Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

traveling to Minnesota

This topic has 28 replies, 1 voice, and was last updated 18 years, 6 months ago by Terri.

Viewing 15 posts - 1 through 15 (of 29 total)

1 2 →

Author

Posts
October 9, 2005 at 12:56 am #9174

sarah
Member

Hi everyone, Charlie and I will be going to University of Minnesota, Fairview next week for consultation about cord blood transplant. Charlie is still very weak from his most recent spleen removal. Was concerned about flying with his most recent counts. His WBC 2.0, RBC 4.09, HGB 10.8, Platelets 16, ANC .30 Was also curious about his nucleated RBC’S of 58 which is high? Is it necessary to wear a mask with this low ANC?

October 9, 2005 at 4:51 pm #9175

Neil
Member

Hi Sarah,
There are 2 risks with flying.
The risk of infection increases due to the recirculated air in the aircraft cabin. Has he been been troubled by colds other infections? ANC looks pretty good.
If you get a mask make sure it is more than a dust filter.
I was flying with a WBC of 2.0 ANC of 1.5-1.6 plt of 10,000 without problems, was fortunate to be away from anyone with colds. Had enough frequent flyer miles to get into first class.
Since my WBC and ANC have been lower and only 4 colds in 8 1/2 years and no symptoms of low plts, my doc has told me not to fly over the cold/flu season and only if necessary at other times. Never in an unpressurized cabin over 5000 feet.
The other is the potential for bleeding associate with lower pressure. The aircraft is pressurized and should provide an atmosphere that is safe. If he has bleeding symptoms you might want to look into this a bit further.
In any event his docs should be able to address the questions and provide the necessary assurances. If not they will explain the potential problems in detail.
If you need any help or someone to talk to when in Minneapolis give me a call. Live in suburban Mpls. 763-420-7774 and cell 763-360-5476
will be glad to help with whatever you need.

October 9, 2005 at 5:52 pm #9176

sarah
Member

Thanks Neil for the information and your phone numbers.We will be flying in Tuesday morning this week, appointment on Wednesday morning. Planning on taking taxi to Radisson Metrodome. I understand this is 2 blocks from hospital. They have found 2 cord bloods 4 of 6 match. His bone marrow has become fibrous, unable to aspirate last 2 attempts. Thanks for everything. Hope you are doing well.
Sarah

October 9, 2005 at 7:15 pm #9177

Kathryn
Member

Sarah, just wanted to wish you my best for a safe & successful trip. I hope that every day is better than the last for Charlie.

Love,

Kathryn

October 9, 2005 at 9:17 pm #9178

diner
Member

Sarah,
I pray you have good success with Charlie on your trip.

October 9, 2005 at 9:31 pm #9179

shirlsgirl
Member

Sarah and Charlie,

Good Luck!! Have a safe trip. Hope you hear some positive news.

Take care,

Jody

October 10, 2005 at 1:11 am #9180

Caroline
Member

Sarah & Charlie,

Best of luck on your trip. Keep in touch.

Blessings,
Caroline

October 10, 2005 at 1:21 am #9181

Sandy L
Member

Sarah and Charlie,

Best of luck . We are all rooting for you. Hope you have great news.

October 10, 2005 at 12:00 pm #9182

Harold
Member

Sarah and Charlie,

Godspeed on your trip. I’ll be cheering you on and praying for success.

October 10, 2005 at 1:18 pm #9183

Terri
Member

Sarah, Will be thinking and praying for you and Charlie,

October 11, 2005 at 2:13 am #9184

sarah
Member

Thanks everyone, I will update when we return.

October 14, 2005 at 5:22 pm #9185

Harold
Member

Sarah,
Any news from your trip to Minnesota? Is Charlie feeling better and regaining some of his strength?

October 15, 2005 at 1:26 am #9186

sarah
Member

Hi everyone, we got back from Minnesota last night.Had a very good meeting and consultation with a transplant Dr. He had a tough time traveling, still quite weak from surgery. We have a big decision to make. They say the time has come for Charlie to do something. They are very concerned his marrow has become extensively fibrous. They suggested he come back home at his hemo Dr in Charlotte should start chemo to get blast count down to at least 5%. This will require hospitalization for 4 weeks. Then they want us to come to Fairview University of Minnesota for one week of testing to make sure his body and organs are up to this process. He will then be given 7 days of chemo and 3 days radiation. Then double cord blood transplant. They said if he chooses not to proceed with transplant he will be lucky to live 6 to 8 months. Of course he was told that almost 4 years ago. We know this is progressing. If he decides to go with transplant I plan to speak with my work this Monday and take a leave of absence for up to 6 months. It will be hard not having the income, especially since we now know our insurance BCBS of NC refuses to pay for our travel, lodging or food. They have not even committed to payment of transplant. They are giving hospital a hard time. We do not need this additional stress. One thing the Dr said is because of the marrow becoming fibrous he may have difficulty engrafting. This is a tough decision to make, only one that he can do. It is going to be tough relocating for 4 months to Minnesota, so far from home. You do what you have to do. We are going to make a decision this weekend.

October 15, 2005 at 1:59 am #9187

eve
Member

whatever your decision may be my prayers are with you for charlie’s good health

eve

October 15, 2005 at 5:25 am #9188

Sandy L
Member

Sarah,

Why did you go to Minnesota? Are you following the doctor or the center? We will have to make that decision soon, and I do not know how to select the right place to be. I have started researching all the centers and looking at the success rates of several doctors. Of course the one doing the most is Seattle. ( They also have the best web site ) – Good writing or good knowledge . Keep us posted. I wish you and Charlie the best and I am sure you will make the right decision. Have faith.

What is the name of the doctor you saw? Did they discuss the housing costs? Can you share that with me? Can you use that Angel Flight to save on the cost of flying?
Author

Posts