UCLA trip was quick yet again thank goodness. The clinic opens at 7 on Tuesdays - good to know! Seems I am even more anemic now. It took a few hours on the phone today but I think I have the insurance and UCLA issue worked out - by end of week I should have someone here giving me an IV once a week for 3 weeks. The good news is that I think I will have a nurse come to my home rather then me driving to LA. Then once my iron levels get normal then we can see if this new kidney is making EPO (that is the hormone that stimulates bone marrow to make red blood cells) - if not I will take EPO shots; I took these for three or four years prior to my transplant. I suspect the new kidney is doing its job - I was low on iron and saturation prior to surgery. Other then the exhaustion I am great and so grateful to have this new kidney! Creatinine is 1.3 still and holding :-) ... I now only have to go to UCLA once a week. Next week will be twice because I have to get my stint out. When your new kidney is connected to the bladder they put a stint in until the stitches or connection heals. I will be glad to get that out - I get that done Tuesday and then go back Thursday for a follow up on that procedure. You get local pain numbing but I will take something prior regardless J I have been off pain medicine for over a week now and I like that better but the stint removal does not sound pleasant. The anti rejection meds are affecting my liver but they will watch it and perhaps reduce some again - not concerned about this. I saw a new doctor today (the main clinic guy) I really liked him - he was more through then the others. He saw my scar which is barely noticeable now and said “wow those surgeons, you got the Beverly Hills
UCLA was quick yesterday - we got back by 10:30! My creatinine is at 1.3 (normal still and ok as long as it stays there) - the reason i'm so tired is that my iron saturation is low. I am to get an IV of iron once a week for three weeks however i dont know when i can get that done - waiting until Monday to find out :-(
Hello - not much news to report .. I am adjusting to the anti rejection medicines ... I was getting small tremors in my hands from one of them but since it's been reduced those are gone. I have been walking 2 times a day ... one mile in the morning and about a 3/4 mile in the afternoon .. I know that sounds weak but it takes it out of me ... so i'll build up from here. The surgery pain is getting more tolerable... I can bend a little now which helps because I can load the dishwasher etc. I will ask to be approved to drive myself next week. I should be fine by then. I've been off of pain meds all week... minus an occasional tylenol. I am more tired then I feel I should be - I'm going to inquire about this tomorrow at UCLA.... the trip there is quite an ordeal it wears me out .. I thimk mostly because of how early I have to get up .. and then the wait gets a bit long.... I'm off for a walk... Yolanda
Good Morning. I am finally starting to feel better after the fever incident... this morning has been the best yet - plus my pills have been reduced by 7 a day ... yea! UCLA wanted to see me again on Thursday but I asked for Friday since I have a ride on Fridays ... and the doctor agreed based on being happy with my labs... so I get a 3 day break .. and I am only going now twice a week rather then three as long as the labs stay good :-) .. they want me walking 1/2 hour a day and I've only been able to do 20 minutes to date. Today I will do 1/2 hour plus some gentle yoga.... I got the "ok" for that yesterday :-) ... hey Andy ... no more RLS since my transplant :-)
Just got back from UCLA - my creatinine is 1.2 therefore no biopsy :-). Other then that my phorphorus is ok now so I can stop taking it.
Good morning. Not much to report today - the side effects of the medications are challanging. I have a few photos to upload which I should be able to do later today - wanna see the scar?
I should mention that my body has every intention on accepting this new kidney fully and completly. I am told that of the 300 transplants per year that UCLA does, 17% have rejection episodes and of that 17% only 2% lose their kidneys. So the odds are certianlly in my favor - plus all other factors considered I have a low risk for rejection.
Eating "normal" again is sure a struggle - I have not had milk in forever and I am supposed to be drinking it and other high phorphorus foods ; eating whole grain again instead of white bread, etc. I am doing exactly as I am told (including 2 tablespoons of canola oil a day) however my stomach is still making the adjustment :-) I am happy to report I lost 9 pounds - so Lyn I think I WIN
PS in a study where transplant patients consumed 2 tablespoons of canola oil per day - a very high percentage had no rejection
Just got back from UCLA .. I feel 90% better then the last two days. Fever broke last night and I'm almost back to "normal". My phorphourus is coming up - tho they still tell me I need more dairy. However my creatinine is going up. It's at 1.3 now. I have to go back Monday and check again .. if it does not come down the doctor wants me to get a biopsy Monday so they can determine the cause. It could be many things.. one of the anti-rejection drugs can do that or it could be rejection or it could be that the kidney "fell asleep" or it could be that in the hospital I was on an IV and constantly flushed so the .08 could have been a false expection. I honestly think it's the antibiotic and infection. The doc does not but I do. So we'll see Monday - I am praying for my creatine level to go down.
Yesterday was rough. I woke up with a fever and had my first UCLA clinis appt... I have to be at the lab by 6am...and then clinic at 8am ..inbetween take pills and eat ... I was miserable... there was a fire alarm and we had to evaculate down the stairs right when I was called in ... after that I got in and met with the doc -he adjusted my anti rejection drugs and prescribed an antibiotic for a bladder infection ... I took that when I got home and my fever went up to 104 ... I was sick all night ... by morning I was pretty much better.. I am very weak today but recovering. Tomorrow back to UCLA at 6am
We got home last night about 10pm. I had to get some IV's and wait for the doctor to take out the neck IV (it was stitched in) .. it felt fantasic to wash my hair... I have some photos I will post here when I am up for it. I was able to go home with ZERO steriods.. YEA! I am taking about 25 pills a day currently. Tomorrow I go back to UCLA for lab/clinic so get checked up. I'm exhausted and in pain but feel great.
Me again... well I am being released today but it won't be until late this afternoon. My phorphourus is super low so I have to get a dose via IV which will take a few hours. Still waiting for the pharmacy to deliver so we'll see :-(.... class was very informative this am... the biggest issue is my immune system is supressed to zero so I have restrictions and new habits to incoroporate into my life style .. can't be around crowds, sick people etc, caged birds and such .. my medcines are being cut again (YEA!) the steriods should be cut within a week or sooner so that is fablous news.. I have to weigh myself daily, take blood pressure 4 times a day and temp twice a day and log all this and i must walk daily - which i like to do anyway so that is not a bad thing.. it's the only excerise allowed for a while... I will not have to monitor blood sugar as I"ve been fine today YEA! no more finger pricks... my fingers are sore .. my first clinic visit will be Wednesday .. they start at 6am and end before noon.. I will have these clinics three times a week for two weeks then they will get less and less over 6 weeks... I will be able to drive myself in 3-4 weeks. I can't live over 10lbs for 6-8 weeks also. TIme to take vitals.. I'll see you all real soon!
Good morning! They took the drain out this morning (ouch) it was about 1 foot long inside .... glad it's gone I may be able to stand straight now. I am 99% sure I go home today .. I can't wait .. they dont let me get much sleep here.. get woken up A LOT.
I finished my evening walking and am waiting to get my evening medicines and vitals checked then I will sleep. I still have to get checked every four hours .. then get blood drawn at 5am and then the doc comes in a 6 and another at 7 and then the "team" makes their rounds and they all come in and stare at me (the students... just like Greys Anatomy) ... anyway I think I'd write and tell you a bit about the actual surgery. They took Mary in at 11:30 and me at 1:30 needless to say I was totally nervous going in .. I woke in the surgery recovery room.. my son and boyfriend had snuck in to find me so they could be there when I woke - like 2 angels standing over me they were a welcome sight.. i was still pretty out of it .. then I woke up again at 11pm in my normal room i was in a lot of pain .. and they gave me stong pain medicne that did not agree with me.. it was a rought night and i'll leave the details out but by the following afternoon I was allowed to drink water and the following day I was allowed clear foods (soup, jello etc) .. they had switched me to something called Dilotted which is an awesome drug. The surgeons took about 5 hours to do my surgery .. the extra hour was just to take their time sewing me up so I wouldn't have a bad scar.. NO STAPLES!! The surgeon said he wanted to leave my stomach pretty and he did a great job.. I currently have a 7 inch incision of just a single line that will shrink and heal quite nicely. On another note I spoke with Mary today and she is doing fablous.. she is feeling good and walking .. today she swept her back patio (lightly) .. she is expecting to go back to work in one month. She may have to go back with no heavy lifting restrictions. She said to thank everyone for their generous gift to her and her family - she said it was totally unexpected and will help greatly. Until next time.. Yolanda
Things keep getting better and better .. my creatinine is at .08 this morning .. can't ask for better then that .. kidney is working perfectly ... tomorrow i have a class on how to manage all the antirejection and side effects of the medications and then by tomorrow afternoon I should be heading home. My catheter was taken out today and the drain should come out tomorrow. If not they will send me home with it. One of my anti rejection drugs was cut in 1/2 today because I am doing so well which is great because that is the one (i think) that keeps raising my blood sugar .. I had to get two insulin shots today due to high blood sugar. I think I have to monitor blood sugar and manage these shots for few months after I get home .. I will know more tomorrow. How is everyone doing? I got a card from FO staff today .. THANK YOU!! It was nice to hear from you all.
Me again! I walked 20 minutes today pushing my IV stand around.. I held a mellow pace and couldn't stand all the way straight yet but the walk was awesome and my blood pressure dropped to 128/84 .. it was running a little high before. The predisone is making my blood sugar a little high so I've had to have a couple of insulin shots. I am hoping to be off the stuff in a few weeks. We'll see. It hurts to move and walk but the feeling of well being is far worth the pain. All for now.. Yolanda PS... I get to eat solid food tonight!! I've been on broth and jello to date. Whoohooo! :-)
Hello everyone! It's me.. Yolanda... just got my laptop here at the hospital and got online to say hello to everyone. Thank you SO much for all the good vibes you were all sending. The surgery was a sucess and my new kidney is working perfectly. My creatine got down to 1.2 yesterday morning ... which is just about normal.. I don't think my blood has been this clean in years.. I took three walks around the hospital floor yesterday and another one this morning. I am getting stronger everyday. I still have a drain tube, a catheter and an IV in my neck to drag around ... tomorrow the cathether should come out YEA!! .. I am scheduled for discharge training Monday from 10-12. If all keeps progressing as it has been I will be home Monday afternoon or evening. I have pain from the surgery and I can't stand all the way straight yet but the over all feeling of well being greatly outweighs any pain I feel now. I feel mentally, physically, emotionally and spiritually more healthy then I have in a very long time :-) I am so grateful to have this second chance to fully live~!! Write me back or post I am bored!! ~ Yolanda