Tuesday, December 28, 2010

Update on Bloodwork

Heard from the cardiologist's nurse - the comment was "your bloodwork is stable". I'd hoped for better than that, but after careful consideration, stable is probably the best I can hope for right now.

Have not heard back from the orthopaedic surgeon, which means she gets a call tomorrow. I think the drainage is worse, the hole is definiately deeper, neither are good signs at all!!

See the regular doctor on January 4 - with a major discussion on pain management to ensue. The echocardiogram is the next week - will tell the true tale of where I stand and where my heart is.

At this point, I have plans to permanently retire in September, but the codicil that IF the echo shows further damage and deterioation, I will retire right after Valentine's Day.

Keep me in your prayers!

Saturday, December 11, 2010

I'm Back (Again)

Hello old and dear friends who think I've fallen off the face of the earth!

I didn't, but I have to say I've had a damn good summer and fall. I had posted about my power chair, let me tell you I've been all over Nashville, gone to movies and restaurants, parks and concerts - yes I saw Paul McCartney!!!! - shopping to my heart's content at the MALLS - just had a blast!

Now that winter has really set in here in Nashville, I will have to be inside more and I have some goals and activities to accomplish too.

First - I am facing an orthopaedic surgery right after Christmas. It's not the hip - it's the ankle! Yes, that word I choose to avoid and have feared for about seven years now, since the last visit to the bone doc. At that point, he told me amputation was the only choice and I wasn't far from it - so I left and never went back. Until, I hit the outside of the ankle with my chair's front wheel - not once or twice - but maybe four or five hard licks - and the drainage started.

When three tubes of neosporin didn't clear it up - well I gave in and made an appointment. Good news is - I didn't hear the "A" word. Bad news is - the outer plate has to come out since it will most likely never heal. Now that plate has caused me lots of problems, always been way too close to the surface and didn't allow me to wear any kind of shoe but a clog type.

Surgery on me is still the big "Oh God, what are we going to do?" but cardiac says ok since it's only about an hour surgery - ortho says they can give me local with minimal bleeding and after Christmas I'll suck it up and go get it done. I would appreciate your prayers - there is always the chance this is the beginning of the end and I normally just hate odd years - 2011 is an odd year.

I saw the cardiologist this week too - and guess what? With all the playing and running I've done in the last 6-7 months - I have gained 18 pounds - I am up to 425. Not good, but no where near as bad as I'd expected.

Drum roll please - my hemoglobin is up to 10.5 only 1.3 less than normal and my hematocrit is up to 35!!! Haven't seen these numbers since 1999 before the car wreck. So, if I can get my eating back on track and ortho doesn't kill me, I may make it a few more years after all.

I sure hope so!

Sunday, May 30, 2010

All of Me

So, I've addressed a lot of things regarding weight and health, but I think I've avoided something that is very important to the overall health of a person. That would be sex, or lack or it. Or, more importantly, a 1:1 relationship that is intimate and trusting.

There is a man in my life. He's been there about 11 years (since we first met). He is a great guy - educated, successful in his job, steady. Right after I met him, I had the big car wreck. Through all of that he cheered me on from afar, encouraging me in a way that no one else, not even my husband, did. So, yes, I've known him since before I was divorced.

This weekend he came to town to visit. We sat up almost all night Friday talking and catching up and sharing. He is a very cuddly guy - something most women want but never get. He gave me the biggest compliment of my life from a man - that if he'd met me when we were twenty, we would have run off never to be seen again!

As always, our visit was brief - he left Satuday morning. But, he gives me hope and accepts me and my body and all the things that don't work like they use to - if I ever had a soulmate I think it may have been him.

Even with visits that are few and far between, I have trusted him more than I ever had any other man with my heart. And, I've realized, again, that there has to be someone in your life that you can have that level of intimacy and trust with to truly be healthy.

Hoping I see him again this year!

Tuesday, April 27, 2010

The Hips have It

So, let me start by saying I'm loving this chair! I have been all over the place - it is so so nice to have mobility back that does not include pain! A friend and I go up to the student center and have lunch at least once a week. And, now I take my chair to the office. Makes life much easier - I am not exhausted when I leave there or in so much pain I can't think.

Speaking of pain - I saw the orthopaedic doctor last Friday. They did a series of xrays on my hips, pelvis and back. The good news is that my right hip is in great shape! The bad news is that my left hip is in horrible shape! There is no cartilage at all, bone on bone, and that is chipping away or being worn off. He said there is no option but a total hip replacement and there is nothing that will take away the pain in the meantime.

Also, the L4 and L5 vertibrae are out of alignment and severely arthritic - why I can't seem to stand up exactly straight and why, if I could walk much, my back would bother me a great deal. Not much to do for that - just a fact of life at this point.

I am going to see the orthopaedic surgeon for a consult - I'm not sure I can stand the surgery and I'm not sure they do it on someone who still weighs 400 pounds. But, it'll be a starting place and if it's something I have to do after I lose another 100 pounds, I'll have it on the schedule.

Good thing I got the power chair - and the doctor agreed - said I would need it!

Interesting sidenote - there was this huge black spot right near the center of my pelvic bone - Doc said "That's your fibroid tumor - did you know you have a fibroid tumor?" I almost laughed but I didn't! I did manage to tell him that the fibroid had it's very own year - 2009 - and it was not allowed to say or do anything this year!

I didn't weigh at this visit - I've been doing better and have only eat Dominoes once per week the last two weeks!

Tuesday, April 13, 2010

Progress Report what - Number 50?

Been a little behind - for one I let my home phone get cut off which zapped my internet. That's back on - just some bumps in the never-ending bumpy road called life. Thank God for the bumps though - they keep me awake! (and you make see that on facebook too)

I saw the GYN surgeon around March 15 or so - she was pleased that things have continued to be good - code for 'yay no bleeding'! Right now we're not going to do anything but wait and see and if I don't go thru menopause in the next year or so, we may do the hysterectomy.

Had an INR - holding steady at 2.8. I weighed too - down to 403 - 198 pounds lost!! Man, will I ever get below that 400 pound mark?

Saw the cardiologist this week - he said he was very happy with the progress I've made. I had gained 9 lbs since the GYN visit - thanks to Dominos Buffalo Chicken Sandwich!! I am retaining a great deal of fluid again - I guess that will never be over. Blood pressure was 124/82 can't get much better than that.

We discussed the weight loss surgery which I still don't want to have and Mitzi was with me. She commented that I'd done so good on my own - but he said that I need to get down to 200 - he don't see me any smaller than that - and that I could jumpstart the process with surgery instead of spending another two years getting it off.

The compromise - we are at the edge of summer which was great for me last year. I've signed up for the CSA Farmer Box again - and if I can repeat what I did last summer I can get 50-60 pounds off by the time I go back to the cardiologist in August! He agreed and we'll go from there! I weighed 340 pounds when I married Ronnie Martin - I'd love to be there by the end of summer.

FYI - I got my powerchair! It is great - wish I had done this years ago - I have life and freedom back - I've been all over the campus, to a concert, to church several times, just everywhere. In process of getting approved for AccessRide and at that point, the city is my domain again! Watch out for the white haired woman on the candy apple red Jazzy!!

I really got to do something with this hair!

Saturday, March 6, 2010

True Age

Have you seen Dr. Oz on Oprah or his own show talking about your true age? That's the age your body thinks it is or the age at which your body is performing.

Last year around this time when I was in such bad shape I honestly didn't know if I was going to live to see summer, I took the 'True Age' test. It wasn't so good - the test told me my body was 70!!! Now, I was feeling about 170 and like I'd already been dead for a year or two so I wasn't surprised, but I was hurt. It really did hurt my feelings to be in that bad of shape.

So, after the year I've had, three surgeries, 4 hospitalizations and losing 196 pounds, I decided or remembered actually to take the test again. This time my true age was 58.6 years!!! Hallelujah!

That is still about 9 years older than I am right now - but that is 12 years improvement in one calendar year! I'll take it!

Suggestions for me from the test were to take less meds (don't really see that one happening), increasing my consumption of Omega 3's and get more exercise (which I desparately need to do).

If I stay on the path I've been on - maybe my true age will match my chronological age sometime after I turn 50 on June 1!! Woo hoo!

Monday, February 22, 2010

Exam Results

So the mobility exam went well - I was a bit apprehensive since I didn't know what to expect. It was not too much to it really - I can't walk without assistance from someone or something - not much else to know.

I did weigh in - I was at 406. Now, I was glad not to be above 407. I can see in my legs and abdomen that there is excess fluid back on me - so I have continued to lose fat since my weight had not increased. Goal between now and cardiology visit in April - get the fluid off and maybe just maybe, hit 350 by my birthday.

My sweet little doctor told me he was leaving! He's not leaving Vanderbilt but going to be a fellow in the pulmonary institute. I told him no offense but I hoped not to see him and he agreed, as a patient, he would not want to see me since most of his time will be in ICU. He is going to see me one more time before he leaves in June and he said he would miss me! He is a real sweetheart and I will miss him too!

He continued to say something about my weight loss and I explained it to him this way. There are days you never forget, the days my babies were born, the days my parents passed away, and Feb 3, 2009 whcn I topped the scale at 601 pounds. I told him that the milestones before that should have jolted me, but they didn't. I will never forget that day and the fact that I left there severly determined to change my fate. I told him I had been sure I would have died shortly and he agreed saying I was headed for something very bad before things changed.

I am just glad I got a chance to do something before it was too late! I will be satisfied to get down to somewhere between 200 and 225 pounds - about the size I was at high school graduation and in a size 18 clothes which is so much easier to buy now than 30 years ago!

OK - next update after the INR bloodwork next week!

Sunday, February 14, 2010

Tuesday - Mobility Exam

This Tuesday I'm seeing Dr. Kropski for a mobility exam. Failure of this exam is the success - if I can't move around freely - and I've not done that in years - I can qualify for a mtorized chair. That is quite exciting to me as it will reopen parts of the world I've been closed off to for awhile.

I haven't been inside a mall in about 6 years! I rarely go to movies because the wheelchair was so cumbersome. I can't wait to go to the mall!!

I still haven't bought any new clothes - I am waiting for the shopping trip in my new chair!

More after Tuesday!

Sunday, January 31, 2010

Protein S Deficiency

This is a nasty little booger to deal with believe me. But, the good thing is that as it has become more diagnosed, it is being more understood.

The first time we heard of this diagnosis was after my Uncle Harry developed a blood clot in his leg after nasal surgery. At that point, three of his five older brothers were dead from heart attacks, so his doctor set out to see what was going on. My mom was still living at that point, and she signed release papers so Harry's doctor could review my dad's file. Ultimately, the diagnosis of Protein S Deficiency came down the pike.

My next annual physical was coming up so I brought it up to my PCP. He did some quick research since he knew nothing about it and advised I would need to see a blood specialist for testing and diagnosis. Later that week his nurse called me, having already made an appointment with an oncologist for me. She said that my platelet count was low and since I needed to have the other testing done, Dr. Graham was going on and referring me to TN Oncology.

Now, here I am going "oncologist?" That could only mean one thing to me - of which I was too scared to think. I went to the public library that very day and looked thru a book about cancer published by the American Cancer Society. I will never forget how weak my knees went when I read that leukemia is usually diagnosed after an inital blood test shows a low platelet count which dictates further testing.

My babies were 7 and 9 at the time - I thought I was going to die - literally. I didn't say anything to anyone but I got my butt into the appointment. I spent a least an hour with the doctor that day - she was good at explaining what was known at the time. AND, my platelet count was low because my platelets had clumped! Whew, what a relief! They had clumped because of the Protein S problem. There was no cancer at all!

You are born with all the Protein S your body should ever need. You don't produce it and at this point, it is not synthetically replaceable, so, in our bodies (it is a hereditary condition) somewhere after puberty starts, our bodies destroy the Protein S and sometimes Protein C that we have. Protein S works in your bloodstream as a natural algae eater, if you will. It keeps the insides of your blood vessels cleaned up - kinda like the roto-rooter that nature provided. But, if you've lost most of your Protein S there is plaque build up in arteries and this is not related to cholesterol at all. Couple the clumpy platelets with narrowed blood vessels and you have a recipe for a blood clot. NOTE: When my dad died, his body had vascular breakdown completely through out his system - but his cholesterol was less than 160. Even when I weighed 601 pounds, my cholesterol was 161. Doesn't make sense does it?

There are some things a person with Protein S Deficiency should never do - like take birth control pills. I had done that in the early 80's, before the first blood clots in my left leg, and had to discontinue them. Surgeries should be accompanied with anti-coagulation before and after, hormone replacement therapy is never an option, even dental work needs to be discussed between dentist and PCP.

Diagnosing Protein S Deficiency does require specialized labs that need to be ordered and read by hematologists. It's not something your family doctor will be able to diagnose nor treat. I was positive and my sister Amy was tested too - she is deficient. That has probably been the root of her miscarriages.

The kid's pediatrician was aware of this possibility so Renee was tested once at 14 - everything ok at that point. When tested again at 19, she was a 'low normal'. That bloodwork needs to be repeated this year. At this point, Lynn hasn't been tested. Neither have Mike or Larry - something that seems to run with the men in the family. My cousin Mylinda has been tested and is deficient, her brother and all our male cousins refuse to be tested.

Now that I also have an irregular heartbeat, anti-coagulation full time is necessary. At this point, I am on a monthly blood check for my INR - or Pro-Time - clotting time - check. I am to stay between 2.0 and 3.0 - and usually do this with 5 mg of Coumadin 6 nights a week, 2.5 mg on Friday nights only.

Lots of things can affect clotting - for instance - I am not to drink green tea and limit the green leafy veggies I eat. I love turnip greens, eating a big bait of them will definitely thicken my blood because of the Vitamin K in them. ALso, sickness, colds, vomiting, diarrhea - any of these can change your count and may require a weekly check of the INR. Antibiotics - well they bring their own special brands of hell - and you'll be getting blood drawn once a week for a month or two to recover and maintain after them.

Alcohol plays a whole other part - I don't drink anything at all now because of the meds I take. My blood is thin enough and alcohol will thin your blood even more - so it could get very dangerous. Your blood can get so thin, you will begin to seep blood thru your skin pores. That is a crisis and would require a 911 call if that ever happened.

For the persons who are Protein S Deficient, it is critical that they wear some kind of medical alert ID - and that workplace and family members know medical treatment, etc. in case of an emergency where you are rendered incapable of speaking.

But, knowledge is power. All of these things I know and they've just become part of my regular routine - I don't even really think about them.

Thursday, January 21, 2010

So as of now..

I am pretty much in a holding pattern. Things are much improved on the female problem side - so far no further bleeding at all. That means I have more blood and am stronger - which I can tell because I feel like doing more. And, I'm not wearing socks and sweaters all the time!

I have had to switch to a walker instead of the cane, which is regression instead of progression. But, my left hip is gone - it and the knee. There is no cartilage at all in either, the bones crunch against each other with every move I make, and the pain is pretty much unbearable. The strange thing with my hip though is that it didn't start acting up until I had lost a lot of weight. I suppose the extra cushion and the fact that I wasn't trying to do as much was hiding the fact that the hip wasn't working well.

Recently my PCP did prescribe the lowest level of pain killer to see if it would help. At first, I didn't think it did, but if I don't take it on schedule, I can tell a difference. I actually forgot to call in the refill earlier this month and was without a couple of days - now then I could tell it was helping. I am still in pain which seems to be linked to how much activity I'm trying to do - if I stay home and rest quite a bit - there is almost no pain. Get up, shower, dress, go to work, maybe stop at the store, well, by the time I get home it's all I can do to come inside, get in my bed, take 2 pain pills and try to get some relief.

The good thing about this very low dose is that there are no side effects like drowsiness or constipation. I don't get high off of it - so no one else would want to steal it - unless I guess they were going to take a handful??? The bad thing is that there is still some pain involved - but I'm not sure I want to take the next step yet in narcotics. My mind is still good - I'm not ready to fuzzy that up!

On my last visit to the doctor which was the week between Christmas and New Year's - I was at a weight of 407 pounds!! I have not weighed that much (little) since 1998 or so! I had hoped to be down to 400 by January 1 so I was close. I really hope to be down to 350 by June 1. That is a bit ambitious but if I stay on a steady path I should be able to do it.

And believe me when I say I need a face lift!! I am about to order some Philosphy cleansers and toners - and may even try the Preparation H - there is that much saggy skin on my face and chin.

That's not all either - believe me when I say I have no boobs left - and what is there moved way down South!! Even my legs have sags right below the kneecaps where there is additional skin. I can hope that hydration and lots of moisturizing will take care of some of this. If I am successful in getting down to 200 pounds - my ultimate goal - then I will have to consider some cosmetic lifts and tucks at that time. There'll just be no way around it being my age and at that point having lost 2/3 of my body weight!

So that's my physical update - tomorrow more on the Protein S deficiency and what I've come to know about it.

Tuesday, January 19, 2010

Update #2

Now, I had been glad for my surgery to be Monday, November 9th. The surgeon normally does surgery on Monday and Friday - and I had asked specifically not to be scheduled on Friday the 13th. I'm not a superstitious person by nature - faith doesn't have room for that - but I thought I might not tempt fate since it had already been such a hard year! Still not sure what I think about the whole Friday thing with the bleeding, except that I probably came as close to cardiac arrest as I've ever been and they sure made me believe it.

In the week after I came home, I had to see the cardiologist and the gyn docs again. I was doing ok considering the circumstances, but the cardiologist was not happy. He is a very soft spoken man, but he is Italian and God help the gyn team if they kill me!

When I saw the surgeon for a follow up visit - she informed me that she had not been able to ablate my entire uterus. It is much larger and flatter than they expected - did no one see that in the three ultrasounds I had BEFORE the surgery? So the area next to my right ovary wasn't scraped - hence I would continue to have some monthly cycle - although they don't expect it to be bad.

She also said that the surgery - normally less than 30 minutes - had taken close to 2 hours because of the size of my uterus. BUT, since I managed to survive that she is confident that once I have rebuilt blood and stamina, I will be able to survive a vaginal hysterectomy. We shall see - I'm not making any plans for that.

She also said the bleed was from my anti-coagulation therapy. Now, I'm normally on 5mg coumadin a day for the clotting disorder and the A-fib (irregular heartbeat). To prepare for the surgery, I came off the coumadin and went on Lovenox injections twice a day for 5 days before and twice a day for 9 days afterward.

That wasn't a really big deal for me - I'd been on Heparin thru both pregnancies and Lovenox at other times, giving myself a shot is just routine. However, I had questioned the dosage when I'd picked up the prescription. I've always done 1 ml twice a day - this time they've written it for 2ml twice a day. I called the pharmacy first to see if they'd filled it correctly, then onto the doctor's office and the coumadin clinic (who monitors my anticoagulation). Everyone says it's the right dose. So, I go about giving myself 4 shots a day instead of 2 - see where that got me? There is no official word from VUMC that I was overdosed on Lovenox, but I do think that's what happened.

I think I have recovered from that - I can tell that I've rebult blood - since I don't have to wear socks to bed nor sit with a blanket or afghan over me. On my last blood work, my hematocrit was up to 27 - cardiology wants me to get to a minimum of 36 - 40 would be better.

The best part is that they have all put me on a three month recheck - so I see them all again in March. Unless of course there is a problem. But, I am optimistic that there won't be and the worst is behind me.

Most of my friends here at Trevecca have said I am beginning to sound like my old self again - and I've been laughing. When we meet in the lobby to speak, I join the conversation instead of sitting there with my head down because I'm too tired to hold it up. I've been physically tired from overworking and too little sleep - especially when the kids were babies, etc. - but nothing compares to the tiredness and fatigue of anemia. There were days that fixing myself something to eat - and it would be something quick and easy - was more than I could physically do.

The first week I was home, besides being so tired, I got an upper respiratory infection. Most likely from sitting in the ER - but who knows? I had to go in for a check - in 5 days I had lost 14 pounds. That was not good weight loss - and I'm sure I put some of that back on in the yo-yo weeks afterward. I had simply not eaten for those days because I felt bad and I was so weak I didn't feel like fixing anything but toast. I have discovered too - that instant oatmeal and grits can be a girl's bestfriend when she's sick. Nourishment that is not bad for me and takes 60 seconds in the microwave!!

Although my total weight loss at this point is 194 pounds, I have not worked real hard at it since the surgery. I've actually tried to eat more meat, leafy greens, and dark colored veggies (beets and sweet potatoes) to help with the blood. I don't think I'm gaining but the losing has slowed - and has just been necessary.

Now that I'm feeling much better, I can get back on track. And the CSA will start May 1. That will be a good thing again!

I hope to update regularly from this point on about progress and share some recipes I created that were excellent food and healthy!

Sunday, January 17, 2010

Update #1

OK, since it's been so long since I updated I think I'll break it down into segments. This one will cover the surgery on November 9th and subsequent week.

I went in on the 9th for the uterine ablasion. I was still feeling a bit apprehensive which did not get any better after anesthesiology came to see me. They advised they would put me completely under and breathe for me, since they (the surgeons) would be removing tissue, etc. it would be the best. But, it wasn't what I'd expected nor prepared for. I shared with them my last experience under general and they assured me they would be sure my experience was better. One of them said they'd be sure I was loopy before they gave me the 'paralytics'!! Now, that is paralyzing drugs right? I know this, but my nerves were shot so I was rather upset by this time.

I have to give it to them - that part was a breeze. I came around without any horrid memories of the breathing tube going in or coming out!! I will say this though - I felt the worse I ever have waking up - to which I know I can contribute my overall health situation and my age. It was not fun.

After a couple of hours I was discharged and came home. Things had gone pretty well - the surgeon didn't talk to me too much - I had overheard the others saying my heart acted up a bit toward the end but I had done ok.

There was some bleeding - not real bad - a lot of bloody water from the surgery actually. Things were going well I thought. Oh, and this was on Monday!

Tuesday and Wednesday I laid around, stayed in bed alot, but generally was feeling pretty good about things. Not much bleeding and no pain to speak of - had to be a success right? Don't bet on it!

Thursday I woke up and felt pretty good actually. I got up, got a shower, washed my hair, and got dressed. Thought I felt pretty human and for a few minutes contemplated the course of the day. I was actually on my way to the bathroom when I felt like I was urinating on myself, looked down and saw blood coming thru my clothes, lots of blood, going all over me and onto the floor, etc. It was, needless to say, not a good day.

I thought that it was probably just from the surgery and I'd needed to do that since the bleeding had been minimal, but when it continued I realized I was hemorrhaging. I considered calling 911 and couldn't figure out they would be able to move me since I was bleeding so bad. So, I stayed at home until it slowed up enough that I could go to the ER.

That was not a good idea!! My hematocrit had gone from 30 on Monday to 19 - so an immediate transfusion was ordered. I got two units on Friday, then another two on Saturday when I'd only come back to a hematocrit of 23. The general concensus was that my blood had dropped further than 19 before the transfusions were started. They let me come home on Sunday, only because I am 5 minutes from Vanderbilt. My hematocrit was up to 25, but I was very weak from the whole experience.

I have strict instructions that should any bleeding start again I am to call 911, tell them I am a heart patient who is hemorrhaging and come in an ambulance. If I ever walk into the ER again, I am to tell them I am a heart patient and I am not to wait in the waiting room. My blood got so low that my heart wasn't able to get enough to pump - that is very very bad!

Since one of the GYN surgeons had come to the ER to see me and commented that my uterus had two minds - well, it's named Sybil now. And, Sybil is not going to take me out of this world!! I have lived thru too much for a small organ that is no longer useful to me to be the cause of death.

More on this next update!