mom could use a few prayers

[patti]

Hi folks,

My MIL will be going in for two separate procedures over the next two weeks. She will have a PICC put in on 8/3 and seven days later a port put in and the picc line removed. If you think of her, please pray she doesn’t get any infections and no excessive bleeding. They will be transfusing HLA matched platelets for the port procedure as we’ve been unable to figure out the family donation thing here. The doctors aren’t very helpful with that. They just don’t want to mess with it. After the PICC is in she will start 7 days of neupogen shots. In order for a port to go in she has to have ANC’s of 1000 (she’s at 400) and they’re hoping daily neupogen shots will get her there. If not, she’s stuck with a picc which no one wants (not even the doctors).

As a caregiver, this past week has been just shy of hell for me and my kids. I will never fully grasp how you all do it and keep going. I feel like I just can’t….

Thanks.

Patti

[Jerry]

Patti …

Debbie and I will be thinking of your MIL and praying for her numbers to come up so that she can have the port procedure that she needs. We will also pray for a recovery to better times for her. Good luck.

Jerry

[Neil]

Hi Patti,
We added your MIL — and you —to our prayer list. Hope she begins to do better soon.

[patti]

Thanks, guys. Much appreciated. I think life will be much better after she has an access for blood draws and transfusions.

patti

[franm]

Patti:

I have a feeling I understand what you are going through. Husband who is 74 is having a Port put in Monday. He had a Picc and he did get an infection.

We hope and pray for you MIL as well as my Husband Jim.

Fran

[jeff b]

Patti,

We will keep your mil and your family in our prayers. I know it is often as hard on caregivers as the patient. As well I will ask my mother to add everyone going through MDS to their prayer list. From what she has told me she has people from IL to Texas and Florida to California praying for me.

Jeff

[bety]

Patti, Your mil will continue to be in my prayers…especially with regard to prevention of infections and bleeding. Take care of yourself. You will need considerable strength if you are to continue being helpful. I am sure we all empathize with you and the family.
All the best, bety

husb, 86, dx rars 7/03. Pancytopenia. Rx: arenesp, neupogen, upcoming first tx.

[Engel]

Patti,
We will keep your MIL and your whole family in our prayers. When my husband had the line put in he developed an infection and a blood clot it was a very difficult time for us both, all is well now but he is still on coumidin and that is not good. Blessings, Gloria

[Susan C]

Dear Patti:
I understand how you feel. I am spending 18 hours a day at Patrick’s bedside. I will pray for your MIL, could you please let me know her name? I’m relatively new on the forum so I don’t know. May God bless and keep her strong as well as her loved ones.
Britt aka Susan

[lucym]

Patti,
My Mom has had several PICC’s and now she has a porta-cath. One time her plt count was below 5 and they removed and inserted a new PICC. She did get an infection they have been giving her IV antib. in the doctors office so she did not have to go into the hospital. I will continue to keep you both in my prayers. As for the family donations, the doctors were not very helpful I had to arrange it all with the blood bank. The doctor only needed to fax the order for blood and plt transfusions. My Mom received a patient and file number and then we just made an appointment with the directed donor line. Who is the blood provider in your area? Is it the Red Cross? If I can help you at all please do not hesitate to ask.
Lucy

[patti]

Susan,

My MIL’s name is Helen. Hang in there with Patrick. It’s a long road but others have done it before us and succeeded.

Lucy, I still don’t know where our hospital and clinics get their blood. We have a big red cross right in town but I also see hospital couriers always transporting the blood so I don’t know if the hospital has its own blood bank or if they’re transporting from the red cross. None of the doctors I talk to seem to know (or even care). Mom is going to need at least 2 units of platelets they said and both of her boys (and the grandkids) are willing to donate. Just need to figure out how to get it all done. She won’t need them until the 10th so I think I still have time to work it out if I know what steps to take. Is there a department of the hospital to call? Do you know which one? I think once I can figure out where they get their blood from getting the rest of the info should be easier.

Thanks

patti

[uno grasshopper]

Patti:

Ask the phlebotomist taking the blood for your MIL’s type and cross where the type and cross it done. Follow/trace where that little blood sample tube goes, and you’re bound to hit where the blood comes from. It shouldn’t be hard too find. Someone has to be ordering the blood in that hospital.

Just wondering why they want to insert a PICC “first” before a port? And “only” a week space of time? Why not just poke for her platelet transfusions just before she’s ready to get the “final” port. It’s only one more stick, no? If her whites never reach high enough, “then” consider the PICC instead of having it “just in case.” That way you don’t have to get 2 central lines and risk ruining another vein. My PICC clotted off that vein from my elbow to my armpit. For some reason I’m not seeing the benefit to their reasoning there. Also, when they put in my PICC, afterwards they sent me out to get an X-ray to make sure it’s sitting in the right spot. Does that mean that they’ll x-ray her “again” when they put in the port a week later? I personally try to avoid any x-rays. But that’s me.

Take care,

Marla

[Caroline]

Patti,

I hope that all goes well for you MIL. I’ll continue to pray for all of you.

You might want to try and ask the head of the blood lab at your hospital or get in touch with the Red Cross in town and ask what steps you need to take and where the blood comes from.

Also…you CAN do it and you WILL. When you feel like you are about to give in…ask for more strength. You’ll get it.

Blessings,
Caroline

[Terri]

You are in my thoughts and prayers as always.

[patti]

Marla,

I was very against “let’s do the picc first then the port.” I’m okay with it now – but I wasn’t in the beginning. They want to get a picc in because she’s due for another transfusion (if her 3 week schedule holds) and they want to have a place to do it (other than her current single vein). They do not have enough time to give her a weeks worth of neupogen before placing a port because of the transfusion timing. They will be placing the port in her chest at her collar bone under the skin so it shouldn’t effect another arm vein. I think most of the decisions were driven by the fact that mom does not want her next transfusion via vein. She just feels like too much damage has already been done and she is very unwilling at this point for someone to try and poke her again to get blood out. When I said they came up dry, I mean dry. Not a single drop. She’s very adverse to doing that again. She is sooooo badly bruised from that last week of pokes. More than ever before. Which goes back to that liver thing you and I chatted about….

As for switching to a port – they’re crossing their fingers they’ll be able to do that because no one really wants her to have a picc line. For which I’m grateful. At least the radiologist doing the work agreed with us and not her doc. Also, he didn’t say anything about having to do x-rays. He said they use ultrasound to do the picc and not sure about the port. They have this special office/surgical place where all he does is these procedures so I don’t know. He didn’t say anything about having to have x-rays or go to the hospital. He actually told me he avoids doing these in the hospital whenever he can because he feels like that’s just a walking infection waiting to find a new picc or port that was just placed to plant itself. At least the guy is smart that way. I have to say, of all the docs we’ve talked to in two years (AMA docs, I mean) this is the nicest guy I’ve ever talked to. I’m thankful for that.

Patti

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