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Comment by Dave on August 4, 2012 at 2:14am

Ashley,

In my 57 years I have lost my way enough times to write a book. Actually, at the height of my sorrows I became quite mentally unstable, was under psychiatric care, and journaled about it. While it may not make you feel any better now, please know that there is hope. It's just that sometimes hope takes a bit longer to become reality than we wish...and it's hard work.

The following are a few excerpts from my journal, "A Little Left of Crackers" (from a decade ago):

- "To see clearly into the mind’s confusion, is to live each day with the agony of not knowing the answer to even a single question, yet always seeking it."

- "I am, at once, the instigator and the foe, the attacker and the adversary."

- "It is difficult for me to express how I feel without feeling like I am whining."

- "I can’t be angry with God and not believe in him at the same time."

and

- "Hope is the feeling you have that the feeling you have isn’t permanent." (J. Kerr)

Comment by Cisco on July 27, 2012 at 9:28am

You are both in my prayers Ashley. As others have said, it will get better. In addition to talking with the coordinator, you might also have a chat with the social worker. These folks can generally come up with some good suggestions.

Comment by Claire on July 16, 2012 at 9:10am

Hi AshleyRose, 1 month on is such early days. I too had Type 1 Diabetes from the age of 11 and this gave me kidney failure at the age of 30, 2 years almost to the day that I was diagnosed I had a kidney & pancreas transplant in Liverpool, UK. I then had 2 months of trouble and developped every possible complication that I could so spent 8 weeks post transplant in hospital. It then took me a few months to recover and get my strength, stamina and confidence back but I started full time work the following January and 13 years later I am still in the same job with an excellent attendance record and am still enjoying being very healthy. I also got married 4 years ago and 3 years ago had a gorgeous healthy baby boy (he's in my avatar) at the ripe old age of 42. So you see, what at first might seem like a hopeless, never-ending awful situation for everybody (and I mean for you too as I can really appreciate how this must all be affecting you, My Mum looked after me and it was both a mental and a physical strain to be the carer of somebody who was as ill as I was) can actually turn out to all be more than ok in the end. You are on the home run now, try to stay positive, things do get better butit takes time. email or PM me if you want to ask any questions, I'll be happy to answer them.

Claire

x

 

Comment by Ono on July 15, 2012 at 5:26pm

Like everything, there are good masseuses mediocre ones and bad ones. I found a good masseuse on yelp, carefully reading the comments.

Pedicures are great and a good foot massage is heavenly !

 The point is doing something to help release the tension. Emotional tension as well as physical is stored in our bodies. Sometimes just doing deep breathing exercises can help too.

Take care of yourself.

Comment by Walt on July 15, 2012 at 11:20am

The roll of a caregiver is to provide support.  It can be very difficult to sit by and not be able to do anything but be available to provide assistance, support and love.  Quite often caregivers forget about caring for themselves. This is altruistic and noble, but is also detrimental to the caregiver.  You need to take some time out for yourself and recharge.  This doesn't detract from your support for the patient, but it is necessary to help you have the energy to continue to support him in the future.  As you have seen, this is not a short journey and you need to take care of yourself so that you can better take care of him.  Pity parties are fine, if they are short and infrequent.  Find a way to vent some of the frustration and don't let it build up to a breaking point.  The two of you will get through this and both of you will be stranger for it.  Best wishes and I hope that you see minor signs of progress everyday!

Comment by Judith on July 15, 2012 at 10:00am

Hi, Just read your blog.  When I had my transplant, I had everything go wrong that could.  I had 3 surgeries in the first 2 weeks, then 2 rejectiions, was in the hospital 3 months with problems in the first 3 months then back in the hospital with infections evrery month for the next 2 years.  They finally had to remove my native kidneys.  I had so many problems with the drugs that I ended up with 3 heart attacks, 2 eye diseases, Gout, Hypothyroidism, Lactose Intolerance, Extremely low Potassium,

bad Anemia problems (which both of these conditions cause extreme fatigue), foot problems till I couldn't walk   Like you, I actually got mad at God, thinking why can't he make it stop.  My Pastor told me that it was ok to get mad, just don't stay mad and I continued to pray and ask for prayers.  I had 12 really tough years.  I then got Shingles really bad in my head and they had to change my anti-rejection meds and I started to improve.  I am now 21 years 8 months out.  I still experience days of bad fatigue, but on those days I just take it easy and drink LOTS of water.  I cherish each day, do exactly what the doctor says and enjoy life.  Without the transplant I would have no life.  My point is, no matter how bad it seems, hang in there and stay positive.  If things aren't right, contact your coordinator right away.  Labs usually tell the story and get help.  It will turn around but don't just think it is supposed to be this bad.  My doctors and coordinator was on top of everything and I have been treated for so many things, but they bring me through it.  Some people have it easy, but some of us don't.  We are still the lucky ones though!!  Good luck and God bless!    (When my husband and son had cancer it was much harder on me than my illness is on me.  We can't bear to watch someone we love hurt!)

Comment by River on July 15, 2012 at 12:01am

My wife still gets days when she needs to lay around and sleep most of the day. She asked her doctor about this at her one year checkup and was told "You just had a major surgery a year ago, give it time."

She has had lots of ups and downs in the year since she had her transplant.  It hasn't been easy to say the least. But overall her quality of life is much better now than it has been in many years. It was worth it.

You probably have some rough days ahead of you yet, no way around that. But a year from now life will be better for both of you. Not perfect, but better.

I think one thing that helped us a lot was conecting with people that were going through the same things. We stayed at the Gift of Life Transplant House for several weeks after the transplant and made some good friends there. I know it helped me a lot to see a friendly face and have someone to talk to when I ended up back there a few times later on. We still keep in touch.

I understand the anger. It's like someone is taking the person you love and hurting them bad. You just want to hurt them back. But there is no one and nothing to blame. No place to direct all that anger. Yea, I know what that feels like. Some people suggest going outside and screaming. I've done that. It helps. Break a few things too while you are at it.

 

It also helps to write stuff down. It makes you put things in order and figure out what's really going through your mind. I wrote lots of stuff, and then just deleted it. It's a good way to get it out of your head. Put it behind you and don't dwell on it.

Comment by AshleyRose on July 14, 2012 at 10:53pm

Ono - I am a windows down, radio up (way up) kinda girl.  I usually try to use this as kinda my release.  Even if it is just running to Walgreens on yet another prescription refill.  I also love to get a pedicure. I have only had one massage in my life and it actually made me feel like crap.  I was down and out for almost 2 days afterwards.  But it sure felt good at the time.  And I could probably use one. I have knots the size of almonds in my shoulders. I will try to get out and do something soon, as soon as he gets to feeling a little better.  Right now, I don't leave home for long.  Unless it is for work. It being so far away is a disadvantage.  But when I am not working and he isn't feeling great, or even ok, I can't bring myself to go do enjoyable things.  I just spend the entire time thinking about what he is doing or if he needs anything.  Then the guilt sets in....

But I am looking forward to a good pedicure sometime soon maybe. And they have those massage chairs you sit in...ahhhh. :)

Comment by AshleyRose on July 14, 2012 at 10:34pm

Thank you guys so much for your comments about your experiences. I just finished reading them to him.  He told me earlier, "I just want to feel better".  I am hoping sharing these with him will help his outlook :)

 

Comment by livecam on July 14, 2012 at 8:24pm

We've all heard reports about how much better someone felt just after they woke up from transplant surgery.  That was not the case for me.  I had 3 months off work for the transplant and recovery and during that time I was grateful for being off dialysis but I can't say that there was a magic moment when I suddenly felt full of energy and completely restored.  It takes time to start feeling better.  Your body has been through major trauma just from the surgery and the powerful drugs you must take to keep the transplanted organ from rejecting.  In the case of a kidney if you've been on dialysis your body has to learn to be "normal" again with increased fluid intake and changes to a more normal diet.

So, be patient because it takes time.  Don't expect an overnight change with transplant.  In time things usually get better.  For now, relax.

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