Kitty week

The cat forever to be known as "kitty"

I had a pretty interesting week. Went to a Bulls game with some co-workers on Wednesday night - it was a perfect night for a ball game. Got some pool time in with my good friend on Thursday. We used to go a lot but this is the first time we've gone this summer. And yesterday I had a friend over and we grilled out pork chops (which turned out really well, not dry!) and then played a pretty intense strategy game at which I lost badly. But it was still fun. :)

I found a kitty on Sunday! She was a very friendly black cat who was so hot (it was 100-degrees out) that she was panting. She was also bald on her hind legs and rear end and had scabs around her neck, it turned out, from being allergic to fleas. I was worried about her and ended up taking her to the emergency vet.

$330 later she had been given fluids, de-flea'ed, her respirations were down, she tested negative for all communicable diseases, and they had given her shots of antibiotics and steroids. Long story short, it ended up that her owner was on vacation and she had escaped from her house. He got home two days later and they had a happy reunion. While it seemed he might not be taking the best care of her, the flea issue was recent and he'd been trying to get it under control, and the cat supposedly had a micro-chip since she doesn't keep collars on. So it was a happy ending.

I had a good session of PT on Monday, except that my leg tightness, which is the main symptom I've experienced since this has been going on for the last two years, doesn't really seem to be getting better. However, other good things are happening and in general I feel like I am progressing well. Then on Tuesday night I was standing at the sink coughing and irritated/reinjured the problem area in my back. At first it seemed minor, but it has turned into the same thing as before - really tight, keeps feeling like I need to stretch it but that doesn't really help, painful to turn certain ways. Ugh.

I was pretty much "over it" even right after that happened. As in, I'm tired of this messing up my life. So I went ahead with my elliptical that night - that was OK but probably wasn't great for it. Thursday I swam some laps at the pool, again, seemed OK. And Friday I was back at PT for my first "acute" visit since I started going. This morning it again feels tight and irritated. So I'm going to try to take it easy this weekend.

This week's appointments: (ha! I have so many appointments, I could probably have a category like this every week!)

• Monday, PT (above)
• Tuesday a.m., endocrinologist (diabetes): went well! A1C was 7.0 which is great, means my sugars have been under good control.
• Tuesday p.m., rheumatologist (allergy doc): I have been on allergy shots for 4 years now, and the Xolair shot for 3. The goal of these is to try and reduce the amount of steriods that I am on (both inhaled, Advair, and oral, Prednisone.) I have had a good year in terms of infection, but a bad year as far as Prednisone use. I am currently on the equivalent of 10mg a day, which is more than I want to be on. (5 would be ok.) So we decided to re-allergy test me. The thought being to see what I still react to even though I'm supposedly being treated for the things I am most allergic to. We are doing that on Wednesday and I am excited to see the results.
• Thursday - ok, this one was voluntary. I went to a screening visit for a clinical trial for a new inhaled antibiotic, levofloxacin. This is a drug that has been used for a long time in oral form, Levaquin, but the inhaled form is new. This is a stage II trial to test safety. If I get into the study, which I should, I will start it (or placebo) in two weeks. I will go back then, and then every two weeks for two months - the idea being that they follow me while I am on it and for the month afterward. To get into this trial, I have gone off my current regimen of inhaled antibiotics, and that is, fortunately, going very well.
• Friday - PT (above)

No big plans for the weekend, just going to take it easy.

Great Northern Adventure

My uncle Matt, Aunt Judy, me, Nathan and JoEllen

It's about time for some catching up here on Catboogie's Dream.

Basically things are going very well. I just got back from a wonderful vacation which I will tell you all about. And mom is doing ok despite a couple of setbacks. She had to go back in for surgery on July 14 to have her incision cleaned out. There appeared to be some infection at the surface, but the doctor wanted to confirm that it hadn't spread any deeper.

The post-surgery news was great - he had seen no indication of any infection, but he sent away some cultures anyway. However, when the cultures came back a few days later, they showed some mild staph. What was supposed to be a quick stay in the hospital ended up being four days. But she recovered well and was again back home.

Things have progressed slowly although in the right direction since then. The unfortunate part is that mom developed an allergic reaction to the oral antibiotic they sent her home on, and she has been quite miserable dealing with that for the last couple of weeks.

Vacation:
I left on the 21st to drive to Cleveland. On Friday, my step-mom and I hit some of our usual second-hand spots, and then again on Saturday. We had amazing fresh fruit and corn, and went out for Thai food one night with the best coconut ice cream I've ever had (ok, you got me, the only coconut ice cream I've ever had. But it was delicious!!) Dad seemed to be doing pretty well; amazingly well despite the heat and humidity which are often treacherous for him to deal with considering his breathing problems.

This was my first time in Cleveland since my dad has been officially listed for lung transplant. I have to say, as relaxed as everyone there seems, it was a bit strange. There is that thought of 'what if' every time the phone rings. And there is a split reality in the sense that things could either go on as they are for as long as possible, or else that something will drastically and life-alteringly change - possibly at any moment. I hope the lungs come sooner rather than later.

After a couple of days, I headed to Michigan, first to visit an old friend and then onto my brother and his wife's new house in Mt. Pleasant. I have serious house envy of their turn-of-the century home, complete with gorgeous woodwork, beautiful hardwoods, plentiful working windows and lots and lots of space.

My brother's house

The next day, our uncle and aunt came up from Indiana to see the house, visit, and we had a small little baby shower during which we Skyped in dad & Mary Ann in Cleveland and mom in North Carolina.

In general, Mount Pleasant is a very cute and sleepy town. The downtown, while small, is thriving with shops, some galleries, a few restaurants, a yoga studio. It's about a 10 minute walk to downtown. There is a food co-op, a soda shop and a hardware store. Everyone was out enjoying the nice weather, but I can imagine the speed during winter is a lot slower.

I went back to Cleveland for a couple of days before returning home. I bought a beautiful cherry wood lingerie dresser that I had not been able to get out of my head since being there which *just* fit into my back seat. And then I got a crazy idea - instead of driving home Saturday, I would drive to my aunt's house in Pennsylvania, which I have been wanting to see since she moved there a couple of years ago, and then drive home from there on Sunday. The drive was very pretty, especially the last hour which was on a very windy, rolling and beautiful historic highway.

Scenery in rural Pennsylvania

It was nice seeing some more family and exploring a new place. It has been many years since I've driven on the Pennsylvania Turnpike, which my mom and I used to always take to visit family in NC and VA. The PA Turnpike is filled with 24-hour Starbucks (heaven!)

It was also nice to drive a different way home. Lord only knows how much I have driven I-77 in the last few years!

And then...I was home!!

Couple of quick updates from this week:

• My chiro said my back was doing very well and cringed when I told him I had driven almost 2,000 miles since I saw him last. He then said my back was doing especially well considering that!
• Had two more sessions of PT this week. I really like it. I am surprised how many yoga stretches are involved. The PT person reiterated how bad driving is on your back (but I was very conscientious of my posture) and gave me some special after-driving stretches to do.
• My lungs are beginning to feel a bit heavy from being off the inhaled antibiotics in preparation for a study for a new inhaled antibiotic. It isn't terrible, but it is noticeable. I now know the antibiotics do help (hard to tell when you are just on them continuously.) And it has really forced me to stay on top of my exercise, which is good.
• Had the much-anticipated hematology appointment on Thursday for the doc to weigh in on my stopping coumadin. GREAT NEWS - I AM OFF OF COUMADIN!! I am going to start on a daily low-dose aspirin, which should give me some protection from clot reformation. Overall, the appointment was great - great doctor (who, of course, my ever-awesome CF doctor had already prepped via emails back and forth). Bottom line is that he thinks my port will be fine. But if I do develop another clot, we have a plan for how to handle it. The not so good news is that the stenosis (narrowing) in my sub-clavian vein, which showed up on the ultrasound only after the clot had cleared, is scar tissue from all of the picc lines that I have had. So no more piccs or ports on the right side of my body. However, anything done on the left side should be fine. I have another whole side to mess up - yay!
• Lastly, the Cystic Dreams Fund, for which I sit on the Board, gave out our first four grants this week. I have to say I really enjoyed being a part of that process. It is great to know that we are helping to make peoples' lives a little bit easier. And I know that Paul, my friend who passed away and for whom the foundation was started, would be very very happy.
  

Purple!

The much talked about and anticipated purple office has arrived! Spent three days last weekend prepping, painting, and putting back together. I was not quite done by the time Todd and Roger got home Tuesday night: I had not anticipated my stained bookshelves needing so much time to air out before bringing them back inside. Everything looks great! And it makes me happy happy.

Newly stained bookshelves

Aside from a small backtrack with all of the moving of books and furniture last weekend, my back and leg have been doing really well. And I started PT this week! Which is both exciting and daunting. I know it is going to be a long process. Now I trade my twice-weekly chiro appts for twice weekly PT. But hopefully it will all be worth it.

So yes, Todd made it home. Roger had another chemo treatment and as far as I know has continued to tolerate it well.

My mom is getting better walking every day. I was over at her house yesterday and she is almost able to walk without a limp, which is excellent. She will be transitioning to the cane next. Yay mom!

Anyone who wants to see more home improvement pictures can check out my album on facebook. You do not need to have a facebook account to do so, and doing so will not sign you up for facebook.*


*disclaimer for my mom :)

Home Stretch

Mom with Dr. Comstock - er, Dr. Clooney - at her appointment this week

I would be lying if I said I haven't been really down and missing Todd the last week. I am ready for him to be home. I feel so disconnected from him having not seen him for two weeks and only talking briefly on the phone every other day or so.

At first I was engrossed in making the best of "the single life" - and, truthfully, I do fine by myself. I enjoy alone time, it's nice to not have to plan for or think about other people... but it does get lonely.

I was also not looking forward to this loooong weekend during which most people will be out of town or are doing fun stuff and I have no plans. I do, however, have one very fun house project planned: painting my office purple! It's going to be a lot of work but I have three days to do it. If I finish the walls I also have two bookshelves I want to paint. Stay tuned.

Me update: leg is doing about the same, which is to say continuing to get better. Had a (painful!) massage this week and it helped loosen things up and I subsequently had my best adjustment yet afterward.

The run-down feeling from last weekend fortunately didn't escalate to anything. yay!

Had a dental cleaning this week and I'm going to need my first crown. boo! I think the cause is actually the way that I hold my nebulizer cup in my teeth - go figure.

I was really dreading my pulmonary appointment on Thursday because I haven't been able to exercise like I want with my sciatica. I kind of got let off the hook, though. I did my PFTs and then my doctor had to run somewhere for some kind of emergency, so we agreed to talk on the phone in an hour or so.

The basic story with my lungs right now is that they are fine (FEV1 46%, up from 43% last time, which was down from 49% previously.) Not awesome, but the numbers are ok at least. (I exercised right before and I really think that made a difference because I checked them the night before at home and they were only so-so.)

I have been coming down sloooowly off of a Prednisone taper since my last appointment three months ago and I haven't been able to get lower than 7.5 mg/day. I have gotten down to 5 before when I was feeling good - which is a daily amount I am comfortable with. (Let's just say my mom's hip-replacement surgery has inspired me to really try to take care of my bones...I already have osteopenia and I'm only 32!)

I just don't understand why my allergies/asthma could continue to be an issue with all of the stuff I am on for it! Just to review:

• Advair 500/50
• Singluar
• Allegra
• Prednisone
• Allergy shots
• Xolair shots

I seriously feel like we are throwing everything at it and it's still not great, which is very frustrating. We talked about a few things to try: upping my Prednisone temporarily, having me do a bronco-dilator before my treatments, and, possibly, trying an inhaled medication for emphysema that is being used for some CF patients. (Spiriva.) I'm going to try to get some samples next time I'm in clinic. Dr. C says he has another patient very similar to me that has done well on it. Leave no stone unturned...

We also talked about my continuing to be on coumadin... ugh. He thinks I should go off of it and is going to see if the hematology folks can get me in any sooner than the end of August. He said that I am a unique situation in the clinic, that there aren't really other patients they've had in this situation. That seems crazy to me because a lot of CF patients get ports and some of them must get clots. But the majority of clots they see are with picc lines, which are removed, so they don't continue to have the foreign body in them. So it is a whole different ballgame.

And lastly, I may participate in a trial for a new inhaled antibiotic for CF: levofloxacin - it is in the same family as Cipro. Very cool that we may soon have another inhaled antibiotic for CF!

My mom continues to do well although she's been a little down since getting home. I'm not sure why, I think she is just processing all that has happened - it's a lot! The picture above is from mom's appointment this week, her 3-week follow up, which went very well. Her doctor is not only awesome with exquisite bedside manner, but also very handsome - so we asked to take his picture. :)

Lots of good news

My dad and I at my commitment ceremony, May 2009

The big news around here is that my father, who has emphysema/COPD, was approved for a single lung transplant this week! He made it through all the tests and appointments and was given the green light by the committee. I can't tell you how happy we all are at the prospect of having dad be able to do all the things he hasn't been able to.

My mom continues to make great progress from her hip replacement surgery 2.5 weeks ago. She is going to be released from the rehab facility on Monday. She is going to have PT people come to her house during the week for a while still. And, while she will still need help with some things she should be able to get around relatively well. And she will be home!!

My leg/back (sciatica) has really improved in the last couple of weeks. The numbness is finally gone from my foot. My chiropractic adjustments have gotten easier - as he said they would if I did what he said and was patient - and my leg is a lot less painful. Unfortunately, the healing process is not super close to being over because my back was so messed up even before the sciatica, so there is a lot of ground to make up. I was approved to start PT this week, which is another positive step, and should help me to improve even more, and sustain the changes I've made.

Coumadin update: met with my coumadin doc last week and we decided that he is going to refer me to a hematologist. I am happy with this decision. It does mean that I will stay on the coumadin until then, which will be about a month or so. But we needed another perspective in order to make the decision of staying on coumadin for 3 or 6 months.

I have made a lot of positive changes in my life in the past week. The biggest is that I quit drinking soda. It has been way harder than I thought, because even before when I would cut out Diet Coke (which I think is probably the worst of the sodas that I drank), I would still drink stuff like Sprite Zero, Diet 7-up, Fresca, Diet Sunkist. Oh god, I was a total soda junkie.

The reason for this change is that diet stuff (in particular artificial sweetener and caffeine) is not good for you. I wanted to "detox" from artificial stuff (sweetener) and soda is the biggest culprit for me.

Also, Diet drinks are particularly bad for me because caffeine deteriorates your bones (I already have enough help with that having CF and being on steroids - double whammy) and dehydrates you. So I have been drinking a lot more water, which is another thing I've been wanting to do for a while. Pretty much juice, water, coffee, tea, and beer...the last three in moderate amounts.

Next to health there are the environmental reasons. Not wanting to have Diet Coke at the house, I would often stop and buy one after work. Drinks in plastic bottles really aren't good for the environment. Even if you recycle them, they are still a petroleum product. And the smallest reason was money - while cases of soda in cans are relatively inexpensive, those trips to the convenience store paying $1.50/drink are not.

Enough about soda.

Todd has been in Montana for a little over a week. He is having a great time. Lots of fishing. Seeing a lot of cool wildlife (he saw a moose a few days ago!) And getting to hang out with our little nephew. I am jealous of all these things.

Here at the house, Todd being gone has put me into full "project mode." I have straightened up, cleaned up (here as well as at work and some at my mom's house with the help of her awesome neighbor) - made 3-4 trips to the thrift store in the last week. My friend Jeff is power washing our deck. After that, I hope he'll do the house, and then maybe clean the outside of the windows. We are also gearing up for painting my office which I am very excited about (purple!!)

However, I fear that I may have pushed myself too far even thought I was trying to be conscious of my limitations and energy, and I hope that it is not too late - meaning I hope this doesn't turn into a CF-exacerbation requiring IV antibiotics. Thursday afternoon and evening I was very tired, even after a nap, and though I went to bed early that night, I woke up on Friday feeling pretty terrible. What I call my CF-I-did-too-much-and-stressed out-my-body-yuk. My whole body was sore, my skin actually, almost flu-like, and I was very tired. And my lungs were hurting (strange, I know) and suddenly more congested than usual. Went into work late, napped after work, and went to bed early again in an attempt to get back on track. So far I am feeling better today, but I still plan to take it easy this weekend.

What a week - whew!

Front of Little Duke Hospital

My mom's hip replacement went really well this past week! As in, so far there no complications with the surgery, her pain seems relatively well controlled, and she is making slow and steady progress every day.

The hospital her operation was at is very nice, Duke Raleigh hospital - Little Duke I will call it. They have an entire floor of all orthopedic patients, everyone is competent and friendly. It's a pretty plush place for a hospital.

They decided to release my mom to a rehab facility on day 3 after her surgery. I was never quite sure what went into that decision. In retrospect, we probably would have pushed to have her stay at Duke for another couple of days and then maybe she could have gone home or at least spent less time in the rehab facility.

She was transferred to the rehab facility yesterday. The place is basically a nicer than usual nursing home, not what we were expecting. (The case manager had told my mom it was "the best place" with this and that and the other...I'd hate to see the other places.) They didn't have a phone for her, a walker, the right kind of bed, her pain med lapsed several hours when she first arrived. Needless to say, it was a bit of a stressful day for her.

Anyway, this is my blog, but I thought at least some of you would be interested in hearing about my mom's surgery. There is obviously a lot of other details, but that is the overview. She seems great for having had major surgery four days ago! Which isn't to say the recovery will be easy.

What else... we had a house guest this week, Todd's awesome cousin. We went to see a concert Wednesday night downtown. The band was Mumford & Sons - I love their CD but the concert was just ok. In part because of the sweltering heat (over 90 degrees after the sun set!)

My leg is making a small amount of progress in the right direction. I was given some stretches to do each night and we hope that will keep my back open between adjustments and speed things along a bit. I can't WAIT to be cleared for more exercise. As it is right now, I've basically given up doing much of anything. Which is sad. I see my pulmonary doctor soon and this is not the ideal build-up for trying for awesome pfts, but whatever.

Lastly, I think sort of by default, my docs and I have decided to keep me on the coumadin for another three months. Ahhh...summer. Summer and blood clots.

Friends are the greatest

My friends Jacqueline and Brian and me, circa 2003

This has been a week of catching up with friends. Wednesday night, I had dinner with my friends Jacqueline and Amy. I hadn't sat down with Jacqueline in probably three years so it was really nice. Thursday, I had my friend Jeff over for dinner. He is always good company. And yesterday, I went out with two of my best female friends (and my two soap partners) Elaine and Maura. These kinds of days are so good for the spirit.

I spent a good bit of time yesterday going shopping for and helping my mom to prepare for her upcoming hip-replacement surgery on Tuesday. I think we both know what a huge thing we have ahead of us, but we are trying to roll with it as much as possible. My mom has gotten to the point where she is in a good bit of pain just walking around the house, so it will definitely be a big change for her to be more mobile again. Lunch out this week and a short shopping trip wore her completely out!

Todd's dad is coming for his second chemo treatment on Monday, just coming to Raleigh for the day. I hope that he continues to not have a difficult time with side effects. He and Todd are leaving for Montana in two weeks. Sadly, I don't think I'm going to be able to join them for part of it. We have had so many expenses this past month, and tickets out there are not cheap. I hate to miss it, but think the best thing for me to do is stay here.

My leg is doing about the same...not very good...although it did get a teeny bit better this week. I managed to get some lidoderm pain patches, but I'm not sure how much good they are doing (yet?) My turtle-paced progress continues to frustrate the hell out of me. And I am now gaining weight from my lessened schedule of exercising and the recent stresses which have made over-consumption sort-of inevitable.

Lastly, we have not for sure decided whether or not this week will be my last week on coumadin or not, but I have a feeling I am going to end up taking it for an additional three months. I am disappointed, but it is not the end of the world.