HOPE is a small little word with a powerful punch!!
Don't ever ask me what I had for breakfast any given morning, as there is probable little hope I will be able to remember. However, ask me any time about 5:00 p.m., August 15, 2005 and I can not forget that very moment. This is when I had for the very first time heard, "So sorry Deborah, nothing more can be done"!! I had just transferred into my home, after sitting in a Court Room almost all day watching the prosecution of my sister and her decision to break into our home and rob us, while I had laid with full life support keeping me alive 120 miles away in that past year!! While experiencing many emotions and feelings never previously ever considered, much less ever considered I would have to deal with, I was handed off, by one of my attorneys, my ringing telephone. I then heard, "so very sorry, Deborah, there is nothing else that can be done" for the first of many times to come!! Unfortunately, at that moment I was being told Max was gravely ill and our general practitioner had come to the conclusion nothing else could be done!! We were ultimately given about six months more life expectancy, unless a donor transplant could be found!! And, thus my fight for Max's life began!!
I can not remember each battle, and truly do not want to. This has been the longest four years of my life. It has been one long series of wins and loses!! I am sure I could put them all together, but it would take days and it matters to me little at this time. That is, unless I could turn them into the "Television Movie of the Week" and make my first million on another very badly chosen script!!
I think every one knows I have pretty much been on complete bed rest for the better part of the recent months. I recoup a little bit, just to be hit with some thing else to take me two more steps in reverse!! Last few days have not been good!! But, nevertheless, good ole Uncle Sam sent additional greetings demanding my presence at yet another pre-transplantation "conference"!! Realistically, Uncle Sam, a.k.a. Veterans Administration, is looking for a "nice" way to say, "so sorry, Mr. Markham, but we can not transplant a liver and kidney in you because........."!!
Well, to put it as politely and nicely as I can, "Over My Dead Body"!! Max and I have had more than our share of "ups" and "downs" with our relationship. However, had it not been for Max my butt would still be rotting away in that "hellhole" of a Nursing Home I had been placed in!! Also, apart we both just have long and hard struggles, but together we can not be broken by any thing or any one!!
Thus, we had to be on the road again this morning, headed west the 90 mile trip, to the Veterans Administration Hospital!! I was in excruciating pain and overly tired before we got started and every mile just became worse!! I was primed and readied by the time we arrived in Iowa City!!
We were just there about two months ago, when I spent a grueling day going through what a team of six psychiatrists thought would be role-playing which I put an immediate halt to!! This day then went to one scenario after another of a game "well, if this happens, what will you do, and if that happens, etc., etc., and etc.!! After six hours of this, the plan was to put me through a three-hour series of memory and agility testing!! Good Grief!! What part did not these "overly educated a$$es" not understand that I am on more morphine daily then most people ever encounter in an entire lifetime and I am in a wheelchair?!! About noon this day, I finally raised my voice to just an octave below screaming at them "enough"!! I would meet any thing presented to me and either handle the situation by my self or place people back on payroll to handle it for me, BUT every thing and any thing WOULD be taken care of!! I further told them I would rather be headed back east home than spend another three hours repeating myself!! Suddenly, we got a previously unscheduled recess. Max and I left the hospital and found a wonderful little deli and had a delightful and leisurely lunch.
Upon returning to the hospital this six panel "whatever" had disbanded and word was left they were done with me!! Max had to go on with about two more hours of testing!!
During this time, I had suddenly been scheduled with a pair of Social Workers (we all know how I "love" Social Workers - NOT!!) while waiting for Max. I was informed of several things at this time, but the only thing that remained in my memory was my having to stay in a hotel for about six weeks alone and then an additional three weeks in the hotel with Max "if" a transplant was going to take place!! There was much other information given to me, at this time, but every thing was lost as I knew six weeks alone in a hotel having to commute back and forth each day was all that I could absorb. It was one of the first times I felt "not a chance and no hope"!! Hopelessness is not some thing I will ever accept "gracefully" and I come back "swinging"!! I had come to the decision of simply "Whatever"!! "What ever" could they do to me to MAKE me stay nine weeks in a hotel!! I do not handcuff to a bed rail easily!! So, "what ever"!!
I had a rather "uncomfortable" few days!! I then was once again able to get ahold of my self!! I personally, very much, do not believe in fear. Fear only gets a life, "if" we give it one!! And, I have learned so very much from knowing Eunice. One of the big things, I had to work on was worry. Fortunately, Eunice has been working on this problem with me for several months and I have learned from experience not to let worry come into my life, until it truly comes in and not a moment before!! These things coupled with my deep belief in prayer carried me through!!
However, a few weeks ago, we had gotten another "letter" to be at the Veterans Administration Hospital!! A friend took Max and I stayed at home. I was happy as a clam, having nothing to do or any one around me at all!! Max returned home much sooner than I ever expected rather upset!! The staff at the Veterans Hospital refused to go any further with this Transplant Process with out my presence!!
Personally, with my attitude coupled with my pain levels, I would have advised them to "rejoice and be glad" I had not went along!! Nope!! Every thing had to be re-scheduled for today!! Okie Dokey!!
Thus, this morning at 6:00 a.m. we were up and making our way back to Iowa City!! I am speechless to describe my attitude and demeanor of today!! It was plainly the worst ever through this entire "Process"!! Max had the usual tests and moderating. I had a bad incident prior to leaving my home this morning - I could not put my hands on any Aida cross stitch projects!! I had simply forgotten I needed my "Mighty Magnifier" lamp to use any thing other than Aida!! First appeared nothing to "tame the beast"!! Then, I sudden saw a glimpse of a 3-D Christmas Card I have started on perforated paper!! Such relief!! Without realizing it, I have pushed all my Aida WIPS to the very back and deepest bottom of my WIP area, as I have absolutely fallen in love with linen and evenweave. Big problem for another day!!
We got on with our drive, and I started thinking about all the members who post about stitching while traveling. I never used to be able to read, do puzzles, write, about any thing while riding in any thing with out consequences of car sickness.
This was some thing I really did not need, but this was the kind of morning to push all limits!! Thus, I pulled out my perforated paper and supplies and began stitching on my "Snow Globe". I do not know what peaked my interest, but suddenly I realized some thing simply did not look right!! Thus, I just stared at my piece of perforated paper contemplating how to make the "cut-outs" for the 3-D Card. Good Grief!! I had started the "Snow Globe" design the wrong way on the paper!! I suddenly calculated needing 22 squares more above my stitching, while I only had 15!! Well, as my father always used to say, "you can not make applesauce, out of horse shXX"!! Sorry, just that kind of day!! Thus, some one will be getting a "one and only" snow globe stitched insert in their Christmas card this year!! There was nothing or no one who could possibly ruin this day any further, so I amazingly took it in my stride and just kept on stitching!!
Max finished up his business by about 10:00 a.m. and the "Social Worker" who had requested to have my "presence" had made an appointment with us for 1:00 p.m.
Thus, Max and I got back in our van and found a Perkins Restaurant for a fantastic "brunch"!! We just took our time!! I casually mentioned trying to find a LNS, but this idea went over like a lead balloon!! I do not know if Max had a LNS on his agenda or not, would bet "not", but as he was trying to maneuver my wheelchair from under the table he just barely scraped my leg. I initially did not even give it a thought!! A lady sitting at the next table stopped me and asked if I knew I had been injured while being pulled out from the table. I could not figure out what she was talking about, but decided to look down at it and only saw massive blood!! It takes little, or nothing, to get me to bleed on "bloated" days like this and bleed I did do!! Unfortunately, we had to spend a considerable amount of time on clean and patch up duty before any thing else!! Thus, we went back to the hospital and we sat out in the sun for a short time. It was only high of 64 degrees and wetness after a rain day, so the sun felt so good!! Finally, it was our scheduled time!!
We arrived at the Social Worker's, Carol, office right on time. She asked that we just go into some empty exam room to wait for her to finish her lunch!! Yeah, sure, take your sweet time lady was my only thought!! I had not actually seen this woman yet, but only had heard Max's rants and raves about her the past two weeks!! There was a large portrait of all the Transplant Staff on the wall. I told Max we could start the games early by letting me try to pick out our new "special buddy" from Max's clues on the portrait. First guess, I got her!! Well, that was not too entertaining for very long!! Well, another stitching break. I managed to get all the many "snow" confetti stitches finished!!
Carol finally arrived in our new "conference" a.k.a. exam room about 1:15 p.m. She then proceeded to sit on one hand to the other in an attempt to write and also keep warm as the room was so cold!! Finally, she simply had to go find a sweater as she was just too cold!! I was going to offer mine draped over the back of my wheelchair, but you never know about Max and my quick departures where there becomes a need!! Finally, we got yet another interview, that I alone have already been quizzed over at least a dozen times!! Thus, I just decided to ask whether that computer "thing" she was working on was incapable of reading the notes the last twelve interviewers had made so it would save us all a lot of time (oh, the urge to just say "a lot of valuable stitch time)!! Well, yes it did and she did not know "why", but just she had to fill out the forms completely!! I just gave it up and went back to "my" old reliable "what ever"!! Well, she was very worried about my safety as Max's "Support Person" so could not our "Back Up Support Person" step up to his "Support Person" and we ask some one else to be his "Back Up Support Person"!!
Well, it took me a minute to unravel all these "Persons", but I told her I could very assuredly tell her "NO, that most surely would not happen!!" Well, did I mind "sharing" with her why not? I told her I did not mind in the slightest, as we simply did not have a "back up support person"!! What about possibly a grandchild? Well, if we would have had children, which we did NOT, they might have responded, but I was quite sure "grandchildren" were out of the question!! Now, I got a bit miffed here as you have to be 18 to be considered a "support person" - I asked just how old did she thought we happened to be!! Oh yes, guess I would be correct then!! Much discussion ensued, but the subject of a "Support Person" was lost in the big tangled mess!!
Carol went on to quiz me over the possibility of us asking a potential donor for their kidney and/or section of liver!! I had ended our "Support Person" discussion with it was Max and I against the world by OURSELVES and we had long ago accepted this and possibly Carol should also move her mind set to this!! I truly thought this was "the point"!! Carol wanted me to be sure there was not a friend, possibly a person Max had worked with, etc., etc., etc.!! Can you even begin to imagine hearing, "Uh, Hey, Deb!! You know you and I have worked together a long time, you think you might not miss a kidney and/or part of your liver?"!!!! NO, I can not even imagine such a thing!!
Well, I started not believing a word this woman had to say to me!! However, I walked out thinking God had placed her especially right in my path to watch over us!!
Carol has above and beyond promised an end to this insanity by mid-October!! At that time, Max will finally, just over four years later, be placed on the National Donor Organ List!! I was busy thanking the Lord, when I heard "Um, now Max has Type O Blood. That will place him 3 to 5 years down on the list, give or take a circumstance or two!! I immediately begin to think, Carol, Max is Type O Blood which is almost the universal blood type!! Where in the world are the rare blood types on "this list"!! Well, Max will be placed on the National List retroactive back to June 16, 2008 as this was his dialysis start date!! Why can I not shout "Happy Dance" on my rooftop?
Carol "assured" me that she would be placing in the record and having held on "stand by" a private ambulance service to transport me to and from the hospital each day as they do NOT have any vehicles that have access for a person to be transported in a wheelchair!! Carol says I will only be required to stay 7 to 10 days in the hotel alone and when Max is discharged from the hospital we would only have to stay another week or so together at the hotel!! She said I was required to stay in Iowa City to "support" Max's getting up to walk several times each day immediately following his transplant as the staff is too busy to make sure each patient is assisted and does this walking several times a day!! I absolutely QUIT asking do they not see me as a disabled person in a wheelchair that does not walk herself, much less support a man walking immediately after surgery!! She said if I needed further "help" at the hotel room the hospital would provide it. I ask again, perhaps they should provide this "help" for Max where it is needed and could be used!! I will be glad to go home and just get the heck out of the way!!
I was completely stunned with Carol's time frame, hotel "help" and actually knowing Max will be listed on National Donor List finally!! She went on with so many other details and I am lost as to almost all of them!! I keep questioning Max if I did not have a day where my morphine had gotten off balance again!! I am continuing to question this entire day!! Max keeps assuring me this is a perfectly normal day for me and I am having no "episode"!!
And, as we progressed on, Carol discovered Max's Vie Nam tours. These have virtually went totally unaddressed for all these years and now suddenly she told us we were entitled to an extremely substantial amount of tax free income also from these as Max did develop prostrate cancer some years back!!
Carol seemed very dedicated to her job and also very proudly told us she was very sympathetic to the Viet Nam veterans!! She convinced me she was totally knowledgeable about all aspects of the different Veteran's Acts and all the Rules and Regulations. Why can I not bask in the wonders of the possibility that we have finally won this battle I have appealled, appealled and appealled?
I guess all I can do is now sit back ,pray and HOPE!!
Love and Hugs!!
Deborah
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