mike b
Member
- Joined
- Nov 2, 2008
- Messages
- 18
- Reason
- Loved one DX
- Diagnosis
- 06/2008
- Country
- US
- State
- NM
- City
- Rio Rancho
Hi,
Lynn has PBP and was diagnosed in June 2008. She became symptomatic in May 2007. She had her PEG inserted 11 months ago and has been very stable and strong until this week. Yesterday she told me her ankles were getting a bit wobbly, her arms and shoulders were getting weaker, and she was feeling more tired. She has gradually lost weight in the past few weeks and is now rather skinny and a bit bony. She constantly coughs to dislodge the mucous that builds up in her throat. Her ability to cough it out is getting weaker and more labored. Today I was home from work because of Veterans' Day and she complained of nausea. We were outside enjoying the lovely day when she had to vomit. This was tough to take. She said she felt better and we shrugged it off and continued on. We had dinner and she again complained about nausea. She just vomited again. She says it is a "bug". I wonder. She doesn't have a fever to speak of. She has not been vaccinated against the H1N1 since there aren't enough doses to go around her in NM. She says she definitely does not want to end up in the hospital. She doesn't want a trach nor does she want a CPAP or BIPAP. She wants to spend her last days at home with hospice care.
So here's my question: I don't know how the disease ultimately progresses but I do have a sense she is reaching the end in the near future. Is the nausea a normal stage of PDP progression? If she continues to not be able to keep food down, I don't see much choice but hospitalization and giving her IVs to keep her hydrated. I understand the final stages of PBP are extremely unpleasant. I guess I'd like to hear from others who have been down this road for your advice and suggestions. I don't really know what to do - just that her progression seems to have speeded up. My main concern is to provide comfort and support.
Mike
Lynn has PBP and was diagnosed in June 2008. She became symptomatic in May 2007. She had her PEG inserted 11 months ago and has been very stable and strong until this week. Yesterday she told me her ankles were getting a bit wobbly, her arms and shoulders were getting weaker, and she was feeling more tired. She has gradually lost weight in the past few weeks and is now rather skinny and a bit bony. She constantly coughs to dislodge the mucous that builds up in her throat. Her ability to cough it out is getting weaker and more labored. Today I was home from work because of Veterans' Day and she complained of nausea. We were outside enjoying the lovely day when she had to vomit. This was tough to take. She said she felt better and we shrugged it off and continued on. We had dinner and she again complained about nausea. She just vomited again. She says it is a "bug". I wonder. She doesn't have a fever to speak of. She has not been vaccinated against the H1N1 since there aren't enough doses to go around her in NM. She says she definitely does not want to end up in the hospital. She doesn't want a trach nor does she want a CPAP or BIPAP. She wants to spend her last days at home with hospice care.
So here's my question: I don't know how the disease ultimately progresses but I do have a sense she is reaching the end in the near future. Is the nausea a normal stage of PDP progression? If she continues to not be able to keep food down, I don't see much choice but hospitalization and giving her IVs to keep her hydrated. I understand the final stages of PBP are extremely unpleasant. I guess I'd like to hear from others who have been down this road for your advice and suggestions. I don't really know what to do - just that her progression seems to have speeded up. My main concern is to provide comfort and support.
Mike