PTD 448 Thursday November 20,2008 November 20, 2008
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PTD 435 Friday 11/7/08 IVIG Infusion November 7, 2008
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Hi all,
I’m headed to Duke to get my infusion of IVIG. My PA called Wednesday and said my IGG level was low again. I asked why and she said it was probably due to the GVHD. The GVHD has been more aggravating the past 2 months than usual. I’ve been sleeping better the last several nights. Must be the time change or the low hemoglobin.
A beautiful sunny day again today. Temperature is supposed to get near 80. The leaves here are still pretty.
I’ll update the weekend about the infusion. Hope you all have a great weekend.
PTD 431 11/3/08 Monday November 5, 2008
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Hi,
I hope you all had a great Halloween. I was already for some trick or treaters, but didn’t get any.
I hope you all took advantage of your priviledge to vote. It will be interesting to see if anything “changes”.
I had my monthly appointments at Duke on Monday. We are going to try and switch over from the lovenox shots to coumadin. I’m still waiting for the PA to call me with the schedule for the shots and pills and when to go for blood tests.
My blood work looks okay. My hemoglobin dropped from last month 9.3 to 8.5. Not sure why. Albumin was low..need to eat more protein. At my appointment next month, they will do a bone marrow biopsy.
My PA called me tonight and said my immunoglobulin level was low again. I have to go to the clinic this Friday for the IVIG infusion.
We had about 1.5″ of rain over the past few days.
Will update when I have news. Take care.
PTD 424 Monday October 27,2008 October 27, 2008
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Hi all! It has been awhile since I’ve last written. That only means I’ve been busy. Trying to get ready for a state inspection of the lab in early December. Pressure is on to finish the manuals and start corrections of the ones I have already written.
I worked Friday, the weekend and today. The weekends we do 12 hour shifts now and no call backs. Tomorrow I have off and it is my birthday, so will take myself out for lunch!
The GVHS has been bothering me quite a bit. The dry mouth, lips and cracked fingers are some of the old symptoms. I have had trouble sleeping again, no appetite (I weighed 128 this am dressed), and have a rash on my face that at times feels like sunburn…I can go on, but what’s the use? I am very greatful for the success of my transplant. I just feel guilty complaining when other people are having many more and serious problems.
The leaves are changing and it is so pretty. It has been cool here and have had a frost already.
Oh, I traded in my old 1999 ranger Ford truck for a 2004 Chevy Colorada crew cab truck. Very nice.
I go to Duke Nov 3rd, so will update again then. Have a safe and Happy Halloween!!
October 14, 2008 PTD 411 Tuesday October 14, 2008
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Hi,
Just wanted to pop in and say hi. I’ve been real busy at work. I’m now on a 6 day run. Next week I have 3 days off. Yeah me!! One of those days they are supposed to come and clean the furnance and check it out. It seems to be running ok, but I didn’t get it serviced last year.
I got stain today for the back porch. I hope to get that stained next week.
It was beautiful here today, 87 degrees. It is to cloud up Friday and rain.
I love this time of year, but it makes me sad too. My aunts birthday was 11/2 and she passed away in October 2006. My parents anniversary was also this month. I also enjoyed the months of Sept. and Oct. helping my brother in the apple orchard. Mother would come along too. It was up on a big hill…beautiful scenery.
Healthwise I’m doing okay. Starting to feel cold again. My left eye has been blurry and has been red in the corner closest to the nose. Stiil having trouble sleeping. I may need a haircut soon. Not that is real long, but it is so fine now it kind of goes where it wants. My stomach is getting pretty sore and brusied from the lovenox shots.
Hope you all are having a good week. Take care and be safe.
PTD 403 October 6,2008 Monday October 8, 2008
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Hi,
Nothing really exciting to report. I am still on the lovenox shots and will be on some sort of an anticoagulant the rest of my life. The pet/ct scan didn’t show them anything about the clot, because I didn’t have the iv contrast. I asked about doing an ultrasound to check clot, and coag people don’t think it is necessary. If the clot is smaller or bigger, they would keep me on the shots anyway. I go back to see them in a month. The lmw pt is fine, in the range they want.
I have been extremely cold and tired this week. Took a hot bath last night and was in bed by 7pm. Still tired today.
No other news here that I know of. Take care and have a good week.
PTD 399 Thursday 10/2/08 October 3, 2008
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Hi,
I had my pet/ct scan today and saw my transplant doctor. Pet scan I drank the liquid barium drink instead of doing the prednisone prep. The doctor is still weaning me off the prednisone…I thought maybe I’d come off it all together or take it every other day…no such luck.
The pet scan was preliminary negative for lymphoma. My blood work was all normal and the low weight heparin value in the range they want it to be in. No chest xray this month.
I return in a month to see doctor again. They will do the testing for percentage of my cells vs donors. Hope it is still 98% donors or more and not mine.
Monday I see the coag doctor. Maybe they will take me off the injections and put me back on the pills. One can only hope.
The doctor increased my acyclovir level from 400mg to 800mgs daily. I told him about the rash I had on my face and a couple bumps on forhead and he thought maybe I had a small outbreak of the shingles, and the meds I was already taking were just enough to keep it a very mild case. Anyway, that’s why I have the increase in acyclovir.
I asked him about the flu shot..and he said no. Just make sure everyone I was around had gotten one. Right…like I have any say over what other people do. I stay out of crowds as much as possible and away from people at work if I can.
Weight was down to 132lbs and he said don’t lose any more…like I was trying. Holidays will be coming up soon and I’ll be eating more then. Sweets and ice cream, cakes just don’t appeal to me right now. I eat alot of bananas and apples and veggies. Not too big on meat, but I do have some nice center cut porkchops that I will do on the grill this weekend.
The lawn needs mowing..it has been 3 weeks. It is supposed to be a nice weekend. It has been getting down in the mid 40’s at night and warming up to mid 70’s during the day.
Leaves really haven’t started to turn yet here, but out west towards Asheville they have. Have a great weekend and I’ll update after my appointment Monday.
PTD 391 Wednesday 9/24/08 September 24, 2008
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Sorry it has been so long since I have updated. Things pretty much the same here. I’ve been ok, but have had a few bad days recently. Every time I have that IVIG it seems to make me feel bad for a couple weeks. I haven’t had much of an appetite and have been having trouble sleeping again.
My finger tips are cracked again and I’ve been having the pain in the ribs and back area, but on the right side. I’m really getting tired of the 2 shots every day also. Hopefully next month they will take me off some of the meds and the shots.
We have been very busy at work. I’ve been working some extra hours. We will be starting our new hours on 9/30.
Will update again after the next doctors appointments.
PTD 376 Tuesday September 9.2008 September 10, 2008
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Hi all,
Just a short update. I received the IVIG infusion today. No problems. The benadryl they give me always makes me tired. Slept most of the time it was infusing. Nice and quiet in the clinic. Didn’t see the doctor or PA, probably because I switched the appointment time from 2pm to 10am.
We had thunderstorms last night, but no real accumulation of rain. It has been raining on and off all day today…damp and nasty.
Things going pretty well. The call weekend wasn’t bad at all.
I feel I have really proved something to myself between the drive back and forth to NY and taking call again at the lab. I really was beginning to think I would never do either again.
My memory and stamina have made great strides the past several months. I am so pleased…waited a long time for it to begin to all come together.
Take care and be safe.
Sunday PTD 374 9/7/08 September 7, 2008
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Hi all,
Well, we have been having the excitement of all those hurricaines and tropical storms brewing up off the coast. Hannah dumped alot of rain, 3″ and gusty winds. No damage here. More to come with the season just beginning.
I had a great trip back to NYS. I was able to drive it all in one day. Left NC at 0630 and arrived at my aunt and uncles’ abit before 2200. Saw relatives and friends. Just wasn’t time enough to do everything I wanted. The weather was great, cool at night and upper 70’s days. I enjoyed the yellow and silver queen corn from my uncle’s garden…and lots of cukes and tomatoes and lettuce.
I returned to Duke on the 3rd…a full year post transplant (plus a couple days) and got a good checkup. They have decreased the prednisone again..(YEAH!!!), down to 5mg daily. Blood work is good, except the IGG is low again, so I have to go Tuesday this week for the IVIG infusion. Still on the lovenox and have a PET scan scheduled the first week in October. That will tell them about the clot in the liver. If things are stabilized and clot is no bigger and/or it has shrunk, they would like to take me off the shots and go back on coumadin. I would like that also.
I took call at work for the first time this weekend in over a year. I still can’t work micro or draw patients, but it felt good to be back. I still am not working fulltime.
The doctor said that as soon as they get me off the prednisone all together, they will start some vaccinations and start taking me off some of the drugs…like the cellcept that is used to prevent rejection of the transplant.
Hepatitis, tetanus and flu shot will be the first ones I get. NO chicken pox vaccine…I don’t want to get shingles now!! 
It still is pretty hot down here yet. 90 today. I will look forward to some cooler weather this fall. I went to NY too early, the trees hadn’t started to turn yet.
Will write again after Tuesday to let you know how the infusion went. Have a great week!