gliderlove
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- Hey there. Pancreatitis is not my main issue. I have an immune condition, severe lung disease, and some cardiac issues due to genetic defects. I am pancreatic insufficient so get flares of pancreatitis a few times a year from the damage my PI has...
- I know there have been a few people on the board who have received healthcare and infusions while residing out of the country...I was hoping somebody may have some info on how that is facilitated, receiving care out of the states, challenges,...
- Looks like we're at the point where I may have to start appetite stimulants to help me with weight gain. I was told to research and choose between Megace or Marinol. Does anyone have experience with any of these, and do you recall any pros and cons?...
- Hey, I watched a video on a study done within hotels earlier, and don't know how to post it but thought it may be good to share since we have some travelers in the group, and we are in the midst of flu season.Basically to summarize, an investigation...
- Hey! Just wanted to let y'all know I head to Colorado this weekend for my stay at National Jewish Hospital. I am being an utter procrastinator with packing!!I am fairly overwhelmed, and a little nervous! Being in a strange state with an intense...
- Question for those of you with PORTs. I am starting my third round of IV antibiotics. We have had no issues with my PORT thus far other than irritation directly following surgery, but couldn't get blood return today. I know that people often use it...
- Hey, I think I mentioned my clinic visit was today. Since my hospital stay I have been on IV antibiotics for 5 weeks. My lungs have been stubborn! This week had several good days, and I was really optimistic about clinic. I spiked a really high...
- Hey, I love the dynamics of this group, and believe prayer goes a long way. I don't typically request prayer in outside communities, but we all understand chronic illness here:) I have a friend who got the call for a second lung transplant tonight....
- Hey there! So a lot of excitement is happening in my life. I went downhill and had a bronch done 2 days ago. Then went downhill again and have not been able to oxygenate and found out I have a very severe pneumonia. I was supposed to be admitted...
- Hey guys! So little update so this makes sense. I posted previously that I have been sick. Thankfully with days of Motrin my fevers are controlled, but I still have bloody sinuses, and gunky lungs. My breathing difficulty, fatigue, and physical...
- Hey there! I hope everyone is doing well:) It has definitely been a week for me! But, I will only bother y'all with the relevant issue! I was hit last week with one of the more stubborn infections I have had since starting treatment. My lungs are...
- Hey folks! Hope everyone is well. So much change going on right now. About 2 weeks ago at my IVIG infusion I had a heart episode that had me unresponsive and I was transferred to a hospital. After a lot of annoying testing and re evaluation over the...
- Had my second attempt at IVIG yesterday. The first round of it put me in the hospital last month! I had a nurse this time that I was not familiar with because they had to make some scheduling changes at the center. I was SO frustrated with him,...
- Hey. Just found out today that 3 nodules were found in my right lung on a CT about 6 months ago. This clinic sucks, and has terrible communication. I was actually finalizing the discontinuation of care with them today. Anyways though, does anybody...
- So much has been happening it is becoming difficult to prioritize! I traveled to my clinic this week to follow up on my progress and discuss the reactions from this past IVIG. It was an eventful day! I always know to prepare to spend a few hours at...