I think our Christmas miracle is almost over

Grandma Jo

First I want to wish all on this list a new year of hope, courage, and wisdom to make decisions that are so difficult at times.
I have not posted in quite a while as we have been enjoying what we called our daughters Christmas miracle. We had a wonderful time of visiting family and friends . My daughter even got out the old Christmas decorations and trimmed the house. We baked treats for everyone and just used this" place in time" filling every minute . I took out boxes of old photos I have been taking since the girls were babies and now the grand babies are in the photos. We recalled all the memories we could and made a few more this Christmas. We had wonderful nor-easters with snow every weekend to make it a Christmas card wonderland. In short we seized the moment and ran with it.Now the past week my daughter is having trouble with eating again. She has pain very severe for about an hour and then it subsides. She sleeps sitting up in a chair or pillows piled up on the bed. She has never been able to lie down and sleep. The reflux and acid is so hot and bubbles will foam up into her nose, some times it bleeds from the hot liquid. Does anyone else have these problems a year after surgery?We are going to an appointment in a few days to ask if there is something for the acid. She takes prescription Prevacid but it seems to not work anymore. She was wondering if it could be the side effects from Lovonox shots twice a day for over a year now. She always seems bloated and that is one of the side effects. Does anyone here take Lovonox daily and how do you feel ??? Today she started coughing badly after an acid attack. It woke her up from sleeping and continued for close to an hour. Now she is coughing as if she is congested. My thanks to all of you who posted, happy for us and helpful with your suggestions. You are my extended family and I do read every night and pray for all of you as I have since June 09 when she was diagnosed with this overwhelming challenge of her life.
I look forward to any replies that may bring us some new ideas Kind regards, Grandma Jo

Donna70

yes have the same problem with acid reflux
Hi,
It has been a year for me and I get bouts of acid reflux that burn so bad I can't stand it. I normally sleep on a wedge and two pillows but if I get an attack of the reflux I go downstairs and sleep in a recliner. Now I am on prescription Prilosec in the am and my gastro dr has me on liquid Zantac that I take at night before I go to sleep. Most of the time this regimen helps. The acid does go into my nose and down into my chest and sometimes I cough for hours and one time for a week. Now I cough a lot anyway because I have lung damage but you said congestion and that is what it is, you can hear it in your chest. Your daughter needs to talk to the drs about it esp since you mentioned her nose is bleeding from the acid. What you are describing is probably what others have too but I can't help you about the Louvonox, I don't take it so can't say anything there. I am just telling you my experience and not advising any meds just what the drs are doing for me. Maybe your daughter needs an EGD but she definitely should call her gastro dr. Glad you had such a wonderful Christmas, that is what memories should be made of. Glad to hear from you, hope your daughter gets some help.
Donna70

Grandma Jo

Donna70 said:

yes have the same problem with acid reflux
Hi,
It has been a year for me and I get bouts of acid reflux that burn so bad I can't stand it. I normally sleep on a wedge and two pillows but if I get an attack of the reflux I go downstairs and sleep in a recliner. Now I am on prescription Prilosec in the am and my gastro dr has me on liquid Zantac that I take at night before I go to sleep. Most of the time this regimen helps. The acid does go into my nose and down into my chest and sometimes I cough for hours and one time for a week. Now I cough a lot anyway because I have lung damage but you said congestion and that is what it is, you can hear it in your chest. Your daughter needs to talk to the drs about it esp since you mentioned her nose is bleeding from the acid. What you are describing is probably what others have too but I can't help you about the Louvonox, I don't take it so can't say anything there. I am just telling you my experience and not advising any meds just what the drs are doing for me. Maybe your daughter needs an EGD but she definitely should call her gastro dr. Glad you had such a wonderful Christmas, that is what memories should be made of. Glad to hear from you, hope your daughter gets some help.
Donna70

thank you for posting about acid reflux
Good afternoon Donna
Thank you for sharing how this acid reflux affects you. I was afraid that she was developing another blood clot or liquid in her lungs from the acid going everywhere. When she was first diagnosed she had h. pillori and needed antibiotics to stop the acid before they even went forward with radiation and chemo. She also thinks she has lung damage from the tubes they inserted after the Ivor Lewis surgery. They deflated her lungs and her stomach was already flat from not eating for months. She seems out of breath quite often when she is talking .It has been such a long road back and she still does not eat or drink enough. Could you tell me what is a EGD ? We do not have a gastro dr. Only our oncologist for the cancer. She had the gastro for the very first test she did in June 09. Would the surgeon do any testing or would it be a gastro dr. ? Sorry I hope I am not wearing you out with all my questions. Thank you again. Grandma jo

Unknown

Grandma Jo said:

thank you for posting about acid reflux
Good afternoon Donna
Thank you for sharing how this acid reflux affects you. I was afraid that she was developing another blood clot or liquid in her lungs from the acid going everywhere. When she was first diagnosed she had h. pillori and needed antibiotics to stop the acid before they even went forward with radiation and chemo. She also thinks she has lung damage from the tubes they inserted after the Ivor Lewis surgery. They deflated her lungs and her stomach was already flat from not eating for months. She seems out of breath quite often when she is talking .It has been such a long road back and she still does not eat or drink enough. Could you tell me what is a EGD ? We do not have a gastro dr. Only our oncologist for the cancer. She had the gastro for the very first test she did in June 09. Would the surgeon do any testing or would it be a gastro dr. ? Sorry I hope I am not wearing you out with all my questions. Thank you again. Grandma jo

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Donna70

unknown said:

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you need to be followed by a gastro dr
Hi Jo,
William has covered all of your questions but I just wanted to emphasize that besides the oncology dr your daughter needs to have a really good gastro dr and with all the reflux she is having it would be good to get him to do the EGD but see him first. The one that did the diagnostic ultrasound would be the one. Now about her trouble breathing and talking, she should ask the drs whether she needs to be seen by a lung dr. I had the Ivor Lewis and for months afterwards I had a really strange cough and then developed a lot of trouble breathing and walking. Now in my case it turned out to be fluid in my lungs and also I developed asthma. The lung dr has me on nebulizers and inhalers and I started to have much better breathing. Still cough a lot but a not as much. This might not be the case with your daughter but the Ivor Lewis surgery as you know involves, a rib or two broken and they move your lung to get to the stomach and esophagus so there can be side effects and also I had post op chemo for a bad node and that might have caused some of the damage too along with the radiation. This is just my scenario but it sounds like your daughter has more than one thing happening at once. The reflux can go into the lungs and that will not help for sure. So she needs as William has said, go to the gastro dr, get an EGD, get something to help with the bad reflux and talk about her breathing capacity with her drs. good luck and let us know how she does.
Donna70