Oh Geeezzzz and Oh My

Winter Gardening

Grasses and perennials pruned
Wearing their haircut
Trim and neat
Bearing the memory of Spring to burst forth one day soon

6 weeks post transplant.....

Yesterday when I woke up my voice sounded like a frog. Well many times I have mucus throat, or hetero zygote (gene carrier) CF phlegm that accumulates in my throat. After a little while the thick stuff loosens and goes away. Well my voice was funny all day and even after sucking on zinc lozenges I still was gravely. So, virus? Did not feel sick but Anna was nervous and so was I. Doug and I made the switcheroo........ I came home and he went the other way to take care of Anna until I am virus clear. Guess I do have a little something that is trying to take hold. I am kicking it though. But, did I give it to Anna? Time will tell, but she feels we are so good at washing hands and being careful that there is a good chance she is going to be fine. I hope so.

So rest for me. Ahhhhh. Where my heart is at Anna's side helping her going through all the hoops and loops, it is good for her Dad to be there too. His work has been so supportive and wonderful. We so appreciate the compassion and understanding he has received to get through this period. It is really quite remarkable. We do not ever take these kindnesses for granted. I am so glad that we have this flexibility so that when one of us does succumb to the nasty scourges of viruses we can spell each other.

That is the Oh Geeeeezzzzz part of this. Oh Geeeezzzzzz that I should have the audacity to get something like a virus to keep me from doing "the work". Shouldn't I be better than that? I should never need someone to step in for me. I have had to learn about this way to receive in this past year more than ever before. I have to let go and let it be even though I do not want to. I prefer more control, really now.

But, since I was home I got to receive an Oh My! I asked a neighbor to help me with getting a gardener to do the winter pruning and weeding as I have been so unable to care for the home front. My lovely and kind neighbor has a friend with a gardening business who agreed to do the necessary job for me and they arrived this morning. So wonderful to have women who understand plants, gardens and a fine sense of aesthetics. So wonderful to know these women were caring for my garden while I was resting warm inside. So wonderful to discover they were giving this as a gift to me. I fully expected to pay them for their work but I was told, "you have been going through Hell and dealing this for such a long time. This is our gift to you." Oh My, my eyes swelled with gratitude tears. Such kindness and nurturing from lovely women. I can not tell you how precious this was for me. I have worked so hard for so long fighting CF and all of it and this is the time in my life that it has all come to a head with the transplant and I need this type of love and support so much and it is being offered. Oh, so great, so great. Thank you, thank you.

It is hard to ask when we need help. It is hard to receive even when it is lovingly given. It is like a feeling of embarrassment. I should be able to do it all myself. I should be strong enough. I should not show how vulnerable I am. I should not trouble any one else. I should rise above this. I should walk on water.............. This time I can not. I just can not. So, I have had to ask, I have had to blog, to share about this journey and to be vulnerable and open and see what that is like. It is embarrassing sometimes when someone says, "oh, I love the food you have been eating. The pictures were great." Then I know they have read my blog, know what is going on in my life and I can not hide. But, I put myself there. I am doing this sharing thing. When the embarrassment arises I look at it, feel it, and then I do not hang on to it very long. I have always honored openness and I do know that I have needed to develop more vulnerability in my life. I think that is happening. It is helping me to trust more as what is occurring is kind people are so actively involved in my life. I am receiving the help that I need and it is just so, so wonderful.

Medical update: At Anna's clinic visit yesterday we could see more progress. Anna's creatinine level was 1.0, completely normal kidney function! Everyone was very happy. Anna is needing to adjust blood pressure medications now as the increase in prograf is causing it to rise. But the way transplants are treated is one medication is given to counteract the side effects of the other. It is all a balancing act. Anna just needs to follow orders and take the "damn" pills. They are what will keep her lungs from being rejected. She was also told she just needs to come for clinic once per week right now. Dr. Weill is also putting off any bronchcoscopies. He does not want to do anything invasive at this time as she has been through so much. From his perspective "bronchs" have not proven themselves in studies to be very helpful in determining rejection in comparison to the dangers of the procedure. Other signs such as a drop in pulmonary function, fever, or shortness of breath are better indicators. This is so interesting because there are some transplant centers that do many bronchs and others that do none. There is no one right way to do all of this care. It is up to the discretion of the docs. Must say, we have been very pleased with the attitude and care at Stanford and feel Anna has received the best.

Anna is getting stronger every day and we no longer carry the wheelchair around with us. Go Anna Go..............

Today was the first day of pulmonary rehab, tomorrow is a cytogam infusion to ward off the CMV virus and Thursday is endocrine clinic. (Actually Anna's blood sugars have stayed well in control and she has needed little insulin.)