As some of you know I have a rare medical condition called CVID. I basically do not make all the antibodies I should so I have to get them from other people. This is not a disease you catch but rather a genetic condition. If you ever sold your plasma in college, you were helping someone like me. My treatment is getting my antibodies replaced every three weeks via an IV. My last treatment was on August 15th and my next one is scheduled for tomorrow, September 21st. I am feeling fatigued right now and I hope the infusion will give me my energy back. It was only 2 years ago that I was diagnosed, however I have had the condition for many years. One of the reasons I can say for sure I have had this since at least high school is I had a constant cough for as long as I can remember. I lived in a house of chain smokers so I just assumed I had lung damage. Three months after getting my first treatment, the cough disappeared. I had basically been sick nearly continuously for over 20 years. Also, I would always need to go to the doctor after any vacation. I would have some sort of sinus or respiratory infection when I returned. I have just moved to the other side of the world, spent 3 days at Disney Paris, 6 days in London, one week in a hotel in Bangalore and then moved into a house and while I am exhausted, I am NOT sick.
I was scheduled to have the infusion today but there was a general strike and the kids did not go to school so we postponed one more day. I am feeling a little nervous since this will be in a new environment. In TX, I had the infusion in my home and a nurse came out to start the IV. While I enjoyed being at home, the nurses who do this are not the best at starting an infusion. They only do a few a week and my veins can be tricky. At my last infusion in TX , the nurse tried 9 times then called for a different nurse who on the second try went straight for the vein in the elbow joint. My infusions last about 6 hours so I was not happy about having the IV in a joint. I am hoping that the insertion of the IV will go better at a hospital where they have people who do these multiple times a day. The down side is, I don't know the set up and I will be in a hospital bed instead of my recliner. We were able to bring the medication with us from the US so at least that is staying the same. My doctor splits her time between here and doing research on my disease at a university in the USA. She insisted that I be able to get my current medicine here and the insurance and hospital finally agreed to make sure it happened.
Many people have asked, "Why would you go to another country to live when you have this condition and all the additional complications it will bring?" I talked to my doctor about this before I left and his response was that I have never been better able to handle this move than I am now. If we had done this before my diagnosis, I would likely have been very, very sick all of the time. Now that I am on proper treatment, I may be better able to handle the environment than the rest of my family.
Here is to hoping that my upcoming infusion goes wonderfully and I feel like my (new) old self in a few days. I will keep you posted.
I was scheduled to have the infusion today but there was a general strike and the kids did not go to school so we postponed one more day. I am feeling a little nervous since this will be in a new environment. In TX, I had the infusion in my home and a nurse came out to start the IV. While I enjoyed being at home, the nurses who do this are not the best at starting an infusion. They only do a few a week and my veins can be tricky. At my last infusion in TX , the nurse tried 9 times then called for a different nurse who on the second try went straight for the vein in the elbow joint. My infusions last about 6 hours so I was not happy about having the IV in a joint. I am hoping that the insertion of the IV will go better at a hospital where they have people who do these multiple times a day. The down side is, I don't know the set up and I will be in a hospital bed instead of my recliner. We were able to bring the medication with us from the US so at least that is staying the same. My doctor splits her time between here and doing research on my disease at a university in the USA. She insisted that I be able to get my current medicine here and the insurance and hospital finally agreed to make sure it happened.
Many people have asked, "Why would you go to another country to live when you have this condition and all the additional complications it will bring?" I talked to my doctor about this before I left and his response was that I have never been better able to handle this move than I am now. If we had done this before my diagnosis, I would likely have been very, very sick all of the time. Now that I am on proper treatment, I may be better able to handle the environment than the rest of my family.
Here is to hoping that my upcoming infusion goes wonderfully and I feel like my (new) old self in a few days. I will keep you posted.
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