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Wednesday, June 15, 2011

June 15th.... nothing more...

I have a hard time explaining my life, "I look good". This is what I hear when people ask what's new & I hit them with the need for a transplant. Something tells me that if you are not plagued with a life threatening illness then you can not fully understand what we are going through. I eat, sleep & live around my heart.

My perception of the outside world is one in which major worries are getting their plants put in, taking the dog to the vet for grooming, or washing your car. All the things that used to be on my to do list. And now my list is to pick up meds & rearrange dr visits, never go far from home because the call could come in.

I need a new heart so that I can find the authentic being stuck inside this empty shell of what used to be me. I'm becoming selfish, self loathing & numb.The phone rings but it's never the call I yearn for. I hate to be disappointed because it's just you. Just you should be enough.

Wednesday, June 1, 2011

What if YOU could save 8 lives? YOU CAN.........

Skip around, ignore the cookies page, I did.. I found my home state and saw that you can change your donation status before your drivers license has expired. Don't hesitate, heaven knows your heart already..

Gift of Life...

Hahneman has had 3 heart transplants in the past 3 weeks. I just checked my pager and saw NO MESSAGES. Half tempted to call down there to remind them that I am waiting patiently, but I would never even jest with such a silly "joke". All 3 hearts have been given to men including my friend Rick who I asked for you all to hold up in prayer before me since he seems so deserving & the right candidate. Such a Norman Rockwell family setting like his needs his presence at the dinner table as he watches his daughters have families & raise grandchildren for him to enjoy during his unplanned early retirement.

The other two were on LVADs and while the machine itself is a lifesaver no one would want to live life in that manner unless they had all the assistance & personal attention that a Dick Cheney has, and I bet if the truth be told he's not so thrilled either (other than to still be alive which of course is in itself paramount). At 92 lbs I do not want to "go there". I pray that I never get sent home with the VAD Video & pamphlet..

My goal is to Pay it Forward after the second chance at life happens for me. I want to somehow be proactive in speaking in high schools or where ever they will let me speak to encourage organ donation. Procurement has so many myths that need dispelling. I hope to be able to achieve that goal with a year.. My birthday is coming up July 13th, maybe this year I will get a phone call that will be the gift of life.. one can only dream...

Thursday, May 12, 2011

Back to 1B

What a roller coaster ride this past 4 yrs and esp. the past 4 months have been. Yesterday after having been in the hospital for nearly a month. I had a follow up visit with cardiology. It was only a week ago since they saw me but the GI team was basically in control of the whole sh*bang and it was necessary to get me out of the threat of further infections & back to where I had been on the transplant list.

So off we went arising at 4:30 for showers and getting there in record time 7:45!! We were first in line & I was first to be admitted, YUP admitted again, but this time it was for the inotrope Milrinone that is sent into my body via the PICC line in my right arm (a new one).

Dr Eisen was able to forego the "seemingly required" right heart cath with consequent admission to CCU, to get the milrinone started, he merely restarted it at the dose I was at post infection.

Color me thrilled. I was able to be discharged the next day. (NEVER has that happened in my 57 yrs.) An admission always led to more & more problems.

I did find out I am anemic and I will follow up on whether it's pernicious or FE deficiency. Also low in protein my albumin level was still a tad on the low side, hence that AWFUL picture that is posted on my FB page by a well meaning friend. It's a constant reminder of how sick I am and how my facial sunken features are so visible, it ages me and makes me cry everytime I see it. My sister cried for days after seeing it, I shielded her from the vision that has become me. (not always but esp. after 1 month in the hospital, no shower, and low iron & sick as a beast with infection..

Anyway back to reality, although my pump awoke me every hour on the hour beeping due to some malfunction, I just kept resetting it as it is a temporary one & the VN will arrive today to reset the 2 "real" pumps, the cartridges full of medicine arrived at about 6 PM lastnight, that company in it's infancy deserves to be praised to whomever will listen as it is THE most impressive group of nurses, doctors, pharmacists & drivers that any IV med company can offer. I hope they grow as they plan to & with my help I will make sure praise is distributed to all that matter.

Off topic a bit but never the less still relevant to my care.

I would also like to announce that my a heart became available that same day for a 26 yr old 1A pt. Not Rick but Bryan. I called Rick and told him, as Bryan was knocking at the LVAD door like Rick is, but God saw it another way & he bless young Bryan with a heart.

Hope is alive... Thank you for your prayers & positive energy.

Blessings to all, Denise

PS, now I need to stay free from infection & maybe I can have someone report to you that I am in getting a heart in the near future.. one can only dream..

Thursday, May 5, 2011

I Hate Liver

I had been in the hospital the week of April 3-8, I was raised up on the UNOS list to a 1B which brings me closer to a new heart but still eons away if no hearts are donated. But I was encouraged. I had entered the hospital with some elevated liver enzymes, but they resolved quickly. While home on the milrinone I began to feel it's effects almost immediately, but then started a downhill climb feeling poorly each day.

 By the 14th the visiting nurse arrived to find me pale & in a listless state because of something unknown. I was then taken to the emergency room where I was admitted before all others due to SOB & chest pains. I began to shiver uncontrollably & could not get warm, teeth chattering I looked to Tom for relief in answering the book full of questions. His face told me everything, his tears confirmed that further. The Allentown Drs called Philly & the response was to get me there ASAP, draw some blood cultures & the ambulance was on it's way. My WBC was severely elevated indicating infection somewhere. They pulled the picc line and I felt defeated.

No more milrinone, no more 1B, I knew I was now a 7, not eligible for a heart at all if one would miraculously appear while I was sick febrile & infected. Rejection is the reason why, and why should I get a heart to waste if someone who was well could be helped. I knew it was the right thing to do but I was mad that my body betrayed me.
In the next few hours I was found to have a blood infection that did not come from my picc line but rather the common bile duct was backing up sludge & bile into my bloodstream. I would need to have it dilated. My past abdominal history makes this a hard feat,however it was done in 3 separate PAINFUL procedures, that rival no pain I can recall. I was in the hospital for 22 days while on antibiotics, round the clock anti nausea medications.

The GI team feel they have done the best they can without a major surgery, only time will tell. But that sours my stomach & blows my mind in so many ways, suppose I get back to 1B or even 1A & the liver flares again. This mental ping pong game is about life & death not antibiotics & inflammation. I tried to get this point across through a tearful explanation that my liver and heart ARE related. Someone said they are two separate entities, well not for me they aren't. One liver inflammation negates the progress I have made in my quest for a new heart.

I grow weary waiting, knowing full well my latest echo shows an ejection fraction of 5. How does one function in life at 5? I'm barely holding on by a thread. Fear is consuming me. My next DR visit is Tuesday, I will let them know of my "current condition". Holding my arms up to type is becoming nearly a chore, most likely deconditioned from the lengthy stay but never the less fatigue is paramount. I slept yesterday away & plan on doing it again today. My body is yearning for it. How much of this is my heart I can't be sure.. but suffice it to say it plays a major role.

Wednesday, April 13, 2011

A good cry...

Tears are finally gone, they truly helped to wash away the emotions that seemed to give me so much negativity. I know what I put out "there" is what I get back, so I offer love & peace with a hint of a smile..

Did I forget I was sick?

I'm going to have a good ugly cry.. I went to Giant, I bought one (recycle bag) full of groceries. I should have divided them into two to begin with but that's not what I'm crying about. It's because that was the hardest task I have done in the past 4 years.

I thought I was supposed to feel better with this medication. This poison (milrinone) that I can't say no to. I KNOW I did too much. I am ashamed at myself for not allowing Tom to help out & saddened that I need him to function in every capacity that gets us through the day. While he graciously offers I can not give him so much of my labor, it only serves to make me feel that much sorrier for myself. I don't know what to do anymore.

I was able to thumb my nose at this disease up until about 4 months ago, steady decline in my health informed me of my arrogance & the need to stop playing the martyr role & allow ppl to help me out.

It's a natural instinct to try, I guess.

I need to honor my bodies shortcomings & respect where I am in this process. I simply can't do it anymore. I am my disease today. It has chewed me up and spit me out into a blubbering mess of self loathing tears. Frustration only scratches the surface of today's attempt at some sort of normal behavior. I was told to live while waiting for my call that a heart is there for me. I don't call this living.

What a sad entry, I'm hopeful you can understand even a wee bit & forgive me for the raw reality that is my life today..

How do I handle the progressive disease of my heart while awaiting a transplant?

Tuesday, April 12, 2011

Transplant 1B

Saturday the 2nd was like any other day once you are dx w/ HD. No plans of a marathon race or even cleaning the whole house, let alone an entire room, one knows that's not even an option.. The entire day I was off & on the "throne" w/ what are called clay floaters (hope that's not too graphic just needs to be said). Plus I felt nauseated all day long, I took the prescribed amount of Zofran and each dose only lasted 1/2 hour, one dose can usually take nausea away for the day. I had Tom take me to a local Hospital, got into the ER found out I had liver inflammation. Painful & sickening. The events at this facility were minor but still I will mention them. A Foley cath was inserted, because the dr wanted to hydrate me, so an accurate I&O (intake/output) was vital. Nurse inserted the cath into my va jay jay, yes I said VJJ, I knew it felt wrong mentioned it and was told to relax, 6 hours later I awoke with a still empty bag & a full bladder. The still inflated balloon was found half protruding from my privates & the situation was corrected by the night nurse. (always eventful).

Next AM I contacted the heart doc in Philly, transportation was arranged and I was admitted to CCU. A Right hearted cath was done the next day, and the swan was left in place, I was then placed on milrinone that ups my standing to 1B w/ the UNOS procurement center. Seems my heart is worsening as I was feeling slow & steady. I never want to cry wolf for fear of not being believed at another time, which plays havoc with me daily.

I am now home and I must wear a pump, with continuous infusion of this deadly medication that helps temporarily but can shorten your life significantly, my mind wonders how much shorter can my future get?? The home health nurse was here yesterday & I will change my own bag today, she will return on Monday for labwork, cross check my PT INR machine against the actual lab values, change my dressing and get a few questions we came up with Sat answered by my Doc.

I can no longer take a long hot shower like I used to. I find that disturbing, we are thinking creatively for ways to work around this. I can't walk away from the pack ever, it is like carrying a purse 24/7.

I am emotionally drained. Scared to death & feel more vulnerable now than ever before, imagine the very medicine meant to keep you alive while awaiting a heart can actually weaken an already weakened heart. Scared barely scratches the surface, but I put on a good face for my husband, somehow that has not been working out as in the past, break through tears flow like a light summer shower.

He holds me close & then the world feels right again if only for those few moments. I live for those moments...

I ran into Nurse Hatchet at the hosp, requested not to have her again, I had to spend 12 hours with a woman that would share no small talk & her reputation was known by other departments, she transported me the day of the cath. I could see the sneers & eye rolls of the cath lab staff which opened the door for me to confirm my findings.

That night my fav former Peace Corp nurse was in charge of me and the next days schedule, I got a great replacement the next AM & will most likely not get that nurse again unless it is absolutely necessary. BTW this nurse is well skilled but lacks social skills & compassion (IMO).

The last paragraph was a diversion tactic on my part to help me rid myself of the minor trauma that might have originated from the milrinone but was delivered by a person that did not even tell me she was hanging it. OK I'm still mad her... diversion or no diversion the lady needs to be human..

So here I am.. happy to be home, sad I can't shower, sad I have this weight around my neck, figuratively & literally.. glad to have ppl to share it with that understand..& hopeful that each day is full of wonder (as my buddy Annette & I seek daily).

I feel this entry lacks a little of my personality, I am struggling to find that comfort zone, here's hoping it's around the corner or sitting right in front of me..

Transplant 2

Tues I had an appt with the great Dr E, we traveled the mandatory 2 hour drive one-way in bottlenecked traffic to arrive at 8AM, I had vitals done, labs drawn, EKG, screened by the transplant nurse, then seen by the DR. He looked me over and after a couple of questions said you can send Tom home if you want, you are staying with us.

6 hours later I am in my room, yes 6 hours.. luckily it was the monthly meeting of heart transplant survivors & I was asked to sit in with the group, I gained 2 business cards, half of a turkey sandwich, some fresh fruit and water, the best choices from what most seemed like a dichotomy in a luncheon spread for heart patients. I also learned that many people gain (on average 9-11) years of what was once a normal life minutes after the transplant takes place. Each of them said you awake feeling like you did before you had your first indication of CHF/DCM, It was reassuring & gave me hope.. & filled my growling tummy.

The next day the heart cath was done. My PT INR was not at the right point, so I was given a heparin drip to help. I waited till 4 in the afternoon NPO, this visit was not going well.. I got down to the cath lab & the fluoroscopy machine that directs the threading of the catheter was on the fritz, so lying flat for all that time with no sedation was giving me more anxiety. They borrowed a machine from the OR, and off we went, 7 attempts at the neck were unsuccessful, one reason I head was maybe she has a clot. The rude & weary doctor finally decided to do the procedure in my groin. I was prepped & the lumen slipped in like butter.. YEAH!!

Back to my room, leg remains flat till the "wires" come out.. so it was bedpan city.. luckily I was not on diuretics, and had been NPO for hours before the testing.However the HIGH pulmonary pressures they got in the cath lab were soon replaced by more stable numbers in CCU. I was sad & glad at the same time, wishing I could be moved up on the transplant list but glad I would not have to live with a fanny pack & picc line this early in my wait for the heart. Thursday marks one month on that list, it seems like 6 from this end but it's only been a month.

While I was there it was determined that my morphine pump should come out, I was only too glad to get rid of it, I get 5mg per 24 hours but with chronic pancreatitis behind me and just an occ, bout of it, I am ready to let it go, surgery said yes, then pain management arrived and said we can't just pull this out suddenly I may need titration & support afterwards, it was determined that my home doc that put it in could be responsible for this action. I am lucky to have an appt on Fri. It was already scheduled so I will address it then, we can start the progressive decreasing of the meds, it's morphine/baclofen. Hope this goes smoothly.. nothing else is at this point..

Next my blood pressure. It's low. My blood pressure is VERY low. So low that you will not believe this but I'm down to 3.125mg of coreg (2x day) & 5 enalapril at bedtime. I can't help but wonder if they are trying to raise my blood pressure in an attempt to 1) help me feel better & give me a better quality of life in the time I do have remaining & 2) (at tad more optimistic) help me get a blood pressure so they can treat me with inotropes at a future date, during the bridge to transplant with LVAD being the stronger bridge after the inotropes stop working.

So for as much that seemed to happen last week, not much has happened. Time ticks away slowly when you are on a list like I am. Each minute seems like an hour. Keeping the faith is hard. Staying positive is a fake smile & a reply of thanks when you hear "but you look great".

Transplant in my future..

Bear with me this is long & at times complicated. I have had NIDCM for 4 yrs with an EF of 20. I was placed on Coreg but could not increase past 6.50 twice a day due to low BP & body weight. I spent years with a doc that seemed caring & adequate & sought 2 outside opinions. I have an AICD due to the chroninc Afib & am now on Sotalol. Dig, Enalapril, coumadin & a couple nutrients round out my daily regime with Lasix & K tabs as needed. In fall of this year I went in for an echo. The results were still 20. I was sent to a HF specialist at this point because I felt awful.

There are plenty more stories about this Dr Howard Eisen one which involves Mark Meade as a transplant recipient. Google Dr Howard Eisen

Mark Meade & his wife Terry became "ebay friends at one point during my involvement with eBays focus group called VOICES. Last month Terry Meads husband was doing so well that he took Dr Eisen to a Giants game. As Terry (his wife) and I chatted online her suggestion to send a brief medical history to her to show Dr E resulted in a personal phone call from him & a follow up appt along with a bilateral heart cath..No blockages, but my EF is now 5-10. My VO2 max is 9, transplants are done at 12.

I am currently at home attempting to finish all out patient testing so that next thursday I will be presented as a case to be officially listed & get my beeper...

Throw my abd problems into the mix & that necessitates a virtual colonoscopy, as well as a CT scan of pelvis & pancreas. Sadly snow is inundating us causing the one day prep to turn into 2. I would love to hear from other transplant patients & chat with them if we have any on board..

Am I scared you bet, has the moral aspect of what has to happen for me to live entered my heart & soul, you bet. This was NOT what I expected from the disease process, but as I began to decline last few months I urge you all to listen to your bodies, never settle for a diagnoses that feels wrong, Speak up when things are NOT progressing. I will be here as much as possible & pray I can help others or that others can help me.. This has been a safe haven most of the time & I can only hope that it will be again since I have no where else to turn living in the sticks..

In the beginning....

Just a few years ago I was living a somewhat normal life. I was living comfortably with my husband in our dream home, a modest 2 BR  partially secluded piece of heaven. Life was good.

In Nov of 2007 after returning from a trip to CO to visit my sis I woke to a gurgling sound that was coming from me. It got louder & harder to breath on the way to the ER. Upon admission to the local ER I learned that I was in  CHF: Congestive Heart Failure / DCM: Dilated Cardiomyopathy . I was emergently given a (pacemaker) AICD after my EF: Ejection Fraction came up at 20.

Life as I knew it would never be the same, but this was just the beginning...