Well Far Guy has a port. We spent one morning last week at the hospital. The procedure went just fine. Far Guy has known the surgeon for years. After reading through his chart he suggested several times that we make a trip to Mayo. So that is in the works.
The Nurses accessed the port for the first time this week.
He was happier than he looks.
I have the mixing of “the stuff” down pat. This week I learned all about “the sterile field” and the steps in accessing the port….blood returns…clamping on and off…saline and heparin. I am going to make a step by step list this week. I believe the nurses will have me do it with their help this next week.
Am I a little nervous…heck yes. I am sure Lynn will have to remind me how to do some things. I told them all that I won’t do it at home until I feel comfortable.
I can barely look at it without needles in it. I have been known to get a tad dizzy
almost pass out when he has cut his hands…I am not very much help from the floor. If he were someone else it would not be a problem. Once I make it through the first few times… I will be fine. Eventually he can possibly infuse himself.
Why do we want to do it at home? Fewer germs…the germs we have here he is used to. Going in and out of the Clinic every week where there are a bunch of sick people is like Russian Roulette…sooner or later you will catch a bullet. Plus that if we travel someplace we will be mobile. Supposedly each weeks “stuff” will include everything we need to accomplish the task.
Far Guy reports that it was easier and less painful using the port versus an IV.
The side effects of the treatments are extreme fatigue and shortness of breath for about four days. This week it wasn’t as bad because he is on Prednisone for extreme shortness of breath.
The infusions are not a cure…there is no cure for Alpha 1 Antitrypsin Deficiency. The infusion in trials last for 5.9 days plus or minus and protects the lungs from further deterioration. Yes, I have read some of the trials and the results. Fine late night reading.
Oh yes, just so you know when I was doing the final push of saline and heparin he got all wide eyed, gasped, hung his head off on his shoulder and stuck his tongue out. Next time I may put a paper bag over his head.
Amazing when you learn to do things you never dreamed you could. You're a strong lady.
And it's good to hear that he's kept a wicked sense of humor. You're both remarkable.
How sweet, Far Guy was teasing. I take that as a sign of true love! My husband loves that way too. Ornery!
I am glad things are running smoothly. If I may, I will include you both in my prayers.
He is a real card, isn't he? But you know, I do hope that going through all this will help in the long run. We here in Bogland want to keep the Far Family as healthy and happy as possible forever! I know I'm not alone in this wish, dear Connie. Maybe you'll start a new career as a nurse! :-)
Far Side, you are getting to be a medical professional! The procedures you have to master are very serious, it sounds like, and you are brave to do it. I agree that being at home for this is better than going to a clinic or hospital and being exposed to all kinds of viruses and bacteria. Far Guy has been, and is, brave, to go through all these medical procedures. What a challenge for your "golden years"!
All this is very hard and I wish for you both, courage and strength. We all are behind you both 100%. Please keep us posted on how things are going.
Practice makes perfect. You'll do fine.....
The port will definitely make things easier for both you and Far Guy.
Once you get the hang of Far Guy's infusions you will do just fine. I agree, medical procedures on loved ones are daunting at first, but practice brings confidence. Glad there are treatments available for your hubby and I hope this one is successful.
I am thankful the procedure for the port went well and glad to hear from FG it is less painful. Bless you for learning all of this. Daddy had an immune deficiency and we were all scared to death of germs, so I understand your desire to do this at home. Prayers for you guys. xoxo
Wishing you well, and a short learning curve. :)
You'll do fine on this job. It's worth all the effort.
Glad Far Gay is doing so well---- you will do a good job when it comes time.
You're very brave.
If he's going to wind you up like that I'd go with the paper bag. Draw a smiley face on it!
You are both in my prayers. God bless.
I don't know you do it! Sounds like you're a good nurse though. That is a lot of stuff to learn. Good luck to you both.
Oh that humour of both of yours is going to get you through this. Hug B
Oh my goodness! I might have had a heart attack if my husband had pulked a prank like hanging his head and sticking his tongue out. Make sure you don't use a plastic bag. On a serious note, I had port experience with my daughter for a different situation.
Well, at least he still has his sense of humor! Sometimes, that's all that's left to get you through the rough times.
Yeah, a trip to Mayo would be a good thing. Never hurts to double check your options.
Sometimes life requires us to do and learn things we never expected we could do. You are experiencing one of those "learning opportunities' You will master it.
Wishing you both the best.
You are very brave to "try this at home." As you say, these things do get easier as they become routine, and it's great to keep your sense of humor. I'm glad to hear a trip to Mayo is in the works. If you need a stopping off place to and fro, if I'm in Minnesota my house is practically on the road to Rochester and I'd love to have you.
That's great that he has retained his sense of humor. My husband has not reached that point yet, but I'm hoping soon. What Linda says above is so true. I'll be praying for both of you. Have a wonderful week!
I remember Dagan had a port in his neck once--can't remember now what it was for. Collapsing veins, I think. It is amazing what you find out you can do for someone you love. And we humans are tougher than we look. LOL! So glad the port is in. You'll have time to learn how to do it on your own. Yes--take copious notes. ;) Looking good!! Be so much better to be able to do that at home. I agree. You sure can pick things up in hospitals and clinics. Have a great week! :)
Thank you Cynthia that is very kind of you! Hopefully the appointment will be soon so you keep enjoying that Low Country life:)
Hi, it has been a while since I visited and have tried to catch up with all happening with you guys. You are in my prayers and love FG's sense of humor. My hubby has had his trials and tribulations for 2 years now and is on a feeding tube. We do what we will and God will help us through. Hugs, LJ
Practice makes perfect, and it will be so much more convenient to do it yourself! All the best to you both, these are tough times for you.
My wife's friend has refused a port for now. She does get to take a break from the needle as she only goes in once every three weeks. I don't want to tell the whole story of my past but I do know that you will be able to handle that port with ease. Understanding the concept as to how to keep it from clotting shut is the most important and that won't happen after you learn the process to maintain it once a day.
It's amazing what we can do when we have to. I'm like that with going to the doctor as I have no immune system to speak of and so I am pretty much a very healthy recluse. It's so great though that you can do it and then you won't have to travel either during the winter and like you said, you aren't dependent on them.
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