Acceptance -OR How To Survive In This Crazy World

      Over the last few months I've read many posts on Social Media about others health issues, life struggles, etc.  It pains me to "feel" the heartache I sense coming through their words. I met a sweet lady, newly to the possible transplanted community recently, she stated she just finished reading my blog and wasn't sure if she could go through all I have.
     First, let me say ....  Not everyone will go through all I have. With the advances in medicine today, many will soar through their health issues with flying colors. I have met some of these new trail blazers and they warm my heart. Those of us with more than 15 years behind us (24 here) were the trail blazers of our day too. We helped spark that debate of, "What makes them thrive?"  How does patient A live for 20 years with a transplant, while patient B rejects within 2 years?

     I believe it can be summed up into two words: Acceptance and Overcome
Let's look at acceptance.
I accepted in 1977, I may not live to see 20 years old... I overcame it.
I accepted that in late 1989, I was given 12 months to live... Back then a physician had to give you this "death sentence" for  you to be listed for a transplant.. I overcame it. On that 365th day I woke to a sense of , "is this my last"  then I thought NO it will not be.
I accepted when my transplant team told me, this could be the last few years of my life- go enjoy it.
I cried over things I  may never see again: the wind in the Palm Trees, the ocean, etc. BUT I overcame it by NOT falling into a mind trap of doing this everyday.  I gave my "crying time" a priority of one hour once a month. The rest was devoted to my life. Each month I took my "woe is me" box from the shelf, opened it, had a good cry, closed it- and continued my life.

Just before Y2K, I was told I had chronic rejection. I was floored. Back then, it was a death sentence to us all. I cried for a few hours, then hit the Internet.. I researched, I read, and I researched more. My team gave me a game plan of what needed to be done. I accepted it. This game plan was my light at the end of the tunnel. It was rough.. It took all the strength and will power I had in me. BUT I DID IT! I learned I am stronger than I ever imagined, and more importantly I learned how to draw on that strength. We stopped the rejection... but...

I was refused a 2nd transplant....

I did not get depressed- I went into action. I contacted EVERY lung transplant center in the nation - and some were not so nice to me either. I found one who would evaluate me !  My new center saw a determination in me that my first one did not. I did everything that was asked of me.Limited breathing capacity, on oxygen (again), and knowing I would need a new kidney after my lungs were re-transplanted. Each time I was rushed in to the hospital, my Dr would give me a game plan of what needed to be done, I would reply "OK" . He knew beyond a shadow of a doubt, I was in 150%. I never asked how I would feel, if it would hurt, just "when can we start".
I overcame... I got my new lung, and stayed on a respirator for an additional week to give my kidneys a rest.
My next Acceptance was needing a kidney transplant.  I did all they asked- except - accept that I would need dialysis. I researched...  I had 3 pages of food to avoid that I created. Orange highlights had Potassium, Pink had phosphorus and green had both. I severely restricted my diet- never got dialysis... I overcame.. The thought of a 16 gauge needle in my arm gave me all the determination I needed.
If you have read most of my blog, you will remember that last year 2014 was not a good year for me. My right lung from the original transplant is becoming a little bothersome. My transplant team basically sent me home with the statement, there is nothing more we can do.  I took this as being sent home to die. That is NOT being depressed. That is a call to action!  Within 3 months I was back to my original strength, walking twice a day, swimming, and enjoying life within my boundaries. I asked one of my team if they had any idea of how long I had. I secretly wanted to prove them wrong :)  He replied with anyone else I would estimate- you- we have no idea. That made my day !

I accepted this too... And I am overcoming it.

I have recently lost another beloved pet.. My Toy Fox Terrier CC (Capt Chaos) has left me. The loss of both "boys" has been hard. Dibs was due to an enlarged heart and CC to kidney failure. Both of which I can relate to.  I still have my Ozzi with me. Though we have a deal- he will live forever as long as he is the only dog. You see, he thinks it's good being the king :)

This is not to say my life is all peaches and roses. I have a new regimen I follow to keep my right lung from affecting my left. I know I can still exercise, Dr. Baz taught me that when I was dying for a lung transplant. I can surely do it now. As my right lung wastes away, I can make sure the rest of me stays as healthy as possible. I will not give in ! That is not in my chemical, physical, or mental make up. It is not a fun journey at times, but it is still my journey to live. I intend to make it a grand adventure !

I have stated many times in my life, I CANNOT AFFORD THE LUXURY OF A NEGATIVE THOUGHT.   This is more true than you will ever know, and has kept me from depression.

So... Accept and Overcome.. No matter what you face in life.. If you are diagnosed with Diabetes, Heart disease, or any other ailment- Accept it Now. So you can Overcome it and triumph ! For to not accept can only lead to more health issues down the road.

I would like to take a moment and thank Maher Baz MD for all he taught me through his time as my transplant physician. It is the inner strength, he showed me I had, that I now draw on. I think back to his teaching during the wait for my 2nd lung transplant and the quiet confidence I felt he had for me to overcome. I will always attribute my life and how I choose to overcome my obstacles to him.

Disappointing editorial in todays paper

I read the following editorial with increasing dismay this morning.
apparently all those promises of NO CUTS TO MEDICARE we were
promised were once again false campaign/ presidential promises.

  While this may not affect many of you in other states, it has a huge impact on Florida.
Many retirees have chosen to make Floridas warmer climates their homes in later years.
With these cuts those reitrees who are not in perfect health and the disabled all which are
ineligible for a Medicare Supplement will be hit hardest.

  Once again, those who can least afford it, will be the ones to be made to pay and struggle.
I have been in situations where I had to juggle finances to achieve the unthinkable.
Pulling my hair out, and wringing my hands in total despair was not my idea of fun.
Why should the disabled, organ transplant recipients, and seniors who have been denied a Medicare supplement once again be forced to choose between life and health care, prescriptions, etc.
And why, can someone tell me, why should a physician have to feel the brunt of watching their patients suffer due to financial difficulties and Medicare cuts?




More Medicare pressure



I have been a practicing internist in Venice for 10 years. I am writing concerning Medicare cuts in physician reimbursement, not to make readers feel sorry for doctors, but to let people know how these cuts will affect them.



Physician payments through Medicare are based on a formula called the sustainable growth rate. This has resulted in yearly cuts in physician reimbursements, which have been delayed by last-minute acts of Congress. These fixes, for the most part, have resulted in fees remaining the same while expenses continue to rise. This year, Congress put a two-month patch on the problem. It expired March 1 and physician reimbursement was cut by 21.6 percent.



What will happen as a result? Physicians will drop out of the Medicare program en masse or, if they're able, they will retire. Many will go out of business. Florida physicians will leave for areas with fewer Medicare patients, resulting in Medicare patients losing their doctors or paying them out of pocket. The doctors who remain will cut costs by cutting staff and services such as after-hours care. This will result in further pressure on emergency rooms. Doctors will also begin charging patients for things such as phone calls, prescription refills, etc.



Readers, tell your congressmen to fix the problem. If not, you'll have other chances, because reimbursement is supposed to be cut further to a total of 47 percent by 2012. But, by that time, there may not be any physicians left.

Eric Lough, M.D.
Nokomis, FL

Insulin results

Sorry no post yesterday, Hubby surprised me with a trip to the beach. Motor home, boys and me all on the road for a day.The beach at Nokomis was beautiful. A sunny 87 degrees and a beautiful Gulf breeze.
My blood sugar has been doing great in my experiment. The first day it was kinda wonky ( a  new word of mine) but still in range. As of yesterday it started to level off and stay where I wanted it :80-90 range.
   Now I actually feel hungry as the insulin starts lowering the blood sugar. My weight has started to decrease as well... YAY!! I'm able to eat the type of foods I like and keep my blood sugar in range.   I'm a healthy eater, love fish, chicken, veggies and fruit so this also helps keep everything ok. 
   We went out last Friday night for fish and Larry wanted to share a platter. I should  have known better. It was a fried platter and I even commented that it had too much batter and not enough seafood. This should have been my first clue. Three hours later my blood sugar reading at bedtime was a whopping 175!  This did not sit well with me. I decided there and then that I would take back control.

      Along with the diet, I've incorporated more exercise. I now walk more in the morning as well as the evening. Our days are less humid and we're now getting the Gulf trade winds so walking is enjoyable instead of a chore. My lil guy DB loves it too. He's a big concern with the heart problem, so he's getting his heart walks too. This along with writing down my calories/fat content at each meal and a final tally for the day help me understand just where I need to tighten the belt so to speak.

  I still have the pain in my left side, hopeful it's fractured ribs and not something more serious and today my right ankle is extremely painful.  I've said many times I live with some sort of pain each day, now I guess it'll be a few pains each day. Still walked, still did laundry and cooking. If I'm going to be in pain, I intend to have a darn good reason for it.

Welcoming a new day & ready to fight

Well I've done my morning routine medically speaking, walked our boys and now time to work on websites and web stores. I uploaded a link to my Etsy store, please give me feedback with any suggestions.
This morning I'm fuming about an article in the morning newspaper regarding our "NEW" healthcare reform. Apparently the "healthy" politicians don't think home health care is necessary anymore. Home health care is to be deleted from Medicare to help fund the new Universal healthcare for America. And just added into this healthcare plan is tax funding for abortions. I apologize in advance, but I've always felt that abortion is not a form of birth control. It has it's place, but not at the expense of the elderly and disabled.
I've written letters for the past 20 years about the lunacy of Medicare as it applies to the disabled. Now I have another reason to get on my soapbox today. I've fought for Medicare to help pay for home IV infusion supplies to no avail. Until the implementation of Part D (another joke) we had to pay for our IV meds as well. Now the only difference being the cost puts us in the coverage gap (black hole) and we pay full price anyway.

With regard to home health care, I prefer to do my own care without a nurse. I do my own dressing changes as well as IV infusion. I personally don't need anyone to take my blood pressure, heart rate, and temp another time since I already do it twice a day. And I certainly do NOT want to wait until they fit me into their schedule for the day. Add to all this: the only way Medicare will pay for home health care is if I am bed-ridden! Get real -another loophole for our government to not pay. Many who are disabled since childhood are NOT bed-ridden even though we need those IV's. Our IV site may be in a place where we cannot change the dressing, and we need assistance.
Regarding the retirees and disabled facing the end of their earthly time, then YES,YES,YES give them the comfort of home health care. Our healthy politicians must realize (and they will when finally facing their mortality) that shaky hands and weak legs MUST have assistance.
Try checking your blood sugar or giving yourself insulin when your so weak you can hardly hold the needle much less stick it in your stomach!
Another morning of writing emails, letters,and sending follow up faxes to my congressman and senators. I hope you will do the same. We need to stand together and show them we are a majority. If Universal healthcare is so great-let them join us in the program and drop the great healthcare plan they have now.