So a few days back, feeling better, probably around 90% right now. Met with my Hematologist yesterday. Obviously the big question was the numbers. The number in question was 10. Not great but better.
So in my trek with this stuff, it has always been puzzling. I think the disease itself is less than concrete and then my manifestation is even less absolute. During the stay at the hospital there was talk of other treatments and all of that. As in the past that all fades and we go back to having it but nothing proactive to do about it. Based on my conversation with the doctor, since I do respond to simple steroid treatment any other course of treatment is just not warranted.
I don’t know that I completely agree but then again I am just experiencing it.
Quick post after a rather scary and frustrating episode in the issues I have encountered with CVID. I have had a minor cough and odd congestion for months. My primary care physician has been useless, just trying to get an appointment has been futile. Knowing what a potential infection can start, I tried calling my Hematologist and consistently hearing why are you calling us. Granted I was spoiled by my treatment while at the Cleveland Clinic, where they would error on the side of caution. Moving on.. so one trip to the ER when I start feeling symptoms… I get some fluids and sent on my way. Symptoms grow worse and this time… rush to the ER. My hemo numbers were low in the 4 range. I felt them come on… this feeling you can not describe technically, it’s just like you can feel the fluids are missing. Standing would cause rapid heart rate, loss of breath and disorientation. Again the hematologist chose to respond with “why are you calling us”. I had to work some things out and then I new it was time to go to the ER. After a brief time in the local ER, I was transported to the main hospital. Ahhhh let’s resolve this right??? First day, nothing until late, 80mg Prednisone. Well let’s include the three attempts to get up to 11 vials of blood (so about 34 in all). Next morning a quick blood draw, hemo numbers up slightly, more prednisone. No exploration for an infection or other cause. Another day, same routine, numbers down now. Really a rough one after I was told I would be released and continue the medication and be tested then to be told that my numbers were down. Other than nothing but mention of a follow up infusion plan.
Late Wednesday night they come for a blood draw to type and match my blood. Could this be they are actually going to try something? Day passes with nothing. Finally late (around 5pm after sitting doing nothing) I get two units of blood, no easy feat considering factors specific to me and there are discharge papers. Three hours later two units infused and getting ready to go. I doctor starts to call the nurse to question the discharge. They did nothing for days beyond the normal rounds now a buzz of activity. Incredible nurses push through, then have to call because there are no prescriptions with my discharge papers, meanwhile the other doctor is still fighting the discharge. We bust out.
Coincidentally I had a first appointment with a new Primary Care Physician. Just to have a new family doctor close to home. He looks at the concerns of infections I have and writes me a prescription for antibiotics. We will see as I am sure I have a few more days of less than full strength but mentally knowing some consideration was made beyond the arrogance of “specialty” gives me peace of mind.
The follow-up appointment with my hematologist in a few days could be interesting.
This tends to be common for me, get a cold and when the symptoms linger you debate whether you should call the doctor or am I just panicking. Well the day before a big move I got a cold and I quickly sensed it was more than a cold…. but I had a ton of boxes and furniture to move and very little time to do it. I got a call that my new IVIG Infusion was approved and they could get me in… nope I have to get this move done, rescheduled to the next week.
Move finally completed, cold obviously worse. I make my infusion appointment and they prescribe me some antibiotics since what I suspected was more than a cold is certainly more than a cold at this point.
The doctor said that it might take a few hours, maybe overnight, but I could be feeling much worse as all of the IVIG hits my system while I have an active infection. Uggh was he right.
The problem is despite some minor relief I have not gotten back and the cold seems pretty much gone at this point, yes still taking the antibiotics as prescribed. The kicker is some of the symptoms are similar to what I was feeling a few years ago when I had a near fatal DIC episode. This time however I am still functioning, not well but that’s another story. So the internal debate consumes me…
So, I had put together a long post but then what I thought changed… So the hematologist had to back off of the CVID diagnosis. One of the tests took weeks to be conclusive. The “provocative” test consisted of immunizing me for a certain virus and then checking to see how my body responded. So after weeks the tests were in, and my body was producing anti-bodies so no CVID. Ugggh so back to square one. Well the hematologist, still very confident of his diagnosis, referred me to an Allergist/Immunologist.
In the meantime, no Prednisone, I was really back to square one.
I see the allergist/immunologist, go over the lengthy history (at this point I am having a hard time remembering when things happened and what order they came in). His affiliation with both Cleveland Clinic as well as University Hospital he had access to both sources of doctor reports and testing results. A few questions and we were back down the CVID route. Another series of blood draws. Followed up in two weeks and he feels CVID is confirmed and wants the IVIG infusion (can’t call it treatment as it is more like maintenance/preventative measures) resumed.
So the takeaway was I have CVID. Most people with CVID present with chronic infections, then there is the 7% like me that in general do not present with obvious conditions. So the upside is I am not chronically ill, the downside is I can suffer surprise attacks like the DIC episode as well as the recent ITP and possibly the Transverse Myelitis.