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

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!

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.

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.

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.

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.