Today has been a fantastic day! Yesterday afternoon I was discharged from University of Michigan Hospital. Now I will still be on IV antibiotics for the next couple weeks, but thankfully I can do them from home for now. Today I was able to go for my first walk in almost a week. I was nervous that I would have a hard time breathing and that I wouldn’t even make it to the end of the road, but I went a whopping 5k. I did struggle a little so my pace was a few minutes slower then normal, but it felt really good to be out and walking again.
I received the second bit of great news when I got home from my walk. Disney has released the bib numbers for the Tower of Terror 10 mile run in October. I am not the fastest runner and I was honest when filling out my estimated finish time. I couldn’t be happier to find that I have been placed in Corral I, which is the second to last corral. Now I don’t know how long the time between corrals is, but I know that the extra couple minutes that I will get is going to be the make it or break it between my finishing or not. I may have cried from happiness when I found out that I have a serious chance of finishing now.
I plan on training hard core over the next few weeks, and it is my goal to have the minimum 16 minute mile by October for the run. My fastest minute mile so far is just under 18 minutes. I was making really good progress before I got sick and I am lucky to be on a fast track to getting better now. I have a long ways to go ahead of me, but I know I will cross that finish line!
Wish me luck!
I was going to share my run from tonight tomorrow, but when I got home and plugged in my Garmin and realized how far I ran I was to excited to keep it to myself!
So i set out on my run tonight with the goal of running/walking 8 kilometers which I figured would wind up being around 4 miles. I haven’t run since last tuesday which I completed a 6.1 kilometer walk/run in an hour and 12 minutes. I went on vacation with my family thursday morning and I had full intention of continuing my run schedule, but I just didn’t. I took the weekend to enjoy the company of my family, both of my grandfathers were up north with my family as well as one of my cousins, so we just had a good time enjoying each others company. I have a few pictures from the weekend and some interesting stories so I’ll write a separate post about what we do over on Lake Michigan tomorrow! Anyway back to tonights run.
My First 5 mile run!
I completed my 8.1 k in 1 hour and 33 minutes, which is 5.03 miles! My average mile per minute is 18:35 which has been close to my average mile per minute. I did really well this run. I never really got tired or super exhausted, in fact it was just the opposite I felt really calm and zen like. I have been running the same path for a week now and I enjoy it! I did start my run later then I had wanted to, so I didn’t get back home until after 10pm which is a little to late for me. I am not super comfortable running at night so I will be trying to start earlier for my next run/walk.
I have been trying to run more and more, but right now I’m really focused on making sure I can complete the full 10 mile distance for my run in October. Once I hit 10 miles I will start training more for speed. My goal is still a 12 minute mile by november, i don’t really have a goal for the October run besides the required 16 minute mile. It feels so good to know that I have reached the hallway point for my 10 mile run and that my mile per minute has improved by 3 minutes since i’ve started running.
After my disappointing doctors appointment a couple weeks ago this is exactly the kind of positive boost I need to keep my spirits up! I can’t wait to keep running and see how far I can go! Maybe after I complete my Marathon in a Year I will be able to run a real Marathon in a day!
Wish me luck!
Last night I went out for my run. I planned on running around 7pm but I didn’t make it out of the house until closer to 7:30. My goal for the evening was to do a 5k. I started off strong in the first 1k of my run, maybe too strong. I was a little more optimistic about how much I could run and over did it a lot, especially int he first 2 kilometers. I am excited to start going farther though with every run! I got some great running advice from a fellow Cystic her name is Emily and she is the main runner and operator for the charity I am working for this year the Rock CF Foundation. She is an amazing athlete and someone I admire very much, having her support and advise is a big motivator for me to keep working hard to fulfill my goals! Her advise to me was to run four days a week alternating days and to work in strength training on the in between days. SO I have been following that method with yesterday being my first full run, on off days I do push ups, crunches and planks. I am not the greatest at actual work outs, so it’s going to take some getting used to, but I know i will get better at it!
Here are the Garmin stats from my 5k yesterday. I am really proud to have my fastest mile to minute yet it’s just under 19 minutes! I need to be at least at 16 for my run in october, and i’m hoping to get it down to 12 for my run in November. It’s not going to be easy, but it’s going to be worth it!
My goal tomorrow is to do another 5k maybe go a little farther. I don’t want to do to much to fast, and this 5k was pretty exhausting for me. I’ll keep working on it though!
Wish me luck!
Yesterday I had a Doctors appointment at the University of Michigan in Ann Arbor. I am kind of sad to report that it didn’t go as well as I had hoped it would. I have been feeling really good since I’ve gotten out of the hospital and i had really anticipated my PFT scores being higher, but all in all nothing really changed. The doctor did take me off IV antibiotics though after being not hem for four weeks he said if I was going to see an improvement it would be there. My weight hasn’t increased at all, and my lugs still have a lot of crackles but the doctor seemed optimistic that getting back into the mode of running would help both of those things out a lot.
My PFT was at 32% and I am still pretty upset about it. I really thought it was going to be at least in the mid 30’s but it just didn’t work out.
I have to be honest I am pretty upset and disappointed. I really did everything the doctor wanted me to and I’m just not seeing positive results anymore. I am just not sure what I can do now to get the improvements that I want, and I am beginning to think that they just won’t happen at all.
Cystic Fibrosis is degenerative so I know that it is only going to get worse and at some point I will stop getting better but it is pretty fooling when you feel better but the tests say you aren’t. I just can’t help but question how long it will be before I don’t feel better either. All I can do now is just try to keep a positive outlook.
Wish me luck!
After spending a week in the hospital I was finally able to go home yesterday afternoon. The best news that the doctors didn’t find and sign of outside infection. My doctor was really concerned after the symptoms I showed that I might have a blood infection, especially since I have a history of one, but all my blood work came back clean! They even got my med port drawing blood again. The doctors were also able to change my medications around and get my pain under control. I still have another two week of IV antibiotics, but I can finally see some results.
I was able to make it home yesterday around 5:30, but my mom and dad took me out to dinner in order to celebrate my return home and to give me a proper birthday dinner. My birthday was Tuesday and my family was really generous and came to visit me in the hospital and they brought me outback steak house for dinner! It was nice though to be able to go out to dinner with my family and enjoy some real food.
This morning we all packed up and headed towards Lake Michigan to our summer vacation trailer by the Silver Lake sand dunes in Mears MI. We will be here for another couple days enjoying kicking some sand and cooking out!
For the best news of all though. This evening I went on my first walk in nearly a month! I walked about a half a mile with my dad and his dog. It was so great, I didn’t have to stop to take a break or anything! I haven’t been able to walk like that in a long time! I am so excited to be able to get back on track in my training, and to keep progressing towards my marathon in a year.
Wish me luck!
It has been a long three days for me. The bad reaction I had to the IV antibiotics got really severe wednesday night, so I contacted my doctor again and he called me in for a last minute appointment yesterday afternoon. After running another PFT and looking over my symptoms and sputum test results he found that there had been no increase in my PFT’s and that I hadn’t really gotten any better over the past week. My most recent sputum test also showed that I have cultured staph in my lungs and given my history or lack of history with Staph the doctor was concerned that there might be more underlying problems that the medications were covering up. The last time I had a staph infection it ended up being in my medical chest port and then went into my blood, which is very dangerous and deadly. It didn’t only make my doctor nervous it made me nervous, so I was admitted into the University of Michigan hospital last night around 8pm.
I may be in the hospital, but with the help of the physical therapists I am back in training mode for the runs in the coming fall. I’m not doing anything drastic though, just a few laps around the floor but that is still more then I have been able to do in weeks. One of my other focuses in the hospital is on gaining weight. I’m currently about 20 lbs underweight, which my doctor isn’t to concerned with saying I will get it back when my health improves.
I am just taking baby steps to get back to a healthy enough place that I can focus on my future goals and ambitions, extending beyond just the runs in the fall.
Wish me luck!
It’s been a couple days but I am back with my update from the doctor. All in all the appointment went better then I thought it would. I was afraid that with how bad my shortness of breath has been he would put me on oxygen but my O2 stats show that even being short of breath my lungs are compensating so my oxygen saturation is hanging around 95%, which is low for me but not close to any red flags.
My PFT’s however are down even more. Let me just say when I am standing in the little PFT room and I do the breathing thing and the guy goes “awesome, you did great!” apparently he means I put in a good effort, not that my PFT was actually good. I was very disappointed when the Doctor told me that my PFT’s are now down to 31%. The low PFT score wouldn’t bother be as much except for the fact my PFT’s haven’t increased in over 6 months. They have been going down when I am sick, and then just leveling off not increasing when I get better. Hopefully this time it will be different I can at least get back into the mid to high 30’s by mid June.
The medications I am on are Colisten and Cefepime, unfortunately for me I am already having side effects. The common side effects i’ve had previously were tingling and numbness in the mouth and teeth, but it is currently being extra tingly and numb. I am also encountering a constant bad taste in my mouth, which isn’t that bad just kind of annoying. The best side effect for the first time in nearly 3 years I can smell! By that i mean I can smell EVERYTHING. I lost my sense of smell a few years back after tackling a series of severe sinus infections. It is really strange to me to be able to smell things now, I hope this will be a permanent side effect, i like to smell things.
The worst side effect I am starting to experience is my joints locking up. When I was on IV meds in Feburary I had the same issue, it got so severe the Doctor switched my medications. Right now it’s only in my right knee and ankle, but the last time it went from both hips down and in my wrists and elbows. I can play through the pain so far, but the last time I wasn’t able to walk for about 3 days and I am really scared that it will happen again, I don’t want any permanent damage. I also don’t want to switch the medications though either, I am resistant to a lot of the medications that are normally used to treat my strand os Pseudomonas, so it would be nice to stay on the medications that are both sensitive.
I will be on the IV Antibiotics for the next 3-4 weeks, and if worse comes to worse I will restart all my training after that. I am confident that I still have enough time to make my 10 Miler in October and to reach my 13 Minute Mile pace. I’ll just have to work extra hard after this dose of medications.
I’m sure it will all work out for the better, but wish me luck!
I keep selling myself short and saying I only walked, but even walking a 5k is a big accomplishment for me. I have never just walked before, I’m sure I have walked three miles in the time I worked at Disney, but this is different. I will say I had to walk the same corners of my road two to three times before I reached the 5k mark, but I don’t even mind!
The next part of my goal is to get my 5k under an hour, and I’m only 15 minutes over. I have no doubt that it will take effort to lose that 15 minutes, but I know that just completing the 5k distance was a great start!
In the past two days I have tried to start jogging in my walks. Today it didn’t go so well for me. I have been trying to use the Galloway method which is a run walk method. I told myself I was going to job for 10 seconds, well I got a little ahead of myself and 10 turned into 30. I won’t be making that mistake again. I definitely have to start slow, but I never stopped! After all you have to keep moving forward right? Well I will keep moving.
On my run I also came across an interesting image that I had to share on my instagram, so I will share it here as well. This is the anti-hipster photo.
The limit of Pizza
Wish me luck!
The past couple days have had there ups and downs, and I am happy to report that I have been walking! I went for a walk this past Wednesday and my Nike+ sensor just quit working on me so I made a split moment decision to buy a Garmin 110. I ordered mine through Amazon it was roughly $130.00 but I was super excited to make the investment in my running future. I received it saturday morning and of course I had to charge it and use it right away! Well after using it tonight on my longest walk yet I am pretty heart broken to report that it quit working, to say that i am disappointed is an understatement i think terms like pissed off are more accurate. I asked around for a bit before I made my purchase and everyone seemed really happy with Garmins and told me that they are really the only way to go for serious running, so I am hoping that this can get sorted as quickly and painlessly as possible.
What am I most upset about? That all that data from my walk tonight is lost. No I did not reach my 5k goal, but I did go on my longest walk and now it is just non-existent. In all I can’t if I am more upset that this Garmin let me down, or that I feel i’ve let you down. I’m not really upset for not meeting my 5k goal, tonight I walked (with my dad) 2.15K and I was exhausted. I completely underestimated how long 5k is, so I am rescheduling that 5k goal for this coming sunday. Now that I have abetter idea of what kind of a distance I have ahead of me, I think I can accurately tackle my goal!
My bigger goal for tomorrow is to figure out what is wrong with this Garmin! Hopefully to get it on the track to working again. I don’t by myself nice things very often, I have been trying to make a change in that. It’s hard to change when you spend a lot of money on yourself and it just falls apart in front of you. I am confident it will get fixed though!
Wish me luck!
As I am sitting at the edge of my bed reading over some run disney blogs a thought occurred to me. Accomplishing this Marathon in a year goal would change my life. When I left Disney and ended my college program early because I was sick I was pretty much devastated. That was the one moment in my life where I let my CF rip me away from an experience I had dreamed of for years. I will always look back at that moment and think there must have been more I could do to stay. I realize that was the moment my health just got away from me. I let Disney become the most important thing to me, and I left later then I should have because I was very sick by the time I made it back and into the doctors office. I go to the University of Michigan in Ann Arbor and my doctor is Richard Simon and he is so wonderful. I didn’t realize at the time what I had done to myself but looking back now I can see that if I had come back from Florida a week or two sooner my health today would probably be 100 times better.
I made my return from the land of Magic and my Pulmonary Function Test (PFT’s) were low, I mean mid 30’s which is down from my usual high 40’s and low 50’s. The doctor put my on IV antibiotics and I went home and took time off from working, school and I just relaxed. A week and a half went by and I saw no improvements so the doctor decided to switch some of the meds around and keep trying. I continued my IV antibiotics at home for another three weeks. I finally started feeling better, my attitude was more positive and I just had more energy I thought I was back to my baseline. I went back in for a check up and my PFT’s had done gone about 5%, which to me was horrible. I was mortified that there wasn’t more improvement, i always bounced right back after IV’s I just didn’t understand why i felt better but they were still so low. The doctor was happy that I felt well concerned about the PFT’s but decided that continuing IV’s at that point wouldn’t help the PFT’s improve, and the physical and emotional stress of IV’s would just have a reserve effect on me in the end.
I did pretty well for a couple weeks, but it wasn’t even a month before I was back down and sick again. I e-mailed my doctor and he wrote me a prescription for Cipro which is a standard CF Pneumonia pill, and I kept going. It was February when I was put back on IV Antibiotics, which is a fairly normal schedule for me every three months. The problem was I didn’t have any time to feel better. The IV’s came and went three weeks later and I didn’t see any improvement. My PFT’s were in the low 30’s and my energy level was shot. Unfortunately I haven’t felt any kind of recovery since then.
I’ve been losing weight which a tragic sign of sickness in the CF community and that combined with my energy levels scares me to death. I have been sick many times in the past, but I’ve never truly felt sick. I have my days of complaining and hating life just like everyone else, but i’ve never been scared of my CF before. I believed for the longest time that I didn’t have a can do attitude, i had a will do attitude and that it pushed through the obstacle that stood before me sick or not. I let my CF get the better of me and it is taking a lot of work to get that attitude back, and this goal is going to be a big part of that. I was so used to coasting ahead and now I am battling just to keep my place in line, I am determined to win. I am determined to be better.