Mitch is Home Sweet Chapel Hill, Home

We picked Mitch up from the hospital Tuesday night after "meet the teacher" evening at Mary Scroggs Elementary, and we brought him to our home in Chapel Hill. Simon and Matias started first grade on Wednesday. And get this! Mitch actually got on his bike and went with me to pick up the boys in the afternoon. He even pedalled a bit (its an electric bike- but even holding himself and bearing the heat was tough. He really wanted the boys to be happy he made it, and they were!

Mitch is losing fluid. He now weighs 137, which is coming down nicely. His potassium is UP again to the 6's so he is drinking a med to adjust that, hopefully promptly. His PFT's today at clinic were 35%%. Dr Lobo said that is because of the fluid and will get better. Docs are pleased with his progess. His kidneys are in a normal range now. He got a shot to raise white blood cell count- its too low now- because of the campath protocal he had to avoid rejection- which is basically like chemotherapy.

Really thinking about those who are still having a hard time in the hospital and fighting very hard,...really hoping it all works out for you, very soon...

Code Blue: Superman-Man of Heal

Taking a long walk yesterday with the boys. Giving them a free ride on the IV pole!

I'm going home today! Amazing since Friday, they called a code blue on me during my bronch procedure. I think I just needed a jump start. Because by saturday afternoon I was feeling much better.

This has been a long battle. I have a tendency to block things out including time, that is my coping mechanism. Before transplant especially, those two weeks were I basically was getting worse each day it simply does not seem like 2 weeks. I have been in the hospital now for 48 days. The good thing is it does not feel like that much, however as i get ready to go home the time will start to knock on my door. I will wonder how much the boys have changed, how it is almost September, the boys start first grade tomorrow!, football season is starting!, and I will think about those 48 days and ponder what is different. What is different is I now have two new lungs again. This sounds weird but these lungs just seem better and stronger, eventhough I am not breathing great yet.

Although I am able to go home, I have a long road. I still have major edema and need to shed at least 20-25 pounds of water weight. The doctors think with my kidney function being normal again I should shed it as I move around etc. which is more likely at home. I need to stay on blood thinners for awhile because of the blood clots I have. I need to watch my potassium level. The edema is mainly in my chest and upper legs. In the chest it creates pulmonary edema. So, my breathing is improved, but won't be great until I lose the edema from my chest. It is like I have a girdle on or something. when I try and take a deep breath in, a band of swelling just tightens and prevents my chest from expanding. Very annoying. Finally, I have some secondary issues like the nerve injury to my right arm. It is a mess, I have no bicep innervation yet. So, there is no bicep muscle, it is just flapped down. Some of my fingers are numb, and my forearm as well. so, it is very very weak.

But the bottom line is i am healing. I am breathing and feeling much better and moving around. I am going home on no IV's at all. however, I am nervous to take out my IV line in my chest as I have serious access issues and I know if it is pulled I will need IV meds in a week. The doctors agree it is safe to leave it in for a bit. So, we will see in two weeks or so.

Thanks for all the support. We have conquered the toughest hurdle and are ready for the next.

-Mitch

SUPERMAN RETURNS

THIS IS MITCH IN ICU THIS AM, JUST AFTER EXTUBATION
THIS IS MITCH A FEW HOURS LATER....... HE IS BACK.

Extubated

With M now. Though he is sleeping, he is not on vent. He is breathing on his own with 3 liters. His potassium is coming down as well as creatinine is trending down too, today 2.3 approximately. Potassium is now like 5.6 I think he said. He is shedding about 75 mls Of fluid an hour, which is good, for swelling. He briefly woke up, and asked what happened but then immediately fell asleep again. I am so happy he is off the vent!

One Month Bronch Gone BAD- My Sweetie IN ICU

Dr Noone told me that Mitch had stopped breathing during the last bit of the bronchoscopy and so they intubated and put him in ICU. Dr Noone said he hoped Mitch would get off the ventilator in the am.
Now, I just got off the phone with ICU nurse, its 11pm,(I am stuck at home with Simon and Matias- no kids in ICU allowed)his potassium levels are skyrocketing to 6.9 now, and they are treating that; he is on 100% vent, and she said they are monitoring him very closely because of the potassium levels- which is harmful to the heart. I asked if she thought he would get off the ventilator in the am, and she said she wasn't sure because he "coded" during his bronch. I suppose I thought coded meant his heart stopped because I asked her about that and she said that it just slowed down a little so they want to monitor him very closely. Plus, with the high potassium levels it makes this even more a concern.
Could anything else go wrong, I ask? Can a human being endure any more prolonged hardship and suffering?
I imagine Mitch lying in that room by himself with all the monitors, IVs, beeps, the blood gas arterial sticking and poking, and it rips my heart out of my chest, wrings it out, stomps on it, tears it into shreds and
I am left with the giant void of dark unequivocal FEAR.

Status: Still in the Slammer; 30 days Post Second Transplant

44 days total. I hope he comes home soon, but it will not be today. We are waiting in his room for them to take him to have a bronchoscopy- the one month bronch already! They may take a biopsy so they stopped his IV heparin. Mitch still has major edema and pulmonary edema. The past week we had a real scare with his kidneys so they had to stop the lasix last weekend. His kidney (creatinine levels) were very high topping at 3.1 . They mentioned dialysis (yikes!) and lowered all necessary meds and took him off everything else, liquid restriction, etc.. All week we have been waiting for the kidneys to recover and they have very slowly been ebbing down, but still in the danger zone now at 2.4 , this am. Also, his electrolytes are imbalanced and they have been trying to cut his potassium level with a disgusting drink and IV insulin cocktail. He received more blood on Tuesday night.
Mitch has been down this week, emotionally. Totally exhausted, periods of semi-conscious wake-dreams, very uncomfortable with the 25-30 extra pounds of fluid he can't get rid of and feeling scared and defeated because he can not take a deep breath because of all this fluid. He is on 2 liters of oxygen and sometimes 3. He won't be able to breathe until the fluid comes off because there is just no space for his lungs to expand.
The doctors said that it is a waiting game, as far as the fluid is concerned. If everything goes ok with the bronch, then maybe he will be able to come home on Monday, on oxygen. I don't think staying in the hospital any longer will be wise from a mental health standpoint. This is long enough, he is starting to dub his iv pole, Rebecca, and other medical instruments after Simon and Matias.

Still Swelling & now Clots too 8/14/2010

Hi.
Yes, I have been avoiding you.
It's because I want to write and tell you how great Mitch is doing and how he is home, but he is not. So I have to just come clean.
He is still having major swelling issues and also now, blood clots in neck and axillary areas.
The clots were just discovered so they may have been there the whole time, but still, now there is another IV bag hanging from the IV pole and it's name is Heparin, the evil blood thinner... He will have to be on blood thinners for a while and I am not sure how long he needs the IV blood thinner. The IVs are evil because they are preventing Mitch from coming home. I really really miss having him at home, and the boys ask every day when he is coming home. He needs the IV lasix too, to reduce the swelling so that is another culprit keeping him here. He is even using oxygen a little again because of the fluid causing him to be short of breath.
He has been feeling awful about half of the time and managing the other half. I cannot imagine- well yes, I can imagine because I have been witnessing Mitch live through this- But I can not actually experience or know what Mitch must feel like after living in the hospital for the past - almost 6 weeks. I know others have experienced this and some much longer, so in a way he is lucky, some might say- its all relative- but I do not consider this a lucky experience for someone to have.
Every time i walk into the hospital, I become aware that Mitch has been here in my absence, while I have been able to leave and experience life outide these walls; the walls of this insitution we call a hospital. Life with the boys- be outside, see nature, sleep in a real bed, be free, and he has still been here, in his hospital room of flourescent lights, blue chairs, and white walls.
We were conversing yesterday about how time in the hospital is similar to serving time in prison. There are pros and cons to both- in prison you are not sick, but then again, you don't get any drugs- well, without seeking them, that is... In the hospital you have a television in your room, and a more comfortable bed. Hospital room has a window but it can't open and it looks at a concrete wall. In jail, no window, or maybe a small one- some can even see the sky... so that is even, i think. Food is about the same but I can't attest to either. In prison, you get to go outside, exercise, and you feel better, I presume. In prison, you have friends. In the hospital, all your "friends" have to wear a contact gown and sterilize their hands and sometimes wear a mask to see you. In the hospital you can not leave the floor or go outside without a nurse or let's face it- prison guard, coming with you. In both places, you lose a lot of dignity, but you can gain it back.
In the hospital, you are subjected to many methods of torture and witness to your body manifesting in scary and horrific ways; needles, procedures, test after test, etc. In the hospital and prison, you idealize of when you will not be there anymore, but you are unsure of when that will be exactly.
Of course, there are obvious discernible differences, and mentioning them would be a waste of our time, but you see what I mean.
No freedom in illness... Yet, he is lucky to be alive, he is lucky to have gotten a second chance- that much is true. Mitch says the days and weeks blur together. He doesnt talk obsessively about leaving or what he wants to do; he doesn't feel good enough yet.
I hope I can write very soon telling you he is home, or at least that he is thinking about days outside of these walls.

Quickie-thought I'd be out by now but having serious swelling complications. Very painful, but hopefully turning corner.

'Some rise, some fall, some climb, to get to Terrapin'

The dynamic duo who helped me all weekend make huge progress! My Mom and her dear cousin Gwen

It has been almost three weeks since they took me back for surgery, I guess officially that will be this wednesday the 11th. That could be the day I get out of here! Perhaps even tomorrow, but that is a long shot. Things have really progressed well.

I had my last chest tube, the pigtail one in my back, pulled saturday. This was the one they had to insert last week because they found a pocket of fluid. It feels so amazing to be tube free from all parts of my body. That is a huge accomplishment! My new lungs feel amazing! I don't want to get over-confident but I can definitely feel a difference from the first time. I can take deep full breaths, as much as I can with a broken sternum, broken rib, and a lot of swelling, but it just feels normal. No pains or gaps or noise like the first time. The lungs are clear and the chest x rays have continued to look better and better.

The last few days they switched me from iv lasix to oral lasix. I am on it because I am retaining fluid still and swelling. Well, the swelling has gotten incredibly bad, this is an annoyance but should resolve. I have gained about 30 pounds of water weight. I actually look pretty good at this weight lol, but it hurts. Last night you couldnt find my knee. If I elevate my legs it gets a bit better, but they and me want myself up and about. Not sure why I have the swelling this time and not last. The other secondary issue is just my nerve injuries and although a hinderance I am thankful for these lungs and will concentrate on them.

I wanted to give a special thanks to my Mom and her cousin Gwen Angster. Gwen came to visit and keep my mom company this weekend while Rebecca was back in DC with the boys having their party and getting more things. Gwen was so much fun to have as a visitor. It really kept me company. Plus she spent a lot of time at our place here cooking foods for when I get home. She cooked so many delicious sounding meals and muffins and who knows what else. I am so lucky to have such a great extended network of family and friends. Thanks so much Gwen it was so great to see you and I love you. It meant a lot for you to visit.

more posts to follow,

Mitch

Making progress

Hello everyone. It has been about 16 days since the transplant. Things seem to be steadily improving. I got my last of the original chest tubes pulled yesterday morning. I still have the smaller one in my back that they placed to drain the clot they found. They will probably keep this in for awhile just to make sure any fluid doesn't accumulate there.

I am up and walking much easier and breathing very well. My chest X-rays have greatly improved as well, so despite a still slightly elevated white blood cell count the team is very happy.

My neuropathys I am suffering from continue to be distressing. My right arm remains very weak, swollen, numb fingers etc. But the biggest thing is my bicep is somehow completely deinervated. I have no ability to use that muscle. My left arm also has similar sensations and weakness but all the muscles work. Neurology is following me closely and wants to do a few more tests. They did nerve conduction studies yesterday and it was horrible. It took 5 hours of needles and shocking etc. Good news was they did not detect any chronic nerve issues, however they did confirm the bicep is dead. Dr. Haithcock feels my brachial plexus got compressed during the surgery and in time the bicep will come back. Let's hope. My arm is almost useless at times.

So, the big picture looks good. These lungs feel so much better inside me. It is a weird feeling, but I can just tell, just like from early on the first transplant I had the sense on my left side that things were not right. I have none of this now. Just the pain of the surgery and my sternum being broken and rewired. The plan is for me to continue to improve over the weekend and possibly be discharged early next week! Then rehab will start. It is much needed as I have basically been bed ridden for close to 4 weeks now at least and my body has been through a lot of trauma.

Thanks for following and I hope to have some more positive posts soon.

Mitch

08/05/2010-10 years post

10 years post the day rebecca and I were married! It was a beautiful day, some of you will remember. Despite the dead summer the weather shifted to a blue sky 84 degree day with no humidity.

Rebecca is a most unique and special person. For those that don't know. I am more then lucky to have been her partner for 10 years officially, but just about 16 total. We are best friends. Having known eachother your basic whole adult life allows you insights and knowledge that some might not ever witness. She is a true gift to this existence. She is so grounded in her emotions and understands human life and it's capacity. Strong when strong, but never holding emotion in and not bottling it up. Instead she empowers herself with it and finds a way to enjoy life and be the most amazing partner, spouse, friend, and the last year a miraculous caretaker who has saved my life.

I love you, happy anniversary

Finally time for a proper update!

Taken today 8/2/10 UNC Hospital Day 12 post Double-Double


Hello everyone!



Well, depending upon how you look at it, this is day 11 0r day 12 post transpant. As Reba, so eloquently writes I was taken for the second transplant early evening on the 21st of July, out of the operating room in the am hours of the 22nd, only to return again for a few hours that afternoon. I have no obvious recollection of any of this, my first recollection is really the breathing tube being pulled mid-day friday the 23rd. That we can agree was 10 days ago. I have had a successful 10 days so far and overall. Yes, there have been a few setbacks, namely the other day, where I started to have an overall weak feeling, my white blood cell count was elevated, and I was just not breathing as well. Dr. Veeramachaneni (one of the other main surgeons) was all over it and ordered a CT scan. It showed a pocket of fluid towards my back ribcage area on the left side. So, off to the Interventional Radiology where they had to put another chest-tube into that area to drain it. This 2 days after getting one tube pulled. So, back to 4 tubes, however this one is in my back and is quite uncomfortable, but luckily a bit smaller. The tube immediately drained like a cup of old blood etc. and continues to do so at a slow pace. Yesterday, sunday, I felt horrible, It was like a rebound day I hope. I could barely get out of bed and had very limited energy and swelling. But I was also still weaning off some meds, no more epidural, no more morphine pump. Last night was much better and today have seemed to have turned a corner with my breathing and it feels as though it is getting stronger. So, they pulled a chest tube today! Back down to 3.



Progress is being made. It is very different this time in a few areas. I have much more swelling in certain parts of my body, my feet, ankles, my stomach and sides, and lower back. Not sure why I have the edema this time, but it is uncomfortable. It fluctuates. However, the pain associated with my chest and the ability to walk and move is much easier this time around.



One complication that is becoming slightly serious is what appears to be another nerve compression injury. This time to my right brachial plexus. But basically, my right arm bicep will not work at all, progressively my forearm is becoming more swollen and painful, and my thumb, index, and middle finger are very numb and painful. This has been getting steadily worse. Neurology is looking into this, but it is always going to take a back seat to the lung options, that is understandable, however the rate it is worsening is alarming, so tomorrow, I will have to address it more. If this was the only issue for someone they would be freaking out.



Not sure what tomorrow might bring, hopefully breathing continues to get better, swelling subsides, and my arm and circulation gets addressed a bit. Thanks so much for people who reached out to Rebecca and helped her through this. She has been the perfect spouse, caretaker, and mother through this. No one has her strength, understanding or compassion. My mom too needs some thanks as well. She has made sure, with Rebecca that I made it through this not alone and that the docs are constantly watching me.



I hope to post more frequently. It is great to be able to breathe again! I feel these lungs are stronger and fit better and should find this out in the next few weeks.



-Mitch

Quick Update: 10 Days Post- Transplant #2

The past two days have been plentiful in the sense that Mitch has had three procedures.
Yesterday morning, he had an MRI of his brain and spinal column, to look for causes of the neurological symptoms he has been having. No definitive word on that test yet. But hypotheses are that the symptoms are just an injury to the brachial plexus during surgery and symptoms associated with the meds he is taking.

Then, he had a procedure in radiology, based on the results from Friday's CT scan of his abdomen where they went in and took out a clump of old blood and inserted a new chest tube on the left side to lead that area to drain. The CT scan showed that he had pockets of fluid and blood on the left back area, that was preventing the left lung from having room to inspire.
The right lung looks groovy and is doing its thing.

The third procedure was this morning (Sunday) and was another operating room bronchoscopy. They went in and did lavage cleaning suctioning on the left, again hoping to help it open- it looked a little collapsed on the scan and xray.

They say this all normal routine maintenance stuff and not to be worried- so don't worry, people! Mitch is going to be good, hopefully soon.

Mitch's only brother, Terry, came to see him this weekend for a few shorts visits with his wife, Tracy.