Good morning - UCLA visit went fairly well yesterday. Creatinine is at 1.2 (yeah!!) and my hemogloblin is at 10.2 (going up!) ... my Prograf levels are low yet again with the 1.5 mg 2 x's a day so now I have to try 1.5 in the am and 2 in the pm to see if that works ... so yet again I go back in one week. My phorphorus is normal again so I am to stop taking those pills - which from my past experience I'll be low again next week and have to start again. If that happens I will propose a 1/2 dose and see if that works. In the meanwhile I'll attempt to incoroporate dairy into my diet more - it's not appealing to me because one of the meds upsets my stomach (cellcept and I take 4 pills in the am and 4 in the pm) ... but it's tolerable. Ah .. and my incisions are healed so I got clearance to swim ... I went in my pool yesterday for about 15 minutes - I didnt' really "swim" but I floated around it felt great :-) ... Have a great day!
Hello! UCLA trip yesterday was good .. creatinine is still at 1.3... they yet again adjusted my Prograf (anti rejection) rather then taking 2 mg in the morning and 1mg at night I'll be taking 1.5 in the am and 1.5 at night - in order to balance things out .. I've been going back and forth on this (too high, too low, too high) and I explained this to the doctor yesterday so he said to try this. Also my phorphorus was low again but rather then taking 6 a day I decided to take 4 and now OK. We'll see how these things go. Other then that I finished a four a day dose and now I am down to taking pills only twice a day .... not so bad ... I would imagine soon I can stop monitoring weight, blood pressure, temp several times a day too ... I do these logs daily but the last three times the doctors do not review them ... maybe I am to keep them for my own awareness ... anyway .. my hemoglobin only went from 9.1 to 9.5 since the first Procrit shot 11 days ago ... It does take time to build back up red blood cells.. the goal is to get to 11 at least. Well that is the news for today ... oh and also I am able to drive myself on short errans around town. Nice huh?
Can you belive in two days it will be a month post-surgery -- YEA one milestone. The next is three months then one year. The pain is less and less - it still hurts to bend and strech that area but it's not so bad .. the scar is almost gone ... no more tanning for me ... once your on immunosupressants you have a 20+% greater chance of getting skin cancer so I've been using more daily sunscreen. The good news today is that I got the "OK" from a UCLA doc to take my previously prescribed EPO brand of shots (Aranesp) which I have at home and I know my body responds well to these - I dont think I got a strong enough dose at UCLA last Friday - I am still exhausted .. I took 3 naps today .. and I'm ready for bed again .. this is crazy .. however I had my shot tonight so in a few days I should start feeling a little better and in two weeks watch out :-) ..... I have been too tired to work out or walk which is not good as that is important for recovery ...soon enough I'll be back at it again. Thanks to those of you who have sent over dinners - those have been a great treat!! And thanks for the emails and calls - I've been terribly bored due to being too tired to do anything ... the company has been nice :-) ...
Good morning - are you guys still reading this? Let me know if it's getting boring or if you've had enough and I will stop updating :-) ..... the stent removal was easy yesterday - mild (very mild) discomfort .... my creatinine is 1.2... kidney working great ... I have been off of phorphorus for since Friday and it's low again I am waiting for the call to start taking it again .. they have me take 8m pills a day .. then zero pills.. then 8 .. I am going to see if perhaps I should take hmm... 4 a day? Same with my Prograf .. I take 2 in the AM and 2 in the PM .. then it gets too high and I take 2 in the AM and 1 in the PM then it gets too low and we start over again. I am adjusting to the medications however - the side effects are hardly noticable now. I am almost finished with one liquid I take 4 times daily ... all in all things are great ... my only frustration now is this anemia .. I am way too tired to do anything ... my hemogloblin was 9.1 on Friday and yesterday it was 9.5. I had a Procrit (EPO) shot on Friday so it's working .. It takes a long time to build back up red blood cells... I go back to UCLA on Tueday however I called them to see if I need another shot before then - normally it's once a week. I drove myself to the Emergency Room last Saturday night - no problem driving no pain - just too tired to really be on the road... but my grandson had an accident and had two fractures in his face :-( poor baby ... he may have had to have surgery to put a place in because the bone that holds the eye was fractured but he saw the surgeon yesterday and it's a stable fracture ..l and does not go up that far to the eye ... he will heal on his own and his normal breathing will ensure the bones stay in place .. I am so glad... it was horrible seeing him in pain. :-( ....