Well I'm finally on my way home. I've been in the hospital since last Friday. I was admitted for a couple of different things...shortness of breath and weakness. At first we all thought the weakness was due to my flareup but we have since figured out that most of the weakness is due to the drugs I was given and the pheresis treatments.
Apparently I have a bit of neuropathy going on in my left left/foot and in my right arm/hand. They did a nerve conduction test and an EMG (a muscle test that's not all that comfortable). The tests showed some myopathy but they didn't know yet if it was getting better or worse. They want to repeat the test in a few weeks and have me get a brain scan (I'd finally know if I had one!!!). The tx team doc said that as long as I was comfortable with it I'd get discharged today and see Dr. Zaas next Wednesday. At that point they will decide if I should have a brain scan or not. They would just do it out-patient.
I still feel weak as can be but I decided this morning that I have my baseline set too high. I keep pushing myself to reach a level of ability that I had several months ago. Then I get frustrated with myself that I can't achieve it!
Three months ago...I didn't use my walker; I didn't stop at each doorway to catch my breath before I kept moving; I didn't get worn out chewing steak or chicken or other "firmer" foods; I could talk on the telephone without having to hang up because I didn't have any breath left; I had enough strength to pick up a jar of spaghetti sauce; I could reach down and pick things up off the floor; etc.
None of that is possible now so logic says that I have my new baseline. By knowing this I can measure progress and slippage. I won't get frustrated if I dip a little because it's from my new baseline - not the old!
Lee was so awesome this week! He came every day and brought me whatever I needed and didn't wake me up when he came if I was sleeping. One day he brought Dominoes to play and another day he brought playing cards. Both were easy to use on my table tray. They were really fun diversions from the rest of the day...you gotta love him! He also found sugar-free wafer cookies that are really good. I'm still struggling with the diabetes and it's gotten more active with the steroids.
Other than medical stuff, we've been developing our "Things to do Post-Transplant" list. There are so many things that I can't do now due to breathing issues. Number One on my list is Disneyworld the first week in December. We've never been to Disneyworld and we've never been to Disneyland when it's decorated for Christmas. That will be soooo fun. Of course that trip will probably bankrupt us (but it's so important that the cost isn't as important as it should be). We had better to plan the other activities so they don't cost much :-) Going back to CA for Christmas this year is a really big want for both of us. We're hoping we can make it!!!!
I hope everyone is having a super summer. We really are having a good time here even though it sounds sort of "sick". We've made friends through the church we attend and a couple in the apartment. Lee and I are learning to appreciate the very little things...like just sitting next to each other holding hands and watching House reruns from our DVR or sitting across from each other while we each play Sudoku.
Life really is good even when you can't breathe!!!
We love all of you and wish you a great weekend,
Lee, Wendy and Missy
Thursday, July 8, 2010
Saturday, July 3, 2010
The Good, The Bad and The Fabulous
Happy 4th of July weekend to everyone!!!
The first of July brought a little bit of everything...
The Good -- I finished my last pheresis treatment yesterday. Yay! :-)
The Bad -- I'm back in the hospital for another flare up. Boo! :-(
The Fabulous -- It looks like the treatment regimin is WORKING. Yay! Yay! Yay! Praise the Lord!
Even though it has been remarkably taxing to go through this treatment, it was well worth it to have some results. I got an e-mail yesterday from Lauren that read:
"Just received this from Dongfeng. Yeah!!!! 'Good news: a significant reduction of antibodies on serum dated 6/30/10 was observed. For detailed results please review the reports in eBrowser. Please send a new serum sample to confirm'
Lauren was so excited that she called Dr. Zaas with the news in case he hadn't opened his e-mails. Dr. Zaas was very happy. I know that he, along with the whole team, are pretty anxious to get me transplanted. They will run another follow-up blood test this weekend while I'm staying at the Duke University Medical Spa Resort (don't I wish!).
I'm in the hospital again because of a flare up. They don't know if it's the result of the pheresis/drugs just taking a toll on my body or if it's something else. I guess to them it doesn't really matter why...they just want to get me up and back to rehab. Boy, it always comes around to that one thing - exercise. I can't tell you how big a difference the working out has made on me. I know, without a doubt, I'd be much worse were it not for rehab. I groan to myself sometimes when I just don't want to get going but then when I get there it's fine. In fact often I feel better after it than before. Anyone who doesn't have exercise as a basic part of their week should sure give it a try. It'll make you healthier and stronger...can't beat that!
It appears that I may have a bit of neuropathy going on in my left leg. That's not too surprising because it is one of the big side effects of the Bortezemib. Dr. Palmer (tx doc who's on call this weekend) will be putting me on some kind of med for it and hopefully it won't be permanent.
I don't remember if I mentioned my dropping blood pressure...pheresis can cause your bp to drop so, of course, mine has been! I sometimes feel like a walking billboard of "if there's a side effect, I'll get it). Anyway, my bp was down to 77 / 50 last week and yesterday and last night if would drop down to low 80s / 40s. It seems to come back up for a while and then drops again...makes for interesting walking :-)
They are giving me IV lasix to pull the water off of me. I can't believe it...I was up all night! I think they are trying to wring every drop of fluid out of me. I'm going to look like a prune! There's an up side and a down side to lasix. Up side...if I have extra fluid it affects how well I can breathe. Drain it off and my breathing should get better. Down side...low fluid levels will drop my blood pressure...like I need that already :-) The docs explained to me that they prefer better breathing over higher blood pressure so we have it...the lasix wins out!
I met a new person this week in rehab. She's from Dallas, TX and she has been listed, in Dallas, for three years. Her tx doctor gave her a brochure from Duke about lung transplants and suggested she consider it. She, like me, has somewhat high antibodies and Dallas just couldn't handle it. She came out hear for an evaluation and transferred her listing to Duke. She was really glad to meet me because she's never met anyone else with high antibodies. I encouraged her and told her that my rehab buddies with high antibodies responded to the primary treatment and they have been transplanted and are back home already. I think that made her feel more comfortable. I sometimes think my new role in life is to keep my spirits up so I can help others keep theirs up! That's not a bad thing if you think about it.
Well, since I was up most of the night due to the high dose of prednisone they gave me yesterday (100 mg) I'm going to try to take a nap before they give me Solumedrol today. It's even worse than prednisone!
Take care and give yourself a big hug from us!
Lee, Wendy and Missy
The first of July brought a little bit of everything...
The Good -- I finished my last pheresis treatment yesterday. Yay! :-)
The Bad -- I'm back in the hospital for another flare up. Boo! :-(
The Fabulous -- It looks like the treatment regimin is WORKING. Yay! Yay! Yay! Praise the Lord!
Even though it has been remarkably taxing to go through this treatment, it was well worth it to have some results. I got an e-mail yesterday from Lauren that read:
"Just received this from Dongfeng. Yeah!!!! 'Good news: a significant reduction of antibodies on serum dated 6/30/10 was observed. For detailed results please review the reports in eBrowser. Please send a new serum sample to confirm'
Lauren was so excited that she called Dr. Zaas with the news in case he hadn't opened his e-mails. Dr. Zaas was very happy. I know that he, along with the whole team, are pretty anxious to get me transplanted. They will run another follow-up blood test this weekend while I'm staying at the Duke University Medical Spa Resort (don't I wish!).
I'm in the hospital again because of a flare up. They don't know if it's the result of the pheresis/drugs just taking a toll on my body or if it's something else. I guess to them it doesn't really matter why...they just want to get me up and back to rehab. Boy, it always comes around to that one thing - exercise. I can't tell you how big a difference the working out has made on me. I know, without a doubt, I'd be much worse were it not for rehab. I groan to myself sometimes when I just don't want to get going but then when I get there it's fine. In fact often I feel better after it than before. Anyone who doesn't have exercise as a basic part of their week should sure give it a try. It'll make you healthier and stronger...can't beat that!
It appears that I may have a bit of neuropathy going on in my left leg. That's not too surprising because it is one of the big side effects of the Bortezemib. Dr. Palmer (tx doc who's on call this weekend) will be putting me on some kind of med for it and hopefully it won't be permanent.
I don't remember if I mentioned my dropping blood pressure...pheresis can cause your bp to drop so, of course, mine has been! I sometimes feel like a walking billboard of "if there's a side effect, I'll get it). Anyway, my bp was down to 77 / 50 last week and yesterday and last night if would drop down to low 80s / 40s. It seems to come back up for a while and then drops again...makes for interesting walking :-)
They are giving me IV lasix to pull the water off of me. I can't believe it...I was up all night! I think they are trying to wring every drop of fluid out of me. I'm going to look like a prune! There's an up side and a down side to lasix. Up side...if I have extra fluid it affects how well I can breathe. Drain it off and my breathing should get better. Down side...low fluid levels will drop my blood pressure...like I need that already :-) The docs explained to me that they prefer better breathing over higher blood pressure so we have it...the lasix wins out!
I met a new person this week in rehab. She's from Dallas, TX and she has been listed, in Dallas, for three years. Her tx doctor gave her a brochure from Duke about lung transplants and suggested she consider it. She, like me, has somewhat high antibodies and Dallas just couldn't handle it. She came out hear for an evaluation and transferred her listing to Duke. She was really glad to meet me because she's never met anyone else with high antibodies. I encouraged her and told her that my rehab buddies with high antibodies responded to the primary treatment and they have been transplanted and are back home already. I think that made her feel more comfortable. I sometimes think my new role in life is to keep my spirits up so I can help others keep theirs up! That's not a bad thing if you think about it.
Well, since I was up most of the night due to the high dose of prednisone they gave me yesterday (100 mg) I'm going to try to take a nap before they give me Solumedrol today. It's even worse than prednisone!
Take care and give yourself a big hug from us!
Lee, Wendy and Missy
Thursday, July 1, 2010
Coming to the end of Pheresis
I am so glad to be able to type that title! Pheresis just kicks my butt and when they add the bortezimib...I am wiped out! Dr. Zaas said yesterday that I looked puny. That really does sum me up!
Yesterday I had a clinic appointment and they did draw blood so I should have my antibody test results by the end of next week. Wow am I hoping and praying for good results.
The clinic appointment was the normal stuff... blood work, chest x-ray, PFT and ABG. My PFT (pulm function test) shows I've lost more lung volume. When we came to Duke my FEV1 was 39%. At the end of January it was 28%. Yesterday it was 18%. These are some of the reasons the docs (and Lee and I) are anxious to find lungs!
Actually, I've been sickly lately. I hate to say I've been sick because I want to kick whatever this is :-) Dr. Zaas gave me until this Saturday morning to get better. If not...back to the hospital. I think both Lee and I could find our way there with our eyes closed...we really will keep them open so Lee isn't added to the patient list! None of us really know what's going on with me. My PFT has dropped significantly and I am hugely short of breath (is hugely a word?). I often need to stop and rest when I'm walking from the bedroom to the kitchen in our apartment. That's getting really old to me.
I told Dr. Zaas that I'm not enjoying this one little bit. He wants me back in rehab as soon as possible - what a surprise :-) They don't want you away from the gym for any reason except hospitalization. I've been trying to get to the gym between treatments but some days it just didn't happen. Today I walked on the track with my walker. I did 5 laps (1/3 mile) in 20 minutes. That is an improvement over Tuesday's 4 laps!
Let's move to something more fun -- the sweltering weather. OMG it has been so stinking hot and humid here and it's affecting Lee even more than me! A couple of days ago Khara told me to just stay home because it was so awful out. The transplant coordinators have to walk about 1/2 - 3/4 of a mile from their offices to the Duke Clinic. It was Khara's turn at clinic and she said she was short of breath from her walk and she doesn't have lung disease! After about two weeks of these temperatures, it finally rained yesterday morning. That brought both the humidity and temperatures down - yay! Four days in the 80s. We're loving it!
We really are missing our friends and family in CA. It would be so great if we could make a trip back but right now I can't even consider an airplane and neither of us are up to another cross-country trek! We'd love for you to come out here!! I'm sure the weather would improve - didn't you say it got better Vanessa?
Well, all for now. Safe and Fun 4th to everyone!
Love,
Lee, Wendy and Missy
Yesterday I had a clinic appointment and they did draw blood so I should have my antibody test results by the end of next week. Wow am I hoping and praying for good results.
The clinic appointment was the normal stuff... blood work, chest x-ray, PFT and ABG. My PFT (pulm function test) shows I've lost more lung volume. When we came to Duke my FEV1 was 39%. At the end of January it was 28%. Yesterday it was 18%. These are some of the reasons the docs (and Lee and I) are anxious to find lungs!
Actually, I've been sickly lately. I hate to say I've been sick because I want to kick whatever this is :-) Dr. Zaas gave me until this Saturday morning to get better. If not...back to the hospital. I think both Lee and I could find our way there with our eyes closed...we really will keep them open so Lee isn't added to the patient list! None of us really know what's going on with me. My PFT has dropped significantly and I am hugely short of breath (is hugely a word?). I often need to stop and rest when I'm walking from the bedroom to the kitchen in our apartment. That's getting really old to me.
I told Dr. Zaas that I'm not enjoying this one little bit. He wants me back in rehab as soon as possible - what a surprise :-) They don't want you away from the gym for any reason except hospitalization. I've been trying to get to the gym between treatments but some days it just didn't happen. Today I walked on the track with my walker. I did 5 laps (1/3 mile) in 20 minutes. That is an improvement over Tuesday's 4 laps!
Let's move to something more fun -- the sweltering weather. OMG it has been so stinking hot and humid here and it's affecting Lee even more than me! A couple of days ago Khara told me to just stay home because it was so awful out. The transplant coordinators have to walk about 1/2 - 3/4 of a mile from their offices to the Duke Clinic. It was Khara's turn at clinic and she said she was short of breath from her walk and she doesn't have lung disease! After about two weeks of these temperatures, it finally rained yesterday morning. That brought both the humidity and temperatures down - yay! Four days in the 80s. We're loving it!
We really are missing our friends and family in CA. It would be so great if we could make a trip back but right now I can't even consider an airplane and neither of us are up to another cross-country trek! We'd love for you to come out here!! I'm sure the weather would improve - didn't you say it got better Vanessa?
Well, all for now. Safe and Fun 4th to everyone!
Love,
Lee, Wendy and Missy
Tuesday, June 15, 2010
Finally Pheresis!
Today is Tuesday June 15th and I have had my first treatment of pheresis. The bortezimib is done and the rituximab is almost done...it's been a very long day!!!
I was admitted to the hospital yesterday for this treatment and I thought it would be started yesterday but I guess they wanted to start fresh this morning. I can understand that since they showed up at 8:30 this morning and I'm still being treated (it's 7:40 p.m.)
So...pheresis is more...and less...than I was expecting. Phil, The Pheresis Man, arrived at my door with lots of equipment. He brought blood pressure monitors, and stands for IVs and a huge machine that looked sort of like an sci fi contraption on wheels. It had a bunch of empty bags hanging down from it. This is a picture of the machine and Phil during treatment.
And of course here's a picture of Lee taking Missy to Sunny Acres Pet Resort. She looks really happy in this pic. Apparently when she got there it was a different story! Lee said she sunk to the ground and they had to pull her through the doorway. I say she did that to make Lee feel bad - not because it's a bad place!
I was admitted to the hospital yesterday for this treatment and I thought it would be started yesterday but I guess they wanted to start fresh this morning. I can understand that since they showed up at 8:30 this morning and I'm still being treated (it's 7:40 p.m.)
So...pheresis is more...and less...than I was expecting. Phil, The Pheresis Man, arrived at my door with lots of equipment. He brought blood pressure monitors, and stands for IVs and a huge machine that looked sort of like an sci fi contraption on wheels. It had a bunch of empty bags hanging down from it. This is a picture of the machine and Phil during treatment.
This is a "lovely" picture of me with my tubes! The tube on the far right is my oxygen tube (4L and holding at rest). The other tubes come from the catheter shown to the left. It is a good sized tube that they inserted last Wednesday (using really good drugs thank you very much!). The tube is inserted under the skin on my chest and up until it goes down into my neck...yes, that's as gross as it sounds ;-)
The single tube splits and has an "in" tube and an "out" tube. This catheter was put in solely for phereses and even though I have this huge thing in my chest, the nurses at the hospital still had to put in another IV for their use - no one messes with pheresis tubing except pheresis people! The wrap around my arm is to monitor my blood pressure.
So my take on Phil's explanation of pheresis is...The big machine sucks in my blood via the "out" tubes. The blood goes down into a centrifuge and spins it. The blood is separated by weight...red blood cells against the wall of the centrifuge because they are the heaviest. Then white cells, then platelets, then plasma. The plasma is then pulled away and "bagged up" for disposal (it has my nasty antibodies in it!). Then this yellow stuff called albumin (processed plasma) is mixed back with my blood to replace the plasma that was removed. The blood is then sucked back into the "in" tube. It's wrapped around heating coils to warm up and then it enters my body at the catheter site.
This is a picture of Phil showing Lee the centrifuge in action (there is a glass window to look down into it). They both thought it was very cool!
A mathmetical calculation determines how much plasma I have in my blood. It's based on my height, weight, and blood volume. I had a little over 2,400 ml of plasma. Phil continued the process until they had bagged all my "bad" plasma and replaced in with "good" stuff. We Hope!!!
Here is a picture of me at the end of the process holding my bad plasma! Lee asked Phil what they did with the plasma they took out of me. Phil said it depends. On Wednesday it's for Chicken Noodle Soup and on Thursdays it's for Birds Nest Soup. Sounds good to me :-) Actually they just toss it. I thought they should keep it and try and figure out why my antibodies are different and won't go away!
Anyway, after pheresis (which ended around 11:30) I was given solumedrol - the "super prednisone" that gave me diabetes, tylenol and IV benadryl. Then the chemo nurse came up to administer the bortezimib. It was one quick shot of drugs into my IV port. Then...the rituximab regimen started at 2:00 p.m. It's now 8:45 p.m. and I'm still getting rituximab. This is a really long day! All in all, I did really well with the treatments. I felt a little light headed at times but nothing significant and my blood pressure went sort of low but when I explained that I always have low pressure Phil felt a lot better.
On Friday I have my next round but, thankfully, there won't be any rituximab. It should only take around 3-4 hours instead of 13! That treatment will be outpatient at Duke South Oncology lab.
Lee and I drove down to Sanford to see Stephen and Vanessa at Dale and Lorie's. It was really fun. We enjoyed seeing them and Dale and Lorie were so nice and great hosts! We visited with Stephen, Vanessa and Amy on the first day and Stephen and Vanessa and Lee and I drove to Pinehurst on day two. That is a really nice place! Here are a few pics from our visit...
Lee and Vanessa! They are so cute together!
And of course here's a picture of Lee taking Missy to Sunny Acres Pet Resort. She looks really happy in this pic. Apparently when she got there it was a different story! Lee said she sunk to the ground and they had to pull her through the doorway. I say she did that to make Lee feel bad - not because it's a bad place!We wish everyone a great rest of June and a safe 4th of July if I don't blog.
Love,
Lee, Wendy and Missy
Saturday, June 5, 2010
It's the first of June...
Hi everyone!
I had posted about having pheresis done in May but we have been waiting for the insurance company to give their blessing.
The approval finally came through late yesterday (8:00 p.m. EST) Because it was so late it looks like nothing will get started until next week. In defense of the insurance company, the treatment regimin has never been given to a lung transplant patient so Blue Cross had nothing to compare the request to.
My problem is two-fold -- 1) high antibodies and 2) I didn't respond to the first two treatment plans. Dr. Zaas had numerous conversations with some docs at the Cleveland Clinic about how they treated Kidney transplant patients with these same response problems. After those conversations the Duke docs came up with this game plan that needed to be approved by Blue Cross...
Day 1: plasmapheresis (1-1.5 plasma volumes) w/ citrate dextrose and 5% albumin replacement
solumedrol 100mg
bortezomib (1.3mg/m2) over 3-5 seconds
rituximab (375mg/m2)
Day 4: plasmapheresis
solumedrol 100mg
bortezomib
Day 8: plasmapheresis
solumedrol 50mg
bortezomib
Day 11: plasmapheresis
solumedrol 50mg
bortezomib
Day 14: plasmapheresis
Day 16: plasmapheresis
Day 18: plasmapheresis
I'll be in the hospital for the first set of treatments. Then - if I tolerate it well - I can take the remaining treatments outpatient.
Normally the treatment plan would start this Monday but I will be out of town until Tuesday or Wednesday so I guess they will start it on Thursday. We were all hoping to get the initial dose in before I left town but it just didn't happen.
That's the update on the medical part of our lives. Now for the rest...
Lee and I are traveling to Sanford, NC because Stephen and Vanessa flew in to see Dale and Lorie (Stephen's dad and step-mom) and they live in Sanford. Amy and Michael are going to be there too. Dale and Lorie rented a house for their guests to stay in and they very graciously said Lee and I were welcome to come and stay in the house too so that we can see the kids. I'm really looking forward to that because I haven't seen Stephen and Vanessa since we moved!
Lee, Amy, Michael and I went to the Durham Bulls baseball game and it was fun for the first two innings and then the torrential rain and thunder and lightening started. OMG it was wild!!! We don't get that kind of weather in Sacramento. We were absolutely soaked in a couple of minutes (with umbrellas and jackets). Needless to say the game was cancelled. At least we'll be able to get tickets to another game!
The weather here in NC is so different than CA. We are getting used to getting rain about 3-4 times a week! It's not like CA where it rains all day...sometimes it will rain for an hour and then move on. Lee and I need to start keeping umbrellas in the car ;-)
Missy did great during her overnight trip to the Sunny Acres Pet Resort. She also participated in Doggy Day Camp with the other camper dogs. Surprisingly she seemed to like the other dogs. We bought her a Thundershirt (http://www.thundershirt.com/) and she did pretty darn good with the weather too (she was at the resort during the baseball game weather!) For any of you who have dogs that are afraid of thunder or fireworks or other stuff like that, I really recommend these shirts! Missy is going back to Sunny Acres while Lee and I are in Sanford.
We had a nice Memorial Day...a couple from our church invited us over for a cook out. There were eight couples and we had a really fun time and the food was great!
Have I said lately how awesome Lee is? Well...even if I did I want to say it again.
That man is the most wonderful person! His love and support are keeping me going right now! He is always there for me and his patience is beyond belief! I get tired, short of breath, cranky and frustrated. Lee just supports me through all of it... If I wake up at 3:00 in the morning and need to move to the recliner because I can't breathe Lee just helps me up and totes the pillows and blankets and sets me up in the chair with a kiss goodnight and back to bed he goes. Lee does most of the cleaning, walking Missy, laundry and other chores. He never complains. Whatever I need he does his best to take care of it. I know Lee is scared about my health. I can see it in his face. As I get sicker he gets more scared. I try to reassure him but I can understand how he feels...if the rolls were reversed I'd be terrified! Even through his fears he is supportive of me and hugs me and tells me it will be ok. I couldn't have a better caregiver - I don't think they make a better one!!
Well I'm done writing for now but I will write when I've started treatments to let you know how they are...
Love to all,
Lee, Wendy and Missy
I had posted about having pheresis done in May but we have been waiting for the insurance company to give their blessing.
The approval finally came through late yesterday (8:00 p.m. EST) Because it was so late it looks like nothing will get started until next week. In defense of the insurance company, the treatment regimin has never been given to a lung transplant patient so Blue Cross had nothing to compare the request to.
My problem is two-fold -- 1) high antibodies and 2) I didn't respond to the first two treatment plans. Dr. Zaas had numerous conversations with some docs at the Cleveland Clinic about how they treated Kidney transplant patients with these same response problems. After those conversations the Duke docs came up with this game plan that needed to be approved by Blue Cross...
Day 1: plasmapheresis (1-1.5 plasma volumes) w/ citrate dextrose and 5% albumin replacement
solumedrol 100mg
bortezomib (1.3mg/m2) over 3-5 seconds
rituximab (375mg/m2)
Day 4: plasmapheresis
solumedrol 100mg
bortezomib
Day 8: plasmapheresis
solumedrol 50mg
bortezomib
Day 11: plasmapheresis
solumedrol 50mg
bortezomib
Day 14: plasmapheresis
Day 16: plasmapheresis
Day 18: plasmapheresis
I'll be in the hospital for the first set of treatments. Then - if I tolerate it well - I can take the remaining treatments outpatient.
Normally the treatment plan would start this Monday but I will be out of town until Tuesday or Wednesday so I guess they will start it on Thursday. We were all hoping to get the initial dose in before I left town but it just didn't happen.
That's the update on the medical part of our lives. Now for the rest...
Lee and I are traveling to Sanford, NC because Stephen and Vanessa flew in to see Dale and Lorie (Stephen's dad and step-mom) and they live in Sanford. Amy and Michael are going to be there too. Dale and Lorie rented a house for their guests to stay in and they very graciously said Lee and I were welcome to come and stay in the house too so that we can see the kids. I'm really looking forward to that because I haven't seen Stephen and Vanessa since we moved!
Lee, Amy, Michael and I went to the Durham Bulls baseball game and it was fun for the first two innings and then the torrential rain and thunder and lightening started. OMG it was wild!!! We don't get that kind of weather in Sacramento. We were absolutely soaked in a couple of minutes (with umbrellas and jackets). Needless to say the game was cancelled. At least we'll be able to get tickets to another game!
The weather here in NC is so different than CA. We are getting used to getting rain about 3-4 times a week! It's not like CA where it rains all day...sometimes it will rain for an hour and then move on. Lee and I need to start keeping umbrellas in the car ;-)
Missy did great during her overnight trip to the Sunny Acres Pet Resort. She also participated in Doggy Day Camp with the other camper dogs. Surprisingly she seemed to like the other dogs. We bought her a Thundershirt (http://www.thundershirt.com/) and she did pretty darn good with the weather too (she was at the resort during the baseball game weather!) For any of you who have dogs that are afraid of thunder or fireworks or other stuff like that, I really recommend these shirts! Missy is going back to Sunny Acres while Lee and I are in Sanford.
We had a nice Memorial Day...a couple from our church invited us over for a cook out. There were eight couples and we had a really fun time and the food was great!
Have I said lately how awesome Lee is? Well...even if I did I want to say it again.
That man is the most wonderful person! His love and support are keeping me going right now! He is always there for me and his patience is beyond belief! I get tired, short of breath, cranky and frustrated. Lee just supports me through all of it... If I wake up at 3:00 in the morning and need to move to the recliner because I can't breathe Lee just helps me up and totes the pillows and blankets and sets me up in the chair with a kiss goodnight and back to bed he goes. Lee does most of the cleaning, walking Missy, laundry and other chores. He never complains. Whatever I need he does his best to take care of it. I know Lee is scared about my health. I can see it in his face. As I get sicker he gets more scared. I try to reassure him but I can understand how he feels...if the rolls were reversed I'd be terrified! Even through his fears he is supportive of me and hugs me and tells me it will be ok. I couldn't have a better caregiver - I don't think they make a better one!!
Well I'm done writing for now but I will write when I've started treatments to let you know how they are...
Love to all,
Lee, Wendy and Missy
Saturday, May 15, 2010
Middle of May
Happy Birthday to Emily, Steve, Carol and Tim!
Well it's the 15th of May and I made it through a week without needing to see a doctor! Yay!
I spoke with Lauren yesterday and they have a plan. They plan on bringing back into the hospital the week of May 24 for several rounds of phereses. That's where they will pump my blood into a machine that will pull out antibodies and then put the rest of the blood back into my body. Dr. Zaas said it's similar to dialysis.
The docs are hoping that the phereses, combined with more IVIG, rituximab and bortezimib will eliminate enough antibodies that my donor pool will open up some. There are pluses and minuses to pheresis but because we have tried the other drugs with no success, this is the next logical step. I'll need to be vigilant about infection and I'm thinking I probably won't want to be around sick people at all (at least not intentionally).
I'm sort of looking forward to the treatment. I really have a good feeling about the success of the treatment. Because I seem to be having setbacks (hospitalizations) I think everyone (team, Lee and me) believe it's once again time to take the next step. I'll keep you posted as I get more info.
This weekend Lee is up at Amy and Michael's house helping them build some outdoor furniture. I think that's great! Amy found a website: http://www.knock-offwoods.com/ that provides plans for wood furniture and it's for women! Lee's going to help provide some instruction so that maybe Amy can take on the next project alone. I, meanwhile, am having a nice day at the apartment with Missy. It's not often that we don't have something to do and I like the relaxing day. I've cleaned the bathrooms - yes that takes me hours! - and the kitchen and I'm slowly doing some laundry and then I'm going to read ;-)
Next weekend Amy, Michael, Lee and I are going to see the Durham Bulls play baseball. I'm really looking forward to that and I'm sure I'll take pictures and share them.
I hope everyone has a wonderful weekend and I'll write again soon.
Love to all,
Lee, Wendy and Missy
Well it's the 15th of May and I made it through a week without needing to see a doctor! Yay!
I spoke with Lauren yesterday and they have a plan. They plan on bringing back into the hospital the week of May 24 for several rounds of phereses. That's where they will pump my blood into a machine that will pull out antibodies and then put the rest of the blood back into my body. Dr. Zaas said it's similar to dialysis.
The docs are hoping that the phereses, combined with more IVIG, rituximab and bortezimib will eliminate enough antibodies that my donor pool will open up some. There are pluses and minuses to pheresis but because we have tried the other drugs with no success, this is the next logical step. I'll need to be vigilant about infection and I'm thinking I probably won't want to be around sick people at all (at least not intentionally).
I'm sort of looking forward to the treatment. I really have a good feeling about the success of the treatment. Because I seem to be having setbacks (hospitalizations) I think everyone (team, Lee and me) believe it's once again time to take the next step. I'll keep you posted as I get more info.
This weekend Lee is up at Amy and Michael's house helping them build some outdoor furniture. I think that's great! Amy found a website: http://www.knock-offwoods.com/ that provides plans for wood furniture and it's for women! Lee's going to help provide some instruction so that maybe Amy can take on the next project alone. I, meanwhile, am having a nice day at the apartment with Missy. It's not often that we don't have something to do and I like the relaxing day. I've cleaned the bathrooms - yes that takes me hours! - and the kitchen and I'm slowly doing some laundry and then I'm going to read ;-)
Next weekend Amy, Michael, Lee and I are going to see the Durham Bulls play baseball. I'm really looking forward to that and I'm sure I'll take pictures and share them.
I hope everyone has a wonderful weekend and I'll write again soon.
Love to all,
Lee, Wendy and Missy
Monday, May 10, 2010
Starting May
I hope everyone had a great Mother's Day!
Well, let's see…May started out sort of fun and festive...another dry run last weekend and a four-day stay in the hospital this weekend!
Prior to the transplant call, I had not been feeling very well (short of breath and just sort of bad) so the doctor put me back on a prednisone taper to see if that would clear things up. When I got the call to go to the hospital I at first just thought Emily (on-call coordinator) was just checking to see how I was feeling!
We didn't call everyone about the transplant call because the coordinator said it would very likely end up being a dry run because the antibodies didn't appear to be a very good match. She said the surgeon wanted to "give it a try" anyway. Well..it didn't match and home we went. The good thing is we had learned a bunch from the first dry run...
Amy, Lee and I decided not to send out the big announcement about the call because I was told it probably wouldn't amount to much. We promise to call if the lungs looks promising!!!
So on home we came. As it turns out no one was able to use those lungs -- that makes me so sad :-(
Lee and I went back to rehab on Monday and by Thursday I was really feeling cruddy again. I called Lauren to see if I should increase my prednisone again. Instead of that she wanted me to go to clinic to see Dr. Zaas who was there that day. I should have known...
Back to the hospital for four more days and nights of IV Solumedrol (makes prednisone look like baby asprin!), antibiotics and nebulizer treatments. Everything together worked well and I got to come home tonight after taking another IVIG treatment (remember those from October?).
The big down side to this little jaunt to the hospital? I am now (hopefully temporary) diabetic and need insulin to manage my blood sugar levels. We can all say thank you to Solumedrol and Prednisone. Prednisone can definitely cause diabetes but Solumedrol is almost guaranteed to do it...it really is strong stuff! I was on it every 6 hours around the clock and after the first dose they came into to check my blood sugar. I thought that was sort of weird because I'd never had that done before. Well the number was 226 and I thought that's nice...doesn't sound very high does it? About an hour later the nurse came in with an insulin shot. I was soooo surprised. My blood sugar has always run on the low side and I've lost all that weight and Lee and I are watching what we eat. That's when I was told all about this sad side effect of Solumedrol.
I do have to say that Solumedrol worked really well and for that I'm grateful. I guess I shouldn't complain about needing insulin if the offset to that is being able to breathe! I've found that I now measure lots of things I might have complained about or refused against the impact to my breathing. If it helps my breathing then it becomes higher on my list of things to do (good, bad, fun, nasty - it just doesn't matter)!
Dr. Zaas had me placed on "7800" which is the Pulmonary and Kidney floor of the hospital. Both pre and post transplant patients come here for treatment and it is the "step down" unit from the ICU after transplant. It is run very softly. I don't want to say "loosely" because it might seem like they are inefficient. That group is one of the most effective team of nurses and staff that I've ever witnessed. They have answers to questions, they don't make you wait for things, they encourage you, they have a very low nurse to patient ratio AND I get to wear my own pajamas! I was so jazzed - none of those one-size-fits-a-giant gowns for me! Here's a picture from yesterday when Amy came to see me. She brought me my Mother's Day gift. Notice I have my laptop up here too. Full cell phone and internet access in each room! Hmmm….is this the Hilton? JK :-)
So now we are home after stopping at Walgreens to pick up a glucose monitor, some test strips, some lancets (fufu word for exacto blades), alcohol swabs, and syringes. I just have to say - one look at me and you'll quickly see I never used street drugs. I couldn't figure out how to get to the plunger. It had this big orange cap that didn't look like a cap. I kept trying to move the cap in and out. I'll get the hang of it and it will be fine after a few more tries. Who knows maybe by then my blood sugar numbers will go back down so I won't need to draw blood!
So now we are back to our routine…eat, sleep, exercise and breathe. It never gets old as long as breathing stays in the equation!
Love you all,
Lee, Wendy and Missy
Well, let's see…May started out sort of fun and festive...another dry run last weekend and a four-day stay in the hospital this weekend!
Prior to the transplant call, I had not been feeling very well (short of breath and just sort of bad) so the doctor put me back on a prednisone taper to see if that would clear things up. When I got the call to go to the hospital I at first just thought Emily (on-call coordinator) was just checking to see how I was feeling!
We didn't call everyone about the transplant call because the coordinator said it would very likely end up being a dry run because the antibodies didn't appear to be a very good match. She said the surgeon wanted to "give it a try" anyway. Well..it didn't match and home we went. The good thing is we had learned a bunch from the first dry run...
- Always tell them you've just eaten...that way you get to put food in your stomach to tide you over for a potentially very long time.
- Make sure and bring laptops, cell phones, books and Sudoku. It gets really boring really fast!
- 3. Bring food and water for those that can partake...it keeps them happy!
- 4. Take your time getting there!!!!
Amy, Lee and I decided not to send out the big announcement about the call because I was told it probably wouldn't amount to much. We promise to call if the lungs looks promising!!!
So on home we came. As it turns out no one was able to use those lungs -- that makes me so sad :-(
Lee and I went back to rehab on Monday and by Thursday I was really feeling cruddy again. I called Lauren to see if I should increase my prednisone again. Instead of that she wanted me to go to clinic to see Dr. Zaas who was there that day. I should have known...
Back to the hospital for four more days and nights of IV Solumedrol (makes prednisone look like baby asprin!), antibiotics and nebulizer treatments. Everything together worked well and I got to come home tonight after taking another IVIG treatment (remember those from October?).
The big down side to this little jaunt to the hospital? I am now (hopefully temporary) diabetic and need insulin to manage my blood sugar levels. We can all say thank you to Solumedrol and Prednisone. Prednisone can definitely cause diabetes but Solumedrol is almost guaranteed to do it...it really is strong stuff! I was on it every 6 hours around the clock and after the first dose they came into to check my blood sugar. I thought that was sort of weird because I'd never had that done before. Well the number was 226 and I thought that's nice...doesn't sound very high does it? About an hour later the nurse came in with an insulin shot. I was soooo surprised. My blood sugar has always run on the low side and I've lost all that weight and Lee and I are watching what we eat. That's when I was told all about this sad side effect of Solumedrol.
I do have to say that Solumedrol worked really well and for that I'm grateful. I guess I shouldn't complain about needing insulin if the offset to that is being able to breathe! I've found that I now measure lots of things I might have complained about or refused against the impact to my breathing. If it helps my breathing then it becomes higher on my list of things to do (good, bad, fun, nasty - it just doesn't matter)!
Dr. Zaas had me placed on "7800" which is the Pulmonary and Kidney floor of the hospital. Both pre and post transplant patients come here for treatment and it is the "step down" unit from the ICU after transplant. It is run very softly. I don't want to say "loosely" because it might seem like they are inefficient. That group is one of the most effective team of nurses and staff that I've ever witnessed. They have answers to questions, they don't make you wait for things, they encourage you, they have a very low nurse to patient ratio AND I get to wear my own pajamas! I was so jazzed - none of those one-size-fits-a-giant gowns for me! Here's a picture from yesterday when Amy came to see me. She brought me my Mother's Day gift. Notice I have my laptop up here too. Full cell phone and internet access in each room! Hmmm….is this the Hilton? JK :-)
So now we are home after stopping at Walgreens to pick up a glucose monitor, some test strips, some lancets (fufu word for exacto blades), alcohol swabs, and syringes. I just have to say - one look at me and you'll quickly see I never used street drugs. I couldn't figure out how to get to the plunger. It had this big orange cap that didn't look like a cap. I kept trying to move the cap in and out. I'll get the hang of it and it will be fine after a few more tries. Who knows maybe by then my blood sugar numbers will go back down so I won't need to draw blood!
So now we are back to our routine…eat, sleep, exercise and breathe. It never gets old as long as breathing stays in the equation!
Love you all,
Lee, Wendy and Missy
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