Neutropenia
 

Hi Peachy!
You know during the almost nine years I have had the dx MDS I have really not struggled. I have only felt ill when I had neutropenic fever - otherwise I have been able to do everything except that I have been very afraid of infections.

This means that I only travel in my own car (now taxi), only meet friends in restaurant with "much air" or outdoors, only go to musicals, circus etc with my grandchildren when I can get a seat in the first row of the balcony etc.

The disease and/or Thalidomide, that worked three years for me, has resulted in neuropathia, so I can't walk as before and my hands are weak.

Since X-mas, when I had neutropenic fever for the 4:th time, I feel very tired but I have no pains, nausea or other symptoms. I have said good bye to my wonderful doctor since almost nine years because I don't have any treatment that should be prescribed by a hematologist and other patients are needing his time.

Now I am waiting for home care so I won't have to go by taxi to the hospital for blood work and txs.

As I have written at another post I hope that Revlimid will work for your husband!
Kind regards
Birgitta-A

Brigitta -
I am so happy that you have not struggled and know that neutropenic fevers are not fun. We are so fortunate to have kept my husband well with no fevers at all for 6 months.

I have enjoyed your responses so much and your helpful links. I often wondered how you found everything.

As we all know life is very precious and this disease brings us back to the priorities in my mind - time with family and friends. It sounds as if you have a wonderful family and I am sure your are enjoying them to the fullest.

I am so grateful that my husband and I took many trips before MDS/AML took over our lives and didn't wait until we were "older", as travel is what we enjoy most.

My best to you and yours....Peachy

Neutropenia
 

Hi Peachy!
Good that your husband didn't get fever!

You know I belong to several support groups and I will be informed about treatment and articles when I read the different lists.

Then I read about MDS in Pubmed - that is the most important info about research.

I have so called "Googles alerts" for a lot of drugs.

There are two important conferences for hematologists - one is ASH American Society of Hematology in the beginning of Dec and the other is EHA European Hematology Association in June every year.

You perhaps know that I am a doctor (not a hematologist) and have participated in conferences all over the worlds before I retired at 65. Like you and your husband I am thankful that I didn't wait until I retired.
Kind regards
Birgitta-A

Thanks for the heads up on where to check for drugs and treatments. I did not know that you had been a doctor - I missed that along the way. No wonder you know where to go! I appreciate all that you pass along.

The doctor we are seeing here in Colorado Springs told us about the ASH conference, which he attends. Maybe that is where Revlimid came to mind.

My husband was mostly retired when we met. He waited on me to semi-retire, as I am self employed. Travel is a shared passion. We have been married 15 years and traveled somewhere most all of them, up until MDS. Our longest trip was almost 4 months long traveling the entire east coast of the US from South Carolina to the tip of Maine.

Aha, Birgitta, I suspected you had to be a physician. It's tough to hide all that medical knowledge! I knew you were a gift to the Forums! Thank you so much for sharing.
Mags

Info
 

Hi Peachy and Margaret!
You know Neil asked me many years ago to write my story and you can find it at Marrowforums (and at the net too): http://www.marrowforums.org/profiles...a_Alexius.html
Kind regards
Birgitta-A

Hi Birgitta,

Do you get transfusions at home?

Deb

Birgitta-A,

I'm sorry that I'm just now following your thread, as I don't know as much about MDS as Aplastic Anemia, but I caught the end of it and I'm sorry that you're feeling so poorly and hope you can be treated at home. You've been a great help to everyone here and have a great attitude.

Home care
 

Hi Deb and curlygirl!
Deb: You know I live in Sweden where we pay very high taxes and get good care that will cost us next to nothing. A large problem is that we often have to wait before we get the care. Today I called the Home care unit and asked when the treatment could start - they told me that I have to wait two more weeks.

It is OK - I travel by a very cheep taxi to the hospital for blood work once a week and txs once a week. I gave my car to my youngest daughter because I can´t drive since I had neutropenic fever during X-mas. I am too tired.

Curlygirl: Thank you very much for the kind words!
Kind regards
Birgitta-A