To All of my Family, Friends,
I know I haven't posted in 2 weeks. There has been a steady trend in my numbers both liver enzymes and bilirubin count going down. I am still on the high side of normal, my bili is down to 2.4 and am still itching, maybe not quite as bad as before. As it continually slides down (I hope and pray) I should get more and more relief. I still take a prescription antihistamine, oatmeal baths and Sarna lotion. Sarna (the name of the lotion) is amazing and can be used for any kind of itching, from my problems to poison ivy to insect bites. I buy mine from Walgreen's. I will be sending some to the cottage this summer as someone is always itching for some reason or another and it is really great stuff.
Speaking of the cottage...I may not be able to go for the 4th. We are in the process of getting our well water retested. We tested it last fall and found we had bacteria in the water which for the normal person is not a problem but for me, as I am so immunosuppressed, it is a problem. Plus we have had our first leak and evidently there is some damage as well as some mold. How much damage we won't know until Den gets there and can see for himself what we need to do to fix it. I can't come into any kind of a situation with mold so I may be staying back in Holland. Here at home I can walk without being "dusted" on the dirt roads. I go out every night after 8 and walk for at least 2 miles and it is so pleasant. There are certainly worse things than staying home. Last summer the bone pain I was experiencing was much worse so I am not complaining! I have no desire to go backwards, especially now that I feel I am moving forward again.
I want all of you to know I do feel I am moving forward again. I feel better and stronger every day. When I walk I am using hand weights to try to build some muscle back into my arms. Yes, I do 4 reps of everything girls....and I only made you do 2 reps! Or I lift to failure, which means I can't do another one for those of you who never lifted for me.
The Lord and I have had some good conversations lately and I am hopeful and optimistic about my recovery. I know I told you before but you only have to make one trip to Ann Arbor with me to understand my viewpoint. I have talked with people who have had ugly flare ups with GVHD 2-8 years out of transplant so one can never tell. For today the sun is shining, the breeze is warm, I feel stronger and I choose to enjoy the bounty of the day. I am thankful for reliable transportation for my trips to Ann Arbor, I love choosing a different restaurant for lunch each time, I am grateful for friends who accompany me (Lynette and Jane) and make me laugh.....and talk "Cheer". I am grateful for the frozen meals I can pop in the oven when I have been gone all day from our "House Church". I am grateful I have 2 daughters who live in the area and can give me my daily infusion when Den is not available. I am grateful for a family that loves (sometimes smothers) me with the best of intentions. I am grateful for all of you who seem to care and remember me in prayer. Thank you!
I go back to Ann Arbor tomorrow (Monday) and Tuesday, then again Friday for my ECP treatments. The nurses there are fabulous and sometimes I feel as though I have joined another family. They care so much and rejoice with me as my numbers fall. They are fully invested in my recovery.
I hope this information helps you know how I am doing. I talk to so many who read this blog and they all thank me for the updates.
On another note, we are eagerly anticipating the arrival of Baby Cunningham...due July 22 but this G'ma thinks Beth won't go that long, which may be another good reason to stay back home. I am so excited to meet our newest little one. What fun!
I thank God for all of you all of the time, what wonderful, caring friends and family I have.
Grace and Peace,
Peggy
Sunday, June 23, 2013
Thursday, June 6, 2013
June's Update
Well friends and family.....I'm still here! There has not been a remarkable progress, just pretty slow and steady. My bilirubin is down to 4.2 but I am still itching terribly. I am interested to see at what point the itching goes away. Just to remind you and myself, normal is 0.2-1.2. At it's highest it was 7.4, so it is going down. The Dr. has started to wean me off the steroids so hopefully it won't shoot back up. If you want to pray for specifics please pray for this itching to cease! Liver enzymes have not diminished greatly, evidently this entire process can take quite a bit of time.
I saw Dr. Kitco last week, she is a GVHD specialist and she diagnosed me with acute, late onset graft vs. host disease as opposed to chronic gvhd. She recommended 3 treatments a week with ECP. So I spend Mondays, Tuesdays and Fridays in Ann Arbor. Each treatment takes about 2-2 1/2 hrs. I have been doing three treatment a week for the past three weeks now. I go again tomorrow for labs followed by ECP. My good friend Lynette is going with me so Den can catch up on some much needed work. Needless to say this has really cut into his time, so thanks in advance Lynette for giving him some time off from me!
Dr. Kitco said I would notice being more tired as I go off the steroids. Their main function is to stem the growth of donor cells and let my liver heal. They also give me energy. I keep thinking it's all in my head but I did take 3 short naps today. I felt so fatigued and just had to give into it. Maybe it is the power of suggestion but I'll give it a few more days to see how my energy level goes.
Last night our small group from Mars had a cooking extravaganza. They must have sent home 20 meals with us! Everything from enchiladas to coq au vin! Feeling the way I do it is such a blessing from such loving and supportive friends. Thanks to each of you for helping us out! It will be so nice tomorrow night after a day in Ann Arbor to just pop something into the oven. I can(and do) cook but when I hit the rough patches it will be nice to have something prepared.
I have so much to be thankful for. I can enjoy my family. Luci took her afternoon nap here so we had time together. I have been able to enjoy Liam's, Thijs', Emma's, Ella's and Grey's soccer games. We were able to attend Annie's Spring Concert. But I must admit this itching has been intense and I will be SO glad when it subsides!
That's all I have...it's a slow process as I said...patience and more patience is needed. It is possible for me to develop GVHD in other areas such as skin, gut etc. and I am far from that! Every time I go to U of M I see people with walkers and wheelchairs because of their complications with GVHD. Maybe it's a good thing I go so often because it makes me appreciate what I have. I am sure many would be glad to trade places with me. It has been a full year since my initial diagnosis and I so want my energy and life back. We were warned this would take time and they were certainly right.
One of these days I am going to write a blog post and not even talk about my health! I am trying to keep some balance to my life and not to overly dwell on something I cannot control. Perhaps I will just do a family update!
Thanks for listening and for caring...prayers for resolution of itching and ENERGY!!!
Love to All.......Grace and Peace,
Peggy
I saw Dr. Kitco last week, she is a GVHD specialist and she diagnosed me with acute, late onset graft vs. host disease as opposed to chronic gvhd. She recommended 3 treatments a week with ECP. So I spend Mondays, Tuesdays and Fridays in Ann Arbor. Each treatment takes about 2-2 1/2 hrs. I have been doing three treatment a week for the past three weeks now. I go again tomorrow for labs followed by ECP. My good friend Lynette is going with me so Den can catch up on some much needed work. Needless to say this has really cut into his time, so thanks in advance Lynette for giving him some time off from me!
Dr. Kitco said I would notice being more tired as I go off the steroids. Their main function is to stem the growth of donor cells and let my liver heal. They also give me energy. I keep thinking it's all in my head but I did take 3 short naps today. I felt so fatigued and just had to give into it. Maybe it is the power of suggestion but I'll give it a few more days to see how my energy level goes.
Last night our small group from Mars had a cooking extravaganza. They must have sent home 20 meals with us! Everything from enchiladas to coq au vin! Feeling the way I do it is such a blessing from such loving and supportive friends. Thanks to each of you for helping us out! It will be so nice tomorrow night after a day in Ann Arbor to just pop something into the oven. I can(and do) cook but when I hit the rough patches it will be nice to have something prepared.
I have so much to be thankful for. I can enjoy my family. Luci took her afternoon nap here so we had time together. I have been able to enjoy Liam's, Thijs', Emma's, Ella's and Grey's soccer games. We were able to attend Annie's Spring Concert. But I must admit this itching has been intense and I will be SO glad when it subsides!
That's all I have...it's a slow process as I said...patience and more patience is needed. It is possible for me to develop GVHD in other areas such as skin, gut etc. and I am far from that! Every time I go to U of M I see people with walkers and wheelchairs because of their complications with GVHD. Maybe it's a good thing I go so often because it makes me appreciate what I have. I am sure many would be glad to trade places with me. It has been a full year since my initial diagnosis and I so want my energy and life back. We were warned this would take time and they were certainly right.
One of these days I am going to write a blog post and not even talk about my health! I am trying to keep some balance to my life and not to overly dwell on something I cannot control. Perhaps I will just do a family update!
Thanks for listening and for caring...prayers for resolution of itching and ENERGY!!!
Love to All.......Grace and Peace,
Peggy
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