Not the news we wanted

Today we got a call from the hospital where Hubby "applied" to be part of the transplant program.   Our current hospital was willing and ready to start the process of getting Hubby on the transplant list (he already met with the transplant doctor), but our insurance wouldn't cover a transplant there so we had to move on to hospital C.  Today hospital C told Hubby that they won't even start the process until he is at the weight he needs to be for transplant.  He has worked hard and lost a lot of weight, Hospital B saw the progress he was making and was pleased enough to start the process.  Sadly Hospital C won't do anything, except allow him to go to the informational class, until he loses the weight.

I'm devastated.  Losing weight is difficult for the average person, but add to that not feeling well, doing dialysis, and trying to work full time.  I know he can do it, but how long will it take?  How many years will he have to continue dialysis without even the hope of a transplant?  I am thankful he has dialysis to keep him alive, but transplant has always been the goal.

I guess it will be a while before I'm able to share the transplant process with you.  I do hope you will take something away from this though.... if you are over weight, lose the weight.  Trust me, I know how hard it is, I'm fat and I hate it.... but we never know when we will need life saving medical care and it is devastating to think that weight can stop our lives from being saved.

No one said this would be easy

I don't think I believed that everything would be ok, once Hubby started dialysis, but I guess I hoped.  Each month he goes back to the hospital to meet with his dialysis team consisting of a nutritionist, dialysis nurse, doctor, social worker, and blood taker.

The doctor wasn't pleased with how his exit site is healing, but the nurse felt it was looking pretty good.  Since I clean it and see it everyday, I have seen the improvement since the surgery.  I think Hubby is just a slow healer.  Hubby is also still experiencing some issues he had before dialysis and that dialysis should have helped with, the doctor is waiting for the blood work to decide what changes will be made.

This morning we got an email from the nurse about the blood work, it isn't good news.  I'm not sure why I thought it would be smooth sailing after starting dialysis.  It is an every day challenge.  Every day there seems to be a new "thing" to worry about, think about, consider.  Don't get me wrong, dialysis is still worth it.  I have my husband alive and that makes all the rest worth it!

I mailed the packet to the new hospital on Tuesday, they should have received it on Wednesday, so now we are just waiting to hear back.

Something that I have started doing to make set up easier, that I would like to share with you.... Hubby uses two different bags a night for his dialysis.  They are each a different strength, I have started opening the boxes and putting the two bags together that he will need that night and stacking them in our bedroom.  That way I just grab the one box and get to work.  It sounds simple, but it has actually made quite a difference in setting him up each night.  Over time the prescription of the strength will change, but for now this simple step has really helped.

Hubby's first day back at work

He is physically exhausted, but he did make it through the day.  He is also tired and doesn't want to eat much.  He will only be working 4 days this week because of his regular monthly appointment with his dialysis team.  Many dialysis patients aren't able to return to work, so we are thankful that he made it through today.  I will let you know how he does after a week of working.  There is hope that you or your loved one can work, even on dialysis!

After a phone call to the hospital today, the packet is now ready to mail off to the hospital!  Day 5 of working towards getting on the transplant list.

Day 3 of getting Hubby on the transplant list

Today in the mail, his packet arrived.  It contains three forms to fill out....

New Transplant Candidate Information sheet
Kidney Acquisition Registration Form
Insurance Authorization and Assignment Form

They are all pretty normal information to be requested... family history, your medical history, insurance information and so on.

I'm hoping they will be filled out and mailed by Monday.  I'm not sure of the timeline to get an appointment after they get the packet, but I will let you know how it goes.  Every place will be different, but hopefully this will give you a little bit of an idea of what to expect.

Reclaim a piece of you

If you are the care provider, you are probably feeling all sorts of emotions.  It isn't easy physically, mentally, or emotionally, but we do it because we love them.  Between Hubby not working, the surgeries, appointments, classes, medical bills, and the rest of my life that continued on despite the fact I was tired and wanted it to stand still for just a little bit, I lost myself.  I was so consumed with everything that I needed to do, had to do, that I did nothing for me, nothing to ensure that I would keep on going, nothing that gave me a moment to be just me.

It does sound selfish, doesn't it?  Here someone we love is suffering and I'm making a post about me.  Recently I have realized that I am important and I need some time each day.  You are important, your loved ones need you to be ok, so you need to take some time too.  For each person that time will vary in length and in what you do.  I recently started cross stitching again.  It is something so simple, something I did for years and years.  Something I started doing for Hubby (that's a story for another day) and it is something that gives me time to reflect, pray, and feel at peace.

Since I started cross stitching again, I feel like I'm slowly coming back, that I'm not just a shell of a person that is on autopilot.  Find the time to do something you enjoy, something that will take you back to a time when you felt at peace.  It can be going for a walk, reading, praying, writing, painting.... anything.... give yourself time and know that you aren't being selfish.... you are taking care of yourself so you can be the best care provider possible for the one you love.

You are important too, never forget that!

"May Cottage" by Country Cottage Needleworks

First step

Today Hubby took the first step in getting on the transplant list.  He called and referred himself for a Kidney Transplant at a hospital that will take our insurance.  Two hospitals, one when he was first diagnosed and the one where he currently receives monthly care for dialysis, were unable to start the process of putting him on the transplant list because our insurance won't cover a transplant there.

Hubby had to leave a message, but within an hour the person in charge called back.  She asked for basic information... address, reason for kidney failure, insurance, and stuff like that.  She said the first step was for her to complete this information by talking to his nephrologist.  Next she would mail him a packet to fill out and send back, then finally she would call with an appointment after reviewing the packet.

We will call this Day 1 of getting on the Kidney Transplant list.

They may not tell you

They may not tell you that the machine may alarm.... every night.... forever.  When hubby first started peritoneal dialysis the machine alarmed and alarmed and alarmed.  After several appointments and a scan of his peritoneal catheter using dye, they decided that the slow drains were due to the knotting of the catheter in his lower peritoneal cavity.  After the procedure to correct that issue, we thought we were good.  Sadly we weren't.  It did stop the leaking, but the alarming and slow drains continued.  We tried adding heparin to the bags and at times it seemed to help, but there was still alarming.  Hubby has changed positions and tried other suggestions, but it still alarms.  Some nights we are blessed and it only alarms once, but other nights it seems to be constantly going off.

It wouldn't change our decision to do peritoneal dialysis, but it is something I think people should know.  The machine will alarm... it happens... you aren't alone, but we are only one family going through this, so maybe most don't have alarming... that would be interesting to know.

Recently hubby mentioned the alarming to his dialysis nurse and she pretty basically said, it just might be the way it is for him.  I can't complain, the machine keeps him alive!

Even though alarming is normal for us, please let your nurse or doctor know if you have issues with alarming, it could be something more serious that needs their attention!