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

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

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.

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

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