Tuesday, February 1, 2011

First Week of Month of 4 Exchanges a Day

Okie Dokey. I have to admit there have been a few tears and a little frustration but only because I expect my body to do everything perfectly....The first week or so of doing PD yourself is fine tuning the procedure....very few people are text book...in other words.what you put in and what you put out exactly matches....or the timing doesn't work for your body....The blessing is your PD Nurse of which I feel Beaumont has two of the finest. Barb and Jill. They are amazingly knowledgeable about absolutely everything, Additionally Lorreta the MSW literally knows everything there is to know that could help you and dietitian Soon really understands the challenges of PD patients when it comes to eating and has answers help you get that protein in. My point is it takes a village and amazing husband and friends to get this thing off the ground. PLEASE renal patients reach out to all the available help there is for you. These people are not in it for the money they really really care about you. I have never left a message for Barb that I wasn't called back with in 10 minutes. DON'T WAIT ...call and ask questions so things don't go down the crapper...and they will quickly if you don't stay on top of your procedures.

My deal is apparently I have a fast transfer rate. The first day doing at home I felt like a balloon and was a little short of breath...bad sign for fluid retention...Barb developed a better schedule for me and it worked like the bomb....then I woke up with a stabbing pain where my catheter is  by my bladder....of course I am sure I am a goner....Barb figured it out in a minute...I needed to leave some dwelling fluid in to cushion where the catheter is....went and did it and sure enough it worked like a charm....The last two days I am right on schedule with 4 transfers equal in equal out...It took me one week to get my body to agree to this. I am detailing this so you patients can understand how important it is to talk to your support people. You cannot do this on your own....my BP is already going down...It's like trying to get an antique clock to keep the correct time...ya gotta fiddle with it until you find the right swing of the pendulum. I can see this is going to be a great success..my energy is increasing everyday...everyone was right I really didn't realize how crappy I felt because I had gotten used to living with it over the years.....the light I see the light hehehehehe.

Well I don't go to clinic till next Tuesday so we will learn more then. You do have a few aches and pains as you get used to the PD and I do get tired but nothing like before....I have learned to listen to my body and not push too hard yet.

I am so excited because I have enough energy to go out in the upcoming blizzard with our dogs.... I am still working on more  'Words of Wisdom' blogs for those living with Chronic Illness but I want to cover the progression and technical details of PD for my renal people....I am contemplating dual listing in two other states...ones w/o helmet laws...I know that sounds sick but facts are facts and if they don't care about preserving their lives who am I to turn down a kidney. Oh and all you sky divers make sure you sign your donor card BEFORE you go. You may not appreciate having a perfectly good body and want to throw it out of a plane but if that chute doesn't open and your organs are smashed beyond use....do you see my hand up????? You don't appreciate what you have until you don't have it. anymore.

Another thing I am going to start working for is making each state an 'OPT OUT' state. In other words you are an organ donor unless you opt out. The benefit to minorities would be phenomenal..because while a race to race match is not necessary it can open up many more matches for minorities on the list. This would also help reduce the number of donors who have signed consent yet whose family refuses to allow it...Yes this happens so all you donors make sure you #1 have it in writing notarized and #2 talk very sternly to your family and tell them you will come back and haunt them if they go against your wishes. Realize people that organ being alive in a person who needs it means your loved one lives on....it's a fact.

Some things I want to cover in the future are : Raising Children when you have a life threatening illness, dealing with difficult friendships and accepting your new life, staying positive even though your patience is wearing thin, accepting your new body image and dressing to look great ( I am making all new clothes to disguise my 'new umbilical cord')...and many other things

I want to congratulate my oldest son Dan on his big promotion and thank him for sharing this exciting time with his mom and dad. I appreciate the daily check up calls so much, don't worry Danny my little (big) buddy I am here to stay for a long time and love watching you enjoy your life so much...xoxoxox We are gonna find the perfect house I just know it.

More after the big blizzard....
Stay Safe and Warm!!!!!

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