Dodger47 Journey Update

[Dodger47]

Greetings Everyone.

Just thought I would give a brief update on my journey. As some may recall, I have CLL and AHIA. I got Covid though what impact that had on AHIA becoming severe was/is unclear. I entered the hospital on September 11th. Quickly my hemoglobin dropped to 3.4. I spent 20 days in the hospital and received 10 units of blood as Doctors could not figure out why they could not get the AIHA turned around. During that time my hemoglobin never stabilized and stayed in the 6-7 range with the help of the transfusions.

Also during that time I was given IVig (2) infusions and started V and O treatment. September 30th my hemoglobin seemed to improve (8.5) and the Doctor team thought I had turned the corner and I was sent home (finally and thankfully) on October 1st. During that week, unfortunately my hemoglobin went down again (6.8). This was Thursday the 10th of October. I was scheduled for outpatient transfusion on Friday but somewhere the ball was dropped and I did not get a blood transfusion. My levels were at that time dropping about .3 per day. Here nothing happens over the weekend so I was really concerned that I would be below 6.0 by today (Monday). Friday I was really feeling the effects of the low hemoglobin. Saturday was not a lot better, then, by a miracle (or V and O I guess) Sunday I felt better. Today, I feel still a little stronger. Maybe...maybe...I am finally starting to turn the corner. I have another O infusion on Wednesday and a meeting with the Doctor.

Thanks everyone for the kind words, support, thoughts, and expertise. I am hoping each day is a better day.

[Poodle2]

Dodger, so sorry to hear that. You had spent a fair bit in the hospital, glad you are at home but sorry to hear it seems your Hb is dropping again. I hope it's gone up as you would feel rubbish if it was the other way, fingers crossed the treatment has started working. At my lowest, my Hb was 72 and that was quite hard, I can't imagine what it must feel like when it goes even lower, just like you experienced. All the best, hang in there. Let us know once you know more please. Really hope it starts improving 🙏🏻 🙂

[CycleWonder]

Good luck tomorrow with your next O infusion and a meeting with your doctor. Let’s hope the V & O continue to work their magic for you.

[Justasheet1]

Hang in there. That experience sounds tough but have faith.

[Scotrn]

Thank you for sharing your story. Best wishes as you continue the journey and hopefully you are over the worst.

[Teegolf47]

Early in my journey I had AIHA, Hemoglobin levels down to 4.6, multiple hospital stays, blood transfusions, steroids and IVIG infusions. What finally got it under control was when I started the treatment for my CLL. The interesting thing for me is that my medical team kept me on IVIG infusions because of the anecdotal evidence that it seems to help not only infections, but also AIHA.

Terry

[Analeese]

Definitely hope you are turning the corner. At this point, you should be feeling better not worse as the wonderful drugs that you are on reducing your CLL.

[Danie50]

glad you are starting to feel better!🤎🤗🧡

[TruthJunkie]

Sure hoping that things are turning around for you, Dodger! Sounds as though you have been through a battle. Hoping that the O gives you a big lift! We’re all here in this together, so you have a lot of support coming your way! Take care.

[Stamphappy]

Hope things are looking up and you're feeling perky soon!