Still Scared!

[SusanJ]

Hello everyone. Everything I read here still scares me to death. My dad was diagnosed 2 weeks ago, has had 1 shot of Aranesp and says that he feels fine. Is it possible to ever live a normal life with this disease?

[Dennis]

In a word, yes.

I was diagnosed in August with RA pancytopenia, which means ALL my cell lines were clobbered. I have continued to work every day, plus hold down duties as a church music director, while we pursue a bone marrow transplant.

I’m not saying there aren’t some changes. And feelings to deal with, the realization of mortality, etc. But yes, you can live a fulfilling life in spite of MDS.

Dennis

[SusanJ]

Thanks Dennis. I wish you all the best and will pray for you. That is all that is getting me through this, prayer. My dad has heart problems too and is not a candidate for a BMT. Right now he will get a shot every 2 weeks and they will test his blood. He will see the doctor once a month. I don’t know how the heart problems will work with/against the MDS. Please pray for him, he is the best daddy in the world.

[Dennis]

Janice,

You might want to check out this link:
http://www.aplastic.org/aplastic/information__hope/stories_of_inspirati/mds_a_gift.php

It’ll show you another perspective on MDS. It’s not
the end of anything by a long shot.

Dennis

[CarolineG]

Susan.

My Dad had Procrit shots from September until 4 weeks ago. His Hgb stayed between 97 and 99. Then a doctor switched him to Ananesp. After 2 shots his Hgb was up at 120 and it is climbing. We’re hoping it keeps on but won’t know for another 7 weeks. Since September he saw the Oncologist every 3 weeks. Since Aranesp he only has to go once every 8 weeks.

Caroline

[CarolineG]

Susan.

PS….my Dad has heart problems as well and nothing has changed in over 3 1/2 years.

Caroline

[SusanJ]

God bless you, Dennis & Caroline. Thank you both for the encouraging words. I know I must sound like a crazy woman! It seems that the only positive information I get is from this forum. Thanks Dennis, for the helpful link. The story was very encouraging. I just want someone to tell me that this won’t kill my daddy. I know in my head that no one can promise me that, but my heart is a different story. But then I know that none of us is promised tomorrow and we should live each day to the fullest. Dealing with something like this really brings that into prospective doesn’t it? Thanks for being patient with me, listening and replying to me. I will try to have a positive attitude. It really helps knowing others share in what my family is experiencing. I will keep all of you in my prayers.

[CarolineG]

Susan.

I felt just as craxy as you do. That first night when I began my ‘research’ I nearly lost my mind. I scoured this internet trying to find someone/anyone who would assure me that my Dad was going to live forever. Even the next few days I felt this ‘ready to burst’ feeling. Then reality kicked in and I reached for my faith. I can’t explain what happened but I felt a peacefulness and realized that my job here isn’t to save Dad’s life. Our mortality is in God’s hands..not ours. My job is to make him comfortable and to treat him the way I would want to be treated if I were ill. If there is a medical treatment that may work, it is up to me to find it and explore it. I quit my job and have dedicated my life to Dad, my also sick Mom, my 93 year old Mother-in-law, my husband and 3 children. I have seen more miracles since September than I saw in the 43 years prior.
We are all sharing in this together. That makes this horrible road a whole lot smoother to travel. I don’t know what I would have done had I not found this forum on my ‘research night’.

Blessings.
Caroline

[SusanJ]

Thanks Caroline. How long has your dad had this and how old is he? My dad is 73 and still working every day. He has always been very active, has walked 3 miles a day until just recently. Last time he tried to walk he only went about a city block and got short of breath. This is a sypmtom of both congestive heart failure (which he also has) and MDS. He hasn’t tried walking that far since he came home from the hospital about 2 weeks ago because he is still weak and it has been very cold. I realize that we are going to have to take this one day at a time. I wish I could quit my job and be there more for my parents, but I can’t. I look forward to discussing things with you. It appears that we have a lot in common. Bless you!

[CarolineG]

Susan,
Dad is 79. He retired 14 years ago and remained active as well. At first he walked about 5 miles a day for his heart. He slowed down gradually and then as time passed, he slowed down more rapidly. During the 3 years that he had MDS he slowly got tired more easily, he napped more often during the day, gave up golfing, did less and less gardening and yard work and he was pale alot of the time. It all went so gradually that I can’t really say when he actually seemed sick. We attributed most of his tiredness to aging. I suppose I started to worry about him when at the end of last spring, he gave up bowling because it tired him out too much. That was one of the only activities which he was still doing. Then last summer he transitioned to CMML and within one week of getting that bad news his kidneys started giving him major problems. That was when all the noticeable trouble really started. Shortly after that he picked up a bowel infection which reeked havoc on him. He’s been in hospital 4 times since October. It went on until just a few weeks ago. Now he is slowly putting himself back together. I don’t think he will go back to being as strong as he was a year ago but he is certainly improving. He walks again on nicer days but only to the corner of his street. He takes a cane now just in case he gets dizzy or wobbly. He drives his car once in awhile and he went visiting friends with my Mom on Saturday for the first time in months.
I used to be a results oriented person. I wanted perfection NOW. I have learned from my Dad that baby steps are just as much of a blessing as miles. At Christmas I decided that I would look forward to spending Valentine’s Day with my Dad. I AM!!!!! Now, I look forward to spending Easter and his 80th birthday with him. It sure makes me appreciate every minute we have together. And he is slowly getting better and better each day too. It is hard to forget the hell that we have just spent over the past 4 months and sometimes I wait for the foot to drop. When that happens I also tell myself that today is today and Opa is feeling good so we won’t worry about tomorrow until it happens.

I hope that you find a bit of encouragement in this.

Caroline

[Terri]

Hang in there we all get scared. Bob was dx aug 03, yes his life has changed and there are days it gets him down he can’t do what he used to. He is RAEB -t – refract anemia with excess blast in transgression. His counts go up they go down. He is tx free though for over two years. But each day he thanks God for giving him this day. We live and cherish each day. Who knows what is in store for any of us. I try to think positive allthe time but then there are those days when I look at my husband and know he is not feeling up to snuff and his counts are off and I start thinking the worst. But that is the worst thing to do, this Forum is my sanity and everyone here gives their support and it gets me through.
According to Bob’s doctor he is doing well.
So we hang on to that.
God Bless

[bhanson]

SusanJ, My husband is 65 and was dxd in December of ’04. He has had health problems for years, also. I did the same thing you did, panic and started looking for some miracle cure. Haven’t found one yet, But…when I found this forum, it is a small miracle at least. My husband had 4 or 5 aranesp shots last winter and spring. That raised his reds to normal, along with the hematocrit and hemoglobin. However, we worried about the whites and platelets. He has since been doing the pineapple and sesame seeds, plus peanut skins tea and his counts are actually higher than when he was dxd. And the important part is that he feels better than a year ago. Each patient is different, but don’t give up, and don’t try to look to far down the road. There is so much more out there for us to try when the time comes.Take every hint from this forum and put it into pratice. Best wishes to your family, Bonnie and Bernard

[diner]

You I guys are a God sent. I don’t know what I’d do without the forum.
Dennis, I really appreciated the link. We actually got away for 3 days and went to the beach, but when I got home I found out I missed a doctor’s appt. We had beautiful weather and enjoyed ourselves except for my huge canker sore and fat lip. I had to stop the juicing for a couple of days.
The link really helped me not to be so anxious.
I’veonly been on a small dose of Thalidomide for a couple of weeks so don’t know if it will help.
I’m still getting a lot of TX’s.

Dee

[Martin UK]

Hi susan, it is possible to live normaly but thr are a few things you have to take into concideration.obviously if the levels drop it will affect stamena, energy, things that healthy ppl take for granted.like walking a dog even a gental stroll around the block that can really tirer you out but most im portantly esspecialy for me with a platlet count of only (2) somtimes (5) and riding a motor bike as well as big boy activitys (40) going on (12) :-). is brusing and bleeding.the secrit is to know yr (limits) and dont be a hero your only hurting your self,take lots of rests it isnt a race.it will only slow you down KNOW YOUR LIMITS anyway i get by on losts of rest and plenty of exercise.my transplant date is t-9 21/3/06
Kings Collage hospital (London)i hope this helps.

[Rackon]

Susan, normal” is not a fixed constant – it is relative term. Everyone is different. But your dad will still be capable of enjoying life – your patience, strength, support and good humour will be very important for him.

I know how you feel – many times I’m terrified too by what I read.

My 86 year old father was on Aranesp for 4 years and did very well on it – it sure beat the heck out of transfusions.

Dad slowed down – he also has has some heart problems – but he takes things at his own pace. He still works part time as a consultant and drives himself around. If he gets tired, he stops and rests.

Alas the Aranesp is no longer effective for him so (we hope!!) he will be on Revlimid soon.

The important thing is to spend time with your dad and enjoy every day you are together!

[Author]

Posts