Prayer Request for My Mother

By BeckyJ Latest Reply 2009-10-09 22:41:15 -0500
Started 2009-09-17 21:51:40 -0500

I know that this is a little off topic but I have come to think of ya'll as family and with our recent situation I couldn't help but think of turning to ya'll for support. I just found out that my mother is going to have to go in for a procedure tomorrow. She was recentely diagnosed with Porto Pulmonary Hypertension (proPH). They have to start a central line into her clavical and then attach a med pump that delivers the drug "Remodolin". Without the medication and immediate action the doctor's said that she would be gone from us in as little as 6 months and that it would be "immediate sudden death". We found out about the proPH while she was undergoing tests to see if she is elligible for liver transplant. She has been in stage 4 liver failure for 5 years and they believe that she has actually progressed to end-stage. Without the transplant she only has about another year left. All of this is terrifying to me. With my bit of nursing background…I have some home health aid experience I know the dangers ahead. My family is on pins and needles to see if this new treatment works. If successful after 8-12 weeks on the Remodolin she will then be eligble for transplant and will be considered Status 1…meaning she will be on the top of the list. I am asking for prayers to help us is this upcoming storm. Of course this has got my BG's even more out of whack and I am also asking for any advice to help keep them down in the VERY stressful situation. God Bless to everyone and THANK YOU in advance.

29 replies

BeckyJ 2009-10-09 12:37:28 -0500 Report

I've been offline for a while trying to deal with all the new changes and getting the house in order. It's amazing how much builds up. Now that I have to keep the house hospital clean I spend a lot of time picking up. We got our first shipment of the monthly medical supplies for Mom's therapy. I came in a huge box and took me almost 2 hours to put everything away and the cost…$12,000. I think we've got this down now but some days it's a little overwhelming. Looked in to getting someone to come out and stay with Mom while I have my PT for my Back but they wanted to charge us $30-$40 an hour. YIKES! I will be arranging late therapy and only going once a week instead of the 3 times they suggested. Dad can come home early on those days. For now we're all in the adjustment phase but it doesn't feel as overwhelming. I am just soooo thankful that I am able to be here and help out.

Pat Roth
Pat Roth 2009-10-09 22:41:15 -0500 Report

Wow!!! I wish and PRAY so much for your sweet spirit to have the strength to meet the needs of others, and YOURS TOO! Don't forget, if you get down, that leaves only someone that can come in to help out—-can't SRS help, send a nurse, a house cleaner, someone to help with baths? We have a nice Home Health here in our little town!!

Bless you!!! Love and hugs, Pat r

BeckyJ 2009-09-28 12:33:57 -0500 Report

Well, things are still looking up. Everyone seems to be healing up well and we got word from the hospital that my Uncle Steve seems to be holding his own. They were able to give him some pain medication this morning since his oxygen saturation was up. He is at least out of pain now. Mom is feeling a lot better and we are looking forward to possibly getting out this week. Grandma sees the heart specialist this week too so her A-fib should be settling down soon. God Bless everyone who has responded with such encouragement. We are truly blessed.

Pat Roth
Pat Roth 2009-09-28 23:22:42 -0500 Report

Well, God Bless ALL of you too!!! It is tough when so many family members go down at the same time!! Hope and pray that life continues to be uplifting!!! Nighty-night PAT R

chucha 2009-10-08 17:03:33 -0500 Report

It is a blessing for you. Prayers are still with you. You keep taking care of you and keep those sugar in tack.

BeckyJ 2009-09-25 13:25:02 -0500 Report

Update: Grandma made it home LATE last night. They had to take the trip home slow. So many specialist came to look at her and she is sore everywhere from all the prodding. The gash on her head is better and the neurologist cleared her, there was some slight bleeding just under the skull but that cleared up with no long lasting damage. Took 9 staples to close the wound and she is more concerned about ruining her new perm, lol. The ortho people say that her shoulder will heal up fine in a couple weeks but to take it easy. All the stress has got her heart in a uproar and she is now having problems with her A-fib again. Seeing a specialist on Monday. As for Mom I am constantly amazed at her strength. She is tired but in great spirits. Only side effect of the new medicine are chills so the house is 79 and she has a fleece jacket on. We go back to Kansas City on Oct. 28 to see if there has been a change. Only one sad moment. We got a letter yesterday from the transplant team turning her down for consideration. Until the ProPH has cleared up she is considered a bad risk. She had a bit of a cry over that but soon bounced back. My youngest niece is coming to see PawPaw and MeMa on Sunday after church and that should lift everyone up. Looking forward and up to God. Thank you all for your prayers and support.

Pat Roth
Pat Roth 2009-09-25 20:10:22 -0500 Report

You are so welcome, Becky—I was just wondering how she was!! I don't know too much about your situation, but just know that God does, and will always be there for you and your family!!

I am a bit frazzeled so will sign off and out, throw my clean clothes in the dryer, and go set a bit before going to beddy—bie!! Best of fortune to you and yours!!! HUgs, Pat R

SusanJ 2009-09-24 11:53:40 -0500 Report

I will be keeping all of you in my prayers. it is good to see that your mom is doing beter. How is your grandmother? Please keep us posted on how all of you are doing. Keep looking to the Lord for strength He will always be there.
Susan 2009-09-24 11:45:41 -0500 Report

I'm sorry I have'nt been on the site much lately, so I have missed out on the begining of your prayer request's. But now that I have ran across it you and your mother will both be in my special constant prayers. God Will move for both of ya'll, I am a firm believer in God and his marvelous works!

BeckyJ 2009-09-24 10:08:18 -0500 Report

Update…Sorry it's been a while. Mom is now home and doin well. We had her first dressing change last night and that was a little painful but she's already showing improvement with the ProPH. I have a nurse coming out next week to train me a little more but thankfully I am already pretty sufficient in changing bandages and mixing the medication. She is just going to go over more of the features on this style pump. THANK YOU, to everyone for your prayers and concern. My sugars are finally starting to cooperate because the stress is less and I started sliding scale with my Apidra. I had an 104 last night and felt like I was gonna die, I've been high for so long it felt more like a 50 to me. I am just hoping it stays like this for a while.

Moondancer426 2009-09-24 10:37:10 -0500 Report

Sounds like things are settling down a little but I will keep you and yours in my prayers anyway 'cause you still need them. Keep taking care of yourself!!!

BeckyJ 2009-09-24 10:44:26 -0500 Report

Thanks, I am finally starting to see the light at the end of the tunnel. Mom even started a wish list of things she wants to do once she starts feeling better. She has been housebound for over a year and the first thing on her list is to go out and have a spa day. Manicure and Haircut by someone other than me. I try but I ain't no professional. LOL

Darly 2009-09-24 11:46:52 -0500 Report

I am so sorry for everything you have been through Becky! Looks like your mom is a fighter,that is good. I will keep you and your family in my prayers. Very happy that things are starting to settle down with your BS also!


BeckyJ 2009-09-21 10:53:13 -0500 Report

Mom is in surgery now…expected to be in for at least another hour. Doc's are convinced that Dad is trained on how to change out pump and keep everything sterile but hospital policy is not to release the patient until they are also able to understand. She is having some difficulty understanding so we are hoping that they will still release her tonight since Dad and I are both trained.

dancing girl
dancing girl 2009-09-20 14:22:13 -0500 Report

I believe in prayer and in GOD. I will pray for your mom and i hope she believes in God also .. I have seen so many miracles happen for those who believe in him and that he can Heal people … The real doctor is JESUS and I believe she will live longer … God Bless and hope things go well…

BeckyJ 2009-09-20 13:23:51 -0500 Report

Update: Mom is doing great. They have already upped the dosage on the medicine. They are saying that the higher dose will help her faster. The only problem she is having is with her RLS and they won't let her take anything for it because it may mask the syptoms from the Remodulin. Surgery is scheduled for tomorrow to put in the Central line. They wanted to try it out by IV to make sure she had no major side effects. So far so good, her nurses and even the doctor are amazed at how well it's working already. On another note, My Grandmother took a spill down the steps at their vacation home in Lake of the Ozarks on Friday and has been in the hospital in Columbia, MO to make sure she only has a concussion and dislocated shoulder. They will be sending her home today and she is NOT looking forward to the 4hr drive home. They have to come home because my Uncle Steve is in a specialized nursing home here in Wichita and the Hospice nurses are telling us he is getting worse and could go at any time. When it rains it pours huh! Thank you, Thank you, Thank you for all your prayers. This place has been such a help in keeping me distracted from all the worry going on right now. I know that God's hand is upon us right now and that he will never give us more than we can handle but every bit of help I can get from here and through the people at church has made the situation easier. God Bless you all and your families as well. Becky

lfaamom 2009-09-20 13:59:46 -0500 Report

Hay remember God's blessings is everywhere and he will watch all your family,your grandmother,your Uncle Steve,especially your mother. I&my family will continue to pray for all your family members. Keep in touch with us.OK let us know how thing are coming along. lfaamom

chucha 2009-09-20 05:07:53 -0500 Report

My thoughts and prayers go out to you,your family and especially your mother. Take care of yourself

lfaamom 2009-09-20 11:09:41 -0500 Report

Beckyj, I hope that you keep yourself in check. Don't let your stress get to your BS and you wind up getting sick too. I will be praying for your mother and your family. Keep all of us at DC inform about your mothers health. We love you and we will be praying. lfaamom

BeckyJ 2009-09-19 14:55:03 -0500 Report

I just got word from my Dad that they are waiting until Monday to insert the central line. For now they have started the medication in an IV to see if she tolerates it. She is doing well and in good spirits. She has undergone chemotherapy in the past for cancer (beat it both times) and was imagining it would be that bad. Other than some flushing in her face and extreme fatigue she is in no discomfort. Remodulin seems to have some bad side effects so thay wanted to make sure she could handle it before they did the procedure. So far everything is going great. My Doctor would not let me travel due to mmy BG's being so unstable but I am in touch with them by email and phone so I just have to have faith that everything will be fine. Thank you all for your prayers and concern. Waiting to see her is the hardest part but they should be home next week.

salmanda 2009-09-19 15:02:49 -0500 Report

I will keep your mom in my prayers. I hope she tolerates the drug she needs to make her transplant possible. I hope you are able to keep your sugars down as well.

Bekki Diabetic
Bekki Diabetic 2009-09-19 13:44:59 -0500 Report

You all will be in my prayers during this emotional time. Please let us know asap how the procedure went and that you and your mother are alright.

hbkunkel 2009-09-17 22:47:35 -0500 Report

I will keep you and your family in my prayers. What an awful thing for all of you to go through. One thing that might help your BS is to get out more and walk away your stress - easier said then done but it wshould help you. Try to get your rest and be vigilant about your diet in these hard times - comfort food and stress eating will do a number on your bs. Keep us posted.
Hugs, Betsie

Pat Roth
Pat Roth 2009-09-24 17:37:09 -0500 Report

These ares some of the same strategies I use for stress, Becky, walking, then rest, eating regular, sensible meals and lots of water to flush the worries away—-Best of Luck to you and your mom!!! lol, PR

dyanne 2009-09-17 22:21:34 -0500 Report

I will keep your mom and your family in my prayers. I'm sorry for what you are going through… It has to be very very difficult. I wish I had advise for stress and your bs but I"m having the same problem myself. It has been running over 200"s and I'm very upset over it. How high have yours been ?? Good Luck to you and just keep praying.
God Bless,

BeckyJ 2009-09-18 12:17:36 -0500 Report

Right now they are making a liar out of me by staying around 116 for the last 8hrs. Before that they were pingpongin from 487 to 49. Thankfully I have close contact with my PA, she is just an e-mail away. We are doin adjustments daily and that is why we are talking about sliding scale w/carb counting in preparation for a possible pump.

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