it everything I have because I owe it to my future donor to make my body as healthy as it can be prior to transplant. When I think about getting a transplant someday it really motivates me to work even harder than I have been. This may seem to morbid for some of you - and if it is I apologise -but I know that the only way I'm going to be given a new life is for someone else to die. I owe it to that person's family to give it everything I have and more.
Now on to other topics...Lee got new tires on his truck today. His still had plenty of tread but there has to be a max number of years they are good for. The truck is a 1998 and had original tires! The man needs to drive his truck more!!!! ;=)
We haven't finished unpacking my craft/embroidery room but last night we put a little dent in it. We don't want to hammer nails in apartment walls so I bought shelving units to put in the closet to store my extra stuff that was in all of my cupboards in CA. We'll keep unpacking and setting up tomorrow and Amy is coming out on Sunday so we can sew. We are putting together an order for a woman that Amy met. That will be nice.
Then after Sunday it all starts again. Next week, in addition to rehab, I have my first medical appointment with Dr. Zaas (my pulmonologist). I'm really looking forward to it because we have lots of questions. I also want to know how close I've gotten to losing the 10 pounds I need to shed! I also see the cardiologist on Tuesday and have my second heart cath on Thursday (they will let me take that day off of rehab).
Well I'm ready for bed. We sure miss everyone in CA and we hope everybody is doing great!
Love,
Lee, Wendy and Missy
Wednesday, October 7, 2009
Thoughts about all this...
Well Lee and I have been in NC almost two weeks and I've been in rehab for three days. We still haven't finished unpacking but with the way they kick our butts in rehab I should be buff enough in another week to unpack everything in an hour or two!!! I'm not serious but I will say that I think I'm going to be a LOT stronger after this program.
Here's what's going through my mind - and it's a bit weird - since we arrived in NC, my breathing has gotten so much better that I'm wondering if the Doc is going to say I'm not sick enough for a transplant. That would just be a mixed bag of tricks...yea that I'm not that sick but boo because some day I will be.
So...it makes me wonder if I am improved - for whatever reason - will they send us back to CA or will they tell us we need to stay in NC a lot longer than we planned. Either way things would be interesting.
I may just be borrowing trouble but I really have been breathing better for over a week. I'll keep everyone posted on this one.
I go see the cardiologist on the 13th because I have to have another Heart Cath on the 15th. I go see my pulmonologist - Dr. Zaas - on the 14th. I am really lucky to have him. He's the head of the program and really nice.
On the 20th I have to go to the GI Lab and have this AWFUL test re-done. You have to swallow a probe (they say it's really small and I say it's really big!) and keep it down for 24 hours while you eat. It tests your acid reflux. It's nasty and it hurts your throat!
Then the last test I know about for the time being is on the 22nd when I have a PET Scan of my chest. The last CT scan showed a tiny little nodule in my upper right lobe of my lungs. They want to make sure it's not cancer. They aren't worried about that so neither am I.
I've met several patients that have had their transplants and they have been both helpful and uplifting. I met another patient this evening while I was waiting at Walgreens for a prescription. He and his wife were waiting for a script too. Small world...especially around Duke. This man recognized me from rehab because I may not have mentioned it but you have to go to 23 days of rehab before AND after transplant. He was real nice and he gave me a lot of comforting info...I'm always grateful for that. His wife told me about a support group for caregivers that Lee can go to. It will be so good for him to meet other people going through what he is. His perspective is definitely different than mine and just as stressful!
Well time for dinner and bed!
Love,
Lee, Wendy and Missy
Here's what's going through my mind - and it's a bit weird - since we arrived in NC, my breathing has gotten so much better that I'm wondering if the Doc is going to say I'm not sick enough for a transplant. That would just be a mixed bag of tricks...yea that I'm not that sick but boo because some day I will be.
So...it makes me wonder if I am improved - for whatever reason - will they send us back to CA or will they tell us we need to stay in NC a lot longer than we planned. Either way things would be interesting.
I may just be borrowing trouble but I really have been breathing better for over a week. I'll keep everyone posted on this one.
I go see the cardiologist on the 13th because I have to have another Heart Cath on the 15th. I go see my pulmonologist - Dr. Zaas - on the 14th. I am really lucky to have him. He's the head of the program and really nice.
On the 20th I have to go to the GI Lab and have this AWFUL test re-done. You have to swallow a probe (they say it's really small and I say it's really big!) and keep it down for 24 hours while you eat. It tests your acid reflux. It's nasty and it hurts your throat!
Then the last test I know about for the time being is on the 22nd when I have a PET Scan of my chest. The last CT scan showed a tiny little nodule in my upper right lobe of my lungs. They want to make sure it's not cancer. They aren't worried about that so neither am I.
I've met several patients that have had their transplants and they have been both helpful and uplifting. I met another patient this evening while I was waiting at Walgreens for a prescription. He and his wife were waiting for a script too. Small world...especially around Duke. This man recognized me from rehab because I may not have mentioned it but you have to go to 23 days of rehab before AND after transplant. He was real nice and he gave me a lot of comforting info...I'm always grateful for that. His wife told me about a support group for caregivers that Lee can go to. It will be so good for him to meet other people going through what he is. His perspective is definitely different than mine and just as stressful!
Well time for dinner and bed!
Love,
Lee, Wendy and Missy
Monday, October 5, 2009
Pulmonary Rehab at Duke - The First Day
Well, since I've still got the energy to write tonight, I'm thinking rehab will be good.
My program has several parts to it....Every day at 12:30 we check in; do floor exercises; do walking; do weight machines; do bicycling; have lecture. It ends at 4:30. Twice a week Lee comes in with me at 11:30 for the Transplant Lectures.
Today was a transplant lecture and it was about "What to expect". Well I know my eyes, as well as Lee's eyes are a little more open. Cindy, one of the Post Transplant Coordinator taught the class and discussed different considerations after surgery. They include:
My program has several parts to it....Every day at 12:30 we check in; do floor exercises; do walking; do weight machines; do bicycling; have lecture. It ends at 4:30. Twice a week Lee comes in with me at 11:30 for the Transplant Lectures.
Today was a transplant lecture and it was about "What to expect". Well I know my eyes, as well as Lee's eyes are a little more open. Cindy, one of the Post Transplant Coordinator taught the class and discussed different considerations after surgery. They include:
- Ventilators and chest tubes -- she said it was really important to realize that you will be on a ventilator up to a few days (depending on a lot of different things). She said one caregiver saw his wife after surgery and while the team thought she looked great he passed out cold from the shock of the ventilator and all the tubes! I'm glad Lee was listening!!!
- Pain -- Said you'll have an epidural from the neck down for a while and then they'll switch you to pain meds. I could deliver a baby at the same time!!! I didn't mention to her that I'm allergic to all the "good" stuff! The docs do know that.
- TCDB (Turn - Cough - Deep - Breathe). Cindy said that this will be REALLY painful but it's really important so you don't get pneumonia.
- Walking -- Cindy said that walking helps you heal faster and -- more importantly -- it really makes your surgeon happy! She suggested asking the nurses for a heads up for when the surgeon is coming and then you can go out into the hallway to make it look like you are doing laps!
- Medications -- There is a whole class dedicated to the post-transplant meds and Lee and I will be taking that the first part of November.
Cindy then explained how there are some things that you should do every day for the rest of your life to make sure you stay well and don't reject your new lungs. She explained that most people don't feel any symptoms of rejection...that's a little scary!
After the class Lee went back to the apartment and I started the rest of Rehab.
Checking in was pretty simple.
Then we all went to the floor exercises. They had me watch today so I'd have a good idea of how it works before I start out. Everyone gets a mat and ankle weights and dumb-bells and finds a spot on the floor. Then one of the Rehab therapists sits on her mat in the middle and gives instructions. There are so many people that she uses a microphone so everyone can hear her. We do stretching and dumb bells and leg lifts and bands. I was using the dumb-bells and bands in my chair today and my upper arms are really sore already! I guess I'll get buff!
Then we went to different "stations". I started with walking. They had me walk around the track for 15 minutes and tracked my oxygen saturation numbers. Because today was a "good breathing day" for me I did fine but I was feeling it in my legs because I think I might walk faster than I should.
Next was weight machines. Today I concentrated on legs and tomorrow will be upper body. It alternates every other day. After using seven different machines my legs were getting a little wimpy.
Next was bicycling. Fortunately for me I got assigned today to the Nustep machine. It lets you use your arms to help move your legs (at least that's what I've always thought). I HATE bicycling...my legs start to burn after a couple of minutes! I did the Nustep for 15 minutes at level 3. It was good but this was the third station so my legs were really getting tired.
Last, we went to a lecture. This one was given by the head of Nutrition and it was about eating well with breathing problems. It was really interesting. While a lot of us knew a lot of info, he shared new stuff about studies they have done pertaining to diets and Breathing ability.
Apparently they have actually linked better breathing with higher servings of Fruits and Veggies! That's good for me because I like those. Also learned that Fat requires less oxygen to burn energy than other foods. Because of that they are now recommending a change to the old food pyramid to have pulmonary patients eat more Fats and less Starch. We then talked about the good and the bad fats. We still can't eat all the fatty meats (you know...the ones that taste really good!)
All in all it was really interesting. Did you know that walnuts are high in Omega 3? I didn't! Did you know that consuming dairy products (milk and yogurt) will actually lower blood pressure?
OK, my last Trivial Pursuit tidbit...You should space out your calcium tablets (if you are taking them) because if you take them all at once they will actually reduce the amount of calcium you get...pretty weird. He also said that you shouldn't take your first supplement right after you have your milk and cereal or your yogurt (that's calcium too!)
My work day completed and Lee came back to get me. We didn't go on errands and we didn't pass Go...we came straight home. It's now 8:40 here and I'm going to bed so that I'm rested enough for tomorrow!
Take care everyone!
Love,
Lee, Wendy and Missy
Sunday, October 4, 2009
Finishing the Apt and Getting Ready For Rehab
Well, we've finished - for the most part - setting up the apartment. It will take the whole time we are in the apt to really complete things but except for the craft room we are 95 percent done.
This is the living room as you walk in from the front door.
This is the living room as you are standing in the dining room. Emily and Brandon...do you see Shooter Bunny? We couldn't leave Sacramento without him!!!
This is supposed to be the dining room. It's such a good thing that we didn't bring our dining room table because it would be sitting in a different room!
We have all the boxes stacked because we are still waiting for the garage to open up so that we can store all these boxes and other things. They told us that our garage will become available some time in October - none too soon!!!!
While we didn't buy a dining room set, we do have a gorgeous solid wood dining table for our kitchen area...isn't it great?
Don't mind how we look because we had been unpacking for about three hours before we stopped for breakfast.
This is our bedroom. Lee's dresser and the closets are behind me.
And then there's my craft room! I haven't started organizing it yet. The closet is full of boxes and totes! Hopefully it will be done in time for Christmas gift making!!!
Here are some pics of our new home (apt):
This is the living room as you walk in from the front door.
You can see we haven't hung the pictures!
This is the living room as you are standing in the dining room. Emily and Brandon...do you see Shooter Bunny? We couldn't leave Sacramento without him!!!
Missy likes to hang out wherever we are.
This is supposed to be the dining room. It's such a good thing that we didn't bring our dining room table because it would be sitting in a different room!We have all the boxes stacked because we are still waiting for the garage to open up so that we can store all these boxes and other things. They told us that our garage will become available some time in October - none too soon!!!!
While we didn't buy a dining room set, we do have a gorgeous solid wood dining table for our kitchen area...isn't it great?Don't mind how we look because we had been unpacking for about three hours before we stopped for breakfast.
This is the kitchen eating area and the island. We had to buy the two storage units shown next to the windows. There was definitely not enough storage in this kitchen!
This is some more of the kitchen. Behind me is the stove/oven, fridge and pantry (I use that term loosely!!).
This is our bedroom. Lee's dresser and the closets are behind me.
This is the master bathroom. If you have ever been in our house then you know that this bathroom is gigantic compared to our bathroom in CA! Lee and I aren't used to the fact that we can both get ready in the room without tripping over each other.
This is the 2nd bathroom. It is really nice sized also but it only has two plugs! Oh well, we can't complain because we mainly use the room to keep my oxygen concentrator in.
And then there's my craft room! I haven't started organizing it yet. The closet is full of boxes and totes! Hopefully it will be done in time for Christmas gift making!!!So, that's our new home. We like it. It will be just right while we are working with Duke. Speaking of Duke, I start my rehab tomorrow. Lee asked me yesterday if I was getting nervous and I said "no, of course not". Well I need to retract that statement because I really have the jitters.
This is it. This is why we came out here. There's no more pretending or saying "someday"...we are in the here and now. It is a little overwhelming for both of us. I have confidence that once I get started it will be fine but I know the program is VERY demanding.
I'll blog tomorrow night about what the first day was like.
I hope everyone is well and we send you our love,
Lee, Wendy and Missy
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