My husband has CVID and was diagnosed last year in August 06. He had 5 treatments and we found out that they were not the right dosage and have now gotten a new Dr., who is great btw. But my husband has decided to not do his treatments. He is sick and in pain all the time. It is so hard for me to be supportive and understanding when he will not do what the Dr.'s are asking of him. I have tried to explain and so have the Dr.'s that this not a good decision and make him understand how this will affect his health further and how it will affect our family.
He says he is tired of Dr.'s and needles and all that goes along with this CVID. Any ideas on how I could possibly help him understand how important his treatments are? I am now sole provider of my family because his health is not good and I am stressed to the max.
Your suggestions of help would be greatly appreciated. Thank you!!!

I am a long time sufferer of CVID and all of it's side effects. Is your hubby in a lot of pain?? If so look into pain management. I soo understand his frustration of doctors, tests, hospitals and more doctors just to be in the same position.

If you would like, you can contact me at libramom_1068@msn.com .
Robbi

Hi. I have been receiving IVIG therapy for 3 years now. It has made a remarkable difference in how I feel. I have had less infections and less visits to my doctors. Over the counter medication( and at times prescription medication)has helped the pain along with acupunture. Meditation and prayer have helped me come to terms with it. When I go for infusion therapy most of the people at the center are receiving chemotherapy. It helps me to realize that it could be much worse so I try to focus on the positive. It is important for your husband to continue his therapy and his doctor appointments despite the fact that he is frustrated. I did go for counseling the first 6 months of my therapy which helped me to sort out all my feelings. I went through a period of anger, defiance, and whats the use period, which I think may be where your husband is right now. My husband and my family have been, and still are very supportive which helps tremendously. Your husband is lucky that you care and that you recognize there is a problem. Keep supporting him and if you have to get his family to help(parents,siblings,friends,etc.)and bring them on board. It took four years before my ENT & rheumatologist finally figured out what was going on. I am 52, I work full time in a very physically active job, and I still do the things that I love to do.(play golf, ski, shop, etc.) If you would like to contact me I would be more than willing to share. Acquawoman@optonline.net

Yes, he is in alot of pain- always. I have given him gift packages for massages- which he does use and says helps, his family is involved, but we can not get him to goto treatment. I have now gotten myself and our kids into conseling to talk about what is going on with him. Sadly even after our children and his whole family have spoken with him, he is still not willing to goto his treatments. I keep praying he will go. The Dr.'s have all told me that I have done the right things to try and get him to go, but now it is ultamatley his choice. I even read things off of the forums about how great people are doing, who are doing thier treatments regularly, but that doesn't make him change his mind. I am hoping that he will wake up before his health gets really bad and do his treatments. I am just very tired and very stressed out and sadly ther forums are the only support I have with understanding what CVID is and what not. Thank you for your responses. I will keep talking with him about going to his treatments and hopefully one of these days he will get his treatments.

Hi, my partner has CVID. I really sympathise with you because I really now what you are going through. It is hard enough watching someone you love being sick and is now even harder when he is not treating himself. My partner goes through this every few months. I call it a lull! He just stops all his treatment and gets very down and low! It is very hard to watch him go through this but he generally picks himself up. He has a great love for life and I think this is what generally helps lift him out of it! Maybe if you and your husband took a few days away and maybe done something he loves or once loved. Even something as small as reigniting a passion for an old hobby can help. He needs something to look forward to, apart from treatments, infusions and hospitals! Maybe you should both look into SCIG or subcutaneous immunoglobin. My partner has been doing this for the past two years, and it has made the world of difference to him! He can do it at home which means he can do it lying in bed while watching a football match on TV. Its a lot easier and takes out the hospital visits. His infusions are weekly and are done over an hour which gives him a lot more freedom and means he can do them after a days work and not have to miss out on work! He still has his down days do and I can't blame him, but now he only has to go to hospital every three months for blood tests to check his troff levels and to see his immunologist. It has really taken a lot of pressure off him and his mood is a lot more positive. I understand that you are probably taking the brunt of this and also the added worry of him not taking treatment, I am the exact same. He needs to realise what him refusing treatment is actually doing to you in terms of added stress etc, and that he is being a bit selfish! This normally brings my partner out of his lows and he generally gets back into the swing of things. Even something as simple as changing the brand might help! Best wishes

Hi,my wife Vicky and i have been together since 2001, have a 4 year old daughter and have been married since June 06 and Vicky has been diagnosed with CVID since April/May 07. This is all new to us so its confusing, hard and emotionally stressfull for both of us. We have actually been separated for the last 3 weeks. It all happened spontaneously and its not a mutual agreement! She was really down for a day or so and then said she needed to find herself and wanted me to move out..
I dont know wether its the reality of being diagnosed, the unknown of the condition itself, or side effects of the treatment or one of so many other possibilities. She has mentioned feeling like this before, not knowing who is or where shes going. I have always tried my hardest to support her through this but find it hard to not react to her mood towards me. I now have to step back and let her find what she wants but its so hard when you dont think its the right decision. I will still be there for our daughter and for Vicky, but find it so hard to change my role - i was her rock and primary carer, there thru thick n thin to someone she gets angry towards for no reason.
Sorry got a bit emotional back there, doubt it will help, but theres always someone worse off when u think ur the unluckiest person in the world

My diagnosis is depression. If I were you, I'd advise him to see some one who can evaluate him emotionally and if needed prescribe an antidepressant.

If CVID is the diagnosis, I believe that Social Security Disability would be easier for him to get If you haven't looked into this, please do. This can possibly take some of the financial strain away from you.

God Bless

I am a long suffering CVID patient at 50 years old with 3 kids 12, 7 and 8 months old, and the middle daughter severely disabled with Cerebral palsy, and as a math teacher at an inner city school, I live with pain and fatigue and fear of illness every minute. My wife commutes 2 hours every day, so I am also soccer "mom", doing all of the activities and driving kids around.

Despite my illness I have managed to be an award winning teacher, and a published author.

I am sorry for being blunt, and believe me I am no superman, and complain as much as anyone else. But I still get all of my treatments, see the doctor, and take care of myself because I owe it to my wife, my kids, my students, family and loved ones. This is rarely a terminal disease, unless you choose to let it be.

Your husband needs to do only one thing: MAN UP.

I would encourage you husband to give it one more chance. Find a qualified infusion nurse who can come to your home to give the infusions. There are specialty pharmacies in the country who hire highly qualified nurses. Look up Port-A-Caths and discuss this with your husband. This is a wonderful alternative to being stuck in the arm for infusions. He can have his infusions at home. He will feel better and have a better quality of life!

Feel free to contact me.

I'm not a fan of ports or bovi's. Unless someone has totally impossible veins why would an immune compromised patient want to have a something that invites infection? I've been getting infusions for over 28 years and my veins are getting worse over time, but I'll stay with getting stuck once a month.

I've been getting my infusions at home every four weeks for over 22 years. I've had the same infusion nurse all that time. She comes at my convenience, evenings, weekends or my days off. I can't imagine an easier less intrusive way to have my infusions.

My two children also have CVID. Admittedly it is a pain, but for the most part, it is a non debilitating chronic illness when properly diagnosed and treated.

Situational depression is a medical / chemical imbalance that needs to be treated the same way CVID needs to be treated. . With medication.