Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
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 past few weeks we have found that my lungs have declined fairly significantly in the last year since my last round of testing, and I have very high pulmonary pressures as a result creating instability with my heart condition. Because of these reactions I am being forced to transfer infusion centers form a place that I love to a facility that offers a higher level of care. It is a frustrating ordeal. Also, since things have still been going consistently down hill and are having affect on my functional abilities, I am finally agreeing to making the trip to Colorado to stay at National Jewish Hospital for some intense consulting to get all of my treatments better stabilized to keep me healthier. I started the initial consulting process this week, and have another appointment via phone on Wednesday for some further screening to get approved to go. If that goes as planned, I will start figuring out my financial status so I can book flights and go have a week of medical fun. Has anybody had any experience with National Jewish, or any out of state consulting programs that could give me a little insight into your experiences? And most of all, I need some happy vibes to maintain my sanity while all of these transitions are going on! Y'all are super awesome...hoping everyone is in good health!!
ps. thanks for the double sock and blanket ideas. they were used and I appreciate it.
hugs
deb
You are such a strong woman to be dealing with all of this so calmly.
I've not been to the National Jewish Hospital, but I did a little research, and they seem to have a fantastic reputation.
US News ranked National Jewish as the #1 Respiratory Hospital in the Nation, and their Immunology Department looked good to. What I liked is that their Immunology department was just plain Immunology vs. some places that combine and have and Allergy&Immunology Dept.
Here's a link to the article in US News
http://health.usnews.com/best-hospitals/area/co/national-jewish-health-6840315
Please keep us posted on how you are doing...sending lots of good, healthy vibes your way :)
No experience with NJH, but have heard wonderful things about them..
Will send lots of Happy Vibes and a few prayers too...
Cheryl
Sending you my prayers that all goes smoothly and you accomplish some good things while there. As I read though the thread, I was thinking that asking them to set you up with a hospital social worker might be helpful. I know when I lived in another state, I asked for one when I was getting involved with the hospital and she was awesome in helping me figure everything out. The hospital SW might be able to help with identifying resources to cover lodging and such as well.
Then on a selfish level, I am excited to hear about Jewish National I've seen it in Denver when I've been there (I live in Colorado) but had never considered it a resource for me. I'll have to look in to it and see what my doc might have to say about them too. I am just getting the extent of lung damage that I have identified. Waiting on the results of my CT scan now.