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
Tuesday, March 16, 2010
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.
Friday, January 15, 2010
stents Deployed
Well, it looks like everything went well yesterday. Dr. H, came into the pre-op area about 3pm and went over all the details on what he intended to do. After hearing how I felt the week immediately after the last balloon bronch, he was fairly confident this should help.
Procedure really only took about an hour. I was waking up from sedation around 6pm and out the door by 7pm. My recollection of last night is a bit groggy, but apparently it went perfectly. Dr. H, is happy with the placement and said there were no issues placing the stents, and that all things considere, the airways and new lungs looked good. No signs of any lingering infection either.
I demanded Chipotle, and my Dad took me there. I got a loaded Burrito with chips to go. Back at the hotel I got a few different drinks, as my throat was now starting to really feel sore. I don't remember devouring the burrito in my room, or drinking a bottle of water, a bottle of coke, and a bottle of apple juice. Or making tea, but when I woke up in the morning someone must have done those things!! I wonder if that counts as a "light meal" that the discharge nurse suggested for the evening.
Anyway, I woke up with a continued sore throat and body aches. This has been typical from these procedures and the full sedation. We were not sure what really to do, as Becky briefly mentioned coming to clinic either today(friday), or next friday. I was still in a bit of a daze, although I felt more open and my breathing was much easier. So, my Dad and I decided to just leave and I would go to clinic next week. Well, 20 minutes out, I get a call from the doctor and they want me back to do PFT's.(Pulmonary Function Tests), I guess they really wanted to get a baseline of where I am at after the stents. Probably would have been best to wait 24 hours or so, but since it was friday and we wanted to get back to Maryland we really had no choice.
So, we headed back to the hospital and did the test. Surprisingly, it was quite good. My best numbers since the transplant, and this was in this groggy painful condition. So, that is very comforting news, by tomorrow or sunday, I should feel back to "normal" and resume some exercise. If these stents keep my airways open, hopefully my numbers will increase even more! The plan is to return to clinic next friday and get an xray, bloodwork, and another set of pfts. See how things look and make a long-term plan from there.
Overall, it appears to be a successful trip. Glad I did not wait until the 20th to have this done.
Talk to you all soon,
Mitch
Procedure really only took about an hour. I was waking up from sedation around 6pm and out the door by 7pm. My recollection of last night is a bit groggy, but apparently it went perfectly. Dr. H, is happy with the placement and said there were no issues placing the stents, and that all things considere, the airways and new lungs looked good. No signs of any lingering infection either.
I demanded Chipotle, and my Dad took me there. I got a loaded Burrito with chips to go. Back at the hotel I got a few different drinks, as my throat was now starting to really feel sore. I don't remember devouring the burrito in my room, or drinking a bottle of water, a bottle of coke, and a bottle of apple juice. Or making tea, but when I woke up in the morning someone must have done those things!! I wonder if that counts as a "light meal" that the discharge nurse suggested for the evening.
Anyway, I woke up with a continued sore throat and body aches. This has been typical from these procedures and the full sedation. We were not sure what really to do, as Becky briefly mentioned coming to clinic either today(friday), or next friday. I was still in a bit of a daze, although I felt more open and my breathing was much easier. So, my Dad and I decided to just leave and I would go to clinic next week. Well, 20 minutes out, I get a call from the doctor and they want me back to do PFT's.(Pulmonary Function Tests), I guess they really wanted to get a baseline of where I am at after the stents. Probably would have been best to wait 24 hours or so, but since it was friday and we wanted to get back to Maryland we really had no choice.
So, we headed back to the hospital and did the test. Surprisingly, it was quite good. My best numbers since the transplant, and this was in this groggy painful condition. So, that is very comforting news, by tomorrow or sunday, I should feel back to "normal" and resume some exercise. If these stents keep my airways open, hopefully my numbers will increase even more! The plan is to return to clinic next friday and get an xray, bloodwork, and another set of pfts. See how things look and make a long-term plan from there.
Overall, it appears to be a successful trip. Glad I did not wait until the 20th to have this done.
Talk to you all soon,
Mitch
Thursday, January 14, 2010
Bronch with Stents Today
Short update. So, after feeling great last week, I think I mentioned I could slowly start to feel the narrowing returning. I was scheduled for the stent placement on Jan. 20th, but on monday, I was starting to wheeze much worse and get more short of breath. So, I called Chapel Hill and Becky and Dr. Haithcock agreed to get me on the schedule this week. So, today is the day. 3pm, to be specific.
My Dad and I drove down last night, I took him to the lung transplant support group which meets every other Wednesday so that worked out. It is a interesting group made up of people waiting for a transplant and who have had a transplant. We are now getting ready to head over to the hospital shortly.
Hopefully, this stent system will do the trick. Dr. Haithcock, generally leaves the stents in for up to 3 months and then removes them. Hopefully, by that time your body has healed and can keep the airway open without any further help.
I will get an update to everyone as soon as we can. If anyone is interested here is a link to the type of stent he uses. http://www.alveolus.com/tracheobronchial.php
-Mitch
My Dad and I drove down last night, I took him to the lung transplant support group which meets every other Wednesday so that worked out. It is a interesting group made up of people waiting for a transplant and who have had a transplant. We are now getting ready to head over to the hospital shortly.
Hopefully, this stent system will do the trick. Dr. Haithcock, generally leaves the stents in for up to 3 months and then removes them. Hopefully, by that time your body has healed and can keep the airway open without any further help.
I will get an update to everyone as soon as we can. If anyone is interested here is a link to the type of stent he uses. http://www.alveolus.com/tracheobronchial.php
-Mitch
Saturday, January 9, 2010
Back in Maryland- A Few Afterthoughts
Well, I made it back to maryland this morning. There were just a few things I forgot to mention in my last long post, that I wanted to mention. Yesterday happened to also be the exact 4 month mark after my transplant. 09/08/09-01/08/10. One can tell that life has resumed to a more normal level when that was not the focus of my post. I remember feeling such a sense of accomplishment and success reaching the 1 month mark, 8 week mark, etc. I definitely did not forget the day, but it is not the focus any longer. I feel as though, despite the recent setbacks, that the mere length of time is not what is most important to me in this process. Although it does feel nice...
I finally feel ready to reach out to my donor family and let them know how I feel about their gift of organ donation and how I am doing. I will start to craft a letter to them. Not exactly sure what approach to take, but it will come to me. I wanted my health, medications, and outcome to stabilize a bit and I also wanted to physically feel strong or stronger before writing such an important letter. This will help me say things the way I want to say them without rushing out some steroid induced emotional letter that does not symbolize what I want to say.
The way the process works is as follows: Either the donor or recipient can write a letter at any time. It is handed over to a third-party (I forget the name, but it might have something to do with UNOS) through your coordinator, they read the letter and ensure total anonymity before forwarding it on to the other party. This protects peoples privacy etc. However, if a level of correspondence and trust develops the donor family and recipient can mutually agree to end the privacy and communicate directly and even meet. In case anyone was interested..
Anyway, that is about it for now.
-Mitch
I finally feel ready to reach out to my donor family and let them know how I feel about their gift of organ donation and how I am doing. I will start to craft a letter to them. Not exactly sure what approach to take, but it will come to me. I wanted my health, medications, and outcome to stabilize a bit and I also wanted to physically feel strong or stronger before writing such an important letter. This will help me say things the way I want to say them without rushing out some steroid induced emotional letter that does not symbolize what I want to say.
The way the process works is as follows: Either the donor or recipient can write a letter at any time. It is handed over to a third-party (I forget the name, but it might have something to do with UNOS) through your coordinator, they read the letter and ensure total anonymity before forwarding it on to the other party. This protects peoples privacy etc. However, if a level of correspondence and trust develops the donor family and recipient can mutually agree to end the privacy and communicate directly and even meet. In case anyone was interested..
Anyway, that is about it for now.
-Mitch
Friday, January 8, 2010
2010- A Breathing Odyssey
Good sequels are not rushed. Sorry for the long delay in posts. Happy New Year to all!! This year I will approach as a sequel to my life before new lungs. Like all good stories it will have its ups and downs (I'm sure), it will have conflict, resolution, trials and tribulations...you get the idea. It will probably be long (like Avatar), in fact it will be 365 days. If it is a success, part 3 will come out in 2011!! It might not gross a billion dollars, but lock it in for at least a million beautiful memories. So, lets get it started.
When we last left the story, the protagonist (yours truly), was in a difficult battle with a team of dark forces led by their leader 'Stenosis'. We fled with the family to Florida and spent time with Rebecca's mom, Lois, in Vero Beach. We enjoyed a wonderful Christmas , time on the beach, and relaxation. The boys absolutely love 'Grammies Beach House' and had a lot of fun playing wii and wrestling with Peter. I actually think I might have played more wii then them. Super Mario Smash bros. is addicting.
Unfortunately, Stenosis found us! My breathing deteriorated very rapidly. I was back to wheezing and unable to tolerate much exercise. I was determined to continue with the trip, which included the Phish show in Miami. I was in correspondence with the docs and Becky, and we started back on antibiotics just to prevent any further complications from infection, and I was told to really monitor my SATS (blood oxygen level) if they remained in the low to mid 90's at rest, I am ok.
On the 27th we headed down to my parents place in Palm Beach. By this time, I really could not do anything active beyond walking straight lines, but I tried. However, on the 28th we made it to the show, I would not be denied! It was fantastic! I am so glad we went. It was a bit surreal because on both Reba's and my mind was my health. We were not sure if my poor breathing was still just Mr. Stenosis, or some more vengeful unknown enemy. But the music prevailed this night. I was able to stand and bob my head and move my hands (the nerdy hippy dance), so all was good. The set list was perfect. From the opening notes of the first song (Sample in a jar), to the closing contact-character zero we were able to lose ourselves for a few precious minutes and not worry. I had a feeling all week we were in for a good night and was not disappointed, karma. We had great seats taboot, see photo below.
During this time, we were in contact with Chapel Hill and Dr. Haithcock wanted me back in there to do the balloon bronch again on the 30th. So, off we went driving all day on the 29th. Had the bronch on the 30th. The procedure went flawlessly and this time we got some good news. Dr. Haithcock said he really thinks the stenosis is confined to the anastomes and not distally. So, this happens more like 20% of the time. Unfortunately, mine is a bit persistent and won't go away with these balloon bronchs, so he said he would put in the stents in about 2 weeks. Immediately though, I felt 100% better, by the time we got to Maryland on the 31st I was breathing so much better. What a relief to know that this is still fixable. I went from not being able to walk up some stairs, to unloading the car, putting things away, playing with the boys, and ringing in the new year at my brother Terry and Tracy's house playing rockband and counting down the ball with the WHOLE family!! Kids included. Some how, all the kids were awake and into it and about 15-20 of us rang in the new year. It made me feel so alive!! Thank you Terry and Tracy!! The boys have never come close to staying up to midnight, perhaps they could feel how special this night was.
About 10 days have now passed since the last balloon bronch and the stent procedure is now scheduled for the 20th. I felt great up until about 24 hours ago and now the narrowing or Mr. Stenosis has located me again. I slowly start to feel the narrowing creep into my airway and the wheezing is slowly starting. I am actually in Chapel Hill now and just finished a clinic appointment and rehab. The plan is to still make it to the 20th, if it gets much more severe, like in Florida, I am to call them and see if it can be bumped up. I know they have to procure the stents, etc, but that should be done or being done.
Back to Maryland tomorrow and hopefully I can fool the enemy to stay away and not progress for another 10 days.....Again, this sequel will be long, sorry for the long post, but thanks for reading. BTW, the second photo below is the day we left Chapel Hill. The boys made some great friends and it was symbolic of our time here. We found the people nice and approachable and it was bitter sweet to leave...
-Mitch
When we last left the story, the protagonist (yours truly), was in a difficult battle with a team of dark forces led by their leader 'Stenosis'. We fled with the family to Florida and spent time with Rebecca's mom, Lois, in Vero Beach. We enjoyed a wonderful Christmas , time on the beach, and relaxation. The boys absolutely love 'Grammies Beach House' and had a lot of fun playing wii and wrestling with Peter. I actually think I might have played more wii then them. Super Mario Smash bros. is addicting.
Unfortunately, Stenosis found us! My breathing deteriorated very rapidly. I was back to wheezing and unable to tolerate much exercise. I was determined to continue with the trip, which included the Phish show in Miami. I was in correspondence with the docs and Becky, and we started back on antibiotics just to prevent any further complications from infection, and I was told to really monitor my SATS (blood oxygen level) if they remained in the low to mid 90's at rest, I am ok.
On the 27th we headed down to my parents place in Palm Beach. By this time, I really could not do anything active beyond walking straight lines, but I tried. However, on the 28th we made it to the show, I would not be denied! It was fantastic! I am so glad we went. It was a bit surreal because on both Reba's and my mind was my health. We were not sure if my poor breathing was still just Mr. Stenosis, or some more vengeful unknown enemy. But the music prevailed this night. I was able to stand and bob my head and move my hands (the nerdy hippy dance), so all was good. The set list was perfect. From the opening notes of the first song (Sample in a jar), to the closing contact-character zero we were able to lose ourselves for a few precious minutes and not worry. I had a feeling all week we were in for a good night and was not disappointed, karma. We had great seats taboot, see photo below.
During this time, we were in contact with Chapel Hill and Dr. Haithcock wanted me back in there to do the balloon bronch again on the 30th. So, off we went driving all day on the 29th. Had the bronch on the 30th. The procedure went flawlessly and this time we got some good news. Dr. Haithcock said he really thinks the stenosis is confined to the anastomes and not distally. So, this happens more like 20% of the time. Unfortunately, mine is a bit persistent and won't go away with these balloon bronchs, so he said he would put in the stents in about 2 weeks. Immediately though, I felt 100% better, by the time we got to Maryland on the 31st I was breathing so much better. What a relief to know that this is still fixable. I went from not being able to walk up some stairs, to unloading the car, putting things away, playing with the boys, and ringing in the new year at my brother Terry and Tracy's house playing rockband and counting down the ball with the WHOLE family!! Kids included. Some how, all the kids were awake and into it and about 15-20 of us rang in the new year. It made me feel so alive!! Thank you Terry and Tracy!! The boys have never come close to staying up to midnight, perhaps they could feel how special this night was.
About 10 days have now passed since the last balloon bronch and the stent procedure is now scheduled for the 20th. I felt great up until about 24 hours ago and now the narrowing or Mr. Stenosis has located me again. I slowly start to feel the narrowing creep into my airway and the wheezing is slowly starting. I am actually in Chapel Hill now and just finished a clinic appointment and rehab. The plan is to still make it to the 20th, if it gets much more severe, like in Florida, I am to call them and see if it can be bumped up. I know they have to procure the stents, etc, but that should be done or being done.
Back to Maryland tomorrow and hopefully I can fool the enemy to stay away and not progress for another 10 days.....Again, this sequel will be long, sorry for the long post, but thanks for reading. BTW, the second photo below is the day we left Chapel Hill. The boys made some great friends and it was symbolic of our time here. We found the people nice and approachable and it was bitter sweet to leave...
-Mitch
Here are some of the boys friends on their left and right is another set of twins, Trevor and Logan. In the back is the legendary "bam-Bam"
Here is a view from our seats at the Phish show before it began. Great seats right on top of Page's Keys!
Tuesday, December 22, 2009
Update
Well, I hope this post finds everyone happy and getting ready for the holidays!
We've been a bit quiet lately, mostly because we have been a bit busy moving out of our place in North Carolina and driving down here to Florida! It took a few extra days for us to leave, but we left on Friday, the 18th, after my clinic appointment. We left just as the giant north east storm was rolling in. All we encountered was flurries that turned to rain on the drive down to Vero Beach, FL. Nothing like the 2 feet of snow everyone up north got. My docs cleared me to go, but on a close watch.
So, the situation is basically one of continued wait and see. This is partly driven by the holidays, but also giving my body a small rest. The narrowing/stenosis continues and at times is very problematic. I sound very funny when I breathe, ie. whistling sounds, vibrations, tightness, a bit of discomfort. It does vary a bit, but is fairly consistent. On friday, the chest x-ray showed the infection was improving, but with the narrowing which is not only at the anastomes, but seems to have spread distally to lower parts of the lungs, prevents me from taking in deep breaths and expelling them. Unfortunately, my Pulmonary Function Tests (test used to measure breathing capacity), were incredibly low. Almost to a pre-transplant level, however, if the stenosis gets controlled, there is no reason to believe these should not improve rapidly. My oxygen level remains ok, though, and although I continue to work out and exercise it is very hard to take in deep breathes, so I get very short of breath.
So, what is the plan. Hopefully, things stay status quo through the holidays. I will return to Chapel Hill the first of the year and Becky has assured me that some more aggressive steps will be taken to try and resolve this. Perhaps the more permanent stent? Not quite sure, but something needs to be attempted. This complication is a bit rare. Not so much the stenosis at the anastomes, but combined with the distal stenosis. About 6-8%. So, again I guess it could be much worse, but the fact that it is not the most common complication really presents a slight unknown factor.
It is nice to be relaxing down in Florida though, and we all will drive back to Maryland around the 30th. Rebec and the boys will stay there, as I spend a few weeks getting things straightened out in Chapel Hill. I might be able to go home for weekends and things, and the hope is by the middle of Jan. I will be there permanently.
In a full circle scenario if you refer back to my post on 8/16/09, where Rebecca and I barely made it to the Phish show and I vowed to make it through transplant to see another show.... Well, timing is everything and the New Years run is down here in S. Florida. So, guess what? Thats right, I have my tickets for the show on the 28th!! Hopefully, that will be a great night before our return trip to Maryland!
Hope those that celebrate Christmas have a Merry one.
-Mitch
We've been a bit quiet lately, mostly because we have been a bit busy moving out of our place in North Carolina and driving down here to Florida! It took a few extra days for us to leave, but we left on Friday, the 18th, after my clinic appointment. We left just as the giant north east storm was rolling in. All we encountered was flurries that turned to rain on the drive down to Vero Beach, FL. Nothing like the 2 feet of snow everyone up north got. My docs cleared me to go, but on a close watch.
So, the situation is basically one of continued wait and see. This is partly driven by the holidays, but also giving my body a small rest. The narrowing/stenosis continues and at times is very problematic. I sound very funny when I breathe, ie. whistling sounds, vibrations, tightness, a bit of discomfort. It does vary a bit, but is fairly consistent. On friday, the chest x-ray showed the infection was improving, but with the narrowing which is not only at the anastomes, but seems to have spread distally to lower parts of the lungs, prevents me from taking in deep breaths and expelling them. Unfortunately, my Pulmonary Function Tests (test used to measure breathing capacity), were incredibly low. Almost to a pre-transplant level, however, if the stenosis gets controlled, there is no reason to believe these should not improve rapidly. My oxygen level remains ok, though, and although I continue to work out and exercise it is very hard to take in deep breathes, so I get very short of breath.
So, what is the plan. Hopefully, things stay status quo through the holidays. I will return to Chapel Hill the first of the year and Becky has assured me that some more aggressive steps will be taken to try and resolve this. Perhaps the more permanent stent? Not quite sure, but something needs to be attempted. This complication is a bit rare. Not so much the stenosis at the anastomes, but combined with the distal stenosis. About 6-8%. So, again I guess it could be much worse, but the fact that it is not the most common complication really presents a slight unknown factor.
It is nice to be relaxing down in Florida though, and we all will drive back to Maryland around the 30th. Rebec and the boys will stay there, as I spend a few weeks getting things straightened out in Chapel Hill. I might be able to go home for weekends and things, and the hope is by the middle of Jan. I will be there permanently.
In a full circle scenario if you refer back to my post on 8/16/09, where Rebecca and I barely made it to the Phish show and I vowed to make it through transplant to see another show.... Well, timing is everything and the New Years run is down here in S. Florida. So, guess what? Thats right, I have my tickets for the show on the 28th!! Hopefully, that will be a great night before our return trip to Maryland!
Hope those that celebrate Christmas have a Merry one.
-Mitch
Sunday, December 13, 2009
No Walk in the Park
Wow, what a 48hrs. I am lucky to be home, let alone to have gotten home yesterday afternoon. As Reba wrote, I had a complication during the bronch. Basically, when they snipped a piece of the lung for a biopsy the lungs started to bleed. They apparently did not realize right away and when they were pulling out the breathing tube and scope I started coughing up a lot of blood. So, they re-intubated me. Went back down there and somehow made sure the bleeding stopped. But they had to keep the breathing tube in overnight and keep me in the ICU.
When I awoke saturday morning, I had 2 ivs going, tubes in most orifices, but luckily had no idea what was going on. They kept me very heavily sedated. I vaugely remember Reba getting there in the am. and talking to me trying to tell me what happened. I was told that all night I was asking to write down things and slightly combative everytime they let the sedation up. When the sedation let up enough in the am, I basically demanded they remove all the tubes. I believe, but Rebec would have to verify, Dr. Haithcock came in and gave the ok. They took out the breathing tube, and iv in my arm. Dr. Haithcock came back about an hour later to check on me and explained what happened again. I hardly remember, but he said he wanted to keep me a day or so to watch me and I immediately refused. I actually at this time felt great. The narcotics had not worn off yet, and the breathing tube was gone, so I told him how great I felt. He agreed to watch me for a few hours and let me go Saturday afternoon. They pulled the catheter (note to CIA-good torture technique, forget waterboarding), and I finally got out of there around 4pm.
By then though the toll of the trauma I went through was just starting to effect my body. I was not feeling good, but put on the game face to get home. Thankfully, my parents were down here to help with everything. Good timing for a visit. A little weak and wobbly, but I was just not going to stay in the hospital overnight again. I rested saturday and slept decent last night. Today, my body is expressing the toll of the stress it went through. For some reason, all my muscles in my body seem sore. Neck, chest, legs (probably from the leg workout i did thursday in pt though). My breathing is not great, still have leftover congestion from the procedure and it is hard to take deep breathes because of the soreness. I was under sedation for over 12 hours with a breathing tube just 30 hours ago, so to be home tonight writing this to me seems like an accomplishment.
I don't want this post to seem negative, I want it to be accurate though for when we look back on my experiences. After a double-lung transplant and the recovery associated with it, something like this seems like a walk in the park, but it certainly was not. It was hard...
-mitch
When I awoke saturday morning, I had 2 ivs going, tubes in most orifices, but luckily had no idea what was going on. They kept me very heavily sedated. I vaugely remember Reba getting there in the am. and talking to me trying to tell me what happened. I was told that all night I was asking to write down things and slightly combative everytime they let the sedation up. When the sedation let up enough in the am, I basically demanded they remove all the tubes. I believe, but Rebec would have to verify, Dr. Haithcock came in and gave the ok. They took out the breathing tube, and iv in my arm. Dr. Haithcock came back about an hour later to check on me and explained what happened again. I hardly remember, but he said he wanted to keep me a day or so to watch me and I immediately refused. I actually at this time felt great. The narcotics had not worn off yet, and the breathing tube was gone, so I told him how great I felt. He agreed to watch me for a few hours and let me go Saturday afternoon. They pulled the catheter (note to CIA-good torture technique, forget waterboarding), and I finally got out of there around 4pm.
By then though the toll of the trauma I went through was just starting to effect my body. I was not feeling good, but put on the game face to get home. Thankfully, my parents were down here to help with everything. Good timing for a visit. A little weak and wobbly, but I was just not going to stay in the hospital overnight again. I rested saturday and slept decent last night. Today, my body is expressing the toll of the stress it went through. For some reason, all my muscles in my body seem sore. Neck, chest, legs (probably from the leg workout i did thursday in pt though). My breathing is not great, still have leftover congestion from the procedure and it is hard to take deep breathes because of the soreness. I was under sedation for over 12 hours with a breathing tube just 30 hours ago, so to be home tonight writing this to me seems like an accomplishment.
I don't want this post to seem negative, I want it to be accurate though for when we look back on my experiences. After a double-lung transplant and the recovery associated with it, something like this seems like a walk in the park, but it certainly was not. It was hard...
-mitch
Update 12.13.09
Mitch had OR bronch on Friday. Scheduled for 12pm, started at 7pm.
The bronch showed the lungs looked better , infection better, stenosis/narrowing better.
Dr Haithcock also did a biopsy to check for rejection which caused bleeding, which is a rare complication. He had to re-intubate Mitch and go back in and take a look to make sure the bleeding stopped, etc. They kept the breathing tube in and Mitch in the ICU overnight, Friday night.
Breathing tube came out Saturday morning. Luckily, Mitch was sedated and thought when he woke up that he was just getting out of the procedure the night before. He was back where he started, next door to his room right after the transplant in the CICU! I am glad he did not suffer, I worried that all night he would wake up and not know what happened, and why he was in the ICU on a vent.
Luckily, he is home and recovering. All of these incidents take a toll. He is weaker, but at least the infection is better. The next OR bronchoscopy will take place in a few weeks. Same procedure, but no biopsies.
Although, next time- we are only taking an early morning appointment for these non-emergent surgeries.
Billy and Gayle were here during this happening, thankfully. They took our dog and one car back to Maryland. Hopefully, we will all get back there soon.
The bronch showed the lungs looked better , infection better, stenosis/narrowing better.
Dr Haithcock also did a biopsy to check for rejection which caused bleeding, which is a rare complication. He had to re-intubate Mitch and go back in and take a look to make sure the bleeding stopped, etc. They kept the breathing tube in and Mitch in the ICU overnight, Friday night.
Breathing tube came out Saturday morning. Luckily, Mitch was sedated and thought when he woke up that he was just getting out of the procedure the night before. He was back where he started, next door to his room right after the transplant in the CICU! I am glad he did not suffer, I worried that all night he would wake up and not know what happened, and why he was in the ICU on a vent.
Luckily, he is home and recovering. All of these incidents take a toll. He is weaker, but at least the infection is better. The next OR bronchoscopy will take place in a few weeks. Same procedure, but no biopsies.
Although, next time- we are only taking an early morning appointment for these non-emergent surgeries.
Billy and Gayle were here during this happening, thankfully. They took our dog and one car back to Maryland. Hopefully, we will all get back there soon.
Tuesday, December 8, 2009
3 Months Today!
Well, this last month did not go exactly as planned or as hoped for. But, it did go by. I continue to have lost lung function due to the stenosis issue and infection. As Rebec posted, I had the OR Bronch done last weds. It really wiped me out for the remainder of the week, however by friday i was starting to feel better. Dr. Haithcock, immediately said after this bronch he wants to do it again on the 11th. So, that is this friday. The idea being, to stay ahead of the narrowing a bit. Open it up some, wait a week and a half while taking heavy antibiotics and then repeat the procedure. Hopefully, achieving even more dilation the next time. He is very confident that my body will slowly start to finish the healing process around these airway connections and the narrowing will no longer occur.
Right now it is very similar to a chicken and egg scenario. My anastomic connections have not fully healed, so they are probably like an infected wound. This infected wound, like all, loves bacteria. Well guess what, even with the transplant I have plenty of my old CF bugs in my throat area, and sinuses. So, the bacteria trickles down and makes the anastomes it's home. It creates infection which trickle even further down my airways. Since I have the narrowing, I can not clear out those infections, instead my body compensates and takes smaller breathes, without alot of air movement in my lower airways, little mucous plugs and infection stick around. More infection lower down then also leads to further narrowing. So, this is the cycle we need to break. The good news is it should be breakable, and my new lungs continue to show no signs of rejection. It could be much worse.
Not helping this process is the fact that my immune system is a little too suppressed. My white blood cell count was very low. So, low it can not help the infection. When they immunosuppress people they shoot for a low number to avoid rejection, but not totally deprive you of WBC. So, they took me off two of my meds for a few days to see if these levels come back up.
I went to Rehab yesterday and the difference from the prior monday before the OR Bronch and balloon procedure was clearly evident. I did much better and tolerated much more exercise. I still am not back to my week 6-7 level, but I do feel like I can get there. The goal is to really try and keep the airways open this week, let Dr. Haithcock go in there Friday and open them even further. Hopefully, the antibiotics are keeping the infection in check and by next week should feel even better.
Our/my timeline seems a bit in jeopardy now in regards to all of us being back in maryland by Jan 1. But it seems like I may just have to stay an extra week or two. It is still up in the air. The boys and Rebec will go back though and start the school semester up there. We need to start to go on with our regular lives and look at this as just complications that are par for the tx. I really think I should be there by mid-january.
This 3 months as been hard, no question. But it has been filled with happiness, excitement, and hope all at the same time. Something, that pre-CF life right before transplant, did not have.
Again, thanks for reading and following along.
-Mitch
Right now it is very similar to a chicken and egg scenario. My anastomic connections have not fully healed, so they are probably like an infected wound. This infected wound, like all, loves bacteria. Well guess what, even with the transplant I have plenty of my old CF bugs in my throat area, and sinuses. So, the bacteria trickles down and makes the anastomes it's home. It creates infection which trickle even further down my airways. Since I have the narrowing, I can not clear out those infections, instead my body compensates and takes smaller breathes, without alot of air movement in my lower airways, little mucous plugs and infection stick around. More infection lower down then also leads to further narrowing. So, this is the cycle we need to break. The good news is it should be breakable, and my new lungs continue to show no signs of rejection. It could be much worse.
Not helping this process is the fact that my immune system is a little too suppressed. My white blood cell count was very low. So, low it can not help the infection. When they immunosuppress people they shoot for a low number to avoid rejection, but not totally deprive you of WBC. So, they took me off two of my meds for a few days to see if these levels come back up.
I went to Rehab yesterday and the difference from the prior monday before the OR Bronch and balloon procedure was clearly evident. I did much better and tolerated much more exercise. I still am not back to my week 6-7 level, but I do feel like I can get there. The goal is to really try and keep the airways open this week, let Dr. Haithcock go in there Friday and open them even further. Hopefully, the antibiotics are keeping the infection in check and by next week should feel even better.
Our/my timeline seems a bit in jeopardy now in regards to all of us being back in maryland by Jan 1. But it seems like I may just have to stay an extra week or two. It is still up in the air. The boys and Rebec will go back though and start the school semester up there. We need to start to go on with our regular lives and look at this as just complications that are par for the tx. I really think I should be there by mid-january.
This 3 months as been hard, no question. But it has been filled with happiness, excitement, and hope all at the same time. Something, that pre-CF life right before transplant, did not have.
Again, thanks for reading and following along.
-Mitch
Wednesday, December 2, 2009
Bronch Procedure 12/2/09
Here is the deal...Mitch's new lungs are showing major narrowing & major infection on both sides. Dr. Haithcock said the CT scan they took yesterday showed parts of his lung that were collapsing from the narrowing and infection. He is concerned because the infection has gotten a lot worse since the last bronch. Let me rephrase that- he is concerned about the infection, he said he is not overall concerned with Mitch's prognosis or the new lungs. He said that this happens between 15-30% of the time and with treatment- the ballooning and if necessary the stenting, it gets better. He will perform another OR bronch in 9 days.
I talked to Ken, the patient care coordinator, and will later page the attending pulmonologist, Dr. Coakley. The infection is having a hard time getting better because of the immuno-suppressants, and also the narrowing does not allow him to clear the secretions through coughing.
They keep saying that this will get better without any long term compromising effects.
Here is our mantra: Four short, sip-like breaths in to O-pen O-pen, two long breaths out, Heal! Heal! We have been receiving private kundalini yoga sessions, did Mitch tell you? Its been fabulous, a lot of breathing exercises, as the instructor has done a lot of pulmonary rehab work. Our yoga instructor is the lovely and poised:
HarDarshan Khalsa www.sacredlistener.com
Its been a great practice and sacred time to spend together!
Bronch Day
So, it is around 1am Wednesday am. I can't sleep in this hospital, although the room is quite nice. Hopkins should take note! The rooms here are quite clean and not incredibly hospital looking. Although, this soap box is better for another post, I am just so glad to be here then Hopkins. There, the rooms they put the CF patients in are dirty, the service staff never cleans your room, you have a small tv, but get this you have to pay $15 bucks a day to use it and to use the phone! Meanwhile they are building a billion dollar cancer and childrens center! Go figure. I can't fathom that this much smaller, but in my opinion, finer instituition has more money to devote to patient ancillary services. I guess they find it a priority though, and that helps. Small things like these, ie. good food, flat screen tv, clean room, nice volunteers, help people get better quicker! Newsweek needs to take this into account when they always rate Hopkins number 1 in everything, it just simply is not the case!
Anyway, back to my health. So, today or yesterday(tuesday), I saw everyone, including Dr. H. (Haithcock). That was nice of him to stop by at the end of the day. He even said he was going to re-arrange and few things and do my procedure first thing this am. So, that should be in a few hours. I know how things go though, and I know they have all kinds of rounds and transplant meetings weds. mornings, but the idea is to do me before this! He is so re-assuring. He told me simply not to worry. This is a complication that 15% or so develop and it takes time to treat, but he is fully confident it is treatable and the new lungs are fine. They switched my antibiotics a bit, so hopefully that might help as well. So, the plan is open up the narrowed airways (evident on CT scan), take cultures and biopsies, and also clean/wash/lavage as much junk as possible.
I'll have Reba update everyone later today or tomorrow. At least I got to hear Obama's speech and hear how hopeless and confusing Afghanistan is. I'd rather have my bronch tomorrow then get deployed there. Here's hoping it works.....The bronch and the new strategy (if you can call it that)..
-Mitch
Anyway, back to my health. So, today or yesterday(tuesday), I saw everyone, including Dr. H. (Haithcock). That was nice of him to stop by at the end of the day. He even said he was going to re-arrange and few things and do my procedure first thing this am. So, that should be in a few hours. I know how things go though, and I know they have all kinds of rounds and transplant meetings weds. mornings, but the idea is to do me before this! He is so re-assuring. He told me simply not to worry. This is a complication that 15% or so develop and it takes time to treat, but he is fully confident it is treatable and the new lungs are fine. They switched my antibiotics a bit, so hopefully that might help as well. So, the plan is open up the narrowed airways (evident on CT scan), take cultures and biopsies, and also clean/wash/lavage as much junk as possible.
I'll have Reba update everyone later today or tomorrow. At least I got to hear Obama's speech and hear how hopeless and confusing Afghanistan is. I'd rather have my bronch tomorrow then get deployed there. Here's hoping it works.....The bronch and the new strategy (if you can call it that)..
-Mitch
Monday, November 30, 2009
Too Much Turkey-Back in Hospital
Yes, I am back in the hospital, but no it is not from the turkey. In fact, this was perhaps the best thanksgiving I/we have ever had. The food was amazing, thanks to my Aunt Harriet. The table was spectacular, and everyone seemed happy. We all ate, drank, and talked the evening away. The kids were great as well, and loved the turkey. It felt so good to be home!
I worked out that thursday morning, and did not feel that bad, but had a slight feeling like the narrowing was returning as I was sucking air instead of breathing it, if that makes sense. As the days continued, the "sucking" of the air got worse, and it started to feel just difficult to breathe. Finally, by sunday morning I was wheezing very bad again. Although, the sound is a bit different then last time. And this time I also get very short of breathe just doing very simple things. That is a bit different. So, This morning (monday), I called my coordinator. I was suppose to anyway to check in after the trip home. I left her a message. I had Rehab at 11, so I told her we could touch base then. Well, Kristin, my physical therapist immediately picked up on my breathing changes and called right up to Becky. She was expecting the call. Anyway, the team came down and listened to me and agreed it needed to be addressed ASAP. So, they brought me in. They scheduled another OR Bronch for Weds. AM. Dr. Haithcock will do this one again.
Although it really is a downer to be in again, I am glad. Because they are monitoring me real close right now. They already have done a CT scan, xray, blood work, and changed my antibiotics. So, if something else other then this stenosis is going on, then they will find it while I am here. Plus if I get any worse, I am here. It makes sense. If I get any results, I will post them.
So, here I am and now everyone is up to date. It was a great trip home though, despite my breathing difficulties. That was the toughest part, because I do look rather healthy and everyone commented on this, but my breathing was a bit labored. More so toward the end. I really wanted to be home showing off my new lungs, but not yet. 4 weeks ago I was practically jogging, but there is no reason to believe I can not get back there.
I hope everyone had a great thanksgiving as well,
-Mitch
I worked out that thursday morning, and did not feel that bad, but had a slight feeling like the narrowing was returning as I was sucking air instead of breathing it, if that makes sense. As the days continued, the "sucking" of the air got worse, and it started to feel just difficult to breathe. Finally, by sunday morning I was wheezing very bad again. Although, the sound is a bit different then last time. And this time I also get very short of breathe just doing very simple things. That is a bit different. So, This morning (monday), I called my coordinator. I was suppose to anyway to check in after the trip home. I left her a message. I had Rehab at 11, so I told her we could touch base then. Well, Kristin, my physical therapist immediately picked up on my breathing changes and called right up to Becky. She was expecting the call. Anyway, the team came down and listened to me and agreed it needed to be addressed ASAP. So, they brought me in. They scheduled another OR Bronch for Weds. AM. Dr. Haithcock will do this one again.
Although it really is a downer to be in again, I am glad. Because they are monitoring me real close right now. They already have done a CT scan, xray, blood work, and changed my antibiotics. So, if something else other then this stenosis is going on, then they will find it while I am here. Plus if I get any worse, I am here. It makes sense. If I get any results, I will post them.
So, here I am and now everyone is up to date. It was a great trip home though, despite my breathing difficulties. That was the toughest part, because I do look rather healthy and everyone commented on this, but my breathing was a bit labored. More so toward the end. I really wanted to be home showing off my new lungs, but not yet. 4 weeks ago I was practically jogging, but there is no reason to believe I can not get back there.
I hope everyone had a great thanksgiving as well,
-Mitch
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