I haven't written in quite some time. For the first time since I started this Blog about Interstitial Cystitis, I have found it difficult to write. When battling IC and Volunteering as a Patient Advocate, I felt motivated and easy to find topics about which I wanted to write.
Since being diagnosed with Idiopathic Bronchiolitis Obliterans last February, and being told I needed a Lung Transplant, it has become harder and harder for me to find topics to write about without sounding like all I was doing was whining.
This is a journey unlike any other. I know there are others out there who are transplant patients that can relate. Much like when I Blogged about IC, other IC patients could relate. There are many people struggling with multiple serious and life threatening conditions. So I don't want to just write about how miserable I am. But I find it difficult and so I don't write.
I must go to Rehab every Tuesday and Thursday until I get my transplant. It's rough and I come home from each class feeling like I was hit by a truck. There are never ending appointments and tests to be done and getting anywhere takes a village with all the portable oxygen I need to take with me and the need for a wheel chair. It's exhausting.
Now I got a call that I have to have another Angiogram in November. It's a UNOS requirement that certain tests be repeated (if they have not already done so) every six months. So it's already time to repeat this test. Let's get that done and over with as soon as possible. I can't believe it's that time already!
I'm told my Lung Allocation Score is good and the UNOS system is "looking" at me all the time but just hasn't found a match. The Transplant Team feels good it will come. I like their confidence because the longer I go without getting the call, the harder it is to feel confident. But I want to, so I try. Some days are better than others.
Emotions are all over the map, but they tell me I wouldn't be normal if that wasn't the case.
I have been at a loss for words.
I am doing everything they throw at me in order to get my Transplant. So let's get that Angiogram done. Got my flu shot today, Rehab Thursday today. Taking my meds as I am supposed to etc. Being the best compliant patient one can be!
I feel at a loss for words beyond expressing the same thing all the time. This is hard. One day at a time is all I can do.
Since being diagnosed with Idiopathic Bronchiolitis Obliterans last February, and being told I needed a Lung Transplant, it has become harder and harder for me to find topics to write about without sounding like all I was doing was whining.
This is a journey unlike any other. I know there are others out there who are transplant patients that can relate. Much like when I Blogged about IC, other IC patients could relate. There are many people struggling with multiple serious and life threatening conditions. So I don't want to just write about how miserable I am. But I find it difficult and so I don't write.
I must go to Rehab every Tuesday and Thursday until I get my transplant. It's rough and I come home from each class feeling like I was hit by a truck. There are never ending appointments and tests to be done and getting anywhere takes a village with all the portable oxygen I need to take with me and the need for a wheel chair. It's exhausting.
Now I got a call that I have to have another Angiogram in November. It's a UNOS requirement that certain tests be repeated (if they have not already done so) every six months. So it's already time to repeat this test. Let's get that done and over with as soon as possible. I can't believe it's that time already!
I'm told my Lung Allocation Score is good and the UNOS system is "looking" at me all the time but just hasn't found a match. The Transplant Team feels good it will come. I like their confidence because the longer I go without getting the call, the harder it is to feel confident. But I want to, so I try. Some days are better than others.
Emotions are all over the map, but they tell me I wouldn't be normal if that wasn't the case.
I have been at a loss for words.
I am doing everything they throw at me in order to get my Transplant. So let's get that Angiogram done. Got my flu shot today, Rehab Thursday today. Taking my meds as I am supposed to etc. Being the best compliant patient one can be!
I feel at a loss for words beyond expressing the same thing all the time. This is hard. One day at a time is all I can do.
Glad to hear how you are doing.
ReplyDeleteWasn't sure if I should be worried or happy you had already had your transplant when I didn't see any posts for 2 weeks.
I completely understand about being tired.
This is not a tired as in "we all get tired" sometimes.
No, this is a completely bone tired where doing anything is a major exertion and takes more energy than we have.
I truly don't know how you can go out for pulm rehab twice a week.
I am totally exhausted for several days if I just go sit in a Dr office for a simple visit!
We aren't complaining, just trying to describe what it is like to have bronchiolitis obliterans.
I'm with you, Catherine, I have chosen to not let these disease get me down.
The only thing we can "somewhat" control is our attitude.
Rest in God's timing for He has a great plan for you.
A plan for a future and for hope. Jeremiah 29:11
Traveling the same path,
Carol
Thank you for your encouragement and support!
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