One more problem, Grrrrr!!

[Black]

I've been battling hypothyroidism for over 20 years with incompetent doctors who would have killed me if I had not taken matters into my own hands a few years ago.  Thank God, I have a great medical team now and they literally saved my life.

Fluid retention is a symptom of long term hypothyroidism and I have battled myxedema for months.  After several very painful nights, and a few doc visits, I was sent for an ultrasound of my left leg.  After a hour and a half wait, a less than 5 minute ultrasound I was told, as the tech bounced out of the room, "You have no clots in your arteries." The pain finally got so bad I was taking two Lortabs every night to get some sleep and still waking several times a night with excruciating nerve pain in my leg!

After a referral to a vascular specialist, and a thorough ultrasound, (took almost 90 minutes) it appears I have total blockage of the main artery just above the knee.  (I want to choke that idiot who did the first ultrasound!) The nerve pain was happening because I was lying down and gravity was not pulling the limited blood supply to my lower leg through the tiny collateral arteries which my body had formed to bypass the blockage.  The nerves were screaming about the oxygen deprivation!  I have to limit my activity so that the leg muscle is not oxygen deprived due to more exercise than the blood supply can support.

Mike is starting dialysis on 2/5 -- three weeks of training for home dialysis on the NxStage, so my problem has to wait until the last week of Feb.

The vascular surgeon said I need one more ultrasound to map the veins in the area, in case they find I need a bypass or graft.  The next day I go in early for a veinogram.  Because I have previously had a violent reaction to contrast dye I have to take 150mg of prednisone in three doses before the dye injection for the veinogram - 50mg 13 hours before, 50mg 7 hours before, 50mg one hour before.  WHAT IS THIS GOING TO DO TO MY ADRENALS AND THYROID and what kind of side effects am I going to have  and how long will they last?  I was so stunned when the doc told me all of this I didn't think to ask questions.

If the veinogram shows a small enough blockage that it can be fixed with a stent, then they'll put in a stent.  If it's more complicated they'll do a bypass, or a graft.

In the meantime I am to NEVER elevate my foot.  I have to sleep in a recliner with my feet down, and take 81mg aspirin every day.  I did that last night and not one pain all night long (Hooray!!!) -- but I still did not sleep well.  Guess it will take some getting used to as I usually sleep on my side.   AND, this morning both ankles were very swollen with fluid.  (They're usually near normal in the AM and swell as the day goes on.)

I had discussed the fluid with the vascular specialist and he said it is totally unrelated to the vascular problem and suggested I see my GP, an internist or, since I am being treated for hypothyroidism, an endo.  I'm sure the meds I am on will eventually take care of the myxedema,  but I need some relief NOW and propping them up is no longer an option!  When I speak with my GP on Thursday I'm going to demand a low dose of lasix.

Just knowing the cause and solution for the horrible nighttime nerve pain is really a relief, but I really look forward to March when it's all behind me, and Mike is comfortable with his NxStage.

Prayers for both us are appreciated.

Lorelle

[anja]

Lorelle, so sorry for all the pain and difficulties you are having.  Keeping healing thoughts coming your way.

[Sluff]

Extra prayers coming your way  Black.

[nextnoel]

Black, you've got my prayers.

[Black]

Thanks for the kind words.  Right now this is the only place I feel like everyone understands.  Starting training on the NxStage is not exactly a stress free situation, and then add the fact that Mike is starting dialysis for the first time as well -- yep, I'm nervous!  This blockage in my leg is making it much worse.

   I spoke to the GP today (closed yesterday because of snow).  He won't prescribe lasix because the left leg ankle/leg/foot is twice the size of the right so he is convinced it is a vascular problem and wants the vascular specialist to decide what to do.   

So, I called the vascular specialist's office and they don't want to do anything until I have the ultrasound on Feb 28. 

I have ONE pair of shoes that I can get on my foot.  If it gets any bigger, I'll have to go to my fuzzy slippers, which are not the best for walking dogs in the snow and mud. 

Next week we'll be training and I need to be 100%.  Damn it, there is no way I can be 100% with this aching swollen leg and foot and sleeping in a recliner with my foot hanging down    and making the four hour drive back and forth twice a week to keep my little dog boarding business operating.   I'm tired just thinking about it!!

Of course, the whole time I will try not to think about what they'll find on the ultrasound on 2/28 and about the surgery on my leg on the 1st.  If they use a stent, I'll have to be on blood thinners for months and recheck often (ultrasound and/or veinogram) to be sure it is not reclosing.  If they do a bypass or graft, I'll have to have the same frequent rechecks, plus the life expectancy of the bypass/graft is about 5 years!  So, at somewhere around age 65, or a little later if I'm lucky, I'll be doing this again!  Oh, the joy of getting old!

All I want to do right now is try to make things easier for Mike.  I don't want to think about me!!  I'm tired of thinking about me.  I battled with my doctors for years over the awful ineffective synthetic thyroid meds.  Last year I finally found a good doc that believed me and am prescribed the natural thyroid med and I'm finally getting better.  Now, that I feel like living and feel like being good support for Mike, I have this leg crap!!  If this blockage were to have happened six months from now I wouldn't care, but right now he needs me the most.  I have to appear to be confident.  If he had any idea of how scared and nervous I am, he would be more terrified.  I've even minimized everything to do with my leg because I don't want him to think there is a possibility that I'm not going to be here for him.

Thank you, Epoman, for giving me a place to unload all of this.  Thanks again everyone, for the kinds words -- support and prayers are greatly appreciated.

[okarol]

Awww Lorelle, I am so sorry.
I cannot understand why no one can help you get immediate relief for the
leg swelling! It seems that more damage can take place to tissue and other
veins - what do they say about that? Jeeez, if you weren't so active in your
care, I cannot imagine what would happen!
Don't worry about Mike. Things will work out. Try not to worry too far ahead.

Hang in there! 

[aharris2]

i know this might sound awful to you and you will probably say what a maroon, but think happy thoughts they will help....my happy thoughts are with you.

keep the faith,

Rolando

[Sara]

Lorelle, I'm sorry you've been having this problem with your leg.  How are you doing now?  I hope Mike is getting along fine with dialysis.   

[Black]

Lorelle, I'm sorry you've been having this problem with your leg.  How are you doing now?  I hope Mike is getting along fine with dialysis.   

Thanks, Sara.  Mike is doing great.  His fistula is working well - running at 430 on Thursday.  Training nurse has been working on buttonhole but still using sharps on day 12.  I am supposed to do the sticking tomorrow. Yikes!!  I hope not!

My leg is about the same.  Pre-op for that surgery is still set for 2/28 and surgery on 3/1.

BUT, I had a gallbladder attack on Wed morning and spent several hours in the ER in Charleston - usual ultrasound, blood work, etc.  Now I realize that the "gas pain" I have had occasionally under my lowest rib on the right was my gallbladder warning me it was not happy.  That pre-op is scheduled on 2/21 and surgery on 2/23.

I'm leaving for Charleston in a few hours (waiting for board clients to pick up their dogs) and have to make that long drive back home on Wed and then back to Charleston Wed night.  Then back home on Thursday night for surgery the next morning.  Sure am glad I got my oil changed before I started all of these 200 mile trips. 

   Should I change the tread title to "Two more problems"? 

Oh, BTW, while I was in the ER in Charleston, the hospital had a minor disaster.  They were doing construction on the surgical wing and the crane collapsed - the whole building shook, including the floor!  Thank God, no one was hurt but the crane took out the heat & A/C for that whole wing and contaminated the ORs.  They were scrambling to get surgery patients moved to other hospitals.

   Is that a black cloud following me?

[goofynina]

Lorelle,  sorry to hear all that you are going through, you just keep your pretty head up girlfriend, it's gonna get better,  we are here for ya always... 

[Black]

Gallbladder removed on Friday -- sore, moving slow, and trying not to cough or laugh.   Leg ultrasound still set for 2/28 and leg surgery for 3/1.  They had to do the galbladder surgery with the table tilted with my feet down so the bad leg could get blood supply while I was having the surgery.  Since they usually tilt the table the other way that could account for the bruising -- belly button has a 4" purple halo.  The anesthesiologist was NOT happy.  She had wanted them to put me on antibiotics for several days and do the leg surgery first, and then the gallbladder.  Oh well, so far everything seems to be fine.  Darvocet follows every coughing spell, and makes it much easier to sleep sound in the recliner with my leg hanging down.

Tomorrow is the visit by the training nurse and first dialysis at home.  Mike has the cycler and PureFlow set up and connected.  Making the batch tonight.

There are also a few nurses, maybe 4 or 5, coming from local clinics to watch and check out the machines.  We're hoping their observation will result in a new NxStage training program going into Spartanburg, SC.  It will be great for local people and much more convenient for Mike's monthly visits.  Spartanburg is 45 minutes away -- Charleston almost 4 hours!

Time to hit the recliner again -- trying to get the healing as far along as possible before the leg surgery on Thursday.

I plan to post more about the NxStage training but will have to wait for surgery to heal, and pain to subside.

Thanks again for the kind words and prayers.

[Ohio Buckeye]

I'm glad your gallbladder surgery is over with.
You and Mike are sure going through a lot right now.
Difficult days I am sure.
Hope the training goes well and you recover quickly
from both of the surgeries.
You are on my prayer list.

[angieskidney]

Wow you have been through so much! My prayers are with you! 

[anja]

  Continued well-wishes to you during your short  gall bladder convalescence~ before the leg surgery.  Hope all goes smoothly on the 1st!    

[kitkatz]

Prayers are going out for you and your family!

[okarol]

{{HUG}}} 
Take care.

[nextnoel]

Congrats on getting 1 surgery out of the way - I'm sending good wishes your way for a fast recovery from that one, and for a positive outcome from the next one! 

[charee]

Hoping your feeling better 

[Bajanne]

My caring thoughts and prayers are with you both.  Some people just seem to get a lot to bear.  I like to think that this is a chance for us to see the strength of the human spirit. You just have to keep on keeping on!

[elizabetht]

Hi,  Thank you for your posting.  My friend has the exact same symptoms and has gone through the same problems with the doctors. I printed your posting and will give it to her tomorrow. Maybe a little humor will help.  What is the difference between God and a surgeon? Answer. God knows He is not a surgeon.

[okarol]

How you doing lately Black?

 

[Sluff]

How's the leg Black?

Please update us.

[Black]

... Maybe a little humor will help.  What is the difference between God and a surgeon? Answer. God knows He is not a surgeon.

Just saw this reply.          I'll have to remember that the next time a surgeon decides I am not sufficiently impressed by their title,  "Surgeon". 

[Black]

Thanks so much for all of the kind replies.   Summer has been awesome and very busy.  Thank God my business has been good and I managed to squeeze out some profit to make some much needed repairs and upgrades.

The NxStage has become routine, with few errors and almost no alarms.  Still waiting for the neph/clinic to decide exactly what his new prescription should be so we can change the machine settings.

The time for dialysis has been difficult to work into my schedule, especially on the weekends while caring for 15 to 22 dogs, but we usually wind up doing it sometime between 7:30 and midnight most nights.

My leg has been much better with the Lyrica for the nerve pain, the cilostazol and baby aspirin for increased blood flow, and custom made orthotics in my shoes for extra cushion and to correct a problem found by a podiatrist - only after I refused pain medication and wanted a diagnosis instead.  In addition to the blocked femoral artery, I had dislocated the pad on the ball of my foot and pushed it up behind my toes -- very painful and usually associated with long distance runners and people on their feet a lot like nurses, waitresses, and DOG WALKERS (like me).  Orthotics are pulling it slowly back into place and the pain has gone from a 8 or 9, to a 2 or 3 - haven't used my cane in weeks - HOORAY!!

Now, I am coping with my mother, age 81, being diagnosed with breast cancer.  Looks like they caught it early but won't really know until the lumpectomy is done on 8/25 -- praying the lymph nodes are clear.  Also, we're waiting for biopsy results on my dad, age 89, - possibly cancer in the lymph nodes of his neck.  He has had an ultrasound and 3 CT scans, and two biopsies, and still no conclusive results (we're waiting for results of the third biopsy).

I want to go to FL to be with them and to help my sister with all of the doc appointments she has to take them to -- 2 general practitioners, 1 ENT specialist, 2 radiologists, 3 surgeons, 2 oncologists, 2 cardiologists, 2 anesthesiologists, etc.  But, here I am in SC, stuck here with Mike and his NxStage, and also, mostly because I can't leave the business -- have to have the $$$ to keep body and soul together.  Just gas alone to FL, pulling a 35 foot 5th wheel camper, is more than I even want to consider right now.  Not to mention what closing my business for a week or two would do to my client base.  If something happens to Mike the business will be my sole means of support so I have to keep that in mind as well.            I hate having to figure the financial ramifications instead of just doing what I want to do and screw the results.   I want to go be with my parents and instead know I have to use good judgment and let my sister handle things instead.  She is wonderful with them and never complains.     She is my hero.

Prayers for my parents and my wonderful sister will be greatly appreciated.

[angela515]