My blog is finally working

Welcome back, everyone. I have been unable to get on my blog and I know many people have been having problems viewing this. Kara diagnosed the problem, the background on my blog was keeping the site from loading. I hope it's OK for everyone now. A quick update...I had my surgery on June 11th. Everything went well. Basically the esophagus is not working and the valve that should be at the bottom of the esophagus is worn away. This is due to the scleroderma, and helps to explain my difficulty eating and digestive problems. The surgery on my finger went well. I went to get the stitches out this morning. The Dr. said everything looked good and I started on my hand therapy this morning. My worst problems at this time are shortness of breath and pain. I go back to the nephrologist tomorrow. My magnesium & potassium levels were drawn on Monday and they look good. Hopefully, I can decrease or discontinue the supplements. As always, I thank everyone for the continued prayers & good wishes. I appreciate them so much, Linda

Memorial Day Weekend

Just a quick update. I am having surgery on my finger in June. Those lesions from the scleroderma are eroding through the skin, hurting like crazy, and look really bad. At the same time, I will be having an EGD on my esophagus. I've been having a lot of digestive problems, again from the scleroderma. So, hopefully, I'll get some relief from these major annoyances. I have been taking short walks up & down the street with Alan. It feels great to have the strength to walk. I also went to picnics over the weekend & my energy & endurance was greatly improved. Hope everyone enjoyed a safe & healthy weekend. Linda

Hi Everyone. We have been having a lot of trouble with this blog. Kara is working on it. If you were able to pick up the comments on the last blog, you saw the MRI was OK on my back. Yay! I am preparing for surgery on my finger with Dr. Schwendeman, and an EGD with Dr. Marina. I'm hoping they can coordinate things and I'll just get one anesthetic, etc. Have a good day. Keep cool, Linda

Hi Everyone. I think it's time for an update. I have been going to physical therapy and I do think it's helping. My legs are much stronger, I can walk further distances and I don't feel as weak. I had the second 2-D echo of my heart and it still showed a small amount of fluid around the heart. The cardiologist said he didn't feel it was causing any symptoms or compressing the heart. He said it would be too risky to put a needle into the sternum and try to withdraw the fluid because it could lacerate the ventricle. He also said they could do a pericardial window in surgery, but I said NO WAY! That's not going to happen-sometimes you just have to say no! I also have been having a lot of pain in my back so I had a bone scan on Tuesday. After I got injected with the radioisotope, I had to drink water for two hours prior to the actual scan. I went to surgery and got to see everyone while I waited. It was really great to see everyone. The scan took about an hour and the Dr. called and said there were two spots on the thoracic spine that they want to double check. He thinks it is degenerative arthritic changes. Now, I have to have an MRI. Then, I'll be in limbo once again just waiting for results. That is very difficult. Hope this gets everyone up to date. Thank you for the prayers-you are all very special people. Linda

I've had 2 sessions of physical therapy. They were spent mainly concentrating on proper breathing techniques and some very gentle strengthening exercises. Basically, I wasn't using my left side of my chest to breathe. It is so sore, I was favoring it so much and also developing a bit of a frozen shoulder. We are working on range of motion for the left arm. My therapist said I was breathing much better than I was on Tuesday. I am practicing breathing from the diaphragm and utilizing all of my lung tissue available. I thank everyone, once again, for the beautiful cards and prayers that just keep coming. It means so much to me. Carole, thank you for the gift card. Happy Mother's Day! Linda

Hi everyone. I haven't written anything because I have been so miserable. I have a repeat 2-D echo on Tuesday. Dr. Scavina said minimal fluid is around my heart and we have to recheck that. I also start physical therapy on Tuesday for strengthening and trying to build my body back up. I am extremely weak, very deconditioned. I'm on some new medication that is really rough. Nausea, headaches, fatigue. Hopefully, it gets better and also helps to stimulate my appetite. The weight loss continues. I was always wanting to lose weight, but this is getting to be ridiculous. I never thought it would be so hard to just walk around the house. I am just exhausted after doing so. Have a good weekend, Linda

Update from Kara

Hi everyone! I know it's been a while since my mom has posted. I just thought I'd let everyone know what has been going on: ... absolutely nothing. :) Mom has been taking it very easy. She hasn't posted because there really hasn't been any change or anything new to report. We are currently working on reconditioning her body. Her cardiologist told her that although there is no damage to her heart muscle, that it is as if she has been in a serious car accident which caused severe trauma - and she will have to rebuild her strength. She has to re-train her muscles to utilize oxygen more efficiently so that her heart does not have to do all the work. He mentioned cardio-pulmonary rehab, which I think would be a good idea. In the meantime, she is trying to move more - walking laps around the house, etc. Thank you to Karen C. for continuing to come over and draw blood -- we are thinking of you and praying that all goes well at your next appointment.

The cardiologist called me the other night and said the 2-D echo looked basically normal, he wants to recheck one thing in about 3 weeks. The Holter Monitor looked okay. There is still no explanation for the racing pulse and shortness of breath. I am incredibly weak and trying to walk around the house to gain some strength. They can't seem to find a reason for these problems. I have been wearing a Lidocaine pain patch over my rib fracture sites, but I question if that is really helping. I had really hoped to be feeling much better at this point in time, but trying to remain patient. Linda

Thursday

Well, the day of rest from Dr's. didn't quite happen. I got deathly ill from the CT prep and was violently ill all Monday night. I ended up at chemo Tuesday morning and got my usual...4 hours of fluids, steroids, anti-nausea drugs. I did feel better after that. Wednesday, I went to cardiologist. He is trying to figure out what is making my heart race so crazily. One theory is the chemo may have damaged the heart muscle. I hope that is not the case. I had a 2-D echocardiogram yesterday and they put on a Holter Monitor for 24 hours. I am going up to NSH to have it removed this a.m. Now, I have to wait to hear from the Dr. Let's hope the heart looks good. I might be running out of things to go wrong! Linda

Monday

I spent the day at NSH today. I went in at 8:00 a.m. because the nephrologist wanted me to have 5 hours of IV fluids prior to the CT scan. I just had a scan with dye last Wednesday & we're trying to keep the kidneys protected. After two unsuccessful attempts at starting my IV, I told the nurses not to try anymore. I called surgery & they sent one of the nurse anesthetists to start the IV. First try-no problem. So, I got my fluids and then had to start drinking Gastrografin (contrast medium for the scan.) I was supposed to drink 6 glasses between 12:00 and 2:00. If you have followed this blog, you know how difficult & disgusting that is for me. I took a Zofran & did what I had to do. Ugh! Anyway, The scan was very quick, I was then allowed to go home. We left the hospital about 3:00. A very long day for a 5 minute CT scan. Tomorrow-no doctors! Wednesday, I have to see a cardiologist for this racing pulse I have and I go to see the lung surgeon's partner. Hope everyone had a lovely Easter. Linda