Hello All,
Well it is official, last night I was put back onto the transplant list here at UNC. Things have proceeded so rapidly, and the team here really stepped up the pace and got all the testings and approvals ok'ed ASAP. My LAS (lung allocation score), is vey high this time. Some 30 points higher then when I was listed for my first transplant. That is just an indication into how critical my health has become. The wait should hopefully be very short. It could be tonight, tomorrow, next week. We really don't know, but hopefully it won't be long. It is hard being in this situation again. Totally different thoughts occupy my mind. I hate that I have to go through this again, as a recipient. Am I taking lungs from someone else who has been waiting much longer? Yes, probably. Is that fair? I don't know. Whats fair? I know that if I am lucky enough to get another donor in time, I will fulfill my obligation and do everything in my power to recover and honor that person. I've shoved my chips all-in.
Now the wait begins. Even harder this time to keep my mind off of things, as I am trapped here in the hospital. My breathing is very labored and I am on a high level of continuous oxygen. It is difficult for me to do even the smallest of tasks. However, I try and keep stretching, standing, and walking in small amounts. Just 3 weeks ago, although not feeling great, I was able to get around. The progression has just been so rapid.
Rebecca has been a huge help the last few days making sure I have what I need and keeping me on the doctors radar. Everyone is doing there best and it feels good to know so many people are doing all they can to make sure this happens and I get one more chance.
The next post could be the call. Thanks for everyones support this time around as we go into waters that very few have adventured.
-Mitch
Tuesday, July 13, 2010
Monday, July 12, 2010
Mitch at UNC Hospital : Update
I wanted to write a little update; Mitch is not up to it lately. Mitch was admitted down here at UNC last Wednesday after shortness of breath which was not controlled on home oxygen.
Mitch's respiration is severely declining; oxygen use is up every day, and ability to tolerate activity is way down. We are puzzled at the rapid decline. There are no answers.
Although Mitch spoke about having a while to make this decision of re-transplantation, the decision seems to have been made for him- there is no time to think- we need him back on the list ASAP and are hoping for the best.
The transplant team came in this morning and talked with him briefly about the testing that had to be completed to resubmit the paperwork to the insurance company, and sign the final informed consent, to a treatment which we now know much more about when we were in this position last year- it's result unknown and the process abundantly harsh and torturous for the patient and compassionate bystanders and loved ones. However, the alternative is not an option, it never was.
I hope you can support our choice and cheer Mitch on to do what he does best: survive and inspire. I am eternally witnessing a graceful spirit who never gives up, always finds beauty and love in the presence of hardship, and never thinks about himself before others. It is an honor to write on his behalf and be by his side on this very challenging and nearly impossible quest. My best friend of 16 years and husband of 10 years is the most amazing, beautiful, and inspiring person on the planet, I say.
Mitch's respiration is severely declining; oxygen use is up every day, and ability to tolerate activity is way down. We are puzzled at the rapid decline. There are no answers.
Although Mitch spoke about having a while to make this decision of re-transplantation, the decision seems to have been made for him- there is no time to think- we need him back on the list ASAP and are hoping for the best.
The transplant team came in this morning and talked with him briefly about the testing that had to be completed to resubmit the paperwork to the insurance company, and sign the final informed consent, to a treatment which we now know much more about when we were in this position last year- it's result unknown and the process abundantly harsh and torturous for the patient and compassionate bystanders and loved ones. However, the alternative is not an option, it never was.
I hope you can support our choice and cheer Mitch on to do what he does best: survive and inspire. I am eternally witnessing a graceful spirit who never gives up, always finds beauty and love in the presence of hardship, and never thinks about himself before others. It is an honor to write on his behalf and be by his side on this very challenging and nearly impossible quest. My best friend of 16 years and husband of 10 years is the most amazing, beautiful, and inspiring person on the planet, I say.
Monday, July 5, 2010
Slave to the Traffic Light
Yes, I will admit the Phish references are probably overboard by now, but honestly they just make sense.
Slave starts our journey into attempting to grasp the quickly approaching reality that I, in order to have even a small chance to live, need to have a second double-lung transplant.
"Seen the City, Seen the Zoo, Traffic Light won't let me through", those are the only lyrics to an instrumental song that lasts about 10 minutes. It sums up perfectly what I am about to experience. Frustration, out of ones control, and confusion come to mind when you read those words. That is the journey we are embarking on. Yet, that song, on occasion, is capable of being one of the most uplifting, miraculous, awe-inspiring, pieces of music ones ears can hear. There have been many tears shed during this song, by myself and Reba just the other night, and by thousands of others I am sure. Because in the music everything becomes completely clear. All the questions are answered, and everything is perfect. From complete frustration and not knowing to peace, harmony, and acceptance.
That is the theme of this second half of the blog. Embarking on a journey where the start is out of our control and we have such a sense of helplessness, but the end will be clear and perfect no matter what happens.....
So, it begins.
Thanks,
Mitch
Slave starts our journey into attempting to grasp the quickly approaching reality that I, in order to have even a small chance to live, need to have a second double-lung transplant.
"Seen the City, Seen the Zoo, Traffic Light won't let me through", those are the only lyrics to an instrumental song that lasts about 10 minutes. It sums up perfectly what I am about to experience. Frustration, out of ones control, and confusion come to mind when you read those words. That is the journey we are embarking on. Yet, that song, on occasion, is capable of being one of the most uplifting, miraculous, awe-inspiring, pieces of music ones ears can hear. There have been many tears shed during this song, by myself and Reba just the other night, and by thousands of others I am sure. Because in the music everything becomes completely clear. All the questions are answered, and everything is perfect. From complete frustration and not knowing to peace, harmony, and acceptance.
That is the theme of this second half of the blog. Embarking on a journey where the start is out of our control and we have such a sense of helplessness, but the end will be clear and perfect no matter what happens.....
So, it begins.
Thanks,
Mitch
Official end of the first Blog
No, I won't make everyone sign up for a new account or subscribe for a new listing etc. However, the process of my double-lung transplant has ended, at least for this set of lungs. It is only appropriate that we move forward. Part two is and will be much different. No more excitment and sense of adventure. We are in full survival mode now. It is fitting we start fresh documenting what this second process is like. The new working title is Slave to the Traffic Light. Which you will learn about quickly in my next post. However I wanted to just do a copy and paste of what the original blog title description was, so we have it memorialized. Thanks for carrying me and my family through this long 10 months. The support from this blog was mind-blowing and more helpful then anyone can imagine.
Begin old description that Rebecca wrote last year:
Down With Disease: A Double Lung Transplant Blog
"Waiting for the time when I can finally say, this has all been wonderful and now I'm on my way" (Down with Disease, Phish)-DWD is a way for our families and friends to be in THE KNOW during Mitch's double lung transplant process,(which occurred on 9/8/09) He required the transplant after reaching end-stage lung disease from Cystic Fibrosis.
Begin old description that Rebecca wrote last year:
Down With Disease: A Double Lung Transplant Blog
"Waiting for the time when I can finally say, this has all been wonderful and now I'm on my way" (Down with Disease, Phish)-DWD is a way for our families and friends to be in THE KNOW during Mitch's double lung transplant process,(which occurred on 9/8/09) He required the transplant after reaching end-stage lung disease from Cystic Fibrosis.
Friday, July 2, 2010
SNAFU
I struggled with how to make this post, what the title should be, what the attitude should be. I simply have nothing except to be straightforward as my doctors were with me.
The transplant did not work. That's it. I went down on monday for the follow up biopsy I last talked about. I had the procedure that afternoon. It was called an open lung wedge biopsy. They sugar-coated this a bit. I was and still am in some serious pain. They went in the chest wall and took actual tissue samples of the lungs. I woke up with a few more ivs in place, an arterial line, and 3 holes in my right chest, one was a huge chest tube. Not like transplant, but close.
Finally Dr. Haithcock (my surgeon), Dr. Pedar Noone (the head of the transplant program), and Becky Cicale (my transplant coordinator), came into my room thursday around noon and sat me down.
They were very shocked and disheartened to report that the results were very conclusive and I was in advanced stages of chronic rejection better known as BOS or Brochilitis Obliterans Syndrome. Basically, my smaller airways are completely obliterated, scarred, fibrous, and tearing themselves apart. Thus the rapid need for oxygen and the ability to never feel as though I could breathe, or my breathing was getting better.
Given how rapidly it onset, how progressive it was, the unknown of how it happened, there is no viable treatment option at all. The only possible scenario would be for a second transplant. The pathology was that bad.
It was sad to hear this, but in a way I knew.
We are exploring our options now and thinking things through. I want to keep that thought process for another post. It is almost impossible to grasp the idea of doing this again, although re-transplant is not taken lightly and the fact that they would even say I am a candidate is a good thing. It is a bit more difficult, but they feel my age, newness out of surgery, and case history among other things make me a good candidate. But there are simply no answers to why this happened, when it started, and why it happened so rapidly.
Which brings me to my title. I remember one story when I first started working in OT, I was working in some nursing home and this old man was rambling about how he just had another diagnosis of cancer and was going to die soon. He was a WWII Vet. And he looked at me and said, "this is just a SNAFU". "You know what that means, kid" And I begin to describe to him the actual definition of what I thought it meant, ie. it means you hit a little road block.blah blah blah, and he cuts me off and goes, "NO God Damnit. It means Situation Normal: All Fucked Up!" I had no clue..You learn something everyday.
Thats what this news is one giant SNAFU.....
-Mitch
The transplant did not work. That's it. I went down on monday for the follow up biopsy I last talked about. I had the procedure that afternoon. It was called an open lung wedge biopsy. They sugar-coated this a bit. I was and still am in some serious pain. They went in the chest wall and took actual tissue samples of the lungs. I woke up with a few more ivs in place, an arterial line, and 3 holes in my right chest, one was a huge chest tube. Not like transplant, but close.
Finally Dr. Haithcock (my surgeon), Dr. Pedar Noone (the head of the transplant program), and Becky Cicale (my transplant coordinator), came into my room thursday around noon and sat me down.
They were very shocked and disheartened to report that the results were very conclusive and I was in advanced stages of chronic rejection better known as BOS or Brochilitis Obliterans Syndrome. Basically, my smaller airways are completely obliterated, scarred, fibrous, and tearing themselves apart. Thus the rapid need for oxygen and the ability to never feel as though I could breathe, or my breathing was getting better.
Given how rapidly it onset, how progressive it was, the unknown of how it happened, there is no viable treatment option at all. The only possible scenario would be for a second transplant. The pathology was that bad.
It was sad to hear this, but in a way I knew.
We are exploring our options now and thinking things through. I want to keep that thought process for another post. It is almost impossible to grasp the idea of doing this again, although re-transplant is not taken lightly and the fact that they would even say I am a candidate is a good thing. It is a bit more difficult, but they feel my age, newness out of surgery, and case history among other things make me a good candidate. But there are simply no answers to why this happened, when it started, and why it happened so rapidly.
Which brings me to my title. I remember one story when I first started working in OT, I was working in some nursing home and this old man was rambling about how he just had another diagnosis of cancer and was going to die soon. He was a WWII Vet. And he looked at me and said, "this is just a SNAFU". "You know what that means, kid" And I begin to describe to him the actual definition of what I thought it meant, ie. it means you hit a little road block.blah blah blah, and he cuts me off and goes, "NO God Damnit. It means Situation Normal: All Fucked Up!" I had no clue..You learn something everyday.
Thats what this news is one giant SNAFU.....
-Mitch
Thursday, June 24, 2010
quick update
So, a more clear definitive plan was ironed out yesterday. The results of the regular OR bronch biopsies again were inconclusive, just showing some sort of inflammatory response. Having high plasma levels. So, since everything else has been ruled out, they need to get a sample from the airways much lower down where a scope can not reach. This is also the area that looks worst on xrays, ct scans, etc. I didn't mention this last post, but it was discussed last week as well.
It is more of a surgical procedure, where they remove a very small piece of the lung tissue so they can completely analyze it. They do it though, through the chest wall. It is called a Thoracic Wedge Biopsy, I think. Not to dangerous or risky, however Dr Haithcock, did point out sometimes after trasnsplant the lung wall has scarring and such and it can be a bit tricky requiring a larger cut. It takes a few days to recover as they do put in a chest tube.
This test will allow them to rule-out every possible thing, and hopefully give a definitive picture on what is happening. If it is a form of rejection, what kind? And this will help guide the treatment plan. A bit invasive, that is why they don't do it often. However, they decided that until then to try another round of the high dose steroids IV. Like I did about 6 weeks ago. Perhaps it might work. I did the first dose today, do one tomorrow, and one friday. If I get a miraculous bounce from this they will hold on the surgical procedure, but it is tentatively scheduled for Monday.
I will be able to get out of here tomorrow for the weekend and spend time with Rebecca and the Boys! We did not see eachother yet, since her trip to Italy, as I left the night she came home.
So, this is what is going on. So, who noticed the new pic at the top?? Taken same trip, just decided to switch it up a bit. That was almost a year ago, before transplant! Crazy to think about.
-Mitch
It is more of a surgical procedure, where they remove a very small piece of the lung tissue so they can completely analyze it. They do it though, through the chest wall. It is called a Thoracic Wedge Biopsy, I think. Not to dangerous or risky, however Dr Haithcock, did point out sometimes after trasnsplant the lung wall has scarring and such and it can be a bit tricky requiring a larger cut. It takes a few days to recover as they do put in a chest tube.
This test will allow them to rule-out every possible thing, and hopefully give a definitive picture on what is happening. If it is a form of rejection, what kind? And this will help guide the treatment plan. A bit invasive, that is why they don't do it often. However, they decided that until then to try another round of the high dose steroids IV. Like I did about 6 weeks ago. Perhaps it might work. I did the first dose today, do one tomorrow, and one friday. If I get a miraculous bounce from this they will hold on the surgical procedure, but it is tentatively scheduled for Monday.
I will be able to get out of here tomorrow for the weekend and spend time with Rebecca and the Boys! We did not see eachother yet, since her trip to Italy, as I left the night she came home.
So, this is what is going on. So, who noticed the new pic at the top?? Taken same trip, just decided to switch it up a bit. That was almost a year ago, before transplant! Crazy to think about.
-Mitch
Wednesday, June 23, 2010
Reality-The alphabet doesn't go ADC, does it? Somethings not right.
So, it has been 3 weeks. Trust me when I tell everyone I have been wanting to post more frequent updates. But, they would have sounded like everything was going perfect. I would have written about how I think my lungs are continuing to be better. How it was so good to be back at work, how Rebecca was able to go on her biking trip through Italy! And how I survived watching the boys for those 10 days, key word is survived. And how they finished kindergarten with great reviews and have made it to the first grade! How business was good, life seemed to be getting back to normal, and how Matias lost 2 teeth in two days. Telling me that the tooth fairy told him last time that for a big front tooth he gets ten bucks!! Who is this tooth fairy? Does she give your father a massage or something as well, I thought, but didn't ask!
Anyway, all of that was true, but the lungs have been getting worse. I have been ignoring a lot of it, trying to justify that the slight aches and pains while breathing were ok, and that my slightly less deep breaths were normal. Until, I started to not tolerate exercise nearly as well, and doing simple tasks were becoming very difficult. I am not coughing at all, so much different then pre-tx, with just CF. I started checking my SATS about a week or so ago regularly, and they are very poor and progressively got worse. For those that don't know from previous posts SATS are a little device I have that can measure the blood oxygen level in your body. It is just a finger sensor. By the end of last week, while at rest doing absolutely nothing they would read 88-90 maybe. Normal is basically 97 or above. After transplant I was 100 for sometime. With very light exertion they would go down to 83 or so. This is a sign that in the lower airways where the majority of oxygen exchange takes place, something is amiss. So, back down to Chapel Hill. Now, I know enough to know by now that your SAT levels are important. Also, I know that the forms of rejection Acute and Chronic are very different presentations. The weird thing being, acute rejection is very easy to diagnosis, mostly. The Bronchs I have would show certain characteristics. As do the biopsies, whereas with chronic rejection the diagnostic criteria is much different there is just so many theories and ways it can present, that the doctors are left to go on Pulmonary function test decline, and Oxygen levels. They can combine this with things, like eliminating every other treatable possiblity. Which is what they have done for me the last few months. I had some treatable complications, ie. the narrowing, some infection, some healing issues etc. The hope was treat these and the lungs should work perfectly. Well these things were succesffully treated and the lungs functions continue to decline, even quicker. WHY? No one really knows for sure. There are higher levels of lymphocytes? I think in my washes and biopsies, but no granulation formation, I think? To be honest with everyone, my doctors really don't know so they sometimes throw out these hypothesis, but the hypothesis get more and more refined as the testing comes back and prior history is taken into account.
But I want to level with everyone and myself, that finally the mention of Chronic Rejection and OB(Obliterans Bronchiolitis) has been brought up. They are the same thing, just different names. Different cellular and microscopic changes that occur. Some do respond to some changes in immunosuppression treatments. Which I think we will discuss tomorrow. Also, sadly, the remote possibility of Re-Transplanting me has been mentioned under the breath. Nothing anyone is considering yet, but something that has been discussed. If I don't catch a viral bug, or bad infection or anyting, I could have a lot of time in this chronic rejection realm. Perhaps a year or so, but I would not have the best quality of life in the sense of exercising and moving around. Physically and mentally, I do feel very well. My body has adjusted to the meds and my body feels relativley strong, although with the breathing issues I have lost some weight recently. I had to start back on oxygen when I need it.
So, that is the news where it stands. Yes, it totally sucks. Maybe I will have some spontaneous recovery, maybe a medication might work, but the more I read, and given my circumstances it does not look this way and Rebecca and I have to slowly come to the grips with the idea that we might have to do this again, and how do we go about doing this? The thought is exhausting for me, and although I would do it for my family, friends, and perhaps the followers of this blog (haha, love having followers very prophetic like), it is not the easiest decision to make. I should no more in the next few days. Enjoy some missing teeth photos below.
Until then,
Mitch
Although he lost this tooth a few months ago, did not want to leave Simon out!
Taken just the other day, me and Matias at the pool, missing a few teeth!
Anyway, all of that was true, but the lungs have been getting worse. I have been ignoring a lot of it, trying to justify that the slight aches and pains while breathing were ok, and that my slightly less deep breaths were normal. Until, I started to not tolerate exercise nearly as well, and doing simple tasks were becoming very difficult. I am not coughing at all, so much different then pre-tx, with just CF. I started checking my SATS about a week or so ago regularly, and they are very poor and progressively got worse. For those that don't know from previous posts SATS are a little device I have that can measure the blood oxygen level in your body. It is just a finger sensor. By the end of last week, while at rest doing absolutely nothing they would read 88-90 maybe. Normal is basically 97 or above. After transplant I was 100 for sometime. With very light exertion they would go down to 83 or so. This is a sign that in the lower airways where the majority of oxygen exchange takes place, something is amiss. So, back down to Chapel Hill. Now, I know enough to know by now that your SAT levels are important. Also, I know that the forms of rejection Acute and Chronic are very different presentations. The weird thing being, acute rejection is very easy to diagnosis, mostly. The Bronchs I have would show certain characteristics. As do the biopsies, whereas with chronic rejection the diagnostic criteria is much different there is just so many theories and ways it can present, that the doctors are left to go on Pulmonary function test decline, and Oxygen levels. They can combine this with things, like eliminating every other treatable possiblity. Which is what they have done for me the last few months. I had some treatable complications, ie. the narrowing, some infection, some healing issues etc. The hope was treat these and the lungs should work perfectly. Well these things were succesffully treated and the lungs functions continue to decline, even quicker. WHY? No one really knows for sure. There are higher levels of lymphocytes? I think in my washes and biopsies, but no granulation formation, I think? To be honest with everyone, my doctors really don't know so they sometimes throw out these hypothesis, but the hypothesis get more and more refined as the testing comes back and prior history is taken into account.
Here is a digital photo of an xray I had the other day, not incredibly terrible,but basically all the white shadows, streaking, and spots in the middle two lower sections distant from the midline should not be there, it should be ribs and black. The scapula bones at the top and then heart in middle on both sides are normal.
But I want to level with everyone and myself, that finally the mention of Chronic Rejection and OB(Obliterans Bronchiolitis) has been brought up. They are the same thing, just different names. Different cellular and microscopic changes that occur. Some do respond to some changes in immunosuppression treatments. Which I think we will discuss tomorrow. Also, sadly, the remote possibility of Re-Transplanting me has been mentioned under the breath. Nothing anyone is considering yet, but something that has been discussed. If I don't catch a viral bug, or bad infection or anyting, I could have a lot of time in this chronic rejection realm. Perhaps a year or so, but I would not have the best quality of life in the sense of exercising and moving around. Physically and mentally, I do feel very well. My body has adjusted to the meds and my body feels relativley strong, although with the breathing issues I have lost some weight recently. I had to start back on oxygen when I need it.
So, that is the news where it stands. Yes, it totally sucks. Maybe I will have some spontaneous recovery, maybe a medication might work, but the more I read, and given my circumstances it does not look this way and Rebecca and I have to slowly come to the grips with the idea that we might have to do this again, and how do we go about doing this? The thought is exhausting for me, and although I would do it for my family, friends, and perhaps the followers of this blog (haha, love having followers very prophetic like), it is not the easiest decision to make. I should no more in the next few days. Enjoy some missing teeth photos below.
Until then,
Mitch
Although he lost this tooth a few months ago, did not want to leave Simon out!
Taken just the other day, me and Matias at the pool, missing a few teeth!Monday, May 31, 2010
Back on the Train
Well, I hope everyone is having a great Memorial Day weekend! Cheers to all the Veterans and troops.
When I last left you all I was down in Chapel Hill recovering from the OR bronch and waiting on some test results. I was discharged late on Weds. night. Around 6pm, and I drove home eager to get back to maryland. I was actually feeling better and on the mend. The results turned out to be good. There was no current sign of any rejection! That was good news. All the cultures and tests were negative except for a positive culuture for the Rhinovirus. Basically, a common cold! Apparently, I caught a common cold a few weeks back. Makes sense, I had a runny nose, congestion etc. This was on the high dose of prednisone. However, it migrated to my lower airways. This is failry unusual and aside from new research available 5 years or so ago, they though it was impossible for the common cold to migrate to the lower airways. But new research has shown that indeed it can and cause serious problems if not addressed. However, with a virus there is not much you can really do except let it take its course, but you can make sure all other areas of the body are being treated appropriately.
So, they kept me on the antibiotics, and lower prednisone dose. I have been slowly feeling better. My chest no longer hurts when breathing. My energy and endurance is improving. I still am not quite breathing as well as I would like, but tolerating activity much better. I worked out yesterday and did very well. Again, my sats do drop when I start to really exert myself cardiovascularly, but I recover fine. I hope I will continue to improve albeit slowly.
It is just a very careful balancing game right now. My body is trying to reach a happy middle-ground with these new lungs and the immunosupression. Too much suppression and I get a cold or infection. Too little and rejection is possible. Also, my body experiences more side effect with more of the medications.
I feel much better though these last few days and hopefully will continue.
Thanks for all the calls, texts, voicemails, and a few posts. They keep me motivated. I do need to focus on the big picture and it has been great. 'Everyone dies, but not every man lives life', or something like that. Just read that the other day in a book I am reading. I have definitely been living life and enjoying it.
-Mitch
When I last left you all I was down in Chapel Hill recovering from the OR bronch and waiting on some test results. I was discharged late on Weds. night. Around 6pm, and I drove home eager to get back to maryland. I was actually feeling better and on the mend. The results turned out to be good. There was no current sign of any rejection! That was good news. All the cultures and tests were negative except for a positive culuture for the Rhinovirus. Basically, a common cold! Apparently, I caught a common cold a few weeks back. Makes sense, I had a runny nose, congestion etc. This was on the high dose of prednisone. However, it migrated to my lower airways. This is failry unusual and aside from new research available 5 years or so ago, they though it was impossible for the common cold to migrate to the lower airways. But new research has shown that indeed it can and cause serious problems if not addressed. However, with a virus there is not much you can really do except let it take its course, but you can make sure all other areas of the body are being treated appropriately.
So, they kept me on the antibiotics, and lower prednisone dose. I have been slowly feeling better. My chest no longer hurts when breathing. My energy and endurance is improving. I still am not quite breathing as well as I would like, but tolerating activity much better. I worked out yesterday and did very well. Again, my sats do drop when I start to really exert myself cardiovascularly, but I recover fine. I hope I will continue to improve albeit slowly.
It is just a very careful balancing game right now. My body is trying to reach a happy middle-ground with these new lungs and the immunosupression. Too much suppression and I get a cold or infection. Too little and rejection is possible. Also, my body experiences more side effect with more of the medications.
I feel much better though these last few days and hopefully will continue.
Thanks for all the calls, texts, voicemails, and a few posts. They keep me motivated. I do need to focus on the big picture and it has been great. 'Everyone dies, but not every man lives life', or something like that. Just read that the other day in a book I am reading. I have definitely been living life and enjoying it.
-Mitch
Tuesday, May 25, 2010
Back at UNC
I really don't keep this blog as up to date as I would like. There are a few reasons for that. The main being I simply do not enjoy writing these blog posts anymore. That is the truth. It has become a bit repetitve, frustrating, difficult etc. I have been fairly disappointed the last few weeks and I guess the last few months actually. Althought, there have been times where I have felt very good, it has been short lived. I definitely function and do much better then before transplant, however, I have in no way stabalized yet and reached a functional level that is where I want it to be. Every few weeks I deal with some setbacks. I still have issues. Not what I expected almost 9 months out. I really expected it to go two ways. Either a catastrophe or a perfect easy outcome. I have the middle ground. I will take this, don't get me wrong, but it is not what I was prepared for.
We had an incredible time on our trip to Florida. The steroid treatment for the acute rejection was not that bad or hard to deal with. In fact, I felt pretty good the whole time. I was able to do whatever I wanted for the most part. We spent the first few days at Bonita Springs with Rebecca's Mom and Peter. It was perfect. The gulf was beautiful, the weather was perfect, the boys loved swimming and playing. We then went up to visit Rebecca's Dad (Larry), and his friend Nancy. They were so hospitable. We made it to Disney for the day and the boys loved it. It was a perfect age to take them. They were able to look at the map and plan out what they wanted to do. No strollers, no complaing, they waited in lines, etc. it was perfect. I had no problems walking around the whole park never once needing a rest. I was feeling good. Thanks to Larry for taking us.
After getting back to Maryland, I slowly started to not feel that great. Just not breathing as well, not able to exercise as much. They put me on antibiotics to kind of cover me from infection, because sometimes with the high doses of steroids it can make you more susceptible to infection. However, I continued to kind of slide. Not taking as deep of breaths, and also having some pain when I take deep breaths in. So, I came down here Sunday night for an appointment on Monday, yesterday.
They took an xray. This time the left side look ok, perhaps a bit better, but now there are some new spots on the right side. So, they ordered a chest CTscan and immediately agreed another bronch (OR this time) would be appropriate. They scheduled the Bronch for that evening. That was good, no waiting around. They admitted me and took the CT scan. It looked like I had serious narrowing on the right side. So, the bronch was a great idea. I had the bronch, but not until nearly 7pm. Anyway, it turns out the airways looked "very good" according to Dr. V. (he is the other lung transplant surgeon and I will botch his name so I need to use Dr. V and look it up for another post). He said there was some junk and puss on the right side that he cleaned up and he took samples etc.
So, the team is a bit baffled again. Not really sure what is causing these nodules, not really sure why my breathing is not better. They have their ideas and theories, but all of my cultures and tests come back negative for the most part except for some lingering old CF bugs that shouldn't be that hard to treat. I am still waiting on the biopsies again. They took some more to see if any rejection is still present. They hope that just some continued antibiotics will have me feeling better and just more time and healing is needed, since I had all those narrowing and stenosis issues early on.
I am hoping they are right, or something clear shows up with a direct treatment. It is getting a bit frustrating...
I will post more when I know more.
-Mitch
We had an incredible time on our trip to Florida. The steroid treatment for the acute rejection was not that bad or hard to deal with. In fact, I felt pretty good the whole time. I was able to do whatever I wanted for the most part. We spent the first few days at Bonita Springs with Rebecca's Mom and Peter. It was perfect. The gulf was beautiful, the weather was perfect, the boys loved swimming and playing. We then went up to visit Rebecca's Dad (Larry), and his friend Nancy. They were so hospitable. We made it to Disney for the day and the boys loved it. It was a perfect age to take them. They were able to look at the map and plan out what they wanted to do. No strollers, no complaing, they waited in lines, etc. it was perfect. I had no problems walking around the whole park never once needing a rest. I was feeling good. Thanks to Larry for taking us.
After getting back to Maryland, I slowly started to not feel that great. Just not breathing as well, not able to exercise as much. They put me on antibiotics to kind of cover me from infection, because sometimes with the high doses of steroids it can make you more susceptible to infection. However, I continued to kind of slide. Not taking as deep of breaths, and also having some pain when I take deep breaths in. So, I came down here Sunday night for an appointment on Monday, yesterday.
They took an xray. This time the left side look ok, perhaps a bit better, but now there are some new spots on the right side. So, they ordered a chest CTscan and immediately agreed another bronch (OR this time) would be appropriate. They scheduled the Bronch for that evening. That was good, no waiting around. They admitted me and took the CT scan. It looked like I had serious narrowing on the right side. So, the bronch was a great idea. I had the bronch, but not until nearly 7pm. Anyway, it turns out the airways looked "very good" according to Dr. V. (he is the other lung transplant surgeon and I will botch his name so I need to use Dr. V and look it up for another post). He said there was some junk and puss on the right side that he cleaned up and he took samples etc.
So, the team is a bit baffled again. Not really sure what is causing these nodules, not really sure why my breathing is not better. They have their ideas and theories, but all of my cultures and tests come back negative for the most part except for some lingering old CF bugs that shouldn't be that hard to treat. I am still waiting on the biopsies again. They took some more to see if any rejection is still present. They hope that just some continued antibiotics will have me feeling better and just more time and healing is needed, since I had all those narrowing and stenosis issues early on.
I am hoping they are right, or something clear shows up with a direct treatment. It is getting a bit frustrating...
I will post more when I know more.
-Mitch
Wednesday, May 5, 2010
Reject This
Well, perhaps it is time for this blog to get exciting again. Not in the best way possible, I'm afraid. It seems as though I am having a bout of acute rejection. Yes, this sounds bad, but perhaps it will turn out to be a good thing....
The last few weeks I have actually been feeling fairly good. My exercise tolerance was up, my energy level was fairly good, I was working hard and getting a lot accomplished and of course really thought life was about as normal as it had been in a long time. I did have this type of glass ceiling though that was bothering me. Where it seemed like exercise was not getting easier, and I could just not breakthrough and make larger gains.
The team at Chapel Hill wanted to see me last friday in clinic, since we were planning a mothers day trip this weekend (still going), and did not want to go off to chapel hill upon returning, so they requested I come down. Well, it turned out to be a good thing, diagnostic wise. It seems the chest xray on the left side looked much worse then previously. They had been watching a small white nodule area about a month or two back, which they cultured and it was basically negative, and did not change. However, this time it was much larger and diffuse on the left handside. Their first inclination was some sort of fungal or bacterial infection, since I really did not have any clinical symptoms. However, they needed another bronchoscopy to take samples and biopsies to figure out how to treat it and what it was. So, they scheduled me for a bronch on monday, the 3rd, and they also scheduled a line placement for the 4th, knowing it was a given i would need some sort of IV treatment.
I was a bit bummed out, and it was annoying to drive home friday night, and then return first thing monday morning for these procedures. My Dad came with me and did the driving. They did the Bronch, which was not an OR bronch, so you would think recover would be a bit easier, however I was really heavily sedated, and I don't remember a thing at all about monday. Some how I walked out of the hospital under my own power, went into Chiptole (becoming a tradition) ordered, took it back to my room, and ate it. The first thing I remember though is waking up at 7:30 at night on the couch in the hotel, with a 3/4 eaten burrito spread over the table. That no memory cocktail really works. I sure remember everything before, the 4 IV sticks it took to get the IV started, including a hit nerve in my hand. I hate my veins.
So, reluctantly I returned first thing tuesday morning for the line placement. Luckily, I had a Interventional Radioligist Doc, that really listened to me. I told him all about my aweful vein history. He listened!! I told him where I thought his best chance was, he listened!! I told him what the plan B option was, and get this, he listened!!! and prepped that area. Well, he was great and was able to thread the line no problem, something someone has not been able to do in 15 years! That is why I had a port for 10 and the last picc after transplant had to come out.
Anyway, finally today we got some results and news. Dr. Noone called personally and said the pathologist discovered acute rejection. They are a bit baffled why the left side is the only side that looks bad, and that a nodule is there. Mostly not due to rejection. But no two cases are really alike. The good news is most people, like I stated in previous posts do get an episode or two of acute rejection in the first year. I have avoided it so far or at least never had a positive biopsy. There is a concrete treatment for this, it is not long, about a week, of high doses of steroids. 3 days via iv, and the rest oral. It should work, and potentially I could get much better and break through that glass ceiling. So, it is a bit nice to have an actual answer with a definite solution and approach. I pick up the meds tomorrow on our way to the airport, and I hope to be in a steroid induced rage by tomorrow night. So, if you see some wild maniac running naked on the beaches of the west coast of florida looking for dead pelicans and dolphins from the BP oil spill and cursing Big Oil and all of Earth's "advances" in a hypocritical fashion, that would be me!!!
Until then, may the force be with you!
-Mitch
The last few weeks I have actually been feeling fairly good. My exercise tolerance was up, my energy level was fairly good, I was working hard and getting a lot accomplished and of course really thought life was about as normal as it had been in a long time. I did have this type of glass ceiling though that was bothering me. Where it seemed like exercise was not getting easier, and I could just not breakthrough and make larger gains.
The team at Chapel Hill wanted to see me last friday in clinic, since we were planning a mothers day trip this weekend (still going), and did not want to go off to chapel hill upon returning, so they requested I come down. Well, it turned out to be a good thing, diagnostic wise. It seems the chest xray on the left side looked much worse then previously. They had been watching a small white nodule area about a month or two back, which they cultured and it was basically negative, and did not change. However, this time it was much larger and diffuse on the left handside. Their first inclination was some sort of fungal or bacterial infection, since I really did not have any clinical symptoms. However, they needed another bronchoscopy to take samples and biopsies to figure out how to treat it and what it was. So, they scheduled me for a bronch on monday, the 3rd, and they also scheduled a line placement for the 4th, knowing it was a given i would need some sort of IV treatment.
I was a bit bummed out, and it was annoying to drive home friday night, and then return first thing monday morning for these procedures. My Dad came with me and did the driving. They did the Bronch, which was not an OR bronch, so you would think recover would be a bit easier, however I was really heavily sedated, and I don't remember a thing at all about monday. Some how I walked out of the hospital under my own power, went into Chiptole (becoming a tradition) ordered, took it back to my room, and ate it. The first thing I remember though is waking up at 7:30 at night on the couch in the hotel, with a 3/4 eaten burrito spread over the table. That no memory cocktail really works. I sure remember everything before, the 4 IV sticks it took to get the IV started, including a hit nerve in my hand. I hate my veins.
So, reluctantly I returned first thing tuesday morning for the line placement. Luckily, I had a Interventional Radioligist Doc, that really listened to me. I told him all about my aweful vein history. He listened!! I told him where I thought his best chance was, he listened!! I told him what the plan B option was, and get this, he listened!!! and prepped that area. Well, he was great and was able to thread the line no problem, something someone has not been able to do in 15 years! That is why I had a port for 10 and the last picc after transplant had to come out.
Anyway, finally today we got some results and news. Dr. Noone called personally and said the pathologist discovered acute rejection. They are a bit baffled why the left side is the only side that looks bad, and that a nodule is there. Mostly not due to rejection. But no two cases are really alike. The good news is most people, like I stated in previous posts do get an episode or two of acute rejection in the first year. I have avoided it so far or at least never had a positive biopsy. There is a concrete treatment for this, it is not long, about a week, of high doses of steroids. 3 days via iv, and the rest oral. It should work, and potentially I could get much better and break through that glass ceiling. So, it is a bit nice to have an actual answer with a definite solution and approach. I pick up the meds tomorrow on our way to the airport, and I hope to be in a steroid induced rage by tomorrow night. So, if you see some wild maniac running naked on the beaches of the west coast of florida looking for dead pelicans and dolphins from the BP oil spill and cursing Big Oil and all of Earth's "advances" in a hypocritical fashion, that would be me!!!
Until then, may the force be with you!
-Mitch
Wednesday, April 14, 2010
Down with the Skis!
Hello Everyone!!
It has been a long time since my last post. It has been something I have been meaning to do for quite some time. Obviously, with the long delay everything must be going great! For the most part they are.
On April 8th, was the 7 month mark. We made it out to Colorado in a whirlwind 6 day trip. We were so busy, but had so much fun. My lungs are improving and getting stronger, but still not quite where I want them to be. The good news is I have had no issues with infection, and the narrowing has subsided to an extent where it is barely noticeable. I do not feel like I am close to the capacity or level that I can get to, but that is perhaps a good thing, because the amount of activity I can do at this level is so much more then I could do 5-10 years ago.
First our trip. We arrived in Denver and is was a balmy 70 degrees. It was so beautiful. I will add a bunch of photos below. The mountains were all snow capped and they were calling for a big storm to hit on Thursday, the day we were heading to the mountains. We arrived Tuesday and immediately went and visited Rebecca's great friend from her youth, Jamie Brooks! Jamie and her husband Devo, and Daughter Chloe entertained us and showed us their beautiful home. Devo made us a home made meal of pasta and homemade meatballs, that were superb. Denver is a really cool city and we stayed downtown and walked around a lot. On Thursday morning we left for Vail. We left just in time, because when we got through the Eisenhower Tunnel and approached Vail pass the weather was just starting to turn. We made it to Vail around 1pm. However, my friends Nick and Missy and their young children got into a major traffic accident on I-70 at Vail Pass! You can google the headlines. It was a 40 car pile-up and they were one of the 40 cars. Luckily, they were ok. Their car almost flipped over and if not for Nick knowing the pass and being in the right spot when he topped the crest, they could have been terribly injured. They were stuck in the car for over 4 hours, while paramedics and fireman cleared the cars and helped people. Their car was damaged but drivable. By the time they arrived that night, they were in shock still but relieved. So, were we. To top off the night, we all got in the hot tub to relax, and apparently a broken beer bottle was left at the bottom of the tub. Simon was jumping up and down and sliced his foot open, right below his big toe! The day was not going well!! The weather was too bad to even drive to an emergency room, so we called a doctor on call and sent him digital picks of the foot. It probably could have used about 10 stitches, but we cleaned it out, flapped the skin over it and bandaged it up according to the Doc. He was the nicest man! We owe Dr. Gray a shout out! We did not think Simon was going to be able to ski, but if you know Simon then you know he is a tough boy and once the foot was bandaged insisted everything was ok. The next morning, I rewrapped it and he was limping, but I threw him in his ski boots and then you could not tell he was limping anymore!! So, what you can't see must be ok. Amazingly he skied both days and never complained. It snowed the whole 3 days we were there off and on. The snow was incredible. The boys got so much better at skiing. I held my own, however the new lungs were not quite ready for 11k plus feet. I had a lot of trouble keeping my SATS (blood oxygen level) up. In fact at the top, they were dropping to 78-80. I felt a little delirious, but just had to stop and regroup every 20 seconds or so. Needless to say, even my adventuresome self, did not drop back into the back bowls. I did not want to be somewhere where help was far away and Nick and Rebec seemed a bit nervous. So, Rebec and I stayed on the front of the mountain, which is still huge and skied the whole front mountain the two days. By the second day, I was acclimating a bit and my SATS were closer to 82-85 and 87-89 at the base. I think this is due to the fact that I do have some narrowing and that the airways are still healing. Also my endurance and lung capacity still needs to improve. It was worth it though, and we all had an incredible time.
We made it back to DC. and returned to school and work. Work is still very busy and it feels good to be back. I get more and more adjusted everyday. I actually just returned from Chapel Hill yesterday. I went down to have Dr. H. do a follow-up 7 month bronch. He did this on Monday and said everything looked "really good". He was pleased. He said their was a bit of narrowing which he dilated, but no need for stents, and that he thinks they will continue to heal over time and my body will keep getting stronger.
It is miraculous to think that 7 months have passed. It actually feels a lot shorter. Probably because the first 4-5 months were so focused on recovery and my complications were fairly troublesome. Although no major rejection issues or major infection issues, it still was a difficult battle, which I am still re-cooperating from. I still have soreness along the rib-line where the ribs were spread, and I still have issues with some of the medications. I am off of all antibiotics except Zithromax, which is a maintenance drug that I took pre-transplant anyway. My body continues to adjust to the immunosuppression meds and their weird side effects. I also am basically a diabetic again, which means watching my blood sugars and taking insulin. So, this I have to get under control.
Thanks for the continued support and I will try and post a bit more frequently because I know their are people who are interested and also people out there who are still waiting for a transplant or who have had one and follow the blog for information. I know I found reading other peoples stories and experiences interesting, and I still do follow other transplant blogs.
Happy Spring Everyone!!
-Mitch
Here is a view out of our Hotel window in downtown Denver. The picture does not do the mountains justice.
Jamie and Chloe
Me and Si. Having fun in Denver
Matias and Baby Tyler. They were becoming friends.
The whole Gang in Vail Village. Me, Si, Mati, Reba, Zoey, Nick, Tyler (hiding in backpack), and Missy!!
Nick and I at the top of of Vail! A personal Highlight and accomplishment!! Next year we tear up the mountain more!!
It has been a long time since my last post. It has been something I have been meaning to do for quite some time. Obviously, with the long delay everything must be going great! For the most part they are.
On April 8th, was the 7 month mark. We made it out to Colorado in a whirlwind 6 day trip. We were so busy, but had so much fun. My lungs are improving and getting stronger, but still not quite where I want them to be. The good news is I have had no issues with infection, and the narrowing has subsided to an extent where it is barely noticeable. I do not feel like I am close to the capacity or level that I can get to, but that is perhaps a good thing, because the amount of activity I can do at this level is so much more then I could do 5-10 years ago.
First our trip. We arrived in Denver and is was a balmy 70 degrees. It was so beautiful. I will add a bunch of photos below. The mountains were all snow capped and they were calling for a big storm to hit on Thursday, the day we were heading to the mountains. We arrived Tuesday and immediately went and visited Rebecca's great friend from her youth, Jamie Brooks! Jamie and her husband Devo, and Daughter Chloe entertained us and showed us their beautiful home. Devo made us a home made meal of pasta and homemade meatballs, that were superb. Denver is a really cool city and we stayed downtown and walked around a lot. On Thursday morning we left for Vail. We left just in time, because when we got through the Eisenhower Tunnel and approached Vail pass the weather was just starting to turn. We made it to Vail around 1pm. However, my friends Nick and Missy and their young children got into a major traffic accident on I-70 at Vail Pass! You can google the headlines. It was a 40 car pile-up and they were one of the 40 cars. Luckily, they were ok. Their car almost flipped over and if not for Nick knowing the pass and being in the right spot when he topped the crest, they could have been terribly injured. They were stuck in the car for over 4 hours, while paramedics and fireman cleared the cars and helped people. Their car was damaged but drivable. By the time they arrived that night, they were in shock still but relieved. So, were we. To top off the night, we all got in the hot tub to relax, and apparently a broken beer bottle was left at the bottom of the tub. Simon was jumping up and down and sliced his foot open, right below his big toe! The day was not going well!! The weather was too bad to even drive to an emergency room, so we called a doctor on call and sent him digital picks of the foot. It probably could have used about 10 stitches, but we cleaned it out, flapped the skin over it and bandaged it up according to the Doc. He was the nicest man! We owe Dr. Gray a shout out! We did not think Simon was going to be able to ski, but if you know Simon then you know he is a tough boy and once the foot was bandaged insisted everything was ok. The next morning, I rewrapped it and he was limping, but I threw him in his ski boots and then you could not tell he was limping anymore!! So, what you can't see must be ok. Amazingly he skied both days and never complained. It snowed the whole 3 days we were there off and on. The snow was incredible. The boys got so much better at skiing. I held my own, however the new lungs were not quite ready for 11k plus feet. I had a lot of trouble keeping my SATS (blood oxygen level) up. In fact at the top, they were dropping to 78-80. I felt a little delirious, but just had to stop and regroup every 20 seconds or so. Needless to say, even my adventuresome self, did not drop back into the back bowls. I did not want to be somewhere where help was far away and Nick and Rebec seemed a bit nervous. So, Rebec and I stayed on the front of the mountain, which is still huge and skied the whole front mountain the two days. By the second day, I was acclimating a bit and my SATS were closer to 82-85 and 87-89 at the base. I think this is due to the fact that I do have some narrowing and that the airways are still healing. Also my endurance and lung capacity still needs to improve. It was worth it though, and we all had an incredible time.
We made it back to DC. and returned to school and work. Work is still very busy and it feels good to be back. I get more and more adjusted everyday. I actually just returned from Chapel Hill yesterday. I went down to have Dr. H. do a follow-up 7 month bronch. He did this on Monday and said everything looked "really good". He was pleased. He said their was a bit of narrowing which he dilated, but no need for stents, and that he thinks they will continue to heal over time and my body will keep getting stronger.
It is miraculous to think that 7 months have passed. It actually feels a lot shorter. Probably because the first 4-5 months were so focused on recovery and my complications were fairly troublesome. Although no major rejection issues or major infection issues, it still was a difficult battle, which I am still re-cooperating from. I still have soreness along the rib-line where the ribs were spread, and I still have issues with some of the medications. I am off of all antibiotics except Zithromax, which is a maintenance drug that I took pre-transplant anyway. My body continues to adjust to the immunosuppression meds and their weird side effects. I also am basically a diabetic again, which means watching my blood sugars and taking insulin. So, this I have to get under control.
Thanks for the continued support and I will try and post a bit more frequently because I know their are people who are interested and also people out there who are still waiting for a transplant or who have had one and follow the blog for information. I know I found reading other peoples stories and experiences interesting, and I still do follow other transplant blogs.
Happy Spring Everyone!!
-Mitch
Click on the photos to enlarge
Here is a view out of our Hotel window in downtown Denver. The picture does not do the mountains justice. 
Jamie and Chloe
Me and Si. Having fun in Denver
Matias and Baby Tyler. They were becoming friends.
The whole Gang in Vail Village. Me, Si, Mati, Reba, Zoey, Nick, Tyler (hiding in backpack), and Missy!!
Nick and I at the top of of Vail! A personal Highlight and accomplishment!! Next year we tear up the mountain more!!Tuesday, March 16, 2010
Update Time
Well, another week or so has past. The last I updated, I was doing fairly well, and continue to do so. I went down to Chapel Hill last thursday, with my Dad, for a clinic appt. and then another OR bronch on Friday. It is getting a little crazy, to keep doing these OR bronchs. I am surprised my body does not shut down more. They do take a lot out of me, though.
The clinic appt. went well. My pulmonary function tests were actually about the best they have been since transplant, so that was encouraging. When they did the OR Bronch, Dr. Haithcock was pleased with how everything looked for the most part. He did do the balloon dilation in a few spots, eventhough he said the narrowing was not nearly as obvious as before. He felt there was no need to insert any stents, so I remain stent free. I still am culturing some bugs though, and the plan is to put me back on a short course of antibiotics to keep any bad infection from developing. So, I should start that any day now.
I return again next week for a check up and hopefully that will go well. It was my nephew Cole's birthday party over the weekend and it was at one of those bounce house places. Actually, the same place we had Simon and Matias' six year old party. I felt good enough to jump and slide and climb, so that is a good sign. The lungs held up pretty well.
I still continue to be sore around my ribs and incision area. Also, when I take a deep breath in, it kind of hurts in this same area. But I am not really congested, just feel a bit weak at times. I started back up with physical therapy and with the weather getting better, hopefully I can continue this positive trend.
We still have the family trip planned to Denver in a few weeks, so that is what is on the horizon. We are really excited for that.
So, overall a slightly boring report, but that is better then an exciting report with bad news.
I'll report back soon,
-Mitch
The clinic appt. went well. My pulmonary function tests were actually about the best they have been since transplant, so that was encouraging. When they did the OR Bronch, Dr. Haithcock was pleased with how everything looked for the most part. He did do the balloon dilation in a few spots, eventhough he said the narrowing was not nearly as obvious as before. He felt there was no need to insert any stents, so I remain stent free. I still am culturing some bugs though, and the plan is to put me back on a short course of antibiotics to keep any bad infection from developing. So, I should start that any day now.
I return again next week for a check up and hopefully that will go well. It was my nephew Cole's birthday party over the weekend and it was at one of those bounce house places. Actually, the same place we had Simon and Matias' six year old party. I felt good enough to jump and slide and climb, so that is a good sign. The lungs held up pretty well.
I still continue to be sore around my ribs and incision area. Also, when I take a deep breath in, it kind of hurts in this same area. But I am not really congested, just feel a bit weak at times. I started back up with physical therapy and with the weather getting better, hopefully I can continue this positive trend.
We still have the family trip planned to Denver in a few weeks, so that is what is on the horizon. We are really excited for that.
So, overall a slightly boring report, but that is better then an exciting report with bad news.
I'll report back soon,
-Mitch
Tuesday, March 9, 2010
Six Months!
Yesterday, March 8th, was the six month mark from transplant. I am happy to report that things seem to be stabilizing. When the doctors, coordinators, and others who have gone through this experience say it can take 6 months to a year for things to really stabilize, perhaps they know what they are talking about.
When I last posted about 10 days ago, I was fresh out of another OR bronch where Dr. Haithcock removed my stents, did a bit of ballooning, and basically said lets do it again in two weeks and see what it looks like.
So far so good. I have some pain and discomfort when taking deep breaths, but for the most part I have had no wheezing or narrowing feelings. I have been back to work and back to a somewhat normal routine. Work has been incredibly busy. Perhaps on sheer call volume wise, the busiest the company has ever been (thanks to Snowmageddon, or snowpacolypse, or whatever everyone is calling it). So, the timing for me being back is good. I feel as though I am contributing and almost feel back mentally. Prograf makes me a bit forgetful at times. I have heard others report this, but it is very short term stuff, like If I took my meds in the am, or what I did the day before etc. But maybe I have always been like this :).
I am heading down to Chapel Hill on thursday for a clinic appt., but also on friday Dr. Haithcock is going to do the repeat OR Bronch. Perhaps everything will look good, perhaps he will balloon dilation a bit, or maybe even use the stents again. But again symptoms wise I do not feel even close to as bad as previous bronchs. My Dad is coming with me, so hopefully we will drive back friday right after the procedure.
I can not believe it has been six months! I actually finally sat down and wrote a letter to my donor family. I wrote it the other day and sent it off to the social worker at Chapel Hill. I will eventually post it on this blog, but want to wait and see if the donor family responds. They may or may not. But for now It will remain a personal letter to them. It was not hard to write, it only took 10 minutes , which shocked Rebecca. But, I have been thinking about what to say for six months, so it just flowed out. I feel a bit of anticipation again, almost like waiting for the lung call. Like I wonder when they will receive the letter and what their reaction might be? It is a weird feeling.
I restarted physical therapy up here in Bethesda at Suburban Hospital, which is close to my office. I really need to start challenging myself again and get these lungs working the best they can. Rebecca, myself and the boys plan to go to Denver for Spring Break week here at the end of the month beginning of April. We both have close friends there (Nick and Jamie), whom we have not visited since they have had their children and we cant wait to see them. The plan is to visit Jamie and her family first and then meet Nick up at Vail!! That will be a big test for these new lungs and how I am doing. Breathing at 8,000 feet!! But if I can, I will find a way, and I will snap a picture of me launching off of the back bowls into some fresh powder! That would be a major accomplishment!
Lets see what happens the next few weeks.
I will keep you all posted. Thanks for all the birthday wishes as well!!
-Mitch
When I last posted about 10 days ago, I was fresh out of another OR bronch where Dr. Haithcock removed my stents, did a bit of ballooning, and basically said lets do it again in two weeks and see what it looks like.
So far so good. I have some pain and discomfort when taking deep breaths, but for the most part I have had no wheezing or narrowing feelings. I have been back to work and back to a somewhat normal routine. Work has been incredibly busy. Perhaps on sheer call volume wise, the busiest the company has ever been (thanks to Snowmageddon, or snowpacolypse, or whatever everyone is calling it). So, the timing for me being back is good. I feel as though I am contributing and almost feel back mentally. Prograf makes me a bit forgetful at times. I have heard others report this, but it is very short term stuff, like If I took my meds in the am, or what I did the day before etc. But maybe I have always been like this :).
I am heading down to Chapel Hill on thursday for a clinic appt., but also on friday Dr. Haithcock is going to do the repeat OR Bronch. Perhaps everything will look good, perhaps he will balloon dilation a bit, or maybe even use the stents again. But again symptoms wise I do not feel even close to as bad as previous bronchs. My Dad is coming with me, so hopefully we will drive back friday right after the procedure.
I can not believe it has been six months! I actually finally sat down and wrote a letter to my donor family. I wrote it the other day and sent it off to the social worker at Chapel Hill. I will eventually post it on this blog, but want to wait and see if the donor family responds. They may or may not. But for now It will remain a personal letter to them. It was not hard to write, it only took 10 minutes , which shocked Rebecca. But, I have been thinking about what to say for six months, so it just flowed out. I feel a bit of anticipation again, almost like waiting for the lung call. Like I wonder when they will receive the letter and what their reaction might be? It is a weird feeling.
I restarted physical therapy up here in Bethesda at Suburban Hospital, which is close to my office. I really need to start challenging myself again and get these lungs working the best they can. Rebecca, myself and the boys plan to go to Denver for Spring Break week here at the end of the month beginning of April. We both have close friends there (Nick and Jamie), whom we have not visited since they have had their children and we cant wait to see them. The plan is to visit Jamie and her family first and then meet Nick up at Vail!! That will be a big test for these new lungs and how I am doing. Breathing at 8,000 feet!! But if I can, I will find a way, and I will snap a picture of me launching off of the back bowls into some fresh powder! That would be a major accomplishment!
Lets see what happens the next few weeks.
I will keep you all posted. Thanks for all the birthday wishes as well!!
-Mitch
Tuesday, March 2, 2010
Special Shout-Out To Cristin Caine
Life is hectic and busy. Everyone knows that. It seems everyone is dealing with issues whether they are physical and/or mental. Yet, they still find the time to reach out and encourage me. I remember as a child being so care free about life and not having a worry in the world, thanks to my parents. Hopefully, my kids feel that way. This post though is to recognize all of you and especially one person. Everyone has been so encouraging and so hopeful for my positive outcome. They may not post messages, but I hear from people I run into how much they love reading my updates, or through my mom, if she has bumped into someone in her office everyone is genuinely concerned about me. This keeps me going.
I want to personally thank everyone for their support. There are so many charities and organizations that people can donate to, I understand that. It amazes me sometimes that people choose Cystic Fibrosis to support despite any direct link to the disease, ie. immediate family member, etc. CF is a unique disease in that real progress has and is being made and now with lung transplant life expectancy is even higher! No genetic disease has ever really been cured, but what the CF foundation and researchers are doing is very close to a cure. Allowing children born with what was once a death sentence, into now the possibility and the probability of a somewhat "normal" life. And perhaps they will actually find that "cure".
Cristin McIntyre Caine is a perfect example of this amazing testament to the beauty of the human spirit. I have known the Mcintyre family since I was a kid and through friendship they have always been involved with helping raising money for CF. Cristin even worked for the foundation as a fundraiser out of college. Last saturday night she hosted a "Girls Night Out" type of event, where through her and her friends hardwork had about 100 or so items donated for auction. She did this on her own accord with no outside help from the foundation. It was just an event that through her genuine kindness wanted to do! She raised over $6,000!!! for Cystic Fibrosis. She, her mom, sister, and friends, donated their time and hard-work to put this event together. I am sure they have things in their own life that they could have easily not have had time to do something like this. The event was such a success and so well run it just blows me away the kindness that people have.
Cristin is Amazing!! Thank you so much for your friendship and support over the years. People like you are what life is all about.
-Mitch
I want to personally thank everyone for their support. There are so many charities and organizations that people can donate to, I understand that. It amazes me sometimes that people choose Cystic Fibrosis to support despite any direct link to the disease, ie. immediate family member, etc. CF is a unique disease in that real progress has and is being made and now with lung transplant life expectancy is even higher! No genetic disease has ever really been cured, but what the CF foundation and researchers are doing is very close to a cure. Allowing children born with what was once a death sentence, into now the possibility and the probability of a somewhat "normal" life. And perhaps they will actually find that "cure".
Cristin McIntyre Caine is a perfect example of this amazing testament to the beauty of the human spirit. I have known the Mcintyre family since I was a kid and through friendship they have always been involved with helping raising money for CF. Cristin even worked for the foundation as a fundraiser out of college. Last saturday night she hosted a "Girls Night Out" type of event, where through her and her friends hardwork had about 100 or so items donated for auction. She did this on her own accord with no outside help from the foundation. It was just an event that through her genuine kindness wanted to do! She raised over $6,000!!! for Cystic Fibrosis. She, her mom, sister, and friends, donated their time and hard-work to put this event together. I am sure they have things in their own life that they could have easily not have had time to do something like this. The event was such a success and so well run it just blows me away the kindness that people have.
Cristin is Amazing!! Thank you so much for your friendship and support over the years. People like you are what life is all about.
-Mitch
Sunday, February 28, 2010
Deja Vu
It has been about two weeks or so since my last update. Things seem to be stuck in this viscous cycle of repetition. Where I will have a few "good" weeks and then a "bad" one. Since my last post, I was feeling quite well. Got back to work, went skiing, infection and stents seemed to be working. Well, the transplant clinic wanted to see me for a follow-up appointment on Feb. 24th, which was a Wednesday. My antibiotics were to stop that day, and perhaps even finally pull out this IV line I still have.
Well, of course on the Monday of last week I started to not feel so good. This time it seemed to be a slight narrowing. My cough and infection were under control. I got down to Chapel Hill on Tuesday night, and spent the most of the night coughing. It was weird, I laid down to go to sleep and coughed a bit and then felt this tickle in my throat. If I coughed the tickle would get worse, but since their was no congestion, I could force myself to stop coughing and then I would really be symptom free, except for the narrowing feeling again. Like a slight wheeze when breathing in and out. Well, went to clinic the next day, the xray was inconclusive for the most part, but all the docs happened to be in the room at once. Ie. the Surgeons, CF docs, and transplant docs, it was like perfect timing, they all listened to me and I described my symptoms and it was all immediately agreed upon that they needed to go back down and take another look. Another OR Bronch. At first, they thought they were going to be able to do it that day, but I think Dr. Haithcock really wanted to take a look since he was gone for the last one, and since I was not in any immediate distress the OR Bronch was set up for first case Friday.
I killed the next 48 hours or so seeing movies Reba would never see with me, ie. Wolfman (thumbs down), Shelter Island (thumbs up, but wait for DVD/on demand), reading books and drinking coffee at Barnes and Noble. Sounds like the life, right? But really, these stays away from the family, without anyone there, and really wanting to back to a normal life are frustrating. Finally friday arrived, and for once they were not kidding, I was first on the list. I was in the operating room in la la land by 7:30am! By ten I was awake and the procedure was done no problems this time with breathing tubes or sedation etc.
Outcome: Well, for the most part it was positive according to Dr. Haithcock. He said I did cough up and move the stents. So, that was the "tickle" I was feeling. So, he took both the stents out. He said the right side looked perfect though and was wide open, seems like the stent worked. For how long we will see. He said the left side still needed some healing and he ballooned this again because it was narrow. He then said he wants to repeat the procedure in two weeks again, to stay ahead of it. Perhaps putting back in a stent on the left side, he said a longer one this time, and with luck the right will need nothing.
It took me the full day friday to recover, and I was sore and tired on Saturday, but I drove back to MD. I was very tired last night, but today, Sunday, am beginning to feel back to normal and strong. Every two weeks or so of full on general anesthesia is tough for the body. I don't know what they do to me while I'm out, but I am always so sore the next day, mouth, jaw, neck muscles, legs for some reason (I keep imagining like a weird scene that Quentin Tarantino would write or something).
My current symptoms seem to follow what Dr. Haithcock sees. I am breathing good today, but my left side does feel a bit weaker and a bit painful when I take a deep breath in. Right side feels great, hardly any coughing at all. I really hope for a good week. They have me off all the IV antibiotics for now, back to the regular post transplant regime of meds and see how things go the next two weeks.
I love the team at Chapel Hill, but this is where the management game becomes challenging. Being a 4-5 hour drive to the hospital, it is not like you can just hop over there and have them check you out. I have to leave for at least 2 days, which the last 3 times has turned into 5 day ordeals or so. But if things stabilize I will slowly start to go there less and have opened up channels here with my doctors. Until I really stabilize though, I have no alternatives which is fine because I feel most comfortable in their care, but I really want to stop going back!
-Mitch
Well, of course on the Monday of last week I started to not feel so good. This time it seemed to be a slight narrowing. My cough and infection were under control. I got down to Chapel Hill on Tuesday night, and spent the most of the night coughing. It was weird, I laid down to go to sleep and coughed a bit and then felt this tickle in my throat. If I coughed the tickle would get worse, but since their was no congestion, I could force myself to stop coughing and then I would really be symptom free, except for the narrowing feeling again. Like a slight wheeze when breathing in and out. Well, went to clinic the next day, the xray was inconclusive for the most part, but all the docs happened to be in the room at once. Ie. the Surgeons, CF docs, and transplant docs, it was like perfect timing, they all listened to me and I described my symptoms and it was all immediately agreed upon that they needed to go back down and take another look. Another OR Bronch. At first, they thought they were going to be able to do it that day, but I think Dr. Haithcock really wanted to take a look since he was gone for the last one, and since I was not in any immediate distress the OR Bronch was set up for first case Friday.
I killed the next 48 hours or so seeing movies Reba would never see with me, ie. Wolfman (thumbs down), Shelter Island (thumbs up, but wait for DVD/on demand), reading books and drinking coffee at Barnes and Noble. Sounds like the life, right? But really, these stays away from the family, without anyone there, and really wanting to back to a normal life are frustrating. Finally friday arrived, and for once they were not kidding, I was first on the list. I was in the operating room in la la land by 7:30am! By ten I was awake and the procedure was done no problems this time with breathing tubes or sedation etc.
Outcome: Well, for the most part it was positive according to Dr. Haithcock. He said I did cough up and move the stents. So, that was the "tickle" I was feeling. So, he took both the stents out. He said the right side looked perfect though and was wide open, seems like the stent worked. For how long we will see. He said the left side still needed some healing and he ballooned this again because it was narrow. He then said he wants to repeat the procedure in two weeks again, to stay ahead of it. Perhaps putting back in a stent on the left side, he said a longer one this time, and with luck the right will need nothing.
It took me the full day friday to recover, and I was sore and tired on Saturday, but I drove back to MD. I was very tired last night, but today, Sunday, am beginning to feel back to normal and strong. Every two weeks or so of full on general anesthesia is tough for the body. I don't know what they do to me while I'm out, but I am always so sore the next day, mouth, jaw, neck muscles, legs for some reason (I keep imagining like a weird scene that Quentin Tarantino would write or something).
My current symptoms seem to follow what Dr. Haithcock sees. I am breathing good today, but my left side does feel a bit weaker and a bit painful when I take a deep breath in. Right side feels great, hardly any coughing at all. I really hope for a good week. They have me off all the IV antibiotics for now, back to the regular post transplant regime of meds and see how things go the next two weeks.
I love the team at Chapel Hill, but this is where the management game becomes challenging. Being a 4-5 hour drive to the hospital, it is not like you can just hop over there and have them check you out. I have to leave for at least 2 days, which the last 3 times has turned into 5 day ordeals or so. But if things stabilize I will slowly start to go there less and have opened up channels here with my doctors. Until I really stabilize though, I have no alternatives which is fine because I feel most comfortable in their care, but I really want to stop going back!
-Mitch
Saturday, February 13, 2010
Living a Little
Wow, what a whirlwind 10 days. As Reba has so professionally kept everyone updated, I will just quickly offer a brief recap.
Early last week, before the 2 blizzards, I was feeling a little under the weather, but not terrible. I was scheduled to go to UNC for clinic on the 3rd anyway. So, I drove down. The plan was even to pull this remaining Power PICC line I still have in my upper chest. Anyway, my cough kept increasing and a chest xray revealed some "trouble areas". A random food poisoning/GI bug, an emergency OR Bronch, a diagnosed raging staph infection, a blood transfusion, 2 monumental blizzards in MD, and one week later I finally made it out of the hospital. That was Wednesday the 10th, DC was under snow emergency and no one was allowed to drive, so I spent the night in Chapel Hill and got home Thursday.
It was such a relief to be home. I was/am feeling 100% better. Amazing how the body can so quickly collapse, but can also quickly rebound. They want to keep me on home IV's for another week or so, to fully knock this out. Then it will be back to the game of managing immunosuppression at the risk of causing and making me more susceptible to these infections. It is a fine line that can take a year to sort out. My body needs to continue to heal, my lungs need to develop new blood supplies, I need to breathe better, and get stronger. I still have the narrowing issue, which the stents are taking care of for now, and hopefully when they come out the airways will in essence have "learned" to not narrow.
It was such a relief to get home. I immediately got to work digging us out with the snowblower. We had a 5 foot snow drift on our deck and right off the deck making it immpossible for Luke to walk anywhere. It was great though to be able to do this work. My body had just spent another week lying in a hospital bed, with little exercise, and also not eating so much. But at home, I felt strong and motivated to work! My breathing was so much better. I do get tired and out of breath, but not short of breath. Big difference. So, Rehab will continue to improve my breathing.
Work is a different story. Terry, has been doing an amazing job running the company while I was away. But with this Blizzard, we were completely overwhelmed. 100's of calls for snow removal. If we had 10 crews, we could have had them busy thursday through this weekend. We basically have 4 crews, so I went into work thursday evening and friday helping coordinate this firestorm. We have 3 phone lines and they all were filled and rolling to voicemail all day. I know it has been exhausting for my brother, so thanks again Terry.
I took today, Saturday, off though to spend some much needed family time with the boys and Rebecca. We Went Skiing!! It was amazing on so many levels. First, the fact that I went skiing after all that happened the last week and of course the last five months made me feel so motivated and inspired. Second, it was like riding a bike and I felt great. Third, I was surprisingly strong. Yes, I had to stop alot on the slopes and catch my breath and allow my muscles to recoup, but I did not cough at all, I was not short of breath. It was a glimpse into what the future holds. I'm no Bode Miller, so I was careful, because falling would have been very painful as I am still sore around my incision and ribcage area.
Rebecca's mom, Lois, is in town visiting this weekend and she came as a spectator and helped get the boys in ski school. They had a blast, but still need some more lessons! She also took these videos I posted. Follow the link below for some videos! She is the best. Thanks, Lois!
So, all in all, things seem stable, yet fragile. If we can keep the stenosis and infections at bay I should continue to improve and strengthen.
Happy Valentines Day Everyone,
Mitch
Here is a link to our video albums: Skiing!
Thursday, February 11, 2010
Brief Update
Mitch out of UNC-CH hospital yesterday. He stayed the night in a hotel because of BLIZZARD #2 up here at home. He is now driving home (Thursday morning) , safely.
End Results: NO REJECTION- acute or chronic from biopsies taken. YAY!
End result of cultures- Staph Infection in lungs.
He is on home IVs and they want him back for a check-up in 9 or 10 days.
At home in Maryland- we survived our second blizzard which dropped another 12 inches or so...there must be 3.5 feet of snow outside and giant drifts and hills from plowing.
I always wanted to live in Colorado. Now all we need is the gorgeous Rockies as a backdrop and I would have my dream come true....without them, its just a white, cold, mess. We wish we had had the foresight this past week to be cruising the Caribbean with Mitch's parents- geniuses, they are!
Hope everyone is well; Mitch will update with his self-report soon.
I know from what he has told me; he feels better, yet is still recovering from the infection, and is exhausted from this ongoing fight. It is sometimes, and, understandably and even appropriately so, hard to keep your head up when it seems there is no end in sight. I think we both feel this way, and are not sure how to go about dealing with it, except by exercising stubborn persistence.
Mitch continues to amaze me with his strength and determination.
He keeps on going no matter how tired he is.
We Just Hope that the infection will improve, the stenosis and narrowing will improve, he will get his strength and endurance back, and we can begin to move forward again.
End Results: NO REJECTION- acute or chronic from biopsies taken. YAY!
End result of cultures- Staph Infection in lungs.
He is on home IVs and they want him back for a check-up in 9 or 10 days.
At home in Maryland- we survived our second blizzard which dropped another 12 inches or so...there must be 3.5 feet of snow outside and giant drifts and hills from plowing.
I always wanted to live in Colorado. Now all we need is the gorgeous Rockies as a backdrop and I would have my dream come true....without them, its just a white, cold, mess. We wish we had had the foresight this past week to be cruising the Caribbean with Mitch's parents- geniuses, they are!
Hope everyone is well; Mitch will update with his self-report soon.
I know from what he has told me; he feels better, yet is still recovering from the infection, and is exhausted from this ongoing fight. It is sometimes, and, understandably and even appropriately so, hard to keep your head up when it seems there is no end in sight. I think we both feel this way, and are not sure how to go about dealing with it, except by exercising stubborn persistence.
Mitch continues to amaze me with his strength and determination.
He keeps on going no matter how tired he is.
We Just Hope that the infection will improve, the stenosis and narrowing will improve, he will get his strength and endurance back, and we can begin to move forward again.
Sunday, February 7, 2010
Sunday Update
Mitch reports he is beginning to feel better. He had a blood transfusion yesterday. His hematocrit- red blood cell levels have been hovering very low- and he had a shot- procrit- to build some about 2 months ago, but he needed another boost .
He has C. diff, which is an intestinal bacterium which generally occurs after heavy antibiotics or can be caught while in the hospital as it is also contagious. The treatment for this condition is guess what?- more antibiotics! Mitch will have to do some heavy probiotics after this...
All results from said tests (flu, virus, swine flu,etc) are coming back negative. No results from the biopsy about rejection yet. He should hear about that tomorrow.
The only thing that i showing up is his same old pseudomonas bacteria he has always had- the CF bugs hold on tight! It was able to take over again after he was ill with the cold he had.
On the home front; Simon, Matias, Luke and I have survived Snowmageddon 2010! The snow comes up to Simon and Matias's chest and my upper waist. Our neighbor Yasu helped me figure out the snowblower and helped us with our driveway.
Here is Matias and Simon playing with Mayu- she built a cave and an igloo.
We hope Mitch can join us soon. He plans to come home on Wednesday or Thursday.
Friday, February 5, 2010
Quick Update <<< Friday Morning
Mitch's nausea subsided yesterday morning so he was feeling a bit better before his procedure.
Mitch had his bronchoscopy yesterday afternoon (Thursday). They took biopsies and cultures to send to the labs. There was some narrowing on the left side where the new stint was put in. The area of concern in the right lung, "area of concentration" is what Dr. V called it- on the ct-scan was sampled.
When Mitch came to, he was really snowed and he had to have the breathing tube put back in for a an hour while he was watched very closely, and then taken out. He was in the PACU unit being watched closely (Dr V. wanted him in ICU last night but there were no beds) until Mitch was able to convince them at around 10 pm that he was fine and they took him to his regular room.
He texted that he was ok but had had a "rough day".
We won't know about any of the labs until later on today and the days after.
They had started him on tameflu (sp?) because of his symtoms but even their flu labs (at UNC) take 48 hours so they will come back sometime today (friday).
Becky Cicale (our beloved nurse coordinator) called last night and was very gracious with her words of encouragement. She explained everything in further depth that Dr V had said earlier and told me that she thought the narrowing and infection were probably just from the cold he had and also that sometimes a cold can trigger acute rejection but they took biopsies. She said a lot of people have these airways complications for 6 months to a year and then they go away...and things are good. I hope she is right.
Mitch had his bronchoscopy yesterday afternoon (Thursday). They took biopsies and cultures to send to the labs. There was some narrowing on the left side where the new stint was put in. The area of concern in the right lung, "area of concentration" is what Dr. V called it- on the ct-scan was sampled.
When Mitch came to, he was really snowed and he had to have the breathing tube put back in for a an hour while he was watched very closely, and then taken out. He was in the PACU unit being watched closely (Dr V. wanted him in ICU last night but there were no beds) until Mitch was able to convince them at around 10 pm that he was fine and they took him to his regular room.
He texted that he was ok but had had a "rough day".
We won't know about any of the labs until later on today and the days after.
They had started him on tameflu (sp?) because of his symtoms but even their flu labs (at UNC) take 48 hours so they will come back sometime today (friday).
Becky Cicale (our beloved nurse coordinator) called last night and was very gracious with her words of encouragement. She explained everything in further depth that Dr V had said earlier and told me that she thought the narrowing and infection were probably just from the cold he had and also that sometimes a cold can trigger acute rejection but they took biopsies. She said a lot of people have these airways complications for 6 months to a year and then they go away...and things are good. I hope she is right.
Wednesday, February 3, 2010
Update: Strange Days
Hello bloggers- its Reba. I have not been active for a while. I have been coasting on the easy train for the past few weeks since the stints went in. No worries, all smiles...breathing well.
However, things have gotten strange the past few days. Mitch was admitted to the hospital in UNC this morning. It is curious at this point. Let me fill you in...
He got his first cold since the transplant about a week ago. The symptoms were runny nose, sore throat, and fever. Then soon a cough, and then after a few days, a deeper, more productive cough which hurt his chest. Fever went away on Friday but came back on Sunday afternoon or Monday... he was in touch with the nurse coordinator and drs and due to come down this week (appointment scheduled Wednesday). He seemed OK, until the cough got deeper, and then he started to look bright and white in the face, and weak-looking. He was coughing like he had CF again(which I know.. he does still have CF, its just i let myself forget since has been feeling so well, normal). His appetite was down just in the last day. He was very tired by Tuesday when he had to drive down. On Saturday night, after a coughing fit- in the middle of the night he sat up in bed and said, "i think i have a stint in my throat." He said it felt like a painful lump was in his throat and he imagined the stint had come loose and was lodged in his windpipe-
He of course, shared all this with the transplant team, he drives down on Tuesday, stopping for naps, etc.,
Wednesday morning is the appointment (today) and they do xray- stints are still in their places but there is something on the xray-a spot on an area of his right lung which makes them order a CT scan and admit him. While he is waiting for the CT scan, he begins to feel sweaty and weak, and starts throwing up. He says he threw up about 5 times. They don't know now what is going on- there have been many things mentioned from H1N1 , acute organ rejection, food poisoning, flu, Stomach virus, etc. Of course they ordered a bunch of diagnostic tests to figure it out.
The CT scan showed a nodule or something in the right lung which is most likely an infection. So now he is on every antibiotic and anti-fungal known to man before they do the OR bronchoscopy tomorrow and/or get the results back from some of the tests to try to figure out what the deal is.
I will keep you posted!
If anyone is nearby Chapel Hill please visit him- he is alone down there this time.
However, things have gotten strange the past few days. Mitch was admitted to the hospital in UNC this morning. It is curious at this point. Let me fill you in...
He got his first cold since the transplant about a week ago. The symptoms were runny nose, sore throat, and fever. Then soon a cough, and then after a few days, a deeper, more productive cough which hurt his chest. Fever went away on Friday but came back on Sunday afternoon or Monday... he was in touch with the nurse coordinator and drs and due to come down this week (appointment scheduled Wednesday). He seemed OK, until the cough got deeper, and then he started to look bright and white in the face, and weak-looking. He was coughing like he had CF again(which I know.. he does still have CF, its just i let myself forget since has been feeling so well, normal). His appetite was down just in the last day. He was very tired by Tuesday when he had to drive down. On Saturday night, after a coughing fit- in the middle of the night he sat up in bed and said, "i think i have a stint in my throat." He said it felt like a painful lump was in his throat and he imagined the stint had come loose and was lodged in his windpipe-
He of course, shared all this with the transplant team, he drives down on Tuesday, stopping for naps, etc.,
Wednesday morning is the appointment (today) and they do xray- stints are still in their places but there is something on the xray-a spot on an area of his right lung which makes them order a CT scan and admit him. While he is waiting for the CT scan, he begins to feel sweaty and weak, and starts throwing up. He says he threw up about 5 times. They don't know now what is going on- there have been many things mentioned from H1N1 , acute organ rejection, food poisoning, flu, Stomach virus, etc. Of course they ordered a bunch of diagnostic tests to figure it out.
The CT scan showed a nodule or something in the right lung which is most likely an infection. So now he is on every antibiotic and anti-fungal known to man before they do the OR bronchoscopy tomorrow and/or get the results back from some of the tests to try to figure out what the deal is.
I will keep you posted!
If anyone is nearby Chapel Hill please visit him- he is alone down there this time.
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