My Wife's Sudden Medical Issues

[Mike-in-MI]

This is my experience thus far with what we believe to be Aplastic Anemia. I hope the details help someone as I am struggling to help my wife.

In early January, my wife got the flu. It was bad, probably as bad as I have ever seen. Over the course of a weekend (Thursday night to Monday morning) she slept for hours, took NyQuil frequently (did not exceed daily limit) and was completely out of action. By Monday, she was functioning, not great, works from home so well enough to get the kids to school and call in to work meetings. That was easy compared to where we are at now.

Later that month, she developed bruising on her body and still felt fatigued. She went to her primary care doctor and took a blood test, they called the next day. The labs showed dangerous levels, consistent with the LIVER having shut down (example, ALT can run as high as 55, hers was nearly 2,000). She was admitted our local hospital, then transferred to a larger hospital (Henry Ford in Detroit, which has a Liver Clinic) and in total spent 12 days in bed. Eventually she was given a steroid (Prednisone) and Ursodiol/Actigall (protects the Gall Bladder). Numbers came down enough to go home, continue the meds and get blood tests once a week. The doctors suspected acetaminophen poisoning (in NyQuil) at first, but the liver biopsy test never showed dangerous levels. The indicated that it could also be the result of a VIRUS. Basically, we were happy to be on the path to recovery and accepted that we never found a definitive cause.

She had weekly blood work and her liver function numbers steadily improved. One day the doctor calls about the latest blood test saying that her PLATELETE COUNT had DROPPED SUDDENLY (<20 from over200). We went back to the hospital (Note: We went back to the local hospital when we should have gone right to the larger center with more specialists).

They gave her 2 units of platelets, by now she was bruising again. The platelets helped with the bruising, but never permanently raised her count above 30. They then suspected an autoimmune problem, increased her Prednisone levels and gave her IVIG (Intravenous immunoglobulin) with the feeling that this would turn the course in a couple of days. Meanwhile they also took a bone marrow biopsy for analysis.

The IVIG and steroid did not solve the problem, the bone marrow results ruled out leukemia and given her lack of reaction to treatments ruled out ITP. We transferred to University of Michigan Hospital. Their assessment after reviewing what is known is AA. As I am writing this they are getting the biopsy samples to do their own analysis and reach a final conclusion. Likely they will begin ATG+CSA today!

[Mike-in-MI]

URGENCY? In both hospitals, I never get the sense that time is of the essence. Maybe this is true, maybe Doctors are told not to panic. Transporting the bone marrow biopsy took days (it's a 45 minute drive from one hopsital to the other). Once they suspected AA I read-up (found this forum) and wanted to start IST right away! They decided to wait until they were certain.
I also asked if her two siblings (wife and siblings are in their 40's) should be tested for HLA to see if they are a match to donate bone marrow. They said we can wait a couple of days to see how things go. Her one brother lives in Tiawan so I want him to start thinking about a test soon.

WEAK/TIRED At first, my wife was frustrated with being in the hospital. The kids would visit, see that Mom is just sitting in bed watching TV (everything will be OK). Then other blood levels have started to fall (hemoglobin = 7, white blood = 1.5) putting her at risk of infection and almost no energy. This has been the most difficult to deal with for me and her mom.
This is why I came to the forum. Wanting to know is this the "darkest before the dawn moment"?
She is not on oxygen, not on a machine taking her vitals, not in ICU. I am trusting the doctors are doing what is best. Sitting with her for hours and watching her do nothing but sleep is not comforting.

Facebook At what point do you announce to the world that you are sick and how much detail do you give? I know it's a personal decision. Some friends online share everything, others rarely post (I'm slowly giving up on Facebook). We were in the hospital for 10 days before making it official with a post. Me, being out and about, got tired of talking to people as if nothing was wrong. I needed the cat to be out of the bag. It has come with mixed results; some people offer to help with kids (great), others want to ask a thousand questions and give their own medical diagnosis (no thanks).

[triumphe64]

There will be a AAMDS conference in Detroit in July.

http://www.aamds.org/support-and-community/conferences

Today, you can call Leigh Clark at the number at the bottom of the page. She is the patient educator. She will calm you down and give you the proper information you need.

[Marlene]

We've all been in that "panic" mode in the early stages of diagnosis. But it's important not to rush into a treatment until you have a definitive diagnosis. SAA is diagnosed once everything else is eliminated. It probably took about one month for John to get a conclusive diagnosis and he did not have the viral and liver issues your wife has. Viral induced SAA can resolve on its own also.

It is also important to deal with a hospital and doctors who are very familiar with SAA. I think you have better outcomes when you're treated by someone with experience in these matters.

Platelets don't last long so it is not unusual to see them drop again. They don't hold like red cell transfusions.

Many here have set up Caringbridge pages as a way to communicate to friends and family. When John got sick, we held off telling people until we were sure of the diagnosis and his treatment plan.