It's my birthday and my survival anniversary,#19.

[paml]

Mary,
I spent 103 days last year inpatient between induction (AML), consolidation (transplant), GVHD event and a 2 night admit for an infection. This year I’m up to 10 days for the pneumonia. It is amazing how in our own ways we feel thankful about our journeys. We were thankful about obtaining remission, then that my brother was a perfect match. The rest of the story is exactly as you stated, my fellow transplant patients were really sick. I was thankful that I was out walking everyday under my own power! My nurses hated my leaving the floor but my doctors thought it was great. I promised the nurses that I wouldn’t kiss anyone while out…

My fuzzy head, anxiety, and shakes absolutely went away after getting off the tacro. Anxiety was a tough one for me because I hadn’t really ever experienced it and to the degree that I did while on the tacro. I was so happy to get off it. At least the second time around I knew what it was.

My congratulations to Mike for heading back to work, wow! I had to tell my employer after a year that I wasn’t able to return to my job. I was an outside sales rep. My doctor said that he wouldn’t be ready to discuss going back to work until a year from transplant. I know that’s not until March but if it were today, there’s no way I’m physically ready.

Good luck tomorrow, it would be so easy if a blood test would rule out the need for a biopsy, I’ll pray for this first then a successful biopsy if necessary.

Best Regards,
Pam

[Mary4Mike]

Pam,
Mike had the biopsy today and everything went without complications. He did have to stay overnight. That is the standard procedure for this type biopsy and it really is the best place for him to be if there are complications. He will be discharged in the morning. They did not do labs prior, but will be doing them through the night. It is one of the ways they check for bleeding. The doctor said not to be surprised about the enzyme count being even higher than they have been because the liver has been poked and prodded and that will cause an elevation in counts. She also said that his enzyme level prior to the biopsy was high, 3 times higher than normal, but that really is not that high. She sees patients come through there all the time with counts in the 600’s, 700’s. and 800’s! That made us feel a little better. We won’t have results for 5 days or so.

Walking those halls today was a bit too familiar. I cannot imagine the amount of time you spent inpatient. Winter, spring, and summer??? I can see where the caringbridge site was a blessing. Whatever else did you do with your time? Mike’s room was tiny. We walked the halls continuously just to break the monotony and also for the rehab benefits. We live around 1 1/2 hours from the hospital so I really couldn’t come and go through the day……but then again it was only 21 days. Do you still have your Neostar port (or whatever type you were given)? They pulled his a few weeks ago, but it would have been handy because they upped his magnesium and he could have done it IV. Now, he takes it orally. He still has his mediport which they use for blood draws.

I appreciate the prayers and will update when we have some answers. Thanks again for sharing your experience. It means alot.

Mary

[Smurf]

What are your CBC counts.

[Smurf]

That’s fantastic. I use alot of vitamins and I receive B12 shots every week. I haven’t be actually diagnose with MDS yet.

Back in 2001 I had blood work done and my counts were low, so my GP sent me to an Hematolgist and I had a bone marrow biospy, and it came back okay. The Hematolgist stated that it could be MDS in years to come. Well just recently my counts have drop so I am being referred back to the Hematolgist. I’m just hoping everything is still okay.

What are your counts?

[Mary4Mike]

Lindajo,
I am not sure if you are asking us about counts, etc. Mike goes Monday for his 1 years biopsy after transplant. His counts are all normal and he feels wonderful, Praise God.

I pray that things go well when you see your doctor again.

Mary

[Smurf]

Hi lindajo,

I’m new to the forum. I’ve had low blood counts since 2001. I had a bone marrow biopsy back then and they didn’t diagnose me with anything at that time. My hematologist thought I might have liver disease or possibly MDS. Liver Disease was ruled out, but I still didn’t have the symptoms of MDS, other then low blood counts. Since 2003 I have been seeing a Naturopath and I also have been taking vitamins and B12 shots as well.

Could you please tell me what you have been taking regarding you vitamins and what your counts are for red/white, platlets and hemoglobin. I am really worried as my counts are starting to drop and after 9yrs I have to go back to see my hematologist, I’m really hoping that things are still stable and it hasn’t gone into MDS yet.

Although I see you have been doing wonderfully on the vitamins and B12 shots for quite some time, that is fabulous. My Name is Smurf.

[lindajo]

Smurf, I am so sorry I didn’t see this post until now. I take B- complex time released vitamins. Calcium with D3 and Folic Acid. The amounts vary depending on my counts. My white cells are generally in the 2.5 range. Platlets are generally normal and my red cells are always low. I stay between 9.1 and 10.2 hemoglobin most of the time. If my hematocrit falls below 30 my counts genrally nosedive. Sometimes a broad spectrum antibiotic will help it bounce back. I get blood work every 6 weeks now.

[lindajo]

Maybe we should start a new thread Smurf. My 19 year anniversary and my 20th and now on the same board.

[simplistic007]

Happy B-Day and Happy Anniversary. God Bless.

[Andy R]

Wow! I am impressed with 19yrs. I just got diagnosed with MDS and am 44. Stories like this give me hope that I will survive to see my kids grow up.

[lindajo]

There is another post somewhere. I have already made it to year 20. My daughter was 7 when I was diagnosed at age 30. She is now 27 with 2 little boys ages 3 and 1.

I have been able to be a Mom and be there for almost every event. I missed a couple of softball games and a music concert in 7th grade but that was it. Considering the way she played clarinet missing that sound wasn’t a big loss.

Don’t give up my initial prognosis was 6 months to 2 years. with very little treatment other than wait and watch I am still here. Be proactive and learn as much as you can.

[Florida Gal]

Congrats, too.

You give us all hope.

What vitamin supplements do you take?

Florida Gal

[jsmith7]

Congratulations to you. I understand that whatever you are going through is tough, I hope and pray that you continue to be blessed as you go on life.

[Author]

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