Friday, June 19, 2009

Welcome and Nice talk

First I want to welcome any new readers that have found me through Ronnie's blog. Thank you Ronnie for our nice exchange of words yesterday.

As many know, I am struggling with the idea of becoming activated on the transplant list. I have already been evaluated and accepted at Brigham and Women's Hospital in Boston. At my last appointment they really expressed that I should be activated. They stated my CF doctor is really concerned about me and has called several times.

Yesterday, my phone rang. It was my CF Doctor, Dr. Z. He had heard that I having a tough time making the decision to become active. I told him I needed more information. Here is a list of why he would like to see me listed:
1.I have a lot of scarring. In layman terms, there is no way to improve your numbers.
2. There are not treatments to add except IVs when I get sick. I already do what they would do for me in the hospital.
3. It takes me a long time to recover from a flare up. This past time I was on IVs for 5 weeks. Which has been the norm lately.
4. My weight. I loose it so easy and have a hard time gaining it back.
5. He thinks I spend too much time on my CF. This one I just don't understand because I always have. The only thing I have added is daily Chest PT from a home health nurse.
6. I am physically healthy now to handle a transplant and he doesn't want me to loose that window.

I am very glad Dr. Z called. We talked for a good 45 minutes. He really gave me some things to go on.

I don't have the traditional case where I need Oxygen 24/7, I only need it with exercise or exertion. I don't think my body is retaining CO2 but i may be wrong...none has discussed this with me. My FEV1 is higher then a lot of people that have a transplant. My biggest issue is when I get sick, I get really sick and this scares everyone except me. I have always kept a positive attitude and that I will fight until the end. I just look at an infection as a bump in the road. I guess that is where my attitude needs to change. I guess I need to think about that one bad infection and be scared of it. I just never have lived like that.

I have made a promise to myself that I will not allow myself to waste away. I watch my weight and calorie intake. I have also been very committed to exercising. I need to keep my muscle ton up so I have every chance for a great recovery from the transplant.

So where am I in this decision? I am giving one last effort to see if I can keep any infections away by being very active on the treadmill. I am going to make a daily diary of how I feel/how my current condition is hindering my quality of life. For example, yesterday the treadmill was hard. After a minute, I felt I was huffing and puffing. I only did the treadmill for 20 minutes. So this tells me, I have a low tolerance to damp heavy air which is what the air quality was yesterday. That kind of sucks since I live in Maine and it is very humid during the summer months.

Another example, if I wake up in the middle of the night to go pee and I lay in bed contemplating getting up to go. Why you ask? Because as soon as I get up, I cough and cough and cough. Sometimes this lasts for 10 minutes other times an hour. It is very hard to go back to sleep after a coughing fit.

Wow, this is a long post. I have so much more on my mind. My next post will be shorter I promise. I hope you all have a great day.


Natalia Ritchie said...

I have always thought that when it was time for transplant I would know. 10 years ago when I was very sick, and I went to have a consultation for transplant, even though I had a 32% lung function, I was turned away. I was too well. And deep down I felt that. Too well, even though I was very limited. But I guess the doctors knew something I didn't, since I did get better. Over the last 5 years I have had a lung function of 35% of around that, but have been very well overall. So it's not to say that doctors always look at certain numbers and push transplant. When I was worried, and felt that I was sick, they turned me away, and said, we have faith in you getting better. Give it time. It was during this past year that things have become obviously clear to me. It was me in fact that brought it up with the doctors. Why, because I am ready. The things that are working for me are that I have a high BMI. My weight is good. 19.5BMI, and 54.4 kg at 5'6. My lung function was 32% in December, and went to 18% in February. It has been around 25% since. I am on oxygen on exertion too, and when I work out, during sleep I keep it on about 0.5-1L. When I rest I technically am okay, but when I cough a lot I check my saturation (I have an oxmeter at home) and tend to dip to 89-90% which is not good for my lungs. My biggest problem right now is my reliance on IV's. I am on for weeks at a time and only am able to remain off for a few weeks. At this point it is not worth it to take 4 steps forward, and 5 steps back off the IV's. It was a hard decision, since IV's are hard to be on, but I feel human on them, and my docs and I felt it's batter to keep me on. I have a PORT and I do them on my own at home, so I get to lead a normal life otherwise. The fear is, if you rely on antibiotics so much, you develop resistance.

I think you have to know in your heart that what you're doing is the right thing for you. You also have to know the realities and the risks of waiting too long. As I said those friends that I have lost as a result of waiting too long is a heart breaking lesson to learn. My experience says that when the docs come to you and say it's time, they are usually right.

Keep working at it, it's the right thing to do if you are listed or not. Stay as well as possible. These decisions are hard, and though it seems like the answer will never come, it will. I wish you nothing but good health no matter what decision to come to .

Anonymous said...

Well, I think you know, you and I are in such similar situations. I'm putting it off as well until I see a few (or a couple) more signs.

I really feel for you and the decision to make all the while your doc is saying to do it now.

One thing I've noticed is reading everyone's responses to what their fev1s were leading up to tx is they seemed to move rather swiftly. Maybe that's what the docs are referring to as on the upside to the window. I don't know, I'm trying to figure it out too. :) Wish there was a book called, "How to decide the timing of tx - For Dummies"! Lol That would come in handy. Not that we're dummies about it, but you know what I mean. Anyways....

Do you have another clinic some where close enough to go for a second opinion? Maybe someone else giving you the same or different feedback would be beneficial for you to think about.

I hope you're able to find the answer for yourself that you're okay with.

Big Hugs!!!
Cowtown, kelly

Kellee said...

hey Im kellee a cf wife blogger.
Just wanted to say Hi and welcome you to my blog family =)

Wish2Breathe said...


I think that you should maybe call your center and talk to them in more detail about your test results. Ask them what your results were for all the tests and then ask them what the normal range is and what people are at when they get transplanted normally. That may help you to judge just how in need you really are from a more scientific/technical point of view.

As for being ready to be listed I remember telling my doc when he asked me if I was ready - yes I am ready ... but don't call me tomorrow. I knew physically I needed help but mentally I wasn't there yet. I needed some time for my brain to catch up to where my body was at.

I felt ready then I got called. I actually contemplated saying no when I was called. I felt good that day - in my mind I was fine without a transplant. Then I remembered I felt good because I had 3 weeks of abx in my system and thus less crud in my lungs. I hesitated and then said yes.

I am not sure if you are religious or not or believe in God, but one thing that helped me was to have faith that if it wasn't right or supposed to happen then it wouldn't happen. Even if I got called if it wasn't the time for me to get the transplant then it would be a dry run or something along those lines.

I went to the hosp. when I got called and the woman that checked me in had my birthday and my moms name (full name). Then I ran into someone that knew me - and someone that had seen me at a restaurant the week before was actually in the OR to help in my surgery. I knew when the woman had the same birthday as me I was going to get transplanted and that it would be okay. I was still terrified when I had to say goodbye to everyone but it felt okay deep down.
I guess the main thing I can sa is be totally honest with yourself. I remember just a week or so before my transplant looking at myself in the mirror and crying wondering how much more I would let myself take. I was so tired and exhausted - I did CPT 3 times a day at least for normally 2 hours periods. I did albuterol treatments every 4 hours, and then whatever else they had me on that month. I wasn't prescribed them that often but I did it to feel on the healthy side of sick. I spent probably 75% of my awake time treating myself.

I was relieved to wake up and not have to do daily treatments (I did at first but stopped after a week)and to not have to do CPT and so on. Just to have a break.

I will stop now I just wanted to say that I think it is normal to struggle with the decision and doubt things but either way I wish you luck in making the decision.

Cystic Gal said...

I think it's crazy that so many of us, in the same decision, same stats, same experiences. It's nice to know that at least, we're not the only ones going, "Wait a second? What should I be doing here?"

Thanks for sharing,
Cystic Gal,