[bety]

Dear Cheryl,
Thank you for your sympathy, prayers and hugs, etc. They are very much appreciated.
I know that your presence and that of your son’s is of enormous help in relieving some of your mother’s grief and pain. At present, I am still staying with my older daughter and her family, but I hope to return home soon. My children are already objecting, but I need to remain more independent. They will continue to give me their support and assistance when needed. Fortunately, my two daughters live walking distance from my house.
All the best to you and yours, especially your mom.
bety

[bety]

Dear Sandi,
Thank you for your comforting post and kind remarks.
You are right about the wonderful memories…they help ease the pain.
Every moment with him was precious. I feel fortunate to have met him and known him all
these years. He was truly a great person and
will always live in my thoughts.
All the best, bety

[bety]

Dear June,
Thak you for your kind thoughts and prayers. Your posts have always been valuable and appreciated. I hope that Vidaza works for your dad! All the best. Bety

[bety]

Dear Elle,
Thank you for your sincere condolences.
I have been following your posts for some time and have always found them informative and comforting. I found that your loss was particularly hurtful.
It will take some time before I can realize that Ed is not coming back. He was very special; a privilege to know and be with. I am trying to focus on the great years we had together. All the best, bety

[bety]

Dear Lynette,
Thank you for your thoughts and prayers. The loss of your mom must still be very difficult.
My younger sister died suddenly 4 months ago in Poughkeepsie. I am still coping with her loss.
All the best, bety

[bety]

Dear friends, Thank you for the condolence messages, prayers and your kind support. Fortunately, my children are in very close contact and a great source of comfort. bety

[bety]

Neil,

I forgot to mention that I try to keep Ed’s nasal passages lubricated with antibiotic ointment, Vaseline, or something called Boroleum to prevent cracking due to the low humidity. Our ENT doctor recommended the above as well as a saline nasal spray and a decongestant such as Afrin. Ed cannot tolerate a humidifier’s cold blast, so I keep a pail of water next to the radiator.

[bety]

Neil,

Thank you for your rapid response.
Nosebleed QR is sometimes effective. I think the ice chips is a great idea. I will certainly try it.

I believe keeping your head tipped back might contribute to coughing up clots. The nasal bleeding tends to trickle down the throat and form clots that are coughed up.

You are right about Ed’s problem being more serious. I think that after 2 units of blood, Ed suffers from volume overload, which might increase the pressure on the fragile blood vessels in his nose. In addition, his hypertension becomes more difficult to control immediately after a tx. The medication that he is on (hydrochlorothiazide), is a diuretic, which causes both sodium and potassium to be eliminated. Since the K is needed for clotting, I sometimes give him a low dose of the K to replace that which has been excreted. Incidentally, a side effect of the medication is the lowering of platelets and wbc’s. I just ordered some D3, which someone posted that might be helpful.

After three days of mild to moderate bleeding, his bleeding seems to have subsided.
If he is bleeding during meals, I use something called “Nasal Cease” (specially treated sterile nasal pack), which is effective for several minutes. I also pack his nasal passage with a sterile piece of gauze impregnated with a little Afrin. I am grateful to someone in the forum, who posted using prescribed Amicar tablets. I find them helpful with Vitamin C and sometimes some calcium.

My druggist suggested I try placing folded gauze under his upper lip to place pressure on a blood vessel leading to the nose.

The forum has been invaluable in helping me control Ed’s bleeding.

Neil, I always pay special attention to your posts. You are so very knowledgeable; I often go back and re-read what you have contributed.

[bety]

Neil,
What did you do to control your nosebleed?
My husband has a serious problem with nosebleeds related to a low platelet count and hypertension.
When the hypertension is under control, the bleeding tends to subside to a large extent.

———————-
Husband, 88, dx rars with pancytopenia. Prbc tx and tx plt dependent around once per week. He now sleeps a great deal and does not read as much as he would like.

[bety]

Helenr and others,
Thanks for your detailed responses. I wrote back almost immediately, but my post was not registered. I got some sort of error message.
Unfortunately, Ed has been bleeding nasally for several days, almost constantly. Platelet txs did not help. Tomorrow, we have an appointment with our ENT specialist. I hope he can stop the bleeding. I’ll keep you informed.
All the best, bety

[bety]

Anyone with very low platelets on revlimid? Has the drug lowered the platelets further?
What side effects have you experienced with exjade, if any?
All the best, bety

[bety]

Neil,
Now that you mention it, my husband spent many years doing field work in the desert and other sunny places. The sun exposure seems the more likely connection. My cousin’s only daughter died of melanoma…unfortunately, also a sun worshiper.It’s great hearing from you.
All the best, feel well, bety

[bety]

Neil,
I’m glad to hear that you are progressing in the right direction!
Just a thought…my husband had basil cell and dysplastic skin lesions (many of the latter) that were removed, surgically. I wonder if skin lesions are related to MDS?
We are all praying for a rapid, complete recovery.
All the best, bety

[bety]

Neil,
We all wish for you a complete, rapid recovery….not just because we are praying for this, but also you know how much we need you!!!
You are our MDS patient forum encyclopedia. When we need help, we can always count on Neil.
Considering all that you have gone through, I really am taken that you could communicate with us so quickly and bring us up to date. You are wonderful!!!
As for the change in your counts, I think your MD hit it right…volume overload. My Ed had the opposite happen, he was dehydrated and his platelet count was higher than was indicated.
All the best, our heart-felt best wishes. bety

[bety]

Neil,
Our doctor told us not to worry about an elevated B12 blood level. I don’t know if a high level of folic acid should be a problem.
I think that there is evidence that too much vitamin B6 can cause tingling and numbness in the extremities. Also, one should check for elevated blood glucose.
You might want to Google: numbness in feet; and high B12 blood level.
All the best, bety

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