Wednesday, February 25, 2015
Last week I was feeling a bit lost. I had all kinds of things to do but no motivation to do them. I was dreading every session of rehab. I was tired a lot. Was this some kind of post-transplant depression taking hold or something less serious?
I made an appointment with my shrink to sort things out - my shrink who I love and hadn't seen since I was in the hospital post-transplant!
Here is what it boils down to: I am in the midst of an incredible amount of change right now. I am trying to find my new normal, I am meeting new people and taking on new volunteer activities - all while trying to be mindful that I am still recovering from major surgery. That is a lot for anyone.
Then there is my energy: the thing is, I feel about 70%. Normal recovery for lung transplant is 6-12 months. If you chart the one year trajectory, I am way ahead of the pack. If you chart the 6-month path, I am still above the curve. So what I am feeling - the fatigue - is pretty much normal.
The other thing I discovered is that part of my hesitation is coming from the fact that it's just plain scary to put myself out there. I know I am a good writer but I am rusty since the last time I worked. I want to produce a good product and impress people with my work but I'm afraid that I'm not as good as I used to be. I know that my transplant medications have affected me mentally and I have a fear that will somehow translate to my writing or even how people perceive me. Ugh.
I know it's probably not true. My brain knows that but my heart doesn't yet. I think it's going to take just jumping in, trying my hand at things again. That's the only way to prove myself wrong. This week, I have my first chance to write a news story for the Lung Transplant Foundation. I hope that I do an awesome job and that they love me. If not, I will use it as a stepping stone. Either way I will learn something new.
Sunday, February 15, 2015
It's been a hum-drum couple of weeks for me. Physically, I have recovered well from my Nissen surgery which is awesome. However, I had another issue come up during my latest bronchoscopy this past week. And through all of it, I've felt a bit down, not like my normal self. Let me do something that I rarely do and give you a play-by-play of the week.
Bad News Monday:I had a regular old transplant clinic on Monday. Unfortunately it did not go well. My PFTs were down over 10%, which is an alarming amount in transplantville. Also, my x-ray showed an increase in size of a small fluid pocket that has been hanging around outside my lower right lung for a while. This is a sign that something is going on inside the lung.
My other "symptoms" as recorded in my medical book going in to the appointment were feeling "like I'm not doing as well/not breathing as deeply as I should be able to." The wheeze is still there, I report. And lastly, though I've been exercising a lot (walking especially), "I get short of breath on quick exertion."
Perhaps with all of this, plus the lower PFTs and the fluid thing, I should not have been surprised that my doctor suspected that I was still in rejection. There was talk of admitting me for 4 days of r-ATG (rabbit-ATG, an infusion of rabbit antibodies against human T-cells) in the hospital. r-ATG is the next step of rejection treatment when the steroid boost doesn't help. During this time I would likely experience a range of flu-like symptoms. Not fun, in other words.
We were anxious to see the results of the next day's bronch, but either way, the doc told me, we were likely looking at a hospital admission. But we had planned to go to the mountains for the weekend! No problem, doctor said I could hold off admission until Monday, so that was good at least.
Balloon Tuesday:I arrive at Duke at 7:45 am for my bronch. I have a doctor I've never had before but I like her right away - she is quick-witted and seems to know exactly what's going on. Afterward she tells us that I have some severe stenosis (narrowing) in one of my mid-lobes on the right side. It was bad enough that she couldn't get the scope down through it. I would have to get this taken care of soon.
To do this, they go in with a balloon and expand the tissue. Often it is scar tissue which sometimes stays stretched or sometimes goes back to how it was. During my next bronch if it is narrowed again, they will consider going in surgically to place a stent. Supposedly this whole thing is not too uncommon.
|The white part of the airway is scar tissue that is causing stenosis.|
Now I am a novice at this stuff, but if you ask me, it is very suspicious that I have been having this wheeze for months (caused, they have told me, by pieces of scar tissue) on my right side and now I am having a problem with scar tissue having gotten so bad that it has narrowed my airway - also on the right side. Has the problem been creeping up this whole time? I have no way of knowing for sure. All I know is that I did have one or two bronchs while I've had the wheeze which showed no stenosis before now.
Good News Thursday:I get the incredible news that I had no rejection from my bronch! YAY!! So super happy about that. Go body for accepting these new lungs!
I also find out the awesome news that because of the stenosis, the doctor has decided against the r-ATG for now, thinking that could be the cause of my lowered PFTs, but, I would have to be ballooned or dilated as soon as possible.
Side notes, on Thursday, I had coffee with the communications director of the Triangle Land Conservancy to talk about volunteer work. It went really well! They are excited to have me and I feel like I will be able to volunteer for them, Donate Life NC, the Lung Transplant Foundation and continue my work with the Cystic Dreams Fund all without overextending myself (I hope!)
That day, I also had an appointment with a new diabetes doctor. (Incidentally, I found out my hemoglobin A1C, a measure of diabetes control, was 5.8 - I was the best score of the day the doctor said!)
This visit was my second attempt to find a diabetes doctor at Duke with whom I would be happy. I liked the woman a lot, she was awesome, and her nursing assistant who I will be seeing I also liked. And so, happily but sadly, I take one more step away from ever going back to UNC. :(
Bronch #2 Friday:Bronch with dilation. My second IV of the week and I miss having my port more and more. I actually asked about getting another one but the doctor posited that with the r-ATG treatment we thought was coming and the subsequent immune-suppression that it would be a bad idea.
My Friday ended with an incredibly long nap and then binge watching of the end of season 4 of The Wire.
Valentine's Day Hike Saturday:
|The Raven Rock|
Saturday's activities I am including just for fun because we did something really cool. I have wanted to go to Raven Rock State Park for a very long time - it is about an hour south of Raleigh. Unfortunately, the first part of that hour you have to navigate through about 100 stop lights of Raleigh suburbia, but after that it's nice.
We got to Raven Rock about 2pm - the weather was almost perfect, about 50 degrees and sunny, just cold enough with the wind to bundle up a little but not enough to feel cold. We hiked a 2.6 mile loop trail first to an overlook of the Cape Fear River which was pretty. Then, about the halfway point is the side trail to Raven Rock. It includes a very long set of stairs down from where you are on the bluff down to the river - 130 steps someone told me. We weren't sure if Sam and I would be able to make it back up but, what the hell, you can't go to Raven Rock and not see the Raven Rock, right?
|My dorks and I at the Raven Rock|
|The dogs sneak a drink from melting ice off the rocks|
It was super cool. You are surrounded by the river and then this huge rock jutting out of what seems to be nowhere. There were icicles hanging down and water dripping. Doc and Sam even got to eat a couple pieces of fallen ice.
We all made it up the stairs back to the trail! Todd was impressed with my climbing and we were both impressed with how well Sam did (Doc and Sam are nine and a half and Sam has doggie arthritis). The rest of the loop back to the car was a total bear. It seemed like one very long incline - some parts I was so tired I just wanted to give up! I did have to stop several times for a rest because I was just out of gas. When we finally made it back to the car I had the amazing feeling of having gotten a really good work-out.
And that wasn't all! We stopped in Lillington (this is an area known for its barbeque) for some take-out. We chose a place we thought was well known and got barbeque, beans, slaw and enough hush puppies to have a good snack on the way home. Everything was really good - especially the beans which had, deliciously, more sugar than any other baked beans I'd ever had.
Soft Rock Sunday:
Today is a completely lazy day. After I finish this, I am going to catch up on some TV, wait for my Sunday afternoon food delivery, maybe take the dogs for a walk if I can get up the momentum to seriously bundle up, wait for my mom to come over for a short visit.
Tonight we are very excited to be going to Soft Rock Sunday. This used to be a monthly occasion but hasn't happened for a while. It's an event that's DJ-ed by a friend of ours during which smooth rock 70s music is played. I love it - a lot of the songs I grew up with. A good time with friends and a good way to close a hectic week.
So I escaped the rabbit hole this week - but just barely. We won't know how successful the dilation was, and whether or not my PFTs have improved, until next month. Until then, I trudge onward.
Sunday, February 1, 2015
|Art along the Beltline in Atlanta|
I am long overdue for a post. Apologies to those who have been patiently waiting!
The last couple of weeks have been both routine (my new routine) and exceptional. I have gone to pulmonary rehab twice a week and have been taking care of business at home, continuing to keep up and get organized. Starting to think about our trip to Vegas at the end of April for our friends' wedding. (More on that as the time grows nearer.) And on the other side, I had a trip out of town and then my Nissen (stomach wrap) surgery.
|My friend Erica, who recently moved to Atlanta, |
and her awesome dog Berkley
Last weekend, I went to visit my good friend Erica in Atlanta. The drive was about 6 hours, longer than I would have liked, but it also gave me a lot of time to catch up on Podcasts (I finished "Serial" for those of you who know what I'm talking about, and I'm just as uncertain about who did it as I was after the first episode! Very curious what Serial #2 will be like.)
The visit was good. I got to spend a lot of quality time with Erica, who, new to Atlanta, is having a bit of a rough time adjusting to not having good friends around. We also got to explore a bit and sample some of Atlanta's neighborhood culture. (Think NYC with its 5 boroughs times three and squished down to fit into a much smaller city. Each neighborhood has its own heartbeat.)
On Saturday, after I arrived and had a nice cup of coffee out on the deck while my friend's housemate's chickens clucked around the outside of the house, we went to an awesome craft show (had to force myself not to buy a bunch of amazing bars of soap), walked around Little Five Points and then had dinner at a restaurant on the Beltline (a paved path that runs through several neighborhoods for jogging, biking, running, etc.).
On Sunday, after a quick detour to Marshall's, we went to this place called the Buford Highway Farmer's Market. I was thinking it was going to be a huge farmer's market but it was actually a gigantic multi-ethnic grocery store with about 20 check out lines bustling with every color of person.
Their selection was amazing, 50 different kinds of saki, rice by the 20-plus pound bag, every kind of frozen dumpling you could imagine, unidentifiable produce. Each isle was designated to a certain type of ethnic food - Chinese, Japanese, Korean, etc. - and the entire back wall of the store was a huge fish and meat counter area with every kind of fish and cut of meat imaginable (and including disgusting things like chicken feet and octopus.) We ended up getting some Sea Bass and, as an experiment, a piece of shark.
|Every kind of rice vinegar you could ever want or imagine!|
After the Farmer's Market we went to a Szechuan Chinese restaurant nearby called Gu's Bistro that my friend had heard about as having the best Chinese food (specifically dumplings) in the city. We split an order of each of their two kinds of dumplings and they were indeed spicy and delicious!
After that we took my friend's dog Berkley, who I love so much, for a long walk along the Beltline. It was a beautiful day out, about 50 and sunny, and there were tons of people out on their bikes, skateboards, roller blades, and walking and running. We probably walked over three miles. It was a lot for me. Then after a quick coffee break, we headed home and Erica with her Saki (and me with my NA beer) soon started cooking dinner. We had roasted curry cauliflower, the sea bass with a great fish rub and the shark...and let's just say the shark experiment ended up well for the two dogs. :)
After all of that it was an early night to bed for me. The next morning I got up and drove back to Raleigh. What a great time! And I didn't forget to take my pills one single time (this trip out of town was kind of the first experiment as to whether or not I could mix a fun weekend with remembering to take my pills and flush my stupid G/J tube - success!)
|My surgery was actually done with a robot - crazy, huh? - |
that's quite a contrast to this picture!
The week after Atlanta was all about preparing for my surgery on Thursday. Things to do, special food to buy, exercise to get in. I prepared mentally by not thinking about it at all which does wonders for your nerves!
The morning of surgery I had to be at Duke at the ungodly hour of 5:20 am. Everything went fine. I got a full stomach wrap and while they were in there they also dilated the stomach opening to my small intestine to improve my stomach emptying.
|My belly scars: 4 from chest tubes, 6 from Nissen surgery,|
and one from my G/J feeding tube
Here were the things that were awesome about the surgery:
- I was really happy with how the anesthesia ended up this time - I told them less is more with me and the message clearly got through. I can remember things very soon after coming into the recovery area. This is in sharp contrast to the last procedure I had anesthesia, for my G/J stomach tube placement.
- I was able to burp after surgery! That may seem silly but a lot of people can't burp and end up with bloating from air build-up in their stomach.
- I was able to swallow pills after surgery - a lot of people have to crush big pills because they can't swallow them.
- I did NOT have a lot of the nausea/vomiting/dry heaving that a lot of people have after this surgery.
- And the best thing was that I only had to stay in the hospital for one night! They gave me the option of staying another night but all they could offer me there that I couldn't get at home was IV anti-nausea medicine and I wasn't really having any nausea. So I figured if I could be in pain at the hospital I could be in pain at home and have the comforts of kitty cats and, well, home.
However, pain management - which hadn't been great at the hospital even with IV Dilaudid - was a huge issue as soon as I got home. The first day and night home after surgery ended up being extremely unpleasant - it hurt to do almost anything, even breath. All I could do that didn't hurt was lie in bed and sleep. The next morning I paged the on-call doctor and he changed me to a winning cocktail: He upped and increased the dosage of my pain meds and added in Tylenol and Advil intermittently (yes, I know Advil is a no-no after transplant but he said just one pill would be alright in this case.) I was much less miserable after that and was able to get up and do things, get food, catch up on Project Runway, etc.
So anyway, I am in recovery mode, and now that my pain is controlled I am already getting a little antsy - I have absolutely nothing planned for the next week or two which makes me sort of nuts - I'm even off from pulmonary rehab until I'm feeling strong. On the positive side, I have a lot of stuff to read right now (my travel books for our April trip and a book on social media for my new volunteer position - more on that in another post) to fill my time and maybe I will start watching a new show and catch up on old ones or something.
Also, I have found great ways of overcoming the dullness of my liquid diet - added herbs to chicken broth, fixing cream of wheat and eating rainbow sherbert. I am only on it until tomorrow and then I can start having soft foods - it is shades of my swallowing test days all over again. This time, however, I'm going to try not to cheat so much. :)