Saturday

Well, I finally made it out of the hospital after being there for over a month. It was a long haul but I was so sick, it wasn't terrible being there. Thank heavens for my family & friends who took good care of me. I'm home with a feeding tube which I receive feedings continuously 24 hours a day. I'm hooked up to pump that delivers 30 cc's (one ounce) an hour. Then I try to eat what I can since the tube feeding is just supposed to be a supplement. It is a highly nutritional calorie and protein packed liquid. I have other news as well which I will post soon. Love, Linda

Latest News

Hello, everyone. I wanted to give everyone an update on my mom. She has been in the hospital for 2 weeks now. She has been having lots of trouble eating for the past year, and it has gotten much worse lately. She's lost so much weight and just cannot seem to gain anything back. Since she's been in the hospital, she has been on a constant intravenous regimen of Ativan (for nausea) and morphine (for pain.) She was doing well for a few days and actually gained weight, but then was sick and couldn't eat again after that. So, yesterday they finally inserted a nasogastric feeding tube. The plan is to wait a few days to gauge it's effectiveness and see how well she tolerates it, before discussing a more permanent tube which would be inserted through the abdomen. In addition, she will need to transition from IV meds to oral meds which can be maintained at home, before she can be released from the hospital. I will keep you all updated. As always, thank you so much to all of our wonderful family and friends for your prayers and good wishes.
xoxoxo,
Kara

Saturday, December 18, 2010

Tonight as I was sitting in the living room with Alan, Kara, Donny, & the girls, I heard some beautiful voices outside. We opened the front door and my friends from Northside surgery and X-ray were on the porch singing Christmas carols. What a beautiful surprise. To all of you who took time out of your very busy days, I appreciate it more than you'll ever know. You sounded like absolute angels and it was so lovely to see everyone. Evidently, Kara, Donny & Alan were all in on the surprise and they kept it remarkably well. I have never been serenaded before and it was a delightful experience. I am going to be trying a medication that helps tighten the stomach & intestine and will hopefully help to empty it better. Then I won't have such a feeling of fullness and maybe can eat. I NEED to gain weight! Also, I'll probably be looking at more pain blocks. Hope it all helps. Shawn, Jen, & Cooper coming home next week. I can't wait. I continue to pray for each & everyone of you. Have a beautiful holiday. Linda

Saturday, December 11, 2010

I'm back and it seems like I haven't written forever. I had not been feeling well for a long time. I have a lot of pain, nausea, etc. all of the time. Well, last Friday, everything got out of hand. I had been up all night vomiting & becoming increasingly weak so we went to Emergency. The usual dehydration, needing fluids, needing potassium, trying to stop the vomiting was going on. After 11 hours in ER, I was finally admitted to a floor. I had begged for a private room, but since I had to be monitored, there were no private rooms. My roommate was quite ill and required constant, constant care. However, she seemed to be quite hungry. She wasn't allowed to eat after midnight, so she sent her significant other out to KFC and they ate until about 11:30 p.m. The worst part of that was the fact that I was so nauseated and all I could smell all night were the remains of the KFC. The alarm on her IV pump went off continuously, but she could not hear it. So, everytime her alarm or mine went off, I had to call the nurse. They also gave her several units of blood throughout the evening which added to the confusion. At 1:00 a.m., they decided to put a catheter in her, so all the overhead lights went on. At 2:23 a.m., the nurses aide came in to give her a bath to prepare her for an 8:00 a.m. surgery. I actually thought it was a joke, a bad joke. As, I held my head in my hands, sick as ever, they were having a nice discussion in bed B. Then we had vitals every time you turned around. I asked them to keep our door shut because of the noise in the hall. but that just wasn't happening. Each time they would bang in and out of the room, I would crawl out of bed, drag all my wires, my infusion pump, and get as close to the door as possible. I couldn't reach it, so I clung to the wall and kicked my leg backwards to shut the door, almost falling a few times. Then, the nurse would come in the room to see why my heart rate was so high. Then around 4:00 a.m., my nurse drew blood from the mediport only after the lab had come in and tried to draw it from an arm vein. More vital signs, staff coming in the room looking for equipment, etc. By the time Alan got back to the hospital before 7:00 a.m., I was ready to lose my mind. The Dr. came in and wanted a CT scan of the brain to try to figure out the nausea. It was relentless. I couldn't go down for the scan at first due to the nausea/vomiting. Finally, a little later that morning, after several IV meds, I made it downstairs. The scan came back negative, I got moved to another room, got a bit of sleep, and got some relief from the sickness. I went home Sunday afternoon. Thinks were OK until I woke up at 2:00 a.m. Wednesday morning with the same symptoms. Back to the ER where I spent the day getting fluids, potassium, pain meds, antibiotics, & anti-nausea meds. I went home that day and am trying to stay away from the hospital. Friday, I had my follow-up chest and abdomen CT scan and I had to drink a bottle of barium. I prayed it would stay down and not trigger the nausea again. I got through the test. Dr. Goldstein called me Friday night and said there was no indication of metastesis. Yay! He said lungs have a lot of fibrosis, they're taking a beating, but seem to be holding their own. That's related to the scleroderma. Still going to physical therapy for frozen left shoulder. I am trying to get up and walk around the house every hour to regain strength. I go to Pittsburgh Wednesday to see scleroderma Dr. This is quite lengthy, but I hope it updates everyone. Take care, Linda

Wednesday, November 17

Hi Everyone. Keeping busy with Dr. visits. I went to pain management where I received several trigger point injections in my back & side to try to alleviate some pain. Unfortunately, they gave me a very strong pill in the recovery room which made me sick for two days. I know they are trying to take away the pain, but I just can't tolerate the strong painkillers. Today, I went to the shoulder surgeon who injected my shoulder. I now have a frozen shoulder because the pain was restricting my activity. I will start physical therapy to try to regain some movement. They don't want to be very aggressive due to fracture risk from the osteoporosis. I'm going back to Pittsburgh in December to see the scleroderma specialist. They have created a scleroderma research center at UPMC, all of the latest info on scleroderma. I sure hope they have something out there that might help me. Carole, thank you for the gift card. I miss you & everyone in Surgery. Happy Thanksgiving, Linda

October 11, 2010

Everyone has been asking me to update the blog so I'll do my best. I went to the oncologist on Friday for a routine check-up. Everything seemed okay. I had blood work that was mostly normal and will just continue with follow-ups, scans, labs, etc. I will get my mediport flushed once a month to keep it patent. If all goes well and everything stays negative, I'll get the port out next April. I also went to another doctor today and he ordered all of the labs and a dexa scan to see if I am a candidate for Reclast. Since I am breaking bones by simply coughing, something needs to be done. I also have an ultrasound ordered for a questionable area in the abdomen, but I refuse to believe it could be anything. So basically, continuous tests and waiting for results. I'm still having LOTS of pain and losing weight. Anna, thank you for the cookies. They look delicious. We enjoyed visiting with Gary. We went to see Karlynn cheer tonight, but the game was called about 10 minutes after we got there because of the storm. Have a good evening, Linda

September 20, 2010

The surgery went well although I was quite sick for 24 hours. The pain seemed to have eased some and then I had some really bad coughing spells. I thought I might have broken something else because the pain got quite intense again. I had a x-ray at the Dr. today. He felt an MRI would be much more definitive, but I am not ready for another one of those right now. So, we are just watching the pain level for now. Janet & Carole, thank you for the gift cards. Jane, thank you for the mums-they're beautiful. I was wondering where they came from. Mo, as always,thanks for everything. Linda

September 8, 2010

I went to the Dr. yesterday and after having more X-rays and an exam, another fracture was discovered. This one is right above the other. The thoracic vertebrae at level 6 and 7 are fractured. I have significant osteoporosis from the events of the past year and at a big risk for broken bones. I will be having surgery at North Side Hospital tomorrow morning at 6:30. I'm still waiting for the nurses to call me with an arrival time but I am fearing it will be around 5:30 a.m. Dr. Pagano will be doing a kyphoplasty treating the two different fracture levels. Basically, they create a pathway into the bone with a hollow instrument, insert a balloon through this and inflate it to raise up the collapsed vertebra. Then the balloon is deflated, removed, and the cavity is filled with cement to support the bone and prevent further collapse. He'll do this on both sides of each fractured vertebra. I am really hoping this eases some of the pain I have been having. It's not fun having so much pain. I'll update after surgery.

September 1, 2010

The saga continues. I have been having an incredible amout of pain over the last two months and it was baffling to everyone. When I went to the pain management doctor, he ordered an MRI which I had done on Monday. He just called me this morning to tell me I have a compression fracture of thoracic 7 vertebrae. So now, I will be having surgery for that. The good news...no evidence of metastasis. The surgery should be minor if it's what I'm thinking. Of course, I still have to see the orthopedic spine surgeon. Linda

August 28, 2010

Time for an update. I have been having major pain for a long time so now I am seeing a pain mangement doctor. I saw him the day before we were going to Charlotte and he ordered some new & stronger medication. Unfortunately, I couldn't tolerate it and was nauseated the whole time I was on it. The drive to Charlotte was not pleasant as I was lying down sick in the back seat for eight hours. It was great seeeing Shawn, Jen, & Cooper, though. Anyway, I will be having an MRI on Monday and then make some decisions for pain injections based on the results. Maureen, thanks in advance for coming with us. I know Alan enjoys your moral support. Carole, thanks for the gift card. Your cards always make me laugh. I especially liked the amount of people you vacationed with...hilarious. Shawn, Jen & Cooper are coming home next weekend. Yay! I got to go to two of Karlynn's games and watch her cheer. She is just beautiful... and I am NOT biased :) So, this week is fairly quiet, some blood work, an MRI & a visit to the oncologist on Friday. Gregg, it was good to see you & Debbie. I hope your flight back to Texas was smooth. Stay cool down there. Happy Labor Day, Linda