Home again

HI sorry to not be as active on here. Sara I got your message, but the phone is dead and on charge right now. My potassium bottomed out yesterday after physical therapy while waiting to see my Dr. I was so low, I had to call an ambulance where I was admitted back into Morristown-Hamblem Hospital. My PCP ordered 2 bags of Potassium/Saline as I was down to 2.6 in the critical zone. I am still in the critical zone this afternoon when he discharged me. I'm at 3. right now. The Gleevec chemo is eating errostions in my new pouch, it's eatting up my potassium. What it's doing is causing me to gain weight in fluids around my heart, and in my legs. If I take a water pill, my kidneys work, the fluids in my legs and around my heart go away, but it makes my potassium to drop slowly, but I only take one on Saturdays. The rest of the week I don't. But my PCP says no water pills. Now I have two choices. Sit in the Cancer center for 4 hours every day hooked up to a potassium IV, which it 2 bags didn't bring it up over 8 hours each, how do they expect it to stay up going in just 4 hours. The next option is to go off the chemo pills, and go on regular chemo therapy, and my last choice is move into a nursing home so that I can be monitored. I am 52, and I refuse to move into a nursing home. But I don't know what other choice I have. My oncologist is out of town, and is totally booked up until I see her the end of May. So it looks like I will be spending a lot of time in the hospital. I fell tonight in the bathroom because I was dizzy and had no balance from the low potassium. Frankly, I am tired of it all. I'm about to say no to the Gleevec, and just wait until I can get this potassium back up to normal for a while. Then go from there. I don't have the answers, and I don't know who to talk with about this that is having to go thru the same thing. So it makes me feel all alone having to deal with all this. Thanks for listening. I love ya, and Sara, if I don't post, call the hospital, most likely that's where you'll find me. Kathy

Kathy, I am so sorry to hear that this is still going on.I am still waiting to hear from the DR.'s office. I called again today to make sure he faxed my letter, & will call again tom. I hope they can find a comfortable medium for you, one that is working on both front's. Please keep your faith, we need you on here to keep us straight. Please remember, I am here to listen if you need me. No, I haven't been there but I will do all I can to uplift you. You are IMPORTANT to us all. Sara.

thank you Sara, I'll talk with you this weekend. Off to for a 2 hour sleep before my day starts. Haven't been able to sleep much lately. Love ya, kathy

KAthy All I can say is ((HUGS )) sweetie You have some very rough choices to make . PLease call me when ever you need an ear !!! I have switched schedualses around so I am gone from 8 till about 10 in the mornings TWT now . I read the board more than post right now . Between the yard ,garden , house and this wonderful 20 page form for my phyc evel I Am keping pretty busy luckly I have a few weeks to finish the paperwork my vision onlt lets me do a little of the reading at a time . I am thinking and praying for you Hugs Laura

Kathy - if the chemo pills are causing problems with your pouch, I would suggest you stop taking them and convert to the IV chemo therapy. And it that is what keeps dropping your potassium, they can always add that to the IV at the same time to try and counteract the effects. You don't need to look at going to a nursing home yet, you are still young and mobile (at least more than you have been in a while) and should be able to, with a little help, stay in your home and get the treatment you need. Check with your insurance about home health care, I don't know what they cover but it's worth looking into. Your PCP, WLS surgeon, AND Oncologist need to get together and discuss your treatment options and get this figured out so you can have a better quality of life!! Keep praying for the Lord to bring the knowledge and skills to the doctors to be able to resolve these issues, and bring healing to you! Call me if you need anything. Toni

Hi Toni, before if I have home care coming out to check on me, then Medicare wouldn't pay for my physical therapy. But I was discharged yesterday from therapy. So now if I want to continue going there and working out, I can do that for $32 a month. I also have a Gazelle in my home that helps with the hips and thighs. When my potassium drops, I black out to much and too sick to my stomach. My dr.'s don't want me living a lone, so that is why they are suggesting that I move into a nursing community. I can have my own apartment, but there would be a Dr. on staff and nurses. If I don't feel up to fixing my meals, I can eat in the cafateria with the other residents that aren't bed ridden. My older son is checking into them in the Nashville area. It's something I need to consider. At this rate, I won't be able to travel and see my grandbabies. Thank you, need to go get some sleep. Pain pill is kicking in majorly. My port needs to be replaced, so the IV had to be put into my foot. Pain medication mixed with pheneragan really burns going to the IV down there. Love ya, Kathy 277.5/283/269/215 current/130 goal