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.

Friday, January 20, 2012

2012 CF Awareness Video

Check out this fabulous CF awareness video done by a good friend of mine, Beth.


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!

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...