Transplant!!

I'm pretty tired, but just wanted to write that the transplant is underway and going well! It's actually happening as I type this. Unlike an organ transplant, a bone marrow transplant is simply a blood transfusion, except that the blood consists of pure stem cells, not mature blood components like white cells and platelets. The stem cells know that their place is inside the bone marrow, and they automatically migrate there after entering the bloodstream. No direct injections into the bone are needed.

Johanna, my parents, Cindy and Brian showed up around 11 pm, since we had received word that the cells might be here early. It turns out they didn't show up until 1:30 am, so my parents snoozed for a bit while the rest of us chatted and watched Roscoe Jenkins on the hospital movie channel. We munched on the cupcakes Johanna had made for the event. The nurse was great and kept us up to date and fired up for the big moment. She even chilled some ginger ale for faux-champagne toasting!

The next we heard, the courier was waiting for a taxi from the SCCA and the stem cells arrived a short time later. They came in a normal, everyday picnic cooler. After cross-checking the paperwork and double-checking records, the transfusion was officially started. Everyone sang Happy Birthday and I opened a few cards from my family. My parents had brought a couple of balloons, so my mom tied them to the ends of the bed. We toasted with the ginger ale, took some pictures, and then everyone headed home for some sleep. Poor Brian has to be to work at 8 am tomorrow, so it was neat that he stayed up.

Even though it doesn't carry the weight of a big procedure, it's still an exciting and momentous event that has been in the works for 6 months now, from being diagnosed back in June, going through several rounds of chemotherapy and blood transfusions, searching for donors, finding just one out of 10 million that matched, and the rest of the events leading up to and preparing for this day. I'm just really happy that everything is going as planned, and especially grateful that the donor was willing to step up and do this and help save my life. Not only did she have to endure several medical tests and blood draws, she has been taking injections for the last several days to push her stem cells into her peripheral blood, then spent several hours yesterday morning hooked up to a machine giving blood. I'm so grateful for her for doing all that, and am trying to figure out what I want to say when I get the chance to write her.

Here are some pictures from the night's event :)


Waiting for the cells to show up


Nurse Erika begins the transplant!


All the nurses sign a little card :)


The tiny stem cells appear as little particles in the tubing


Happy Birthday to me!

Counts finally dropping

I just got my latest blood counts, and the numbers are definitely trending downwards. On the left is a plushy red blood cell which I've got hanging from my IV pole to celebrate. Platelets are at 72 and white blood cells are at 0.7, not as low as they've ever been, but steadily dropping. It's weird to be cheering for them to go down, but it makes me feel a little better since it means the chemotherapy is doing its job. I was getting a little worried that I might be *too* healthy (haha yeah right) and that the chemotherapy might not have been strong enough. But based on the drop in white blood cells from just yesterday to today, I don't think I need to worry anymore.

Take a look at the charts below. The purple bar on the left was when I had induction chemo a few months ago, and the purple bar on the right was from the conditioning chemo just last week. The green area is the normal range, and you can see that the induction chemotherapy a few months ago finally knocked things into remission for the last several weeks. The recent conditioning chemo is causing a downward trend similar to the one that happened right after the induction chemo, before the counts came back up again.

White blood cells


Platelets


Hematocrit (% of red blood cells in body)


ANC (bacteria-fighting ability)

So as you can see the main issue we'll be watching out for is infection, since my white blood cells are expected to stay around 0 for the next couple of weeks. They dropped like this when I had induction chemotherapy as well, and a whole rash of issues like liver problems, fungal infections in the lungs, and a slight case of pneumonia popped up because of it. So we'll be very careful for the next couple of weeks to make sure I stay really clean. We'll also be watching out for graft-versus-host disease, which comes up in 50% of transplant recipients in the first few months, and can range from a whole variety of things, like skin rashes and organ problems. I've already started taking medications to prevent it, but there's still a 50/50 chance I'll be dealing with some sort of GVHD issues so the doctors will be doing a lot of monitoring to catch things early.

One of my physician's assistants came by and brought a picture of a patient of hers who is celebrating his 25th transplant anniversary. He's living a healthy life and sends her a Christmas card every year. I got a little teary-eyed thinking about it, since it really puts the whole thing in perspective and how big of a deal I'll look back on this time 25 years from now. I hope it can just be something that I had to take care of and got it done, like getting a crown or a cavity filled. And maybe it will be. There are certainly other transplant patients who are running around in perfect health a year out from their transplant. Or maybe 25 years from now I'll remember this time as a celebration and will be looking at life as something to continuously savor.

Today a person from oral medicine came by to check out my mouth. This is one of the several clinical trials I signed up for to provide researchers with more data, but this particular one has a lot of benefit to me since it means I'll have constant monitoring over the mucositis situation. I remember the trial saying that they would come by every few days starting on Day 0, so today is the day. She inspected all corners of my mouth and noticed some thinness starting in the gums, as a result of the increased acidity in my mouth because of the extra mucous and saliva. She brought me a new toothpaste with thinner, softer bristles and added baking soda to my saline mouth rinse, which she says will help thin out the saliva. It feels good to be taken care of like this.

That's about it for now. Had a great lunch of Ivar's clam chowder and hard-boiled egg from the room service menu. So far salty food still tastes the best, so I've been sticking to things like pretzels, chicken noodle soups and egg sandwiches. The nurse just stopped by to add a new antibiotic to my pole o' bags, and other than the occasional blood draw or vital signs check, it's been a nice and quiet day.

Stem cells on the way

Just got word that my new stem cells are on the way! They're expecting them at SeaTac airport tonight around 8:30 pm, and they won't arrive at the hospital until about 1 am. I guess they have to go to the lab first for treatment. So it looks like another day similar to yesterday, then things should liven up around midnight.

Ready for transplant

That's me doing another couple of miles around the floor. The floor is shaped like the letter "A" and it takes 10.5 laps to complete a mile, including the little ends of the "A", so there's a little bit of back-tracking. There are emergency exits at each end, and Johanna and I are in the habit of kicking the door-jam before turning around. My sister thinks this is cute.

Today's day of rest went ok. It's not really a day of rest, it's more like a day to let the chemotherapy toxins finish draining from your body. Literally. I did a lot of peeing in these last 6 days. Just a few days ago I weighed 180 pounds and am now back down to 165. Most of it was from fluids, which they kept me heavily pumped up on during the chemotherapy. I think the infusion rate was 240ml/hr, which is about 1 1/2 gallons of fluid a day, not including the water I was drinking myself or from meals. I am also on a variety of other drugs, in both pill and IV form. One is a drug to ward off potential seizures that could occur from the Busulfan, one of the chemotherapy drugs. Another drug reduces the chance of GVHD (graft-vs-host disease), which I'll be on for a while even after I leave the hospital. Another drug helps protect your bladder, since the breakdown of one of the chemotherapy drugs can cause bleeding in there. There are drugs to protect your liver, and drugs to fight my not-quite-gone fungal infection. It's no fun being hooked up to the IV pump or taking a dozen pills a day, but it helps to know why they're there. One of the nurses left a fat reference manual called the "Drug Guide for Nurses". I haven't looked at it much, but it's nice to have since it can be hard to remember why you're taking that one particular drug with the funny name.

Today we put a new dressing on my Hickman catheter. The dressing is really just a square piece of sterile sticky tape that covers the entry point. They rip off the old tape (fun), sterilize the area, then put new tape down. It doesn't sting as much as the PICC line for some reason. Up until a few days ago the dressing included a round patch called a bio-patch, which covered the entry point and protected it from bacteria. Now they've switched to a different kind of patch that is supposedly better, and this one has clear goop instead of the bio-patch, so now you can see the entrance wound and suture in all its glory :) It's kind of cool, and makes a better impression when showing it off to people. I feel more like Iron Man now.

My dad hung out for a while and we talked on the phone with my aunt, uncle and cousin. My sister and Brian came over again and we watched more of Monk, then chatted with Joe who stopped by as well. Ryan and Joanna stopped by with their baby and I showed them all the decorations in my room. Johanna and I fiddled around with the video chat more since she's still at home with a cold, and my dad even got my mom up to speed on the video chat at their apartment. All in all it was a busy day!

I think I'm ready for tomorrow, but I'm not really sure what to be ready for. For example, I was expecting to feel awful by now, but I don't really feel that bad, relatively speaking. In fact, I ate the most food I've eaten in a day since I got here: a bowl of cereal for breakfast, cheeseburger and potatoes for lunch, chicken noodle soup, grilled cheese sandwich and pretzels for dinner. And right now I am absolutely craving crunchy tacos. At this point in my induction chemo, I was lucky to get down a few pieces of Cheerios since I was experiencing the full-on hell of mucositis and watching the insides of my mouth slough out.

I guess I'm a little worried that if I'm not feeling absolutely terrible, then the chemo drugs must not be working to their full effect, which might cause the donor's blood not to engraft as well. In fact, I've been watching my counts for the last 6 days, and they haven't really dropped very far at all. They're all still way above what my "normal" levels had been like for the last 6 months. But the doctors and nurses say not to worry, that they see this all the time, and that we're just seeing the lingering effects of blood cells that haven't died off yet. It'll take the new blood about 2-3 weeks to engraft and that I should expect the old blood counts to bottom out about 3-4 days after the transplant.

They also say to expect things to get worse, since mucositis usually doesn't surface until around day 3 after the transplant and I might not be able to eat food during it. I've been brushing my teeth and using the special mouthwash constantly, so hopefully it won't be as bad as last time. I was on IV nutrition for weeks last time, and while it was good to have as a backup plan, it was annoying sometimes and hard to get weaned off of, since you were never really hungry and you couldn't just quit it cold turkey, they had to cycle you off of it. IV nutrition can also be a source of infection since it's a breeding ground for bacteria, so if I can keep off it this time, that would be great. I'll also be taking just enough immuno-suppressive drugs to prevent my old blood from fighting off the new blood, but not enough to keep the new blood from beating out the old blood and leukemia cells.

It all seems like such a delicate balancing act. All I can really do is keep my body prepared and hope for the best really.

Cross your fingers!

2 days til transplant

Hi, it's Cindy again blogging from Steve's hospital room. Steve is feeling about the same today. He is keeping food down pretty well but still feeling queasy. And he walked two miles again today! 

My dad spent most of the day here hanging out with Steve. They spent much of the time reading their books :). Steve's reading a pretty good book called "Diary" by Chuck Palahniuk. 

Today was the last day of chemo for Steve (hurray!) and tomorrow is a day of rest before the transplant on Monday. Steve's counts went down a little today, but not much. This chemotherapy stops the production of blood cells, but it can take some time before the old cells die off. After the transplant, new healthy cells will be produced to replace the old cells.

Today Steve had fun setting up the iChat video so he could "visit" with Johanna since she is home sick still. It's pretty cute. Here's a picture of Johanna waving from home, as seen from Steve's laptop screen. You can see us in the top left corner looking goofy. We had fun playing with the different backgrounds. You can put yourself in Paris or in the clouds or under water with fish. Here's another picture of Johanna with a blacklight effect. 

Tonight we watched a few hours of the show called Monk. It's a show about an obsessive compulsive detective and it's pretty funny. We started with the first episode of Season 1. There are eight seasons so we have a ways to go :)

Brian and I checked out the cafeteria on the first floor. He had a pile of beef enchiladas which, I have to say, looked pretty unappealing. The cooks piled on a little extra because they were about to close and were going to throw it away, anyway. I played it safe with yogurt and chips. Luckily, Steve has had good luck with his room service food, which is pretty tasty. You have to be quick with the food around here, because last call is at 7:00 pm. 

Steve says hi and thanks for all your comments. Over and out.

3 days til transplant

Hi everyone, Steve's sister Cindy here. My husband Brian and I are here visiting Steve, mainly watching him lie in bed :) 

My dad spent a few hours visiting with Steve today. Unfortunately, Johanna developed some cold symptoms and was turned away at the hospital when she came to visit in the afternoon. My mom is also coming down with a cold, so she hasn't been by in a couple days. Major bummer. I hope they start to feel better soon so they can visit.

Here is a picture of Steve that Johanna took this morning. Lookin' good, Stever! Steve is feeling more nauseated today than yesterday and has been asking for consistent doses of Adovan, the anti-nausea drugs, which help a little. He says it feels better if he stays still, so he has not spent a lot of time out of bed. He did manage to get up today and walk two miles, which is more than I can say for myself, so that's pretty impressive! Woohoo! Nic and Rachael came by and walked with him for part of it. 

Steve's platelets and blood counts are going down a little each day since he was admitted on Monday, which is to be expected. But they are still far higher than they were a few months ago--thanks to the last round of chemo he had, which brought them all up into the normal range. Today his platelets are at 115 (down 27 since the day he was admitted), and his hematrocrit is 33 (down 9), and neutrophils actually went up a little to 3.91 (from 2.38). White blood cells are at 4.77 (from 4.84).

A couple days ago, we decorated Steve's room with tons of pictures that he can see from his bed. Here's a picture of the pictures! 

That's about it for the update. Steve says "hello." He has a chocolate milkshake to drink now.

Transplant day -4

Here's a picture of Steve today. I think the doctors are doing an excellent job of managing the fluid retention and reducing that puffy look. Every day Steve likes to tell me how he gained 10 lbs and then lost it again. Steve is still eating well and managing the nausea. When I left last night I was worried about his balance, but I was excited to see that his balance was good this morning. I talked to the nurse and she told us what we could do to still get exercise if he is not quite stable on his feet and they have a cool walking apparatus to help. So far we don't need it and Steve did his typical morning mile - after which he gets a well deserved nap.

I got to talk to his PA this morning who did one of his spinal taps and lumbar punctures at the SCCA. It's really nice to have familiar faces who know Steve over time. We got to talk a lot about keeping Steve moving and out of bed. She confirmed my suspicion that a day of downtime and sleeping all day can be a set back - making it that much harder to get moving again (succumbing to the "jail" effect as she says).

This is day 4 of his preparative treatment so every day feels like a big accomplishment - closer to transplant day! Steve says "Hello blog audience! thanks for sending me strong thoughts! Hopefully I'll be feeling better soon."

Day 3 post (transplant day -5)

Steve's been twittering so maybe he'll end up posting before I do - bear with us if so. Today Steve had a successful day - despite his feeling yucky he still walked 2 miles (morning and mid-day). He is battling nausea with some meds that leave him sleepy, so he's- sleeping. Truth be told he seemed a bit unsteady on his feet in the evening. His team of doctors rounded early this morning so I missed them but heard they were impressed with his ability to eat.

I'd like to get a schedule set up for visitors though visiting may really be more of a spectator sport of watching Steve sleep (and keeping me company). I'll try to post a picture tomorrow morning.

Day 2 update (Transplant day -6)

Here's an updated picture of Steve from after dinner tonight. Even though he had a rough night, I was still able to convince Steve to get out of bed today and he had a rather successful day. He ate normal portions for breakfast, lunch and dinner and we walked 1 mile after breakfast and 1 mile before dinner. 1 mile on his wing of the transplant floor is 10.5 laps so it's a lot of pushing his IV pole down a cluttered hallway but I'm excited he can be convinced to do it still. He's setting up the network hub as we speak, because they don't have wifi here. His parents also visited today. The TV in his room has a channel that they broadcast movies on (sans commercials). The selection of movies is decent (steve says a lot of chick flicks and box office thrillers) but in addition to the regular channels there is always something on.

Now, imagine that you are plugged into a wall 24hrs a day and there's a TV right by the bed and you aren't always feeling good - you can see it would be difficult to get up and do anything. So I'm pretty excited when he's willing to sit up or get up and do something.

Last night I decorated his room a little:

Today is his last day of Cytoxan (a myelo suppressive drug that heavily suppresses the bone marrow) and tomorrow he starts Busulfan (a myelo ablative drug that fully destroys bone marrow activity) which he will do for 4 days. Then he will have a "day of rest" where the drugs can clear from his system before he gets his infusion of donor cells. Steve says "I'm staying busy with the nurses and all of the blood checks and weight checks".- so there you have it!

guest post: hospital day 2 of prep chemo

hey everyone. Johanna here.
I left last night and Steve was in good spirits though a little puffy faced (this is from the steroids and fluid retention). This morning I arrived and he had tales of an awful night of nausea and vomiting. Sounds like he didn't get much sleep. I think after some rest and some food he may be up and about once again. We will be working with the docs today to get his symptoms under control so he can keep his appetite.

In hospital, first day of chemo

The first day of my hospital stay is off to a good start. We got here at 8 am and I was started on IV fluids pretty quickly, since at least 4 hours of hydration are required before they can start the chemotherapy. Compared with my stay at Swedish hospital, I'm starting to like UW Medical Center better. For one, they have much newer IV equipment. The pumps are quieter, the IV poll itself has a handle for pulling it around and isn't squeaky like my other polls have been, and the interface is pretty fancy and even shows the name of the current drug or chemotherapy being infused. The TV in the room has full cable and even a movie channel and includes a separate remote, which is one of those things you take for granted until you try and use one of those dysfunctional hospital remotes affixed to the bed. The last remote I used like that had just one button for the TV - you could only increase the channel. To turn the TV off you had to go through *all* the channels to the end. So something as simple as a real TV remote is pretty nice.

I also get to wear my own clothes here! This rocks, since the hospital gowns aren't that comfortable and it's hard not to feel like a sick person when you're wearing them. So I've got comfortable sweat pants, t-shirts and hoodies, and feeling much more like a normal person. The other cool thing is that the nurses have a chart of my blood counts posted on my bulletin board, which they update every morning. This is great, since normally I have to bug the nurses to get a copy of my labs, and then I put them in my own spreadsheet. With my own clothes and these kinds of attention to detail, I feel a lot more taken care of and less like a sick person.

So far the only downside is that the internet connection is wired only. No wireless! It's much faster than Swedish, but I may have to smuggle in a small wireless router or hub so that Johanna and her mom and anyone else can share the internet connection.

We started chemotherapy an hour ago and the first session just finished. The regimen is Cytoxin first, which suppresses the immune system, then Busulfan, which suppresses the marrow and everything else. I'm on a clinical study where they've reversed the order of these chemotherapy drugs. Normally they do Busulfan first, then Cytoxin, or "Byoo-sigh" as they call it, but it's been shown that doing Cytoxin first is less toxic overall so they're experimenting with that. Apparently they've been wanting to do it in this order for years, but until recently the Busulfan had to be taken orally, so they had to do that one first, otherwise patients would have problems keeping the pills down. Since it's a clinical trial, the researcher has been in on a regular basis to draw blood to check the levels of Cytoxin in my system for their research.

Other than having to pee all day, the only side effect I've experienced so far is right after the Cytoxin chemotherapy drug started. The feeling was like being drunk, oddly enough. I'm still a bit groggy, and things going on in the room feel sort of far away. The drug also irritates your sinus passages, so I experienced a side-effect like sniffing some toxic fumes, which is pretty much what's happening :) The Cytoxin infusion was only for an hour, so I'll just be on hydration fluids and various medications until tomorrow. For example, they're giving me a drug called Mesna to help the bladder, since the chemotherapy can cause bleeding inside your bladder. Fun stuff :)


My daily blood count chart


Not a bad view, it's nice to see the trees.


My fancy IV pole.

Last day at home, tomorrow in the hospital

Today is my last day as a free man for a while. Tomorrow I get admitted into the UW hospital to start the chemotherapy regimen that will wipe out my bone marrow. Next Monday is the actual transplant, which consists of just a simple infusion of the donor's stem cells. They're smart enough to make their way inside the bones and start producing new blood. No surgery or anything. On the left you can see the Hickman catheter that was put in on Friday. The white disc is called a biopatch, and contains antibiotics that keep the entry wound free of infection. You can't see it, but there is a small incision up by my neck where the tube actually enters the vein. Between the biopatch and the neck vein, the tube tunnels under the skin. This is partly for convenience so that the Hickman doesn't stick out of your neck, but I also found out from a nurse that the tunnel acts as a natural barrier for infection, since the distance between the vein and the entry site are so far apart. The ends have tape wrapped around them which the necklace clips onto to keep the whole assembly from dangling around. So far it hasn't been too uncomfortable and most of the time I forget I have it. Pretty amazing stuff.

Today I met up with a friend for tea at Remedy Teas on Capitol Hill, got another round of antibiotics at the SCCA, went for sushi and noodles at Blowfish, then met up with a friend for coffee at Cafe Vita. Afterwards, I walked downtown, caught the bus home, then met up with Johanna and had dinner with my parents to help send me off to the hospital. Admittance time is 8 am tomorrow morning, so Johanna and I are just finishing up some light packing before we head off to bed.

I've enjoyed seeing all my friends and catching up recently, and look forward to seeing everyone when I get back out again. I should be able to have visitors almost any time during the next 4 weeks, but to make things easier I think Johanna and I will put together a simple sign-up sheet for visitors so that no one has to worry about when might or might not be a good time to come by. You may be given a gown and mask to wear, but as long as you don't have a cold or scratchy throat, it should be ok. Though I may not look very healthy to look at some of the time :)

My friend, Josh, joked that my marrow transplant should be called a "camaro transplant", and my mom remembered that and decorated this miniature Camaro with a bunch of cool decals! For example, the license plate says "platelet" and there are decals like NMDP for National Marrow Donor Program, and HGB for Hemoglobin. The car is yellow since I'm on the yellow team. See if you can figure out all the decals :)

9 days until transplant

Today we switched to an IV version of anti-fungal antibiotic, since the voriconazole can cause problems during the upcoming chemotherapy. The infusion took place at the SCCA, and they also taught us how to change the dressing on the Hickman and prepare the dressing for taking a shower. With the PICC, I needed to wrap the arm in saran wrap and carefully tape the ends to make the whole thing waterproof, which was hard to do by yourself. It was also painful since your arm moves around a lot and the tape pulls at your arm hair. The Hickman dressing is waterproof by itself, so all that needs to be done is to cover the ends of the Hickman tubes with a special wax paper called parafilm. A few seconds preparation time and that was it. The nurse set I could even go in the hot tub with it, as long as it's not submerged. Not bad!

After the infusion I met my boss for coffee, then met up with some coworkers later that evening for some Rock Band. Tomorrow is another hour-long infusion and marks the last day of freedom before I go into the hospital. Can't wait to get things rolling.

Hickman surgery successful, still sedated and recovering

I probably won't remember parts of what happened this afternoon, so I'll try to write as much as I can before the amnesiac effects of the sedation wipe it all away :)

The surgery went well. Last night and this morning I showered using a special antiseptic soap on my chest that they require patients to use before surgery. They'll actually postpone the surgery if you don't do this. The way the Hutch works, the pre-soap ritual was probably the result of someone's research that found that patients using a surgical soap in advance of this surgery decreased their risk of infection by some percentage. Anyway, I did the soap, wore freshly laundered clothes to the surgery room (also required), and it was on.

The procedure involves 2 incisions, one at the jugular vein in your neck, and the other in your chest above your nipple. Rather than having an unsightly catheter sticking out of your neck, they tunnel the tube under your skin between the 2 incision points. This way, the catheter enters the vein at your neck, but comes out of your body lower down on your chest. With your fingers, you can actually feel the catheter under the skin. This layout makes it much more convenient since the ends of the tube can rest in the natural chest cavity pocket there. I have a necklace with a clip on the end to keep it from dangling around too much.


The illustration shows a single-lumen Hickman. Mine is a double-lumen Hickman, which means it has 2 tubes coming out, and the tube itself is split into separate chambers all the way to the heart. This allows them to do things like an infusion on one line, while drawing blood from the other. With a single lumen they would need to interrupt the infusion.

Apparently Dr. Hickman, who invented the device, retired just a few months ago at the ripe old age of 83 and was the sole person doing these surgeries until the day he retired. I'm not sure if that's a good thing, or a bad thing :) The doctor who performed mine studied under Dr. Hickman for years, and was great. The surgery went perfectly.

The procedure itself wasn't too bad, though I'd read up on it so I knew pretty much what to expect. The doctor and nurse also did a great job of explaining, and did a show-and-tell on the ultrasound so that Johanna and I could see the actual jugular and where exactly in the jugular he would insert the catheter. It pulsed with my heartbeat, and you could see it squish and move around as he pushed down with the ultrasound tool.

Really, the most uncomfortable part of the whole procedure was the lidocaine injection into the neck for the incision, since it burned a bit, and when they used the tunneling tool to open a passage under the skin for the catheter. Everything else was relatively easy. The amazing part was that once they got everything sterilized and set up, the procedure itself took only 10 minutes. But it took a 45 minutes to properly prepare and sterilize the room. What I mean is, I was covered from head to toe with a sterile tarp and a piece of metal near my head to suspend it from my face. A window was cut out of the side so that I could breathe and talk to the nurse that was applying the IV sedatives and pain-killers. Around the surgery site, the tarp was taped down and the site of the surgery was sterilized with antiseptic soap. The doctors, technicians, and nurses were fully gowned and had face masks and hair nets. It was nice to see the amount of care taken to keep the place sterile, since infection is the leading source of problems with these central lines

A combination of ultrasound and x-rays were used to position the guide wire into the proper position in the superior vena cava above the heart, and to make the appropriately-sized hole in the jugular vein for the catheter. I was on a flat table beneath a large x-ray machine, and the table was tilted back with my feet above my head. So the experience was like being in a narrow tent, lying backwards downhill. I'm glad I wasn't claustrophobic! But like all my previous procedures, once the sedative started flowing, everything felt great :) I was relaxed and calm and just enjoying the fact that the procedure was happening and would soon be over.

Recovery was fairly quick, and after some string cheese, Oreo cookies, and apple juice (I wasn't allowed to eat all morning and was starved), we were done! We headed to Taco Time to satisfy my taco craving, and then stopped by my old office to see coworkers I won't see for a while. It's been a few hours since the surgery, and I'm hardly noticing the Hickman at all, except for some soreness in my neck, which is expected since there are a lot of small muscles up there which they had to cut through. I think it may prove to be less of a hassle than the PICC line.

Tomorrow we take a class on caring for the Hickman, such as changing the dressing and how to protect it when taking showers, and I'll have an hour-long IV infusion after that and again on Sunday. Then Monday I'm admitted into UW Hospital. It's sort of a relief to have this week over with, since there were a lot of unknowns, like what the results of the CT scan and data review would be, and how I would feel after getting the Hickman line. It all feels pretty good, so I'm excited about moving on to the next stage.

Ciao for now! Thanks for all the comments :) I love reading them all, they really make my day!

10 mile walk

By the way, here's a route of the 10 mile walk I did yesterday. It was a nice walk, not too much traffic except around the Montlake bridge and the 520 overpass. I hit the Burke-Gilman trail for part of the way back after leaving the University.  The zig-zag walk through Capitol Hill was great. It's one of my favorite areas and offers lots of inspiring view of the Space Needle and Puget Sound, especially refreshing after the hill-climb from Montlake.

On the way, I listened to a great episode of This American Life about inmates at a high-security prison as they rehearsed and staged a production of Hamlet. It was fascinating listening to murderers acting out a play about murder, and one critic said it was the best version of Hamlet he'd ever seen. Here's a link to the episode.


I parked the scooter in the neighborhood at the top right and walked clockwise. At the bottom left is where I hung out at Starbucks for a bit to fuel up and play on the internet.