Thursday, January 22, 2009

Recovery update

Yes, dear blogites, I'm still alive!

Everyone at Mayo told me to be ready for recovery to be a long process, and that it would be hard at times- they were right! I was in the hospital from Tuesday Jan. 6 thru Monday Jan. 12. The first couple days post-op were OK (I had alot of good drugs). But the rest of the time was rough. The medications I am on to suppress my immune system tend to wreck havoc on the digestive system. I was really sick most of the time I was in the hospital, and I had really bad nausea. This was no fun after an abdominal surgery... getting sick was very painful. They were giving me phenergran thru my I.V. which helped the nauseau, but it also knocked me out. The pain meds were also making me really sick. It was no fun.

The nauseau continued the first few days after I got home as well. When I saw the doctors again, I begged them to give me something- the wrote me a script, but they also told me they thought they knew why I had been so sick. One of the anti-rejection meds I will take for life is Prograf. The ideal level on Prograf in my blood is 7-11. My prograf levels were at 27, which they said was near toxic. I didn't feel like as much of a wimp! So, they told me to skip two doses, and then backed my dosage level way off. The next bloodwork a couple days later showed my Prograf at 16, and then a couple days later 13. I got a call today that my Wednesday bloodwork showed it at 3.5, which is too low. So, they increased my dose a little bit, and we will see what next week brings.
My liver counts were elevated on Monday's bloodwork, which concerned the doctors a little. But they also said that my body is still at the tail-end of detoxing from the Prograf. When Mayo called me today they said the Wednesday labs showed that they were coming back down, which is very good.


My creatanine levels have been steadily decreasing. Creatanine levels are a good basic indicator of kidney function- the lower the better. Before my surgery, mine was usually between 2.7-2.9. Within a couple days of surgery, mine was down to 1.7! I got as low as 1.4 before I was discharged. It was back up a little last week, but they think that was due to the mess with the Prograf. The bloodwork from Wednesday showed me at 1.4, which is actually in the 'normal' range.

I received only one unit of blood during surgery. About 4 days after the surgery my blood counts were fairly low again, so they gave me another transfusion of about 2.5 units. Why 2.5..? When they started the first unit, the nurse hooked everything up and left. A little while later I looked over at my IV pump and noticed something dripping off the bottom. The bag hadn't been hooked up properly to the tube and was leaking on the floor... it was really gross!! I had gotten almost halfway through the unit, but at this point I had developed a fever. This is a common side effect of Thymoglobulin, a strong immunosuppressant I had received 3 dosages of via IV in previous days. But, it can also be an indication of a reaction to the blood I was being given. So they had to stop the transfusion and wait for the fever to lift. They started me again the next day and I received two units. My hemoglobin and blood counts have been normal since I was discharged, which means I am no longer anemic!


I am scheduled to have a routine post-transplant biopsy of my new kidney on Feb. 2. This will be an out-patient procedure, and I will only have to be at the hospital for about 4-6 hours after the procedure for observation.

So, thus far the new kidney is working great. Mayo is still advising me to avoid public places as much as possible, because right now I am highly immunosuppressed. If I venture out, I have to wear a mask and not touch anything.
The next month or two will be spent adjusting my medication dosages. Right now, I am taking around 12 different meds a day, but this is the time when my medication levels will be the highest. Over the next year they will slowly decrease me off of many of them. I have been taking only Tylenol for the pain since Friday January 16. No narcotics! I still feel sore & tired from the surgery itself, but I already can feel the difference. I just feel better in general. Rick says my color looks so much better too. There are some weird side affects I am dealing with- some of the immunosuppressants cause sleep problems and I am having trouble falling asleep. I am also hallucinating while I am trying to fall asleep! But I am feeling a little better every day. I am getting around the house by myself now, and there's only a few things I can't do by myself- lift anything over 5 lbs, bend over if I drop something, and sleep on my right side. I might possibly be able to drive in the next 2-3 weeks, but that's not a definate.

I would also like to say that my husband has officially beat out everyone I know for Husband of the Year!!! He has been my tireless caregiver, and my fearless defender. I haven't had to stress or worry about anything. He has held me up (sometimes quite literally!) and I love him so much.

My parents & in-laws have been a huge help to us! They have been helping to transport & care for me, and also have been cooking meals and helping Rick keep the house clean. We are very lucky to have them!

My cousin Brenda is doing really well. She had alot of pain & nausea the first few days post-op; she has had a couple previous abdominal surgeries and she had alot of scar tissue they had to deattach. But she was discharged on Friday Jan. 9, and was able to fly back to Colorado on Friday January 16. I miss her very much and Rick and I are hoping to be able to make a trip out to Colorado to visiter her & her family in the next year or so.

Thank you so much for all the cards, letters, calls, care packages, and well-wishes. I hope to see you all again soon; take care & God bless!

1 comment:

Angelle said...

So happy to read this post! Congrats on your shining future!

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Rick & Erin at the Biltmore House, Christmas '09