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The #$^&@*# waiting

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

First we waited for test results. Then we waited for referrals. Then we waited for more test results. Then for all infections to clear. Now we wait for transplant.

Met with the transplant coordinator today. They don't think my husbands health will hold out for more than a few weeks while waiting for a donor.I'm staring at my cell phone obsessively willing it to ring. The average wait for a transplant is over 300 days. Still, I'm a believer in miracles, after all, we've come this far and he is sick enough to be at the top of the list for his blood type. He is in a regular hospital room and out of ICU, responding well to dialysis, and is 70% mentally clear with 30% active hallucinations from the toxins in his blood. (got some interesting stories, for sure)

I find myself out of patience with him when he's lucid because he's been such a PIA when he's not. Then I immediately feel guilty, and selfish, because I know so many of us are going thru this with our loved ones, and so many more of us have lost our loved ones to this terrible disease.

The statement that cancer sucks is beyond inadequate!

3Mana
Posts: 829
Joined: Aug 2010

Penny,
This has got to be so stressful for you. They say "all good things come to those who wait" and hope he doesn't have to wait too long. Don't feel guilty for getting impatient with him, cause I think it's probably a normal thing. It's so hard to watch someone you love suffer, so try to think positive and just keep letting him know you love him and he should keep fighting.
Don't know how I would've felt if I would've been in that position with Tom, but never got the chance. When he hemorraged they said he probably was gone in a couple minutes, but to this day I always wonder what was he thinking and did he know that he was dying? Anyhow sorry I'm rambling, just hang in there Penny. "Carole"

Noellesmom
Posts: 1293
Joined: Aug 2010

You really describe exhaustion and caregiver fatigue very well, Penny. Wish I could be there to help you out in some way.

Praying for the miracle, too.

Please try to get out and away from the hospital if only for a short walk, although a long walk would be better.

Thinking about you, Penny, and hoping you get a break and some rest.

Hugs.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

It's natural to want the partner that we have known, to be the way we have known them to be. After all, haven't they always been there to work together with us in resolving an issue? What saddened me the most was knowing that at moments I would have to make decisions, I would have to find comfort elsewhere, in God, family and friends. Realizing that my love was not capable of these things and that it would be up to me. And yes, I began to selfishly ( I felt at that moment, not anymore) want him to not hallucinate, to be lucid, to talk to me, to tell me how much he loved me! But I now know it is natural to feel these things. Who wouldn't want that? Patience is relative. You can be patient for your order at a restaurant. It is oh so much harder to wait for the miracle! I will be praying for calm, strength and "patience" for you, Penny. I will be praying for your miracle.

Lucy

1Teresa
Posts: 68
Joined: Dec 2010

Im sorry if this is inappropriate... but we do have the magic of the internet at our disposal nowadays, and craigslist is hot everywhere..... Um, maybe try posting your husbands blood type and stuff he needs in the death and dying group on CL????? I appologise if I am offending anyone, but these are desparate times......

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

The waiting sucks. Waiting when it's not totally in your control is enough to drive you insane. I know how it is with getting snappish. All we are doing is arguing and I hate it.

Keep your chin up.

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

hey Pennymac my dear friend,
Sorry you have reached the bottom of this journey, but.....there are some positive things happening here. Out of ICU, responding well to dialysis, 70% mentally clear. Be thankful for this. Keep fighting. The only place to go from here is up, so keep climbing! We love you both and will continue to pray. keep us posted.
Tina in Va
God bless the hospitality people, they are there for you!

bluetopaz
Posts: 10
Joined: Jan 2011

Hi Penny. I am new here and I feel for ya, sister. My hubby had a rescue stem cell transplant and before that he was near death...mentally confused also. The sitting in the hospital for hours and hours and days and days is so draining. Does the hospital have any support groups? An exercise area? I found that if I was rejuvenated somehow I didn't lose it around him. Our hotel (he treated 500 miles from home) had a pool and I swam every day at some point as the natural endorphins really helped. If this isn't possible someone suggested a walk. Don't be hard on yourself...this is SO hard and you are doing great. Take care of YOU because you can't take care of him if you aren't well. Hugs to you.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

There's an exercise room at the hospital hospitality house where I'm staying. The only exercise I'm getting is when I wave at the machines as I dash by.

I know it would help to exercise, but I'm so tired all of the time, I'm even waking up tired now--he's been in the hospital for a month and a week, and we've been in Richmond waiting on a transplant since the 14th of December.

There are on call therapists here, which I have made use of, I'm in 12 step recovery and I've been able to get support at meetings, my mother in law is here helping me. I'm just really really REALLY tired and frustrated, and have had a few bad days in a row. Thanks for the encouragement.

Welcome to the caregivers site, by the way. Sorry that you had to find us, but glad that you did.
Penny

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Penny

You are not alone as a caregiver you dont have much time to look after yourself, eventhough
all the so called experts tell you to. Before my wife got sick I would walk 2-3 times per day to keep the weight off, but now I just cant get or leave her alone. Being tired all the time is very common doesnt matter how much or how well you sleep, you wake up tired do find you are waking up in the middle of the night a lot, I know I do.

Hang in there the best you can we are all together in fighting this demon.

John

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Hi Penny

Just wanted to check in and see how things are going I hope you are getting some positive news with Mike and his battle.
Thinking of you and wish you all the best and have my prayers.

John

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