Archive for August, 2011

August 31, 2011

8-31-11 Wednesday +10 months

(From Lisa)

If at first you don’t succeed, try, try again.

Status: Off the ventilator for the second attempt. After attempt number one did not work as expected, we are understandably more cautious this time about raising the victory flag.

Events: Bruce had great breathing trials over the weekend and on Monday, so yesterday the pulmonologists decided it was time to try to extubate again. The breathing tube came out and a mask went on.

Who knew there were so many ways to deliver oxygen? Let’s just say in the past 24 hours they have tried everything from nasal cannula, to light-weight nose and mouth oxygen masks, to heavy duty nose and mouth oxygen masks with straps surrounding the head. (Truly the Hannibal Lecter look.) Right now he’s relying on a very solid-looking nose-only mask with Velcro head straps holding it on. They’ve tried everything from simple oxygen flows to BiPAP masks that give an extra push as he breathes in, and helps the lungs stay open as he breathes out. All this by way of saying it has not been an easy process to figure out what Bruce can tolerate, what he can breathe with, and what will work to keep him comfortable and off the ventilator. Needless to say it was a fairly sleepless night.

The doctors explain that Bruce’s diaphragm muscles are understandably weak, after the past few weeks on the ventilator. I think of it like a prize fighter who has let himself go to pot. It will take some effort and time to tone up those muscles again.

Both physical therapy and occupational therapy stopped by today. They had Bruce move his arms and legs, try to punch the air, etc. Some limbs worked better than others, and even mild exertion tuckered Bruce out – but all in all, not bad for a guy who has been in bed for three weeks.

Comments: Ethan and Rachel were up yesterday to see their Dad off the ventilator – which was a good boost for everyone. And the nurse yesterday even shaved Bruce with an electric razor to get rid of that beard that had started to sprout. Apparently that’s one of the skills they teach in nursing school! It was nice to see a familiar face emerge.

The team here is keeping a close eye on Bruce as it does all it can to keep him off the ventilator. No guarantees obviously, but we’re taking it one breath at a time.

Love,

Bruce (and Lisa)

August 27, 2011

8-27-11 Saturday +10 months

(From Lisa)

Status: Another period of breathing on his own, with an assist from the ventilator. Doctors want Bruce to exercise his lungs.

Events: Not much new here. We continue with the drugs to treat the CMV in the lungs. Doctors continue to work toward the goal of – once again – getting Bruce off the ventilator. Today he did pretty well. He was able to breathe on his own for over 10 hours, with assistance from the machine. (As I understand it, Bruce is doing the yeoman’s work, but the ventilator helps with oxygen and positive pressure so the lungs don’t deflate entirely as Bruce breathes in and out.)

Bruce had another CAT Scan in the early hours of the morning – at 1AM. It’s not because there was any emergency, it’s just that’s when the hospital world came into alignment to be able to do his test. Much of the timing depended on when the “Purple People” could come to transport Bruce to the CT machine. Long-time blog readers will remember Bruce’s sentiments about the efficiency of the transport folks at the hospital. It turns out when you’re in more serious condition; you jump a notch on the transport hierarchy. The regular transport folks aren’t allowed to push your gurney from one location to another in case something happens on the ride and emergency medical care is required. So it’s the “Purple People” as they’re called at Hopkins, who transport you. They are dressed in purple scrubs, and the teams are made up of hospital techs and nurses. The Purple People were apparently quite busy with seriously ill transports last night, and didn’t get to Bruce until 1AM.

Doctors said the CAT Scan didn’t show improvement – but they don’t seem overly bothered. They say those scans often lag behind what’s really going on in the lungs, and they are more interested in how Bruce is doing clinically. As the doctor told us this morning, “He is very ill, but all things considered he’s doing well.”

Comments: It was 10 months ago today that Bruce had his bone marrow transplant. As with many major events in life, it seems just a moment ago, and at the same time, a life-time ago. We are determined to do what we can to get to the one year celebration and beyond.

Meantime it’s raining outside as Hurricane Irene makes its way up the East Coast. No matter what the storm outside, we are counting on a peaceful night inside. Hope you have one too.

Love,

Bruce (and Lisa)

August 25, 2011

8-25-11 Thursday +9 ¾ months

(From Lisa)

We are reminded that this is a marathon, not a sprint.

Status: One step forward, one step back. Bruce had to go back on the ventilator in the early hours of the morning.

Events: Yesterday we were so excited when Bruce was able to get off the ventilator.  Unfortunately he and his lungs just weren’t strong enough to keep up, with just the assistance of an oxygen mask. Doctors said he was doing well breathing in, it was breathing out and expelling carbon dioxide that was problematic. Around 2AM doctors again had to intubate Bruce and put him back on the ventilator. They will work to get him off again as soon as they can. Already this morning, the respiratory therapist began another breathing test. Bruce managed five hours before tiring out.

Comments: It was a disappointment for Bruce and all of us to have him go back on the ventilator, but the doctors reassured us this happens and is hopefully only a brief setback. For now we stay the course. I wish I had some pithy Winston Churchill-type comment about forging on – but my human quote machine is sedated and unable to assist.

Thank you for all your uplifting comments.

Love,

Bruce (and Lisa)

August 24, 2011

 8-24-11 Wednesday   +9 ¾  months  

 (From Lisa)

What a difference a week makes.

Status:  Off the ventilator!  Yes, you read that right.

Events:  Yesterday, Bruce proved to the doctors that his lungs could still work.  He was able to breathe on his own, with an assist from the ventilator, for 11 hours.  That was up from just two hours the day before.   With that encouraging sign, they were hoping to get him off the ventilator entirely today. 

So today, after another successful breathing test, the big moment came.  Everyone was so excited that they crowded into the room. Our resident, one of our pulmonary doctors, the respiratory therapist, Bruce’s nurse, the charge nurse, me and Bruce’s brother Terry.   One, two, three and out came the breathing tube. 

Bruce is still on oxygen – using a face mask. But he’s breathing well and already trying to talk.  (Not surprising, knowing Bruce.)

And the doctors now have an actual diagnosis.  One of the biopsies from the second bronchoscopy turned up positive for Cytomegalovirus (CMV) pneumonitis.   As always, Bruce is unique.  They’d been hunting for CMV since he was first admitted, but all of the blood cultures came back negative.  It ultimately took two cells from the biopsy, using a special stain, to grow the virus.  The doctors say it’s very rare for a negative CMV blood culture, and a positive biopsy. Also, it’s rare for CMV pnuemonitis to rear its head this long after transplant. 

Once they discovered this, the doctors immediately stopped the high dose steroids. Those weaken the immune system – not a good thing if you’re trying to fight off CMV or any infection.  The doctors began treatment with Ganciclovir and Intravenous Immunoglobulin (IVIG).  IVIG will do a number on his numbers – so they’ll keep a careful eye on those white and red cell counts. 

Comments:  We know there are no guarantees about the days and weeks ahead.  Bruce is still quite ill – his lungs have to clear, he has to get over his C. diff, and has to regain strength.  But we are so amazingly thankful to be in the position we are in today.   We know all of your good thoughts, prayers and wishes helped bring us here.  One person wrote to me that if we had a dollar for each of those good thoughts we’d be millionaires.  We are already rich in wonderful family and friends.

 Love,

Bruce (and Lisa)

August 22, 2011

8-22-11 Monday +9 months

(From Lisa)

Status: All of the cultures are still negative for infection – viral, fungal or bacterial. The best guess is that Bruce has one of a number of inflammatory lung diseases that can result even this long after bone marrow transplant, especially in patients with Chronic GVHD, which he has.

Events: One of our brilliant (and I do mean brilliant) pulmonary doctors decided to try a regimen of very high dose steroids to try to fight the lung inflammation. Bruce is now on 500 mg a day for at least three days. Today’s chest x-ray did seem to show slight improvement, and Bruce has been stable on his ventilator settings for the past 24 hours or so.

Given that, doctors decided to switch the ventilator to what is called “pressure support mode”. That was a test really to see if Bruce could breathe on his own – with oxygen support from the machine. He was able to do that for about two hours before tiring out.

Comments: We’re really just taking it a day at a time. The nurses who are caring for Bruce are amazing and they help us stay centered as well. So do all of you. The comments, concern and good wishes are uplifting. Thank you all so much.

Love,

Bruce (and Lisa)

August 20, 2011

8-20-11 Wednesday +9 months

(From Lisa)

Status. The source of the lung infection still remains a bit of mystery. Nothing really grew from the samples from Monday’s procedure. They did a second bronchoscope yesterday, to take more samples to culture.

Events: Whatever is going in the lungs has progressed, and it has made it difficult for Bruce to breath, because of that he is now doing so with the help of a ventilator. He is on a host of antibiotics, anti-fungal meds, etc, to see if they will help. So far, they don’t seem to be making much of a difference. The doctors will be trying some new approaches beginning tonight.

Comments: So in some ways we are still very much in limbo. Bruce’s condition is quite serious, but his heart, liver and kidneys remain strong. It’s just those darn lungs. He’s in a big fight – but I know all of you are there with him.

Love,

Bruce (and Lisa)

August 14, 2011

8-14-11 Sunday   +9 months  

(Ghost writer Lisa at work- so any medical errors are hers!)

Status.  Weekends are slow around the hospital, and I am right on that same pace, just lying in bed and trying to get better.

 Events:  The nurses have been great about trying to let me sleep at night.  Since I have not had any fever they are willing to be a little looser on the “must take a patient’s vital signs every four hours” routine. That means I can usually get in six hours of uninterrupted sleep before they feel the need to poke and prod. 

  Breathing remains difficult, especially with any activity (and by activity I mean things like actually sitting up in bed.) I am on nasal oxygen.  

   At home I had worked hard to control my predisone-induced hyperglycemia with careful food intake and medicine.  Here I am unable to really control those variables, and my blood sugar has been all over the map.  So they are now paying very careful attention with lots of sticks to measure the levels, and actual insulin injections to bring the sugar levels down when need be.

   As you can imagine, when you come in to the hospital, they test you for everything.  First was the dreaded nasal swab (not fun)- that was negative for flu virus or anything else.  Unfortunately I am positive for the bacteria C. difficile – these days it’s often a hospital acquired infection that can occur with prolonged use of antibiotics.  I was positive when I was last here, so I was probably still positive when I came in.  They added a medicine (Flagyl) to my already prodigious pill supply.   It also means that anyone who comes into the room has to do the full dress- gown and gloves.  No mask at least.

Comments:   In a very coincidental and wonderful twist of fate – we received a letter from our donor on Friday.  This is our second later from her (we think it’s a she) – and we have sent two letters to her as well.   The donor remains anonymous until the one year anniversary of the transplant, then if both sides agree, they can exchange contact information.  We are so grateful to her.

   Tomorrow the long awaited bronchoscopy-  so they can figure out just what organism is inhabiting my lungs, the better to take aim.

   Have a great rest of your weekend.

Love,

Bruce

August 13, 2011

8-12-11 Friday +9 months

Status: As you know, I have been feeling less well these last two or three weeks, culminating in shortness of breath for most minor daily activities, which I thought might have been a gastrointestinal bleed, however my visit to Hopkins yesterday confirmed what it really was.

Events: Came in for my routine visit on Thursday, which turned out be anything but routine. I was short of breath even on the ride up to Hopkins, and my initial checks showed an oxygen saturation level (percentage of red cells saturated with oxygen) was 82 % (normal is 95-100 %). When the GVH doctor who we were seeing heard that result, she got quite excited – but not in the way that you’d like a doctor to. She immediately ordered a chest and sinus CT scan, paged my transplant doctor and began the process for admitting me to the hospital. The CT scan, in fact, showed cloudy spots on both lungs. The likely diagnosis is pneumonia, but they’ll find out for sure with a bronchoscopy. More on that later.

They put me on oxygen and eventually headed me up to Ward 5B, the bone marrow transplant ward, which I had happily left so many months ago. The familiar nurses were so kind and welcoming, glad to see me, but not to see me back of course. Doctors started me on broad spectrum IV antibiotics to fight the lung infection. Had the usual restless night in the hospital, which meant I was pretty wiped and slept all day today.

My bronchoscopy was set for late afternoon today, requiring that I not eat or drink anything after midnight. They finally brought me down for the procedure around 4:30PM . The idea was to look in the lungs and take a few snips so they could better identify the organism that’s taken route there – that way they can better target the antibiotic. But as we well know, things don’t always go as planned. Unfortunately there was an emergency in the bronchoscopy recovery room where I was waiting for my procedure to start. A patient went into cardiac arrest.  Thankfully they were able to revive her, but they had to cancel the last few procedures of the day – which meant me. They’ll try again on Monday, and in the meantime just keep pumping me with the big-time antibiotics.

Comments: My transplant doctor wagged his finger at me and told me I should have called him on Monday when I felt faint and ended up having an unexpected rest on the carpet. He told me not to wait next time. Lisa told me she has taken over all doctor calling responsibilities and will not listen to the doctor/patient when he insists she not call the doctor.

To say that I hate to be back here is an understatement. Don’t get me wrong – the transport folks were actually very nice today, the nurses are top notch, I have my private room of course. However, there is no place like home. That said, with cloudy lungs there’s no place like the hospital, so my plan is to let those antibiotics do their work and then get out of here as quick as I can.

The good/bad news is this means a resumption of the blog on a more regular basis for the next few days at least. See, a silver lining in everything.

Hope your summer is more restful!

Love,

Bruce

August 9, 2011

8-8-11 Monday + 9 months

Status:  I’ve gotten a lot lashes with a wet noodle (an old Ann Landers term) for not keeping up my blog more frequently – we’ve heard you loud and clear.  It’s been a rough couple of weeks with this GVH flare up.  Mostly skin and mouth issues, but it exacts fatigue as well.

  Remembering, of course, that your skin and mucous membranes are one continuous surface, from your face to your lips and all the way down the line. That’s why so many diseases simultaneously attack the skin and GI tract.  My big areas of attention are my cracked, bleeding lips and denuded tongue.  I’m on a regimen of frequent flossing, brushing, gentle tongue scraping, then rinsing with a steroid solution, followed by viscous lidocaine to deaden the burning, swish and swallow anti-fungal solution to prevent yeast infection, and finally a coating of steroid cream for the lips, topped off by petroleum jelly to keep things moist, and an anti-fungal cream at the corners of my mouth – quite the routine, but I think we’re making progress..

Events: Today going from the bedroom to the bathroom, I became light-headed and dizzy.  I immediately put my head down and gently crumbled to the carpeted floor. I lay there noting that I was also short of breath, and had a fast heart rate.  It had all the feelings of a previous episode of low blood pressure from a GI bleed.  Although there’s no other evidence of GI bleeding, I’ll be interested to see what my hematocrit is when we visit Hopkins this Thursday for lab checks. 

Comments: When you run marathons you learn there are lots of ups and downs.  But if you want to make it to the finish line you have to just keeping moving ahead.  We’ll make it through this little bump in the road and continue on.

Love,

-Bruce