Mikey and me.......

[Marley]

Good morning all (VERY early)

I'm going to start posting in this section since I'm a caregiver like y'all.  
(see "other medical conditions for a background)  I could use a buddy.  


My man is still in the hospital dealing with shortness of breath.  They are dialysing him every day except for Sunday's and he is holding his own.  The neph, who we've been seeing for a few years now and have a good relationship with, told us that Mikey's heart is too weak to support the new valve, the tear is in his heart wall where they had sewn the new valve in place.  The hole is making the blood go into his lungs, which is causing the breathing problems and in his opinion, no heart surgeon would touch his heart right now.  Pretty grim news.  So Mike had decided to stay in the hospital for as long as they keep him and once he got home, he wanted to stop dialysis.  In other words, he was going to come home to die....not acceptable to me!!  
Then his heart surgeon was in on Monday morning and said to him he wants him to do dialysis every day for 2-3 months and then he will go back in and take another look at his heart and see if he would be able to do the surgery to fix the hole.  He talked about sewing on a piece of cadaver so the stitches will have a better "anchor"---this is what I got out of the conversation.  The surgeon came in VERY early on Monday morning and I didn't get to hear, or ask any questions.

Here is our issue:  Our trusted neph tells us how weak his heart is and that there is a lot of calcification around the valve, which is why it tore open, basically his heart is too weak and "this is probably it".  We've known this neph a long time and Mike trusts him.  Then comes the surgeon who says dialysis every day and "well take another look".  Now my man is wondering if the surgeon is really prepared to do another surgery or is he humoring him and giving us false hope?  Know what I mean?

I'm all for the holding out hope for surgery, it sure made a difference in my man's attitude yesterday!! It's a terrible thing to take away one's hopes and shoot a person down like that.

I know I'm a strong person, but sometimes the walls start closing in on me and I could just scream!!  I told him the other day I would feel a whole lot better if I could just kick something.......already kicked the &#%$ out of my other harddrive, haha, didn't do any good eiether and I hurt my toe.....but this man of mine is such a strong force in my life and a lot of people love him too.  He's always looked out for me, always tells me he loves me every day and just totally fulfills me and makes me a better person for being with him all these years, I know I'm a lot more knowledgeable now.  (he should have been a history teacher, he has always told me stories and events and has a way of making history SO interesting)
Life is much more happy and fun with him around.  But his poor body is really struggling and we both thought his heart was healing and mending---up until last week.

I don't know how long he will be in the hospital and I don't really think he will stop dialysis once he comes home.  I don't think he's ready to give up yet, thank You Lord!!!    I'm going to ask his doc to order him a hospital bed for home.  Like most people on dialysis, he's got horrible insomnia and actually sleeps a lot better in the hospital, so I'm thinking (hoping) it's the bed---he can sleep with his head raised---makes breathing a whole lot easier.

It's late and I better at least try to get some sleep---talk about insomnia---that's where I'm at tonite.  If you've read this far, thanks--hope I didn't ramble too bad.

Marley
 

[paris]

Marley         We will all hope and pray that after a couple of months, his heart will be ready for surgery.  HOPE--- one of the best words in our language.  Sending you lots of love and hope   

[petey]

Marley,
  ...that's what I'm thinking about you now.  I hear you and feel your pain.  I've been through similar, and it's hard.  I'd hold out for the surgery -- some hope is better than none.  Miracles happen every day, and maybe a couple of months of good dialysis will allow Mike's heart to be strong enough for surgery.  Luckily for me, Marvin has never talked about wanting to stop dialysis (though I have thought many, many, many times, "If it were I who was going through everything Marvin's going through, I'd give up!")  My Marvin just refuses to quit -- God love him!  If he ever said he wanted to stop, I don't know what I'd do.  One part of me would scream, "NO NO NO," but another part of me would say, "How much more can this man take?  Do I want him to keep going just for me?  Am I being selfish?"

Yes, yes, yes...ask the doc for a prescription (why it takes a prescription, I don't know) for a hospital bed.  We have one (haven't had to use it for a long while), a wheelchair, a walker, and lots of handicapped "rails" around the house (especially in the bathroom).  Anything that we can get to make Marvin's mobility and overall independence easier, I insist on getting.  Our hospital bed was provided through a home health agency (with a doctor's prescription).  It was paid for through Marvin's insurance.  Marvin, however, doesn't like to use any of these "aids" because he wants to do everything for himself.

Marley, a caregiver's role is an exceptionally difficult one.  Be brave.  Be strong.  Hang in there!  It seems to me that my caregiving stamina has been tested many, many times.  It is often late at night when it hits me and hits me with how overwhelming it can sometimes be.  Usually, I feel better about it in the morning when the day breaks and the sun shines again.  I believe that a part of my purpose in life (a big, big part) is to be here for Marvin.  I think God gave me to him because He knew that Marvin would need me.  That helps me cope ... and sometimes, that's the only thing that keeps me hanging on.

Love you...thinking about you...praying for you and for Mike...hoping that tomorrow will be better.

petey (Marsha)

[monrein]

What a really nice post Petey.  Marvin and Mikey are both very lucky men to have you two women on their sides.   I'm sending hugs Marley.     and flowers too.

[G-Ma]

petey and marla...two very strong women.  Hugs to you all.
A friend of mine in TN had a 9 bypass in 1990.  Since 2000 he has had 10 percent heart function.  In 2001 a surgeon asked to try a new procedure which was using a laser to punch holes in the heart walls to increase the usage.  After much prayer, they okayed it.  Dr went in, did one hit and blew a 4 inch hole in the heart.  They patched up what they could and called the family.  Read all the dates everyone.  This man will be 78 in January, still living at home, a little slower than he used to, rests more, still the biggest tease in TN.  He now thinks he might have to start dialysis. Used to be a police officer in Chicago and last year went to the firing range and passed his test to carry his weopon as a backup to other officers.  There are miracles every day.

[Marley]

Petey---what a super nice post!!  You talk the same way I feel, like God made Mikey for me to take care of and to love him.  He's been through so much and I've thought the same thoughts you have, am I being selfish by wanting him to stay with me even though he feels miserable??  I've told him that if he got to the point where he wanted to stop dialysis, I would support his wishes.  I won't like it, but I promised him.  Since this new hole in his heart and the terrible shortness of breath he's dealing with now, he knows he can stop dialysis---we both agree that's a better way to go than not being able to breathe!  So he has that option.

I picked up some soft tacos before going to the hospital so Mikey and I could eat dinner together.  He said he felt alright but he looked pretty pale to me.  Right after we ate, his nurse came in with his pain pills and shot--within 10 minutes, Mikey was drifting on a big puffy cloud with his eyes at half mast....comfortably numb.    His doctor ordered IV pain meds for his breakthrough pain and it's made a big difference, now he can get some better rest.  He waited until after we ate dinner to tell me his neph said he could go home Friday after dialysis!!  Then he gave me one of those Mikey grins that just melts my heart.  So tomorrow will be one buisy day for me.  I have a list for his doc to help me out with and one of them will be to write a script for a hospital bed.  I know he'll get much better sleep in one.  Hey, do those beds come in a wide size?
I'm really missing laying down with him and cuddling--if his bed was wide enough....  Get rid of my couch and make room for my new one from my Aunt then have the hospital bed brought here.

Soooo, I'm going to make his favorite dinners, get all "prettied up" and get him into his bed....hmmm, thoughts have drifted.  Stupid neuropathy makes walking very hard on him, but he's got to get some exercise!!  I know a few and he can sit in a chair while he does them, some arm ones too.  I'll "work out" with him so it won't be so boring--nobody likes working out alone and once we get into the habit of walking, we'll look forward to them---that's the rumor going around anyway.  There I go rambling again!!

I can hardly wait for him to be home again!!  This house is so empty feeling when he's not here.  When we're living our "normal" and things are running smoothly, I love the MY time I have while he's at dialysis.  I don't have to cook anything unless I'm hungry or do the things I do for him every day.  When he's in the hospital and I know they're taking good care of him, (and he's not critical) I breathe a sigh of relief because I can rest........sometimes I feel guilty for feeling this "whew" feeling when I'm here alone and vegging on the couch, but I know I need this time to myself to recupperate from this sometimes hectic life we live.

G-Ma, what an inspiration your friend is--9 bypasses??  I've never heard of anyone getting so many and after surviving a 4" hole punched in his heart, he is a true miracle!!  .......I believe!!

Have a great night everyone and THANK YOU for all your support and prayers!!

 

[G-Ma]

Marley..you will do fine.  Do not feel guilty about your whew moments...you need them, I have been there and I think cuddling is probably the best medicine for both of you.
Ann

[pelagia]

Dear Marley and Marsha, You are both amazing gifts to this world.  I am always inspired by couples that "make it work" no matter what.  Your love for your husbands shines through with every post.  Linda

[willieandwinnie]

Marley and Marsha  . My caregiving has eased up somewhat since transplant and I want both of you to know that we are all walking with you, every step of the way. 

[lola]

Marley, can't your social worker get some of the things(bed) ordered for you? You have enough on your plate thinking about getting "prettie" for his return. 

[petey]

Marley,
I sometimes (no, actually, almost always) feel guilty when I have "whew" time.  I know I shouldn't because I NEED that hour, that 30 minutes, etc., to let my body unwind a little and charge back up -- and you shouldn't feel guilty, either.  But, it's easier said than done.  What I do is, during a "whew" break, try to convince myself that this time and this physical and emotional rest will make me able to help Marvin more later.  Sometimes I actually believe myself, and sometimes I don't.

The one thing that Marvin and I both hate about a hospital bed is that we don't get to sleep together -- no sexual thoughts there -- just snuggling next to him, touching his arm, etc. is what I miss when he's in a hospital bed.  One time, he had to spend almost a month sleeping in the hospital bed in the den.  The first few nights, I slept on the floor beside him.  Then, a spent the next few nights sleeping on the couch across the room from him.  Finally, I had to give up and go back to our bed (this body of mine isn't what it used to be).  I gave him a bell and whistle to "call" me if he needed me, but I still found myself getting up every hour to check on him.  Those were not restful nights for me.  It was soooooo good to get him back in our bed!  (Those hospital beds aren't wide enough for both of us -- we're both "fluffy" people and he had a wound vac on, so it wouldn't work to try to crawl in there with him.)  But...a hospital bed in the den was A WHOLE LOT better than a hospital bed in a hospital.  Keep thinking that!

I have found that the first week Marvin's home after an extended stay in the hospital is the most tiring for me.  We have to adjust to his being home again, we have lots of visitors coming in, there's extra "work" from our normal routine, and he needs me to do a lot more for him.  Make a sign that says, "Mike's resting.  Please do not disturb" and hang it on your door when he -- or you -- need the time just to be alone or when you just don't feel like talking to or looking at anybody by Mike.  Those who truly love you and care about you will understand the sign.  Those who don't understand it don't matter anyway.

Get some extra rest tonight so when you bring him home tomorrow you'll be ready to go, too!  I'm so happy for you  .  It's the best feeling in the world to have your sweetie in the same house with you again.

[willieandwinnie]

Marley, petey summed up things that I have also felt. Len spent 6 months to the day in the hospital in 2001 and we had a hospital bed brought into our living room. I tried sleeping on the couch because Len had a small bowel feeding tube and was on TPN and the alarms would constantly go off during the night. After about 4 weeks, I couldn't do it anymore, I was exhausted from lack of sleep. My daughter got me a baby monitor that I sat up on the bedside tray with Len and I slept with the other half. I so missed just hearing him breathe or even snoring next to me. My home looked like a hospital, dialysis machine and RO in spare bedroom and hospital bed, walker, wheelchair in livingroom, shower chair and rails in the bathroom and handicap ramp out front. This went on for almost 3 years and many night I cried myself to sleep. Please take petey's advise and rest at every opportunity you get and accept help from others when it is offered. Caregivers need lots of rest. Enjoy having Mikey at home and take one day or one hour at a time. We are here if you need help. 

[pelagia]

Add Kathy and Amy to my list, too! 

[rose1999]

Just caught up with this post and wanted to send love to both of you  .  Don't give up HOPE, sometimes it is all we have but sometimes it is all we need to keep us going through the bad times.  I hope good times are not far away for you.
 

[Marley]

How long can a person live with a hole in his heart and leaky valves??  I read his echo results and daaaamn, I don't know how he keeps going!!  He's regurgitating blood from his mitral valve, (where the hole is) he's got Aortic regurg. AND his tricuspid valve shows "moderate to severe regurgitation", so that's three valves that are leaking!!  and What the hell is ('seen throughout both lungs') "hazy airspace disease"  His chest x-ray didn't sound so good eiether and along with this new thing, it showed diffuse pulmonary edema--oh yea,--and his heart is enlarged.  My poor baby!!!  I had called the dialysis clinic yesterday to check on him and his nurse and I were talking.  She told me he was really out of it today--he has been off and on--and she told me that with his heart so compromised, his brain isn't getting enough oxygen and that's why he will sometimes talk and not make any sense.  I was scared he was getting some type of dementia!! 

Oh man, he looks so sad right now, he's lost weight and I hadn't noticed until today with him in the bed and shorts on, his legs are so skinny and I can feel his shoulder bones when I hug him.  He's really scaring me this time, I'm hoping and praying he can make it back from the edge one more time.

He slept all day today and I had to wake him up to eat and then he'd go right back to sleep.  He can hardly take a few steps without getting winded.  He's been wanting to go to our fish store to get a new pump for his tank and asked to go after I picked him up after dialysis on Saturday.  We got inside, found the pump and a few new fish and he got very pale at the check out counter.  He went for the front door but collapsed in front of it and was breathing too fast.  The owner of the store helped me get him into the car and as soon as we got home and he put on his oxygen, he started felling better.  Five minutes later he was asleep.  He scared the krap out of me, but I held it together pretty good until after we were home and I got his oxygen on him, then I started shaking like a leaf in the wind. 

[willieandwinnie]

Oh Marley, I am so sorry for everything you are going through. My Len has mitral valve problems and pulmonary problems also. You need to tell his doctor to prescribe a portable oxygen system. Len had one that was the size of a purse and carried it everywhere, at night we hooked him up to the one that plugged into the wall and made oxygen from room air. I hope you are getting some rest and taking care of yourself. Please know that we keep you and Mikey in our thoughts and prayers, always. 

[pelagia]

 

[monrein]

Hugs to you both.

[lola]

Marley, I wish you lived close I'd run and give you a great big It's so hard to watch someone we love get so sick.

[petey]

I wish Marley lived close to me, too.  I'd be on your doorstep right now, Marley, with a hug and a shoulder to lean on.  I've got you and Mikey in my thoughts and prayers.  I'm praying God will make Mikey better and will give you strength.

[annabanana]

Marley,
I know how very difficult it is. It's unbearable to see your true love so sick and be so afraid to lose him.
How to cope? I don't know. We just do. That's all. Every moment is precious, even the whew times.
 

[Sluff]

  hope things get easier.

[paris]

Oh Marley, Mikey is fighting so hard.  And you must be exhausted from all you are doing and from the worry.  I'll keep praying for both of you.   Sending you both love and good wishes   

[willieandwinnie]

Marley,  doing some research this morning on other issues, I read some of Len's paperwork and it says, "idiopathic pulmonary fibrosis". They do chest xrays on him every 3 months to see what changes are happening. Was Mikey on a ventilator for a long length of time by any chance? Len was for about 6 months straight and then probably 5 or 6 times for a couple of days here and there. From what I have read, this tears the lungs up (it is something when they use it to save their lives  ).

Len has the mitral valve leak also and in 2002 the cardiologist did the heart cath and during the procedure, he snaked a device called a duct occluder, it's like an umbrella, it is suppose to close the leak around the mitral valve. Len was awake through the whole procedure and watch what the doctor was doing a television monitor.

I thought I would just mention the stuff I am reading about and maybe it will help you with something. I have been at this since about 3 am so I'll be ready for a nap later. 

[Marley]

Things got harder around here since my last post.  Mikey has continued to get weaker and more confused.  (This confusion has been going on for months now but mostly has been "on and off", never lasts this long!)  His aide was here Thursday and she could really tell a big difference in his behavior.  He fell as we were getting him ready for a shower and we both thought it oculd have been a seizure, maybe.  I called paramedics and they did a CT in the ER, which came back negative, so now his docs are stumped.  Friday was a nothing day as well as Sat and Sun---seems like everything shuts down in hospitals during the weekend!!  VERY FRUSTRATING!!!  I'll be talking to his doc in the morning to ask about having a neurologist seeing him.   I just don't accept "I don't know why he's doing this", so call in another doctor!! 

W&W--Before he came home from the hospital the last time, the home oxygen was set up and so was the hospital bed, the medical supply place brought them both at the same time.  (someone's got they're %#$@ together!)  Also, last month when he was in ICU, he was on the ventilator for only 2-3 days before they extibated him, thanks for asking.  He also has Cardiomyopathy, which makes his heart weaker so I'm thinking the option for a 'duct occluder' would be out.  That's the problem with his new valve, his heart isn't holding it together good enough because it's so weak.  I'm living one day at a time.......

You guys are awesome and I want you all to know how much I appreciate your support and friendship.   

Marley