dont give up

[bochs4]

As excited and happy as i am today about the news we received from my brothers doctors, i dont want to celebrate here cause i know there are alot of you going through some pretty tough times. I am writing to share our experience because when my brother was sick it seemed as though there was no hope. I turned to this website daily to read about other peoples experinces and wanted to share his.

My brother(Jeff) has his ATG(horse) in Dec.2010. After going home he developed an infection in his arm and was in ICU for 3 weeks. At one point they were ready to amputate. It literally came down to a surgeons decision not to do it becasue he was sure he couldnt stop his bleeding when he didnt have any platlelets. It was up to Jeff and god to beat this thing. After concluding that his infection was ecoli and it was most likely coming from his own body they restarted an antibiotic that they were trying for 2 weeks that wasnt doing anything. They were giving him the anti fluid drug lasix to try and keep this fluid off that he was retaining. He gained 90 lbs in 6 days. Slowly day by day we started to see improvent. Over the next 6 days he lost all the weight he gained and about 20 more. The next 30 to 60 days after he got out of the hospital were brutal on him. They were trying to wein him off of the prednisone and his legs and joints were killing him. His was getting either platlets and hemoglobin everytime he went in which at the time was twice a week. After 60 days post ATG his numbers didnt seem to be be doing alot, his docs were confident that the ATG wasnt working.

We are now roughly 180 days post ATG. Today his numbers were platelets-102 hem-11.5 and whites 2.6 w/60% neutros. His platelets jumped 50,000 in two weeks. His docs were high-fiveing in the room. I know his fight is not any where near over nor will it ever be but at least he can lead a somewhat normal life.

I remember when we first found out and what was involved, i think i researched for 2 weeks straight. There were never enough answers. All i can tell you is this. THERE IS ALWAYS HOPE! Dont ever give up. Keep your faith and will to live. If there is any part of our experience that might help you please dont hesitate to ask. Keep Fighting everyone

[freedom99]

bochs4;
We celebrate with your brother Jeff in being brought back from this downward spiral.
Yes, there are never enough answers in these situations and I know with MDS it gets wild when looking for answers because with today's internet there are so many answers and often I have to draw back from search and seeking and allow myself to look at the whole picture.
These forums definitely help a lot.
You must have a good set of doctors and medical support people. A blessing to be sure.
This is one major problem with low platelets in that a patient who has low platelets and needs critical surgery the options are limited.
What an awesome report.
All the best to Jeff.
Stand strong and keep the faith.

[bochs4]

Thank you for reminding me, I forgot to mention his four-headed monster team of doctors. I cant say enough about the docs and nursing staff in the bone-marrow failure disease unit at St Francis hospital in Beech Grove, In. Thanks to them Jeff is coming home to South Dakota to visit next week.

[Neil Cuadra]

Bill,

We wondered how you were doing since we last heard from you 3 months ago about your brother's ATG. What great news! Congratulations to Jeff and to your whole family!

Doctors have to stay calm even when their patients face serious problems, so you sometimes don't realize how invested in your care they are, but when they are giving each other high-fives you know just how much they were hoping for success too!

Don't be shy about celebrating here and reporting both good and bad news. There will always be somebody better off and somebody worse off, and it helps when we tell it like it is. Celebrating a great recovery gives us all renewed hope.

Keep up the good progress!

[bochs4]

Neil,

A big thank you to you to for all that you do in keeping this site up and running. Like i said it was my number 1 resource for info during our family's journey. I would always read your respones to patients that had questions. Thanks again for taking your time and energy to help educate people that have been faced with this horrific disease.

Back when Jeff first went back into the hospital for his arm is when we went to Indiana to be with him. The doctors had kind of wanted us just to stay put until he his white counts were up. But when the infection came we knew that it may be our last hours with him so we went to be with him.
Well all that did was stir up problems the moment we got there. One very important lesson that i learned in Jeff's 3 week stay in ICU was that i couldnt posssibly have been prepared for what was about to happen. I would have thought that my family would be calm and handle things professionally. But when it came time to make decisions about his life we were as unprepared as anyone. I told Jeff that his disease was one catastrophe but it led to a another catastrophe with the damage that out of control emotions did. All i could think about was how we could possibly be thinking about ourselves in this terrible time. How could we be making things twice as hard on him? I still cant figure it out to this day. You mentioned the doctors and emotions in the same sentence. Well now jeff's doctors are trying to treat his illness and they have a tug of war going on inside of his family to deal with. So yes your right those docs were very emotional but kept them in check when we couldnt. I could see that Jeff had bonded with them like he does almost everyone he meets. The day that they had to send him to the orthopedic hospital they looked as sad as anyone esle in the room. They along with some of the nurses from the other hospital came to see Jeff everyday for the next few days. In the end i was sure that there wasnt a better place or team of docs that would have been better for him. So i guess all i can say to families that are new to this is stay calm and keep the focus on the patient and their recovery because if you dont all you are doing is adding more stress to their ordeal.

[freedom99]

Hi Bill;
Amen to that.
Talking openly about one's situation is so important and brings deliverance from the stress buildup.
That's why it's awesome to have many different people on this forum, some who know the technical parts, some who know the doctors part, some who know the medication part, etc and also some who are good at simply to listen and encourage.

All the best and stay strong

[bochs4]

Well after 3 weeks another big increase in numbers. Doc said he is on the low side of normal. Pl-138 whites-3.2 hem-12.9. Just 3 months ago he was getting transfusions once or twice a week. He only has to go see the doc once a month now. It sounds as if they wont start his taper until about the 12 month mark. Hang in there everyone,

[paulaespada]

Yes, there is always hope.
I just posted a new thread about my husband.
I believe we must share the good news because it can help who is going through hard times.
Reading other person's success stories helped me to help my husband.
Congratulations!

[bochs4]

Well here we are 9 months post(horse) ATG. Platelets 115 hem 14 and whites 4.7 with 70% neutros. It was exactly 1 year ago that a doctor told him that they couldnt find anything wrong with him and that there wasnt any use in running anymore tests. (huh) Still havent figured that one out yet. Platelets came down a little since Aug appt. I talked to him a few times before he went in and he had been feeling a little tired lately and kind of had a runny nose. He was a little worried that things may have been going the other direction again. He will celebrate his 40th b-day in Sept. He is kind of anxious to start the cyclo taper but docs say not until after the first of the year. Take care everyone

[bochs4]

Wow here we are 2 years later. I am very thankful to report Jeff is off all meds and had his port removed last week. Numbers are all normal and monthly appts changed to every six months.

Reading some of the newer threads sure brings back a lot of memories. All of the questions we had. In one appt. our lives went from pretty normal to a pretty grim diagnosis for my brother. Who knew that the weeks and months to follow would not only be a test of Jeff's strength and will to live, it would also be a test of our family's strength, faith, and love.

Thanks to all of you who take time out of your lives to give blood and platelets. Without you I would not have my brother. And thanks to you to Neil for keeping this site going.

Take care everyone stay strong and don't give up

[Heather8773]

Bill thank you I love your post!

I am so happy to hear about your brother! It's inspiring to read a story of love and faith!
I am also thankful to those who are selfless and give blood. Because of someone we don't know w B+ blood my husband was able to have a transfusion!!

Please keep us updated
God bless

[LoveRapheal1]

That is wonderful news for your brother. Infections are scary and this is why I stay in this room. I avoid crowds and sick people. I was told I could catch a fever from hugging someone. Other doctors have told me that I am allowed in restaurants. I am afraid of catching an infection from bacteria. I would rather be safe and stay home. I am sure it is important for everyone to eat healthy clean food free of bacteria to keep our immune systems functioning. I have read about infections and how dangerous they are.
Good luck to your brother and his battle with this. It seems he somehow had the will and strength to fight it.

Originally Posted by bochs4

As excited and happy as i am today about the news we received from my brothers doctors, i dont want to celebrate here cause i know there are alot of you going through some pretty tough times. I am writing to share our experience because when my brother was sick it seemed as though there was no hope. I turned to this website daily to read about other peoples experinces and wanted to share his.

My brother(Jeff) has his ATG(horse) in Dec.2010. After going home he developed an infection in his arm and was in ICU for 3 weeks. At one point they were ready to amputate. It literally came down to a surgeons decision not to do it becasue he was sure he couldnt stop his bleeding when he didnt have any platlelets. It was up to Jeff and god to beat this thing. After concluding that his infection was ecoli and it was most likely coming from his own body they restarted an antibiotic that they were trying for 2 weeks that wasnt doing anything. They were giving him the anti fluid drug lasix to try and keep this fluid off that he was retaining. He gained 90 lbs in 6 days. Slowly day by day we started to see improvent. Over the next 6 days he lost all the weight he gained and about 20 more. The next 30 to 60 days after he got out of the hospital were brutal on him. They were trying to wein him off of the prednisone and his legs and joints were killing him. His was getting either platlets and hemoglobin everytime he went in which at the time was twice a week. After 60 days post ATG his numbers didnt seem to be be doing alot, his docs were confident that the ATG wasnt working.

We are now roughly 180 days post ATG. Today his numbers were platelets-102 hem-11.5 and whites 2.6 w/60% neutros. His platelets jumped 50,000 in two weeks. His docs were high-fiveing in the room. I know his fight is not any where near over nor will it ever be but at least he can lead a somewhat normal life.

I remember when we first found out and what was involved, i think i researched for 2 weeks straight. There were never enough answers. All i can tell you is this. THERE IS ALWAYS HOPE! Dont ever give up. Keep your faith and will to live. If there is any part of our experience that might help you please dont hesitate to ask. Keep Fighting everyone