Friday was my first day of pulmonary rehabilitation. It was not too bad. I enjoyed myself. Basically it is monitored exercise, well not basically that is exactly what it is. You walk on the treadmill, use the stationary bike or the arm pedal-thing and the physical therapist monitors your heart rate and O2 sats and makes sure you aren't gonna pass out on him.
Our therapist is awesome. I really like him. Very friendly and outgoing and really enjoys his job.
There were 3 of us on Friday but will be 4 on Monday as the one woman was sick. So far I am the youngest person. Not surprised. The older lady is on O2 and has COPD but recently had pneumonia and now needs some rehab to get back her lung functions. The other woman I am not sure about. She seemed OK with great O2 and heart rates until she started walking on the treadmill and then she plummeted and almost passed out. Very strange. She had also never used a treadmill before so he had to show her how to walk on one. That boggled my mind but I have to remember not everyone has grown up using these things for medical purposes. The older lady asked if I had had pneumonia and that was why I was there. I just said no. I figure in time I can let them into the whole world of CF and lung transplantation.
Diaphragmatic breathing is also something he is teaching everyone. Luckily my old Dr H was great about pushing this and by now I have mastered it. So at least that is one less person he has to teach.
As far as me, my O2 was decent, not going below 92% but my heart rate got high at 1.5mph on the treadmill so we stayed there for 20 minutes. Over time it will get better and I will be able to walk faster and longer while having a not-gonna-keel-over heart rate. I am glad to be out there and exercising and hopefully when the 18 classes are over I can continue on at home or maybe even find a cheap gym to go to. I will be on a schedule by that point so why not right?
My only issue, and this is something that of course will get easier with time as well, is my sugars plummeted after exercising. I happened to check when I got to my Jeep just to see since I know it can make your sugars lower. I was at 46! I quickly shoved 2 jolly ranchers in my mouth and hoped it would up quick. I didn't even notice the low. After 15 minutes I was up to 113 so I wasn't too worried then. But shit like this I wish I had been prepared for.
I had an endocrinologist appointment on Tuesday and I walked away from that knowing less than when I walked in. Only thing good that came from it was blood work to test me for Celiac's. I was not happy with her at all. I felt like she was saying my positive results on the OGTT were false and that I am not CFRD. May be so but lady I drop and have highs so apparently something is off with my pancreas beyond the normal shit. She said I don't need insulin, which I was expecting since I don't get really high (only with high sugar things like soda and donuts) and I have lows on my own (see exercise lol). But telling me nothing of any use as far as diet, what to eat with what to avoid highs, or lows, and saying I don't need to come back for 6 months is not helpful to someone who has just been told they have diabetes. Though if I notice I am over 200 often 2 hours after a meal or I go over 250 once, 2 hours after a meal I am to call her prior to the 6 months. So I guess it is a wait and see where this goes diagnosis.
That is about it for now. HAPPY BIG GAME DAY TOMORROW!!!!!! (since we can't say S*per Bowl anymore lol)
Saturday, February 4, 2012
Friday, January 27, 2012
Cancer and Lung Transplantation
Lately it seems that more and more of my post transplant friends are developing some sort of cancer. With a transplant your chances of developing cancer are increased because of your suppressed immune system. But this risk can seem so minuscule compared to being able to breathe that most patients wave it off.
Then there is me...
My risk of developing cancer with a decent immune system in place is high to begin with because of my Lynch Syndrome. Then you take out that immune system of mine, which has kept me flu and cold free for quite some time, and you have a breading ground for abnormal cells. Is this a risk I want to take?
Honestly I don't know.
There I said it.
I don't know if I want to take that risk. My transplant center has said they are willing to take the risk as long as my evaluation shows I am a good candidate. But do I want to?
There are so many questions, so many tests, so much unknown about it that I just don't know. Even the team said they have never transplanted a patient with a history such as mine, or someone with Lynch Syndrome. I get tests done yearly to check for polyps in all the areas affected by LS. Will these tests need to be done every 6 months now? Am I willing to have endoscopies, colonoscopies, MRI's, CT scans etc done every 6 months just so I can breathe better? Am I willing to constantly worry that every little lump or fever could be cancer developing somewhere in my body? I just don't know.
I wish I could say that being able to breathe like a healthy person is worth that risk, and a part of me says HELL YEAH. But then there is the other part that is VERY nervous that something will grow so fast on me that I will develop cancer and die. I don't want to die from cancer. I have spent 25 years knowing I will die from CF. I can't change that now. Maybe I am more afraid of dying from something that I am not expecting than I am of actually developing cancer? Who knows. Will all these worries stop me from being evaluated? Nope. And I know I still have a few years left with these air bags that I don't need to press the issue about being listed until later on. I have time to think and wonder and worry that I am making the right choice. Because in the end, only what I decide is right. Whether my mom, dad, husband or friends want me to get the transplant, only I can say yes to the doctors. Only I can do what I feel is right for me. And if in the end I decide cancer is worth the risk then great, cut me open and give me new lungs. But if I decide it is not worth it, I hope that those close to me realize that it was a long and difficult decision and one that was not made lightly.
Then there is me...
My risk of developing cancer with a decent immune system in place is high to begin with because of my Lynch Syndrome. Then you take out that immune system of mine, which has kept me flu and cold free for quite some time, and you have a breading ground for abnormal cells. Is this a risk I want to take?
Honestly I don't know.
There I said it.
I don't know if I want to take that risk. My transplant center has said they are willing to take the risk as long as my evaluation shows I am a good candidate. But do I want to?
There are so many questions, so many tests, so much unknown about it that I just don't know. Even the team said they have never transplanted a patient with a history such as mine, or someone with Lynch Syndrome. I get tests done yearly to check for polyps in all the areas affected by LS. Will these tests need to be done every 6 months now? Am I willing to have endoscopies, colonoscopies, MRI's, CT scans etc done every 6 months just so I can breathe better? Am I willing to constantly worry that every little lump or fever could be cancer developing somewhere in my body? I just don't know.
I wish I could say that being able to breathe like a healthy person is worth that risk, and a part of me says HELL YEAH. But then there is the other part that is VERY nervous that something will grow so fast on me that I will develop cancer and die. I don't want to die from cancer. I have spent 25 years knowing I will die from CF. I can't change that now. Maybe I am more afraid of dying from something that I am not expecting than I am of actually developing cancer? Who knows. Will all these worries stop me from being evaluated? Nope. And I know I still have a few years left with these air bags that I don't need to press the issue about being listed until later on. I have time to think and wonder and worry that I am making the right choice. Because in the end, only what I decide is right. Whether my mom, dad, husband or friends want me to get the transplant, only I can say yes to the doctors. Only I can do what I feel is right for me. And if in the end I decide cancer is worth the risk then great, cut me open and give me new lungs. But if I decide it is not worth it, I hope that those close to me realize that it was a long and difficult decision and one that was not made lightly.
Friday, January 20, 2012
2012 CF Awareness Video
Check out this fabulous CF awareness video done by a good friend of mine, Beth.
Video
Make sure to read the blurb under it as well. I can't get it to copy to my blog for some reason :/
Video
Make sure to read the blurb under it as well. I can't get it to copy to my blog for some reason :/
Friday, January 13, 2012
Hospital Update
This hospital admission is turning out to be quite eventful, though short. I came in Thursday morning for my endoscopic ultrasound - cysts on my pancreas look normal and just need to be monitored by MRI every 6 months - and was admitted afterwards. I got to hang out in endoscopy all day until 4pm when my room was finally ready.
I got my PICC placed today, luckily that was uneventful! I got my nice dose of Benadryl prior and was nice and high for it. Worked for me! I would rather not be totally with it when I get it done.
Unfortunately my heart rate has been really high all day today and my blood pressure really low. I have been drinking water and got 500cc of saline to try to help but its not doing much. I got an EKG done to check my heart and it showed tachycardia....nothing new. Resting my heart rate has been in the 120s and when exercising with PT it went up to 168. I am usually around 100-110 resting. This is new since I was not having this issue on Wednesday before I came in. Hopefully it is just from the Benadryl and "excitement" of the PICC placement.
The results of my OGTT I had done on Monday came back positive for CFRD (Cystic Fibrosis Related Diabetes). My A1C was 6.3 (not too bad) and my 2 hours post sugar level was 215. Anything over 200 is considered positive. So I am right there over the line. I can get started on regulating my insulin and maybe I won't be so ridiculously tired anymore! I am not surprised by this result in the least. I knew it was gonna happen at some point and I am glad to get it over with prior to transplant. I don't want to have to learn 2 new major life changes at once!
It is looking like I will be getting out on Sunday which is great. Since I am not really sick and just getting IVs started so I can make it through the semester, there is no real reason for me to stay. Unless of course I feel shitty all day tomorrow and Sunday. But as long as my HR goes down to normal and these low grade fevers stop I should be good to go!
I got my PICC placed today, luckily that was uneventful! I got my nice dose of Benadryl prior and was nice and high for it. Worked for me! I would rather not be totally with it when I get it done.
Unfortunately my heart rate has been really high all day today and my blood pressure really low. I have been drinking water and got 500cc of saline to try to help but its not doing much. I got an EKG done to check my heart and it showed tachycardia....nothing new. Resting my heart rate has been in the 120s and when exercising with PT it went up to 168. I am usually around 100-110 resting. This is new since I was not having this issue on Wednesday before I came in. Hopefully it is just from the Benadryl and "excitement" of the PICC placement.
The results of my OGTT I had done on Monday came back positive for CFRD (Cystic Fibrosis Related Diabetes). My A1C was 6.3 (not too bad) and my 2 hours post sugar level was 215. Anything over 200 is considered positive. So I am right there over the line. I can get started on regulating my insulin and maybe I won't be so ridiculously tired anymore! I am not surprised by this result in the least. I knew it was gonna happen at some point and I am glad to get it over with prior to transplant. I don't want to have to learn 2 new major life changes at once!
It is looking like I will be getting out on Sunday which is great. Since I am not really sick and just getting IVs started so I can make it through the semester, there is no real reason for me to stay. Unless of course I feel shitty all day tomorrow and Sunday. But as long as my HR goes down to normal and these low grade fevers stop I should be good to go!
Tuesday, January 10, 2012
I Miss Working
Yep I said it. I miss the dressing up, doing my hair, social interactions of a job. A steady 9-5 everyday job.
Yesterday I had my first OGTT (Oral Glucose Tolerance Test) - for another blog another day I promise - and on my way I drove past a small corporate park right on Rte 1. Its down the street from my house, maybe 10 minutes to get to it depending on traffic of course. But I found myself wondering what places of business were in there and if they were hiring for secretary - oh sorry administrative assistant - positions and how much they paid. I found myself day dreaming about getting up in the morning and showering, getting dressed and heading to work. Doing the same old boring paperwork day after day but thankful that I had a job and was getting out of the house. Enjoying the paycheck that I was bringing home weekly and relishing that I was again contributing to society.
Then reality hit. I was exhausted from being up at 7am so I could be in Boston by 10am. I was SOB walking into the CT clinic to have the test done. I went home and slept for 2.5 hours because I was so tired, which beat out exercising.
If I went back to work I would have to go to bed at like 9pm, or earlier, in order to get enough sleep to possibly stay awake for the full day. I wouldn't be able to exercise because I would be so tired all the time. I wouldn't be able to do any type of housework or cook because I would be exhausted all the time. I would be a miserable bitch because I would be exhausted all the time. I wouldn't want to do anything on the weekends except stay in bed because I would be exhausted all the time.
Working again, 40+ hours a week on a set schedule is not doable for me. Its my reality. I need to sleep when I can. I need to be able to rest a whole day if needed - and not just on the weekend. I need to have the flexibility to be hospitalized when needed and not worry about my job. It sucks and I want to work again. I truly do. I miss all that comes with working, yes even the days where I was bored out of my skull with nothing to do. Because at least I was out of the house, making a living and not depending on SSDI to pay all my bills for me.
I guess it is something I can look forward to post transplant...
Yesterday I had my first OGTT (Oral Glucose Tolerance Test) - for another blog another day I promise - and on my way I drove past a small corporate park right on Rte 1. Its down the street from my house, maybe 10 minutes to get to it depending on traffic of course. But I found myself wondering what places of business were in there and if they were hiring for secretary - oh sorry administrative assistant - positions and how much they paid. I found myself day dreaming about getting up in the morning and showering, getting dressed and heading to work. Doing the same old boring paperwork day after day but thankful that I had a job and was getting out of the house. Enjoying the paycheck that I was bringing home weekly and relishing that I was again contributing to society.
Then reality hit. I was exhausted from being up at 7am so I could be in Boston by 10am. I was SOB walking into the CT clinic to have the test done. I went home and slept for 2.5 hours because I was so tired, which beat out exercising.
If I went back to work I would have to go to bed at like 9pm, or earlier, in order to get enough sleep to possibly stay awake for the full day. I wouldn't be able to exercise because I would be so tired all the time. I wouldn't be able to do any type of housework or cook because I would be exhausted all the time. I would be a miserable bitch because I would be exhausted all the time. I wouldn't want to do anything on the weekends except stay in bed because I would be exhausted all the time.
Working again, 40+ hours a week on a set schedule is not doable for me. Its my reality. I need to sleep when I can. I need to be able to rest a whole day if needed - and not just on the weekend. I need to have the flexibility to be hospitalized when needed and not worry about my job. It sucks and I want to work again. I truly do. I miss all that comes with working, yes even the days where I was bored out of my skull with nothing to do. Because at least I was out of the house, making a living and not depending on SSDI to pay all my bills for me.
I guess it is something I can look forward to post transplant...
Saturday, December 31, 2011
Ringing in the New Year!
2012 is sure to be filled with a ton of excitement. P and I get married in October, then go on our honeymoon to Hawaii. My brother turns 30 around Thanksgiving so we are going to celebrate it with my family in PA. I am continuing my Master's classes (thanks to the disability department at school for getting my financial aid sorted out). Many new babies and weddings this year for friends and family. Plus any exciting things that may happen along the way. I am looking forward to a new year filled with exciting times and new adventures.
I have set some resolutions for myself for this upcoming year. With no pressure though. These are things that I need to work on either way so I am adding them to my resolution list.
1. Use my Wii fit to exercise and get my exercise age down from 44 to something closer to 31. I want to make sure I am not on O2 24/7 when I walk down the aisle to marry the love of my life.
2. Eat healthier foods, and cook more so the whole family eats better. We all need to eat better and stop with the processed junk foods.
3. Pay more attention to world happenings. I am ignorant to what is going on in the world. The news always depresses me but then I don't know anything of importance.
As I ring in the new year tonight with my soon to be hubby I reflect back on the 2011 year. So much happened! P proposed to me (by far the most exciting!). I started grad school. We had our first family vacation together. We got a dog. I started the transplant evaluation process. My family got to visit me and see my new home. P bought a new car. I got my hysterectomy. My afghan won 1st prize at the local fair. And that is all I can remember right now. There were many little moments through out but these are the most memorable. Unfortunately not everything was happy. We lost many CF friends. The greatest lost for me was Bree. I still miss her terribly and hope she is enjoying her time with those she loved and lost before her.
I hope everyone has a happy and healthy new year and takes whatever life hands them in stride. There will be good times and bad times but through it all we will press on. May you all be safe this evening!!!
Sunday, December 25, 2011
Wednesday, December 21, 2011
Gut Troubles
The past few weeks I have been having some gut issues. I initially thought it might be Celiac's (runs in the family) but we are trying something else first. I have been really bloated, worse than normal, and it comes on even if all I have is a small cup of OJ. Not normal. I have also been having bathroom issues that I won't go into detail with on this public of a place.
Today at clinic I got an X-ray done of my abdomen and am getting tested for C. Diff. The X-ray showed no blockages but a definite fullness. As in stuffed to the gills, need to do something about it fullness. So tomorrow I get to spend all day trying to empty myself out so that I can enjoy Christmas dinner and not want to explode, literally, after my first bite. My fingers are crossed I only need the one day since I have a lot of food shopping to do on Friday to prepare for dinner on Christmas day.
Other than that my PFTs were slightly up (40% vs 37% last time) but I requested a round of IVs prior to starting class on the 19th. I go in for my endoscopic ultrasound on January 12th so we are going to start IVs then as well. There should be no issues with me being out to start on time. If I feel a lot better after my mini clean out tomorrow I might see about just making an appointment for that week and seeing if I really need to get IVs. Who knows, a clean gut might help the lungs out.
That is all my bloggie friends. Hope you all have a very Merry Christmas and Happy New Year!!!
Today at clinic I got an X-ray done of my abdomen and am getting tested for C. Diff. The X-ray showed no blockages but a definite fullness. As in stuffed to the gills, need to do something about it fullness. So tomorrow I get to spend all day trying to empty myself out so that I can enjoy Christmas dinner and not want to explode, literally, after my first bite. My fingers are crossed I only need the one day since I have a lot of food shopping to do on Friday to prepare for dinner on Christmas day.
Other than that my PFTs were slightly up (40% vs 37% last time) but I requested a round of IVs prior to starting class on the 19th. I go in for my endoscopic ultrasound on January 12th so we are going to start IVs then as well. There should be no issues with me being out to start on time. If I feel a lot better after my mini clean out tomorrow I might see about just making an appointment for that week and seeing if I really need to get IVs. Who knows, a clean gut might help the lungs out.
That is all my bloggie friends. Hope you all have a very Merry Christmas and Happy New Year!!!
Monday, December 5, 2011
Crochet Sale for the Holidays
I have a few pieces of inventory I am selling on SALE for the holidays. If you are interested just post under the picture of the piece.
Crochet Cyster's Crafts
Plus it will help us pay for our wedding!!!
Crochet Cyster's Crafts
Plus it will help us pay for our wedding!!!
Friday, December 2, 2011
Insert Catchy Title Here
I have been a miserable, hostile bitch the past couple of weeks and had no desire to blog so I apologize. Besides you probably would have blocked me if you could have seen what was in my head! We lowered my Wellbutrin dose to 150mgs so I would stop getting nauseous, and it helped, but I got violent. Not physically, but verbally and in my head. So once I figured out that was the culprit I stopped! Now waiting to get back to normal.
Wednesday I had a very busy day in Boston. I started with CF clinic. My weight is up, my lungs sound fairly clear, but my inflammation is wreaking havoc on me still. Last appointment I was 50% FEV1 (fluke but still) and this time I was 37%. Part of that was because I had to avoid any duoneb or symbicort before my PFTs at transplant clinic after CF clinic. Shhh I did about 3 minutes worth of my duoneb at 7am so I could at least function somewhat. My guess is I am about 42-43% based on my SOB and overall feeling healthwise. So we decided to put me on 2 weeks of oral Cipro and I go back the week of Christmas to see if I have improved at all.
After clinic it was off to get a full set of PFTs done and a 6 minute walk test for my transplant evaluation. PFTs were uneventful, just like usual lol. The walk test I started off slow so I could maintain my pace the whole time, but I ended up having to slow down about halfway through. My O2 wasn't too bad at least. I dipped to 88% at one point, but since it was reading my HR at 71, we weren't sure how correct it was. So 90% was written as my lowest sat for the walk. I have no idea how far I walked, as I didn't ask. One thing I found interesting was my BP before the walk was 99 (top number I don't remember the bottom number) and 129 (again only top) after. That's quite the jump!
After that I had a 90 minute reprieve to eat lunch and relax till I had to go get my bone density scan done. Since it has been almost 6 months since my hysterectomy, it was time to get scanned and make sure I haven't started to loose any bone mass. We shall find out in a couple of weeks!
Other than that, nothing exciting to post about. Only things I have left to do for my evaluation are my last shot for the Hep B vaccine, dentist appointment and the 24hour PH probe. That one I am not looking forward to! Tube down my nose in my stomach for 24 hours....yay......
Wednesday I had a very busy day in Boston. I started with CF clinic. My weight is up, my lungs sound fairly clear, but my inflammation is wreaking havoc on me still. Last appointment I was 50% FEV1 (fluke but still) and this time I was 37%. Part of that was because I had to avoid any duoneb or symbicort before my PFTs at transplant clinic after CF clinic. Shhh I did about 3 minutes worth of my duoneb at 7am so I could at least function somewhat. My guess is I am about 42-43% based on my SOB and overall feeling healthwise. So we decided to put me on 2 weeks of oral Cipro and I go back the week of Christmas to see if I have improved at all.
After clinic it was off to get a full set of PFTs done and a 6 minute walk test for my transplant evaluation. PFTs were uneventful, just like usual lol. The walk test I started off slow so I could maintain my pace the whole time, but I ended up having to slow down about halfway through. My O2 wasn't too bad at least. I dipped to 88% at one point, but since it was reading my HR at 71, we weren't sure how correct it was. So 90% was written as my lowest sat for the walk. I have no idea how far I walked, as I didn't ask. One thing I found interesting was my BP before the walk was 99 (top number I don't remember the bottom number) and 129 (again only top) after. That's quite the jump!
After that I had a 90 minute reprieve to eat lunch and relax till I had to go get my bone density scan done. Since it has been almost 6 months since my hysterectomy, it was time to get scanned and make sure I haven't started to loose any bone mass. We shall find out in a couple of weeks!
Other than that, nothing exciting to post about. Only things I have left to do for my evaluation are my last shot for the Hep B vaccine, dentist appointment and the 24hour PH probe. That one I am not looking forward to! Tube down my nose in my stomach for 24 hours....yay......
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