upsetting Dr. visit
Well what a disappointing visit. Not only do i have to stay on the meds (no reduction) My pulmonary function tests have declined by 5%.....which is no big deal if your at 100% but a significant drop if your already at 50%. I was very shocked by the drop because I have felt fine, even better since the weather changed.
If that wasn't bad enough he tells me if they don't get the funding approval for the retuximab that they want to try next he is going to send me to the transplant assessment team in Toronto........I'm scared out of my mind, but at the same time I feel calm too. Is that a little schizophrenic?
Transplant was mentioned once and I was told I would probably not quailfy because of the underlieing autoimmune stuff....now he says that because all the rst seems to be well controlled with meds that I may qualify. he also reassured me that it would not be for awhile because I am not even on oxygen at this point.
the thought of transplant scares me more than dying from this....how weird is that? I have always been a donor myself so why does it freak me out so much....I did learn that I probably would not be able to donate anything myself now because of all the meds and stuff.....except mybe my corneas. okay this is getting a bit morbid.
I have been toying with the idea of writing letters to my kids, but i am not sure how to start. I am glad that I was able to see them to adulthood before this illness creeped into my life. I wonder if i will be able to see my grand children and get to know them at all.......Okay I eed to go have a good cry and finish this later.
If that wasn't bad enough he tells me if they don't get the funding approval for the retuximab that they want to try next he is going to send me to the transplant assessment team in Toronto........I'm scared out of my mind, but at the same time I feel calm too. Is that a little schizophrenic?
Transplant was mentioned once and I was told I would probably not quailfy because of the underlieing autoimmune stuff....now he says that because all the rst seems to be well controlled with meds that I may qualify. he also reassured me that it would not be for awhile because I am not even on oxygen at this point.
the thought of transplant scares me more than dying from this....how weird is that? I have always been a donor myself so why does it freak me out so much....I did learn that I probably would not be able to donate anything myself now because of all the meds and stuff.....except mybe my corneas. okay this is getting a bit morbid.
I have been toying with the idea of writing letters to my kids, but i am not sure how to start. I am glad that I was able to see them to adulthood before this illness creeped into my life. I wonder if i will be able to see my grand children and get to know them at all.......Okay I eed to go have a good cry and finish this later.
Replies
Hi: I read your journal entry with full understanding of your feelings. I have been quite fortunate with the progression of my illness but I know the feelings of fear, concern. writing letters (for the future)....I know it all. You have an understanding and supportive husband, I think you have written, but only YOU can deal with your feelings.Easier said than done, but maybe tomorrow will look a little bit better. Try to be as positive as you can be............and also know that others care.........
I am so sorry that your doctor\'s visit for lack of a better word \"sucked.\"
And having gotten the news that you got today, I am sure your mind and thoughts are all over the charts. That\'s understandable.
About writing the letter to your kids...I did that after my son was born because I almost died of congestive heart failure and had so much I wanted to tell him. I found it cathartic ( for my emotions and soul), I still have the letter and he is 23.
After I got sick with CFS and had no clue what was going on at the time, I wrote my husband a letter like that. Not only did I want them to have something to let them know what they meant to me but it also helped me deal with the situation.
Try to remember to enjoy the moments this weekend. I know that it will be hard with that on your mind but it can make them all the more golden too!
Love, Peace and Hugs and Special Prayers for you !
The first thing I did was come to check how your appt. went. Gosh darn\'t I was hoping for some good news for you. You are handling it better than most. I too thought of writing letters, but when I get to that point I feel like I\'ve given up. Weird Kim thing. I can see how they would be very cathartic. No you are far from schizophrenic, just dealing with some very heavy stuff. Sending positive vibes your way. Love, Peace and Courage, Kim
Sorry your doctors visit wasn\'t a good one. But the it isn;t to ofteb that a visit goes well. I am glad that you have a positive attitude toward a possible transplant. At least your doctor is going to bat for you. Toronto is a good place.
Stay strong.
Hugs and love Nance
thinking of you dear beth. sending positive thoughts across the oceans, rivers and mountains to you.
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sorry I\'m duplicating again. seems it happens a lot. Just wanted to say that I\'m sorry you are in such a situation, and hope very much for peace of mind for you and, of course, that things improve. Absorb the love around you. Wiser people than I, above, have given good advice. Know that I and loads of people on here are thinking about you this weekend.
Gee wiz gal! You just can\'t get a break. Fear and peace go hand in hand with me a lot. I say it\'s God, but my friends might beg to differ. ;-) Breathe deeply on that ride. it may help.
hey Beth, sorry your sidit with the dr didn\'t go well. I will keep you in my prayers. I will send positive thought s your way. I think writing letters to your kids is a good idea, I have started that myself, havent finished. hugs to you. think positive and take care.
colleen