All Blog Posts (195)

This poem was about when they put a Pacemaker/Defib in my chest pretransplant. That small machine scared me so much it was almost all I could think of.

Defibrillate

Defibrillate I'm floating on, a sea of quiet.

Suddenly I am in, a chaotic riot!

Now drifting back, into sweet quiet.

Doctor said,…

Hi everyone.

I am returning from San Fransisco to Minneapolis today.  I spent yesterday at the Thoratec HQ in Pleasanton.  They make my Heartmate 2 LVAD.  While out there I was asked to share with them my blog and was asked about what other blogs I follow.  Anyway, I shared my blog with them.  I would really appreciate it if in your travels, some folks out here might check it out.  What do you like, what don't you like?  I was asked a lot about connecting LVAD patients and…

Just a few hours after I posted the first message, I got the call from Methodist Hospital that they had a lung for me (I was the primary candidate).  Pegi and I took off for Houston and made it from Lake Conroe to the Medical Center in 1hr and 10 min.  That's flying folks.  Got IV'ed up and ready to go when they came in and told me that I my anitbodies reacted against the donor organ.  For those not inside the transplant loop, this is not something you want.  So they turned me loose and sent…

After a long hard week of dealing with no energy, too much heart failure and not being able to work, I am finally able to get out and about.  Last week is but a bad memory.  This week, I am enjoying life more.  It is amazing what a difference a week makes. 

God says He will not give us more than we can handle, but I sometimes wonder just exactly how much is...too much!  For the most part, I have been able to stay positive.  But when things get really rough, I find myself playing that…

On Jan 26, 2012, I was listed on the lung transplant list for a single, right lung.  This is my second time through this process.  I had a single, left lung transplant at Emory University Hospital in June 2006.  I will write more on the troubles I had at that time at a later date.  Now, I sit and wait for the call.  This transplant will be performed at The Methodist Hospital in Houston, TX this time.  But, I have one problem to solve first.  My level of Panel Reactive Antibodies (PRA) are…

Today was a hard day.  Made it only through about 3.5 hours at work.  Too out of breath, no energy, just exhaustion.  Kind of a sad day.  Today I almost felt like I was drowning in fluid.  So, home I went and had to double up on my Toresimide.  YUK.. When I double up on my diaretics, I end up tanking my BP.  So not the best day. 

My hope is that I can go in to work tomorrow, but not sure it's going to happen.  Just too tired.  The good part is that I can watch Dr. Phil (ha-ha).  That…

I used to think about what the word "normal" really meant and who really defined "normal."  What puzzled me...was the people who defined what "normal" is....Where they normal?  When used as a noun, the word normal means "the usual, average, or typical state or condition."  The reason I bring this up is that for those of us who are suffering from debilitating illness or chronic illness, we have to re-define what our new normal or ...our new usual is. Normal for me…

Well, here I am, it's 11:15 on Thursday night and I've been on this darn couch for nearly 5 hours.  I think I have a permanent impression of where I sit on my family room couch.  In fact, I think the couch has become part of my body.  Oh...I long for the day when I can shop, vacuum (yes I said vacuum!).  I miss doing the vacuum dance every couple of days.  It's pretty bad when you miss doing housework!  I used to be one of those crazies that would take a brush and comb the fringe on my area…

Today, I tried to go to work for the day....but the failure just forced me to go home.  Too out of breath, too much chest pain, and too exhausted!  Glad I have such a wonderful place to work that they are OK with me leaving earlier than I should.  It is my hope to continue working 1/2 time until I get that call.  However...it is getting harder and harder.  Even though I am incredibly stubborn and I fight like crazy to keep the little energy I have, I have to give in once and awhile.  I am…

Hi,

After nearly 12 years post-transplant, I'm being reevaluated for another kidney.  I'm having a ton of questions rolling around my mind about it.  I have had a lot of health issues and at 55 am wondering about recovery, qaulity of life, and being worth the effort.  I don't want to "waste" a blessing if I am to succumb to another ailment in the near future.  Anyway , I'm going through the work-up....all day meetings with the transplant team, surgeons, and the like.   Anyone that's…

Yes, Jan. 23 is my Birthday! Thank you Cisco! I am very glad to still be here, almost 49! I haven't posted lately, but I am doing very well 5 months post transplant! I have seen my post tx Hepatologist last week and I see my post tx Nephrologist this week.

Hi,

I haven't posted in a yr..had a good yr., but was hit hard w/either a virus or my disease has worsened since Halloween. Now I have O2 in the house & my Dr. wants me to meet the Transplant Team at UPMC. I'm actually feeling a lot better than I was, but they still want me to meet the team to get the process started. I can't believe it..I thought I was yrs off from starting this process! I'm hoping I stay the way I am now so I can put off the transplant as long as…

 Howdy y'all my name is Danny Matney I'm 28 years old now, and this is my transplant story.

I was born on September 5 1983.

From the beggining, my mom knew I was a sick baby, because I couldn't eat, then when I was 2 months old my mom and dad took me to Johnson City Hospital for exploryary surgery they did a biopsy and found out I had a rare liver disease called Biliary Atresia, and they said that I wouldn't live to be a year old, the put me on a…

I was born and diagnosed at age two with Tyrosinemia, a very rare metabolic disease where the liver doesn't have any enzymes it needs to break down protein.



When my mother noticed I wasn't walking or acting like other babies my age, she took me from one doctor to to another with none of them knowing what was wrong. I was sent to…

I was at my niece's christening today, when my sister tells me she is pretty sure that she knows the identity of my organ donor.  Up to this point, (its been 10 weeks today), I haven;t given it too much thought.  I wondered, but never dwelled.  I intended on sending a letter to the family through Gift of Hope, when I felt ready and found the right words.  Well, when she told me she was fairly certain, my curiosity got the best of me,  I googled the information.  All I had known…

 Greetings Everyone !

  Just thought I would write about all the good I have been through since I txplntd.   It's 19 months today since I received my miracle, I tx june 14th, 2010 . What a day that was receiving the phone call ! it was even more AMAZING when I woke up an just could tell everything was going to be ok again .. Each day after waking more and more strength was coming back , around day 10 I was walking long hallways a few times a day, Wondering how could this all…

New to transplant friends and 9 weeks new to a pancreas transplant.  After battling some serious medication side effects, it seems we have everything right but the prednisone.  It's making me crazy.  Outside of the mood swings, and my now round face, I have insomnia and hand tremors something fierce/  I was sent home on a split dose of 30 mg daily.  That was down to 10 mg daily in a split dose until I spiked a fever they couldn't find a reason for. . . .. they increased me to 20 mg daily in…

I had a liver transplant 3 years ago.  I was wondering if any of you have what they call a stricture in their bile duct.  Its where they sew the donor bile duct to yours and have had an ERCP procedure?  How prevelant is this?

1/12/12

It is only when the gardener reflects back does he see the magnitude of what he has sowed. Each flower fills the air with the sweetness that calms the senses. The aroma carries forth in the wind and surrounds all that visit with a feeling of peace.

My transplanted kidney failed over the holidays. I am now doing dialysis 3 times a week.  My kidney lasted 11 1/2 years, now I have to make some decisions. I am not sure what to do. I don't know whether to do home hemo, PD, or clinic hemo while I get myself back on the transplant list.