Scared …..

[sue miles]

Ty LeAnn and Beth
I really appreciate your time and support. You are a very compassionate person.
I am hoping my next appt in April will be a little more than observation. I hope u don’t mind but I might suggest a blood transfusion etc. at my next appt in April. I am working a 4 day week which works out much better for being productive.
I am more myself in the am so I have to remember to breath and do as much as I can at a slower pace. Like going for a walk and I count my steps. If I can only walk 10 minutes at a time 5 x a day or 3x it’s better than nothing.
I am also warey of chemo and I so want Beth’s challenges to subside.
I wish all of us the faith and hope to act as though we are fearless and courageous until we believe it… Knowing you are both out there brings me peace and not. Tis the season to wish you a most wonderful peace and joy during the season with such meaning. Merry Christmas. Ty both for the most wonderful gift of all :sharing yourselves so openly and honestly.
Take care of you
Sue

[LeAnn Duke]

Good morning, Beth!
I hope today is good for you and that you have some luck in getting connected with your previous doctor. I know that is so frustrating and frightening.

I realize now that I didn’t qualify my information about kefir with the fact that anyone interested in it should always check with their doctor before trying anything other than what they have told you. Kefir is a yogurt like drink that has the same properties as yogurt but I do agree that people consult with their doctors about it.

I’m definitely not a specialist of any sort but only know that kefir has benefitted my husband and I and many more folks that we know that have intestinal troubles but I realize that GVHD is an animal of a different color for sure.

Praying that you have a successful and blessed day!

[LeAnn Duke]

Sue, if you don’t mind my asking, what is your hemoglobin running if you know? If your MDS is just affecting your RBCs right now, then yes blood transfusions help tremendously. My levels cand drop slow or fast as I am finding out. From the start my hemoglobin was at 7 and I have hD it drop as low as in the low 6’s and after the transfusions it will go up to about 10.6. I still have some tiredness and heavy feelings in my arms and legs throughout that time, but I feel better. It stays good for about 2 weeks and then I can feel the symptoms start to return and when it gets into the low 8’s and drops into the 7’s then the heart palpitations start and shortness of breath. I do my own housework and haven’t had to really ask for help with that. My husband is good to not require me to fix his supper every night so that helps because like you I am usually better in the mornings and by evening I am pretty tired even when the levels are up. The doctor says if they can keep the hemoglobin level between 10 & 11 with the transfusions and I only have to have one a month then we will stay in that holding pattern until things change. Is your doctor checking your hemoglobin levels every month? If you don’t go back until April then how do you know how your levels are holding? I worked it out with my GYN to let me come in when I feel like the levels are dropping and they either do a finger stick (which is not as accurate as a CBC, but can give you an idea of where you are and the finger stick is cheaper. Mine have varied from the time I need blood from 8 down to 6.8. The doctor says at this point their goal is for me to have a good quality of life and if I feel bad that is not quality so he will let me judge when I need blood given the way I feel even if the number is not as low as some would suggest it needs to be for a transfusion. Already since I was diagnosed, whoever sets these rules for deciding when a person gets blood has changed the hemoglobin level from a low 8 to 7. But the doctor said they treat MDS differently for which I am thankful! Stay in touch and let me know how things are going with you! Merry Christmas to you and yours!

[sue miles]

Hi Beth,
Could you let me know about protocols you referred to in your post.
Take care of you
Sue

[sue miles]

Hi Leann
Ty for raising questions I don’t know the information for. Such as what are the results of my weekly Rbc and differential tests are. I called my Doc today left a message for a call back. In October I was high 8s who knows what now. BUT I will find out. I really appreciate ur willingness to share I am learning so much.
Do u work outside of the home? I find when I’m not working my quality of life improves alot. I like the attitude of your Dr.s who put your quality of life as priority.
I am very fortunate I live very close to the hospital and my two dr.s and my workplace. I live in edmonton Alberta canada with my husband and three adult childern, who live on their own. And 2 dogs and a few cats. My husband knows he must also get his own supper and he is super about that and all the instability of my energy level.
Wishing Merry Christmas to you and yours.
Take care of you
Sue

[LeAnn Duke]

Hi Sue, you asked whether I work outside the home. I do not! At this point I am so glad. I thought for a while last year that I would like to find something part time, but I didn’t really have the energy to pursue it. I had begun feeling really bad in the mornings and couldn’t see myself trying to get up and put energy into a job when I didn’t feel like doing anything around home. So it has worked out for the best. You mentioned walking. I wish I had the energy to exercise. But when my levels are low it’s all I can do to walk from the house to the mailbox without my heart pounding out of my chest.

I live in Tennessee in the US with my husband. We have 4 grown children and 7 grandchildren who are the joy of our lives even if we don’t get to see them all often. We live close to two of them and get to spend time with them.

You also mentioned weekly RBCs. Probably if you are low risk at this point they will only check you levels monthly if you can get your dr to do that. Especially if you don’t have an appointment till April. My RBCs start dropping after about two weeks from the date of the transfusion. My Dr told me that usually RBCs drop a half point a week. Sometimes mine have dropped a full point in a week. So it is definitely a good idea to get them or even your regular dr to do a finger stick which will check the RBCs but usually not the hematocrit, or let them draw the RBCs and hematocrit. Insurance has paid for my blood draws so that has been helpful.
I am trying to think of information that I haven’t shared so if you think of something please ask and if I don’t know the answer I’ll try to find out.

I will tell you this, that sometimes even after the transfusions your body can react differently. Most times it takes me almost a full week to feel back to “normal” if there is a normal!!! I don’t know exactly how long it takes for the blood levels to rise (kind of like the dr saying that they can drop a half a point per week) to the highest it’s going to go. As I said mine hasn’t gotten to 11 at any point. But I feel better after I get the blood, but it still takes time for all the symptoms to go away. And each transfusion and recovery is different I believe depending on how low the hemoglobin drops. So for the future when you start having transfusions be prepared for each time to be perhaps a little different. I wish I could be more specific but I also realize that each person is different and their symptoms vary in degree of severity. One woman who writes a blog said that when her hemoglobin drops to around 8 she has trouble adding and subtracting. She said she and her husband played Scrabble and she would find that she had difficulty adding up their scores. I don’t have that trouble but I do notice at times I struggle for the right words when I am talking or teaching my ladies Bible class. So everyone has things they struggle with that are different from the next person.

I hope this has helped a little. Let me know what your dr says.

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