[bety]

Hi,

Anybody with iron overload suffering from mild memory loss? After a short hospitalization and several transfusions within a short time span, my h seems to have trouble recalling certain people. With prompting, his memory seems to improve.

Husband, 87, dx7/03, RARS, transfusion dependent around every 2 weeks. Pancytopenia.

[bety]

Dear Jen,

I am concerned about the dizzy spells, sweats, disorientation. These may not even be related to the coumadin or he may be bleeding from too high a dose. His bleeding time should be checked as well as his blood pressure and pulse rate. A drop in b/p could be causing some of his symptoms. He may be losing electrolytes due to the perspiration. It is important that he be checked by his doctor or an internist to diagnose the problems. All the best. bety

[bety]

Dear Jen,

I do not recall any side effects from the coumadin. Initially, I had to be monitored frequently to determine my bleeding time and adjust the dosage accordingly. You may want to check his temperature after the shakes and shivers stop. Sometimes it is an indication of a rising temp. I hope not.

All the best, bety

[bety]

My husband may require Exjade soon. Are there any health plans that provide Exjade at a cost that is not exorbitant?

[bety]

Dear Patti,
We are all saddened by your loss. From my experience, working with dying patients, as long as you hung around, they tended to hang on. Once they were left alone for a few minutes, they passed away peacefully.

With my brother, it was different. He had not seen me for a couple of years (three thousand miles apart). I was quite ill; he wanted very much to see me before the end. My internist felt I should not make the trip, but since I insisted, he arranged for me to have oxygen on the plane. When I entered his room, where he was getting hospice care, he opened his eyes and asked where is Ed (my husband). Ed greeted him. My brother then closed his eyes and passed peacefully soon after. He was waiting for me to say goodbye.
On the other hand, my mother waited for us to leave her bedside, before leaving us.
Your MIL, I believe, was the general case. She needed to be alone to let go.
All the best. bety

[bety]

Patti,
These are very hard times for you and yours. I hope the end will be peaceful and without pain. We are all grateful for your involvement with your mil and the forum. Our prayers and thoughts are with you.
I hope you will continue being in touch with us, if you have some spare time. Your posts and your caring have meant a lot to me and I’m sure, to most of the forum members.
All the best, bety

[bety]

A few years ago, I had severe chest pains and was so short of breath I could barely talk. An MRI and other tests revealed that my lungs were full of small clots that had traveled from clots in my calf and thigh. Also, I apparently suffered from a mild heart attack related to the clots. With treatment (heparin, coumadin and oxigen, I was able to leave the hospital after 8 days. I had to remain on coumadin for more than 2 years, with frequent checks of my bleeding time.

I do not have mds. If your father has low platelets or some other related problem, he may require different treatments to get rid of the clots.

Sorry that I have no information about possible side effects from vidaza.

All the best, bety

[bety]

Patti,

I just checked both Bactrum DS and Levaquin on the internet re side effects. Even when given prophylactically, they can lower wbc’s and platelets. Most drugs have side effects and should be looked into.

Again, your MIL requires antibiotic protection. There are side effects. The antibiotic treatment probably outweighs any possible negatives. Another unpleasant “catch 22” situation.

I am glad to hear that with your MIL’s treatment, she has made significant progress. She is lucky to have your constant help, support and input.

I have followed your posts closely and used your recommendations in trying to help my husband’s low counts.

[bety]

My mother had Meniere’s Disease that was essentially cured on a low salt diet and medication. Unfortunately, I do not recall the drug that was prescribed. At present, there may be better drugs but be sure to check out the side effects. My mother’s symptoms were the whooshing sound and vertigo.

[bety]

Dear Patti,

You mentioned that your MOL is on prophylactic antibiotics because of her low white count. I thought that antibiotics (along with many other drugs) tend to reduce the wbc. It sounds like a “catch 22” situation. Also, would antiviral medications (such as acyclovir) help with mds in the case of a viral infection?

My husband may require EXJADE soon. I really appreciate your posts on this topic as well as your other posts. This forum has been so very helpful to me. Up to date personal experiences are invaluable in trying to understand this dreadful condition.

[bety]

Dear Ani,
I was troubled by my response to your nosebleed question. If the bleeding persists, you might want to see an ENT doctor. A few years ago, I had serious intermittent nosebleeds. My ENT doctor cauterized a weakened capillary, which cured the problem. Continued bleeding can lead to anemia. An internist might need to be consulted. By all means read about nosebleeds on the internet, but if the bleeding continues, professional help should be sought.
A humidifier might be useful in a dry winter home. There are salves that can keep the mucous membranes from cracking and lead to the bleeding.
Good luck. All the best.
…………….
Husband 87, Dx RARS with cytopenia 7/03. Tx dependent. Aranesp stopped working after 2 and on-half years.

[bety]

Dear Ani,
My husband suffers from occasional moderate nosebleeds. He uses the Afrin Nasal spray as Jack’s ENT suggests. In addition he uses something called Nosebleeds QR which can be ordered on the internet. The company’s website is http://www.biolife.com They list their tel. # as 1-800-722-7559. It generally stops the bleeding almost instantly and is supposed to be free of side effects.
Controlling one’s blood pressure sometimes helps prevent the bleeding. Pinching the nose for several minutes with head pointed downward may be helpful. Sleeping with the head a little elevated is recommended. You can Google the word “epistaxis” or nosebleeds for more detailed information.

[bety]

Dear Karen, I know your father will be with you always….He helped mold you and you have his genes. His spirit remains around you.
You will continue to feel his presence and he will continue to comfort you. Yet the ache is still there.
Recently, I have lost several loved ones, but somehow I do not feel that they are gone. It took a long time before I could function halfway normally, but I know they would want life to go on.
I have difficulty expressing feelings of sympathy or empathy or sorrow. My thoughts are with you and yours.
bety

[bety]

Josey, I hope you are being treated for your occasional hypertension. Ed and I monitor our b/p twice per day with a wrist sphygmonometer (not the most accurate). I try to keep his diastolic below 140, but he does not always cooperate. When my b/p was out of control, I found that exercise, weight loss, low salt intake and medication kept it within bounds. Celery has a relatively high salt content but is a natural diuretic which helps me keep my med. dosage on the low end.
Please consult with an md regarding your b/p. I am not an expert, but I try to keep up with the literature. This forum has been a tremendous resource. I try to check it daily. All the best, bety

[bety]

Dear Eve, I am so very sorry to hear about the loss of your father. Infections seem to shorten the lives of so many of our mds friends and loved ones. You and your family are in my thoughts and prayers.
bety

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