Thursday, August 28, 2014

Frustrated

I don't know what to say. I didn't think this would be as hard as it has been. I stopped eating solid foods a few weeks ago and have had a very hard time getting back on the horse. The problem is a combination of nausea/vomiting, lack of taste/appetite, psychological.

I don't remember food being this difficult during transplants, but that could be distance painting a rosier picture than what was. To be totally honey, hydrating is a problem too. And these make for a bad pairing.

The last time I was at MDA, my creatinine was 1.6. Normal is between .6-1.o. I've always fallen below the low end of normal, which means healthy kidneys. My transplant doctor asked me to have more blood work done the following week. My creatine was slightly worse. Dr. B. suggested that I was dehydrated and suggested IV fluids. I acquiesced.

The following week I saw Dr. B. again and things were much the same. I confessed my inability to sufficiently eat or drink. He reassured me it was all normal and that things would be better by the second and third week. In the interim, he's prescribed a short course of steroids to help me with what's causing the nausea/vomiting.

I'm slowly trying to get back to solid foods. It's harder than you'd believe. Chris has been very patient with me. I know it's very difficult to see the person you love unable to do the things that you take for granted every day. I'm hoping to give a better report in a few weeks. Hopefully I can start eating normally before too long.

8 comments:

Joanne M. Firth said...

Sending love and strength. Thank you fo r the update.

LacubriousOne said...

I've been checking your blog for an update...so glad you posted today. I hope the steroids bring you some relief. Sending positive healing thoughts your way.

Mara said...

*hugs* and more *hugs* You've been through the ringer and have been doused in chemicals and radiation. Maybe try tiny sips of water and tiny bites of food once every half hour? If you need emergency gumbo, let me know. It's all uphill from here, the worst is over!

Ronni Gordon said...

Hey Anne,

I might have said this before so I'm sorry if I'm repeating myself, but maybe you could try these things. 1: Throwing a bunch of yummy fruit plus a slice of lemon and a tiny bit of water into a pot and cooking to make a delicious compote that is easier to eat than solid foods; 2: making a smoothie with vanilla ice cream and scoop of whey protein; 3: Adding some lemon to your water. Also my doctor prescribed what you could call medical marijuana, a pill form of THC to increase appetite. I 'm not sure it helped that much but it made me feel kind of silly which was fun. Maybe you could inquire about that. Also I agree with Mara: They told me to "graze" on tiny bits of food throughout the day. Hope you feel better soon!

Nancy said...

Geez Ann! I'm so sorry. I wish so badly that I could help you. I'm glad you gave in to the IV hydration. Can you get home IV hydration until your mouth and throat recover a bit? City of Hope gave me something for that during my transplant. They gave it a funny name "radio mix". If memory serves, it was lidocaine, benadryl, and Pepto Bismol. I tried to look it up to no avail. But found a similar product called Magic Mouthwash. It also numbs the mouth so you can get some relief from the mouth and throat sores. Food will still taste horrid but at least the pain will temporarily subside. Hang in there! xoxoxo

Marty Feigen said...

Sorry to hear the crap you have to go through...again. Just try to keep positive thoughts. You can get through this, you can drink water, you will get your appetite back. Chris' job is to do anything he can to make you smile during the day. And nag you to try again.

Betsy said...

Ann - I'm so sorry very you're having to continue the fight! You're such an amazing person and such an inspiration to everyone!!! Please update us when you can. Sending lots of love & prayers your way.....Betsy

Tiffany Thielke Lesmeister said...

Thinking of you chickadee and sending prayers and good vibes your way.