need medical help/advice

Xplicitlnck

Xplicitlnck

Well-Known Member
Jan 2, 2012
4,030
Long island ny
Boat Info
330ec
Engines
Twin 7.4 straight drive
Well last Sunday my little sister (23) woke up bruised from head to toe. We bright her to the hospital and her platelet levels were extremely low along with white blood cell counts. She spent a week in the hospital being given transfusions and being on close watch. Her last transfusion she was tested at 42000 platelet count and .6 white blood cell count. That was sunday. She went in today and her counts were 6000 and .4. Her body can't produce nor hold them. Doctors have no idea what's wrong with her. Marrow biopsy was done its not luikimea but that's all they can say. They released her from the hospital because she's more susceptible to infection there and her white blood cell count is so low she had a better chance of staying healthy at home. Some scary stuff. At this rate her white count will b at zero in 3 days if the dropping stays consistent. They can't keep giving her transfusions, her body may start to fight them (so they say ) so this leads me to the question of is there any hospital doctor or anything of the such anywere in the country that is known to fix things like this. The hospital can't even point us in any direction there only answer is bone marrow transplant which involves radiation and or chemo therapy before hand. Not happy about that. Any help is much appreciated need to get this fixed before it's too late. Say some prayers please
 
Don't know what hospital you are dealing with but I would give the Cleveland Clinic or a similar type hospital a involved.
 
So sorry to hear about this...

The Mayo Clinic here in Minnesota is the best. She needs a second opinion ASAP. If at all possible I would get her on a plane and get her here to see a hematologist. She needs a second opinion ASAP. I was diagnosed with late stage non-hodgkins lymphoma in October 2007 and went to Mayo for treatment. I started chemo in February of 2008 and I've been in remission and 100% healthy ever since then. I go back to Mayo 3x year for follow ups. I can tell you from experience that they are by far the best.

I was originally diagnosed at the U of MN and they did not get the diagnosis completely accurate and they recommended a minimal treatment. I then went to the U of Nebraska Medical Center for a 2nd opinion and they gave the correct diagnosis. After getting home to MN I went to Mayo for a 3rd opinion. Mayo was the only one of the three that I trusted and they're treatment plan made the most sense to me. It wasn't a blanket treatment plan, they took my whole situation into account and tailored a plan for me. This plan was different than the other 2 places and I'm confident that I would not be in remission today had I made a different choice.

I won't name any names but another CSR member has been flying out to Mayo from the east coast after falling off his boat and breaking his elbow, wrist and shoulder. Considering his occupation and the fact that he chose Mayo, I would consider that a high endorsement.

PM me with your contact info if you would like a referral to Mayo. I will call my doctor and have him reach out to you.

Prayers are going out for your sister and your family....
 
Last edited:
I am not a doctor or medical professional of any sort, and I don't play one on TV. However, several people in my life have been touched by various conditions..as you're trying to do, getting an accurate diagnosis is key.

Places to call: Mayo Clinic, MD Andersen, St. Jude Children's Research, LiveStrong, to ask for guidance from their navigators. Even though St. Jude specializes in children's treatments, they may have lists of resources that handle blood disorders/other conditions for adults. Same with LiveStrong--treat it as an information source.

I'm not familiar with the northeast/New England region of our country, but I'm sure there are similar resources in your area that have specialists.

A thought based on searching the symptoms you noted: http://www.mayoclinic.org/diseases-...openic-purpura/basics/definition/con-20034239

https://www.pdsa.org/about-itp/in-adults.html



Sending warm thoughts.
 
Prayers on the way as well. Same thought as trflgrl, look at ITP as a possible cause. The low white count is a bit of an outlier tho, PM me if you want to discuss further. Very experienced with ITP.


Sent from my iPhone using Tapatalk
 
I am a healthcare architect not a physician but can tell you all advice above is great and you probably need to consult with specialty physicians at an Academic Medical Center. In your area NYU Langone Medical Center in NYC and Brigham & Women's / Havard Medical School in Boston are top medical research centers. Also Sloan Kettering in NYC is one of the top cancer centers in the world but I don't know if your sister's condition is cancer related. Best of luck and prayers to your family.
 
Thanks everybody. We have an appointment with alone Kettering in manhatten today. After we can what they say I'll report back and move forward. Thanks again to everybody very helpful information so far
 
Prayers go out to your sister and all of your family.

I'm sure your greatest hope is that someone has heard of something similar and it would point the medical professionals in the right direction. I do not have that for you, but having been a caregiver for someone with a rare disease over the course of 11 years I would offer 3 pieces of advice.

Someone needs to be the advocate for your sister as she moves from one doctor, hospital, shift....whatever to the next. You may be the only one who remembers what tests, medicines, etc... have been good or bad as the days go by. Medical professionals are very dedicated but they can do their job better with the aid of your (or a family members) memory. There will quickly be too much data for each nurse, hospitalist, phlebotomist, etc.. to keep total track of. It will enhance the care of your sister if someone in the family provides a common thread.

Buy or borrow a digital recorder and use it. Sometimes the conversations happen too fast to remember the details.

Trust your instincts and be ready to ask for a second opinion. This has been mentioned already but many times it is uncomfortable to say you are going to do it and tougher to follow through. Stick to your guns and don't worry about hurting their feelings.

Best wishes.
 
Thinking about you and your family. Thoughts and prayers to all. Please keep us posted.
 
Myelodysplastic syndromes

My dad had this. Same symptoms as your sister. I had to fire his doctor and take him to mine to get it diagnosed. It is not a common diagnosis so a lot of docs don't even consider it. There are various causes and they often treat symptoms to determine the cause. My dad had a lot of exposure to dioxin, which appears to be the cause of his. I truly hope that I am wrong and it is something simple. Godspeed.
 
Thanks again everybody. She had another infusion today. Nothing good came out of the tests. All clueless.
Equilit.
She has her boy friend with her through everything. He is a murse (male nurse) and he's very closely monitoring every move the doctors make. He also carries his kit to take her blood and so far he's the only one that pokes her worth any needle. Hasn't missed yet. He also caught a few mistakes they made already. She also has my mother with her through everything and let me tell you she is not scared to penn her mouth and hitter anybodys feelings. She's a very persistent one.

Highs license
I will ask them to test her for dioxin. Anything is worth a shot right now so thank you

My sister is also a registered nurse. She only started maybe 6 months ago so there thinking maybe she caught something somehow on the floor. She had Mano a few years back bit they ruled out that Epson bar or whatever its called. We also had a big scare a couple years back. I really don't remeber the symptoms but they tested her for sars. came out negative but they never figured that one out either. Maybe linked maybe not but that one just went away.
Her only other symptom was her liver levels were way down as of 2 Mondays ago but then came back up to normal levels by last Friday.
Again any thoughts advice comments are welcome even if there far fetched.
 
You must log in or register to reply here.

Forum statistics

Threads
113,256
Messages
1,429,424
Members
61,135
Latest member
Gregger
Back
Top