I'm Still Around

It seems like forever since I have been here, but it's only been 3 months.

Let's see what's been happening: Had emergency ileostomy surgery in Feb.  Unexpected surgery in May and now more health problems - I think I need to change my blog from PH awareness to just plain old health issues - that would cover everything.

So my emergency surgery was in Feb.  All went well for about 6 weeks, then I started to prolapse again daily.  I had to keep pushing it back in to avoid more surgery.  I just couldn't keep doing that so my surgeon learned about a new technique where they take the intestines and form "S" shaped patterns and sew them together. 

On May 14 I had the new procedure done and everything was going fine until I got some horrible pains in my lower abdomen, saw my surgeon, she ordered a double Ct-scan and said to see her the next day.  My surgeon called the same day immediately following the Ct-scan cuz the radiologist was alarmed by what he saw.

To everyone's surprise they found 3 things wrong not relating to my original pain.
     1.  I now have double partial collapsed lungs instead of one.
     2.  I have a significant amount of air trapped in my stomach causing it to expand.
     3.  I now have a compression fracture of my L4

Apparently it is not a good thing to have an air filled stomach for any length of time - mine according to past tests has been noted for 5 months.  I had an X-ray 1 week after the Ct-scan to see if the air has moved - it did not - so on Monday the 24th I will be having a EGD or scope of the stomach to see what is causing this problem.

Had my EGD and results are that I have Gastroparesis to better understand this condition please click on gastroparesis

There isn't anything they can do for my lungs because of my Bronchiectasis except see the pulmonary specialist in Sept.  It just makes it harder to breathe as the space is more compromised.

As for my L4 - can't get into the Neurosurgeon until July 8th so I will wait until then.  I will try to update after I know more. 

More problems with my Ileostomy

On Feb. 11th my ileostomy decided to prolapse - it telescoped down into my bag about 6", had to go to the ER for them to push it back in.  It happened again on the 15th this time it prolapsed 10", I had to go to the ER so they could push it back into the stoma had to stay in the hospital both times to be watched.  I was told to make sure I see my doctor on the 20th.

My doctor scheduled surgery for the next day - emergency surgery was 2/21/14.  

This surgery was probably the hardest one on me in a long time.

Thanks to my Hypo-motility issues Lilly (is my ileostomy's name) can not tolerate any narcotics which causes my intestines to completely shut down, so I can only use Tylenol, ibuprofen and now Tramadol. I have to toggle between these 3 meds every 4hrs just to stay at a 4 level. It is really the pits when you can't have stronger meds to take the pain away.

Surgery Type - my doctor went in via laparoscopy very small incisions to look around and found that there was too much play with my intestines. Her only choice was to open me up - I do have a small 2" incision, a couple of small ones and the open one is only 7" long, I heard of others having a much longer incision.

You're probably wondering why the open incision? - The reason in my case is because with all my many stomach surgeries I have had done were via laparoscopy so I have very little scar tissue and/or adhesion's to hold my intestines from moving, so by doing an open incision besides tacking up the intestines I'll also get some natural scaring which can also have a negative effect - too much scar tissue can also cause obstructions, one just can't win.

I am on a full liquid diet for 7 to 10 more days, then I will go on a low residue diet again - which is not diabetic friendly - To keep things moving along, I am drinking like there is no tomorrow and taking Reglan and Miralax to aide in my stool clearance.

Lilly's open mouth or as we refer to it as the opening of the stoma has shifted since surgery and it is NOT in a good spot - due to all the swelling I got from this surgery on the left side of Lilly, her opening in now sitting flush with my skin at the very lower right edge of my wafer. The left side Lilly is standing out about 1 + 1/2" so to better explain this it is like a teeter totter. Left side way up, opening way down. So I am asking for prayers that in it's shrinking it levels out.

You might be wondering why didn't the doctor put the hole in the middle? She did but 2 days later with the increased swelling in my stomach and stoma, Lilly shifted. Trust me my doctor was shocked when she saw me on Monday. I do have a problem with this situation - if Lilly doesn't correct herself while I am healing my doctor informed me I will be facing another revision once I am healed. I need to catch a break this surgery business is the pits. I have had 4 surgeries for my permanent ileostomy in 7 months.

Thanks everyone for all you're love, support and continued prayers I would not be getting through all this without you. Truly I can feel the love that all of you send my way, I feel so blessed.

Sorry so long I tried to explain the surgery the best way I could. Debbie

Jan. 3rd learned I needed another surgery

My surgery was scheduled for Jan. 8th for a parastomal hernia repair with mesh as well as a ileostomy stoma revision.   I was only in the hospital 5 days a first for me in a long time. 

I am doing as good as I can considering just having surgery. Instead of saying "grandma got ran over by a reindeer" I can say this grandma got run over by a Mack Truck. At least that is what it feels like. I have 4 or 5 small 2" incisions all over the place plus the holes from the drain and from the central line (both of which I have to watch because they are still draining).

I will just say a few things - I do know how strong pain killers will mess up ones intestines, mine even more so because of my extremely hypo-motility dysfunction so the 3 doctors looking after me didn't want to give me anything more the Tylenol IV, Toradol IV (IBP) and Valium.

So when my pain would not go down after pulling my IV meds, I asked something stronger that Lilly (ileostomy stoma) could handle, they gave NUCYNTA 50mg, I will only be on them for 4 more days if needed. Within an hour my pain went from a 7 to a 5 and I could for the first time in a month sleep on my right side (surgery side). I am to take it every 4hrs to keep the pain to less than a 4.

There is very little side effects Thank God, it controls my pain and Lilly still goes non stop. I am not even taking Miralax, matter of fact she now goes about 15 times during the day and only once at night. Verses always at night.

The REALLY good news about this surgery was EVERYTHING was normal. I have been dubbed abby normal by my doctors and my dear friend Marilyn. This surgery was a true act of God and from all of your prayers and support. I was in good hands.

Surgery was just over 3 hrs, got sick in recovery (not up stairs), no extra IV pokes (got a central line upon arrival), could eat/drink liquids within 24 hrs (that's a first for me), Full liquids 24 hrs later, solid low residue foods 3rd and 4th day. And I saved the best for last I am home 5 days after surgery (past 15 surgeries my shortest stay was 8 days longest was 35 days. So I do feel truly blessed.

I do not have to go see Marlene (the stoma nurse) there was talk I'd have to go every 3 days, but she called 3 companies to supply me more new products and she gave me enough supplies for 2 weeks. I will have some troubles seeing the bottom of my stoma, but I have a mirror that rotates so that should help me to put my paste on.

It will take some getting use to as she Lilly has tripled in size - she's 1-1/2" tall by 2" at the top and the stem 1-5/8" other than the color she looks like a mushroom. Verses 3/4" and underneath my skin at surgery.

My doctor said my surgery was in deed necessary as some hernias do not always have to be fixed. Thanks to all of you for your love and support I could not have gone through this without your friendships. Talk to you soon Debbie

Merry Christmas

Merry Christmas and Happy New Year

From my home to yours.

Surgery is over but the wait is not

I spent 16 days in the hospital this time.  My doctor removed my rectum, sigmoid part of colon and resectioned my stoma, a new stoma was made.  Apparently what looked like a hernia was nothing more than a kink in my small intestines just below the stoma.

My doctor cut off the top stoma and made a new one by pulling up the kink unto the tummy line.  It took 14 days of no eating anything including ice chips before my intestines would finally work. 

My GI doctor suggested using a small amount of Miralax to jump start things and sure enough I began going again.  Now I will be using a small amount of Miralax on a daily basis to keep things going.

Been to see my colon surgeon yesterday because of the receding stoma - looks like more surgery is again on the table will know more next Monday.  I am dealing with painful bleeding granulomas as well which makes my appliance's not fit properly.  So I go in 3 times a week for changes.

While in the hospital I found out the my lungs are getting worse - I now have both of my lungs partially collapsed with a COPD diagnoses.  There is a fear that the PH is getting worse I will be seeing my PH doctor on Dec. 23rd to see what can be done.  My oxygen is now dropping to 90 - 93 mark at night - we need it to drop into the 80's before they give you oxygen at night.  Daytime O2 is still at the 96 level which is good.

I had to give up my percussion vest as it was causing more pain in my back muscles than it was helping me with my cough. 

As for Michelle - it had been brought to my attention by one of my followers who read my blog to read the comment section of Michelle's blog.  I learned that our dear friend has passed away on Nov. 3rd.  She fought a hard fight of breast cancer for 3-1/2 years, she is now pain free and resting peacefully.  Please remember to pray for her family.

Talk to you soon, Deb.

Where has the time gone?

I know it's been a few month's since I last posted.  I have been going through a lot.  Been to the surgeon a few times.  Went to the ER 2 times.  And will be having more surgery on the 30th to remove my rectum, last of my sigmoid colon and fix my parastomal hernia with mesh.

The surgery is necessary because I now have the worse case of Active Colitis my doctor has ever seen.  The pain is so severe I jumped 2 times on the table while asleep during my recent sigmoidoscopy. 

Many who read my blog have asked me about Michelle and I too have not heard from her since her trip to Kansas.  If any has heard from her please tell her I said hi and that I am praying for her.  Deb

3 weeks since my ileostomy

I am still trying to learn how to change the appliances.  There are so many products on the market that I have a hard time choosing what one to use.  I am finding ones that don't agree with my skin - skin rashes are now present as well as irritated skin.

I ordered all latex free products from 6 different companies some of the samples have arrived - some are going back not for me. 

I have to use pouches, adaptors, paste, powder, rings and things.  This surgery was my only resort but it is a lot of work to maintain it to prevent infections.

Lilly doesn't sleep at night so I have to set 5 alarms just so I can get up to empty or burp her.  Lilly acts like a new born - she sleeps all day and when I try to take a nap she wakes up and has to go potty - typical baby right? 

Anyway I am doing well and will get through this and it will become second nature to me with the Lord's help.

Surgery is over, now at home

My surgery was on July 10th, was suppose to be a 2 hour surgery.  A cut here, a snip there and wallow a stoma.  Yah right, not me.

I complained for 6 months of pain in my groin area where I knew my doctor originally spliced my 10" of colon to my intestines, but no doctor would listen to me.

When my surgeon went in to do the snipping she discovered my junction was completely attached to my pelvic wall, hence the pain and an extra 1hr an a half more for surgery.   Total time 3+3/4 hrs.  1hr for recoup then up to my room.

I asked the nurses to move me via the slide sheet because I know how sick I get - nope they insisted I move myself (big mistake).  I got sick of course.  I told them bring a bucket and at the same time told them I was moving my bowels already.  They said that was impossible - "I feel it" I yelled.

To our surprise I prolapsed about 6" of my intestines into my new pouch, they had to call my surgeon who was already at home.  She had to travel an hour back to the hospital 9:30 at night to put me back together again.

Now every time I cough I have to press on my stoma so she doesn't prolapse again, if she does you guessed it more surgery.  I was supposed to go home 5 days later but Lilly as I call her wouldn't cooperate so I had to stay 8 days.  Now I am home learning how to work with her. 

Ostomy Training

My Stoma Nurse is very nice, she was late and kept apologizing, she said it was one appt. after another. We told her it was okay not to worry.

I will be getting a two piece appliance because of my neck fusion, I can't see to empty it so I'll just remove it - empty it - attach it and away I go. Piece of cake.

Frieda told me that I am a lucky one as for supplies because I will not have to keep getting upgrades from other companies. I'll be able to stay with one company thanks for having a Latex allergy.

I am sorry to say this but bring it on - I am tired of "trying" to go, I am ready to get this over with.

Wednesday seems so far away.  After my surgery then I keep her until I learn how to do all the care by myself.  She said I will be coming to her on an outpatient basis once in awhile to see how well I am healing.  This shall go well I am not worried in this least little bit.

My friend said, "where's an update?"

I can't agree more with her - time sure flies by when one is having so much fun, LOL. 

I will begin with my results of Cardiopulmonary Stress Test:  
  
     I saw my cardiologist on April 16th,  I was told I have an Interstitial lung disease called Bronchietasis, which is restricting my airways and causing exercise induced PH (mild), I was to make an appt. with a Pulmonary specialist for more testing.  I already knew this from a year ago from my trip to Mayo Clinic.

     I finally got into my new Pulmonary Doctor on June 5th.  He confirmed everything and said at the present time since the PH is caused by the Bronchietasis he needs to deal with that so I do not progress to a higher level of PH.  I was told that there is no cure for Bronchietasis just treatment so that is what we will work on.

     He further said that I need a percussion vest to help in breaking up what is in my lungs.  But with my insurance they are saying I must meet all 7 criteria before they let me have one.  I meet all but one - the need for 3 different kinds of antibiotics for the lungs within a year at 3 different times.  Due to all my antibiotic allergies I have been able to only take 2 kinds, so now it's fighting with the insurance company.  I will see the Pulmonary Doctor in September for a follow up.  He said if I can't get the vest he'll have to go into the lungs directly to help clear it out.  I am praying the insurance allows me the vest.

Okay now unto the intestines:  A  problem that will be fixed soon.

     Changed my diet drastically but  no changes in bowel habits occurred even after my 10 days of antibiotics so my GI doc said it was time to go see the colon surgeon again to see if she had any suggestions.  I saw her on May 30th.  She ordered another defecography to confirm her thoughts.  which it did.  Rectal prolapse with rectal damage to the muscle, Pelvic floor dysfunction.  Nothing was working right.   She called me on Friday, June 21st and said to come in on the 25th to discuss my options, really there was only one. 

     On July 10th I will be having an Ileostomy done.  It is similar to a colostomy but only using my intestines for the Stoma because I do not have much of a colon left. 

     I am not upset with this at all as I have been in so much pain and my stomach so distended I look like I am 5 months with child.  Hospital stay is based on my body and how it responds, I will be going for  Stoma training prior to surgery but that still needs to be set up.  I will try to post more often as my friend says she checks my blog for updates on a regular basis. Talk to you soon, Deb.

Colonoscopy Completed

I had my colonoscopy done today - more problems than I thought but at least I am getting somewhere.

They only slightly opened up the stricture with the balloon.  My major problem was what the small intestines looked like.  Many areas of the small intestines were enlarged and full of fluid specifically in the area of the liver.

I had to do clear liquids for 4 days prior.  Then on Sunday did the entire colon prep.  Emptying took a total of 12 hours before I was done.  On Monday had to repeat the whole process again, I thought I'd start the colon prep at 3 in the afternoon so I could sleep all night.  Nope 12 hours later I thought I was cleared out, was not according to the surgeon.

One colon prep is all one is suppose to need, not me.  I was diagnosed with  Intestinal Pseudo-Obstruction.  This goes hand in hand with my Autonomic Dysfunction.

See site:  http://en.wikipedia.org/wiki/Intestinal_pseudoobstruction
or go to:  http://digestive.niddk.nih.gov/ddiseases/pubs/intestinalpo/

This means changing my high fiber diet to a non or low fiber diet.  No more wheat, Metamucil, my psyllium capsules.  I have always ate a high fiber diet to keep my diabetes in control and to help bulk up the stool, this will be interesting see how my new food plan works on my diabetes and my emptying.

The doctor also found that a have a bacterial overgrowth so I'll go on some strong antibiotics for 10 days then go back to see him in 4 weeks to see how I am doing.  If things in my intestines don't improve in the 4 weeks I'll be facing more tests and/or surgery to help relieve the pressure that is building up. 

My Cardiopulmonary Stress Test is finally in my Dr's hands I will get the results on April 16th.

Now We Wait For The Results

I had my Cardiopulmonary Stress Test on Friday.  A test I hope to never have again.  Not fun at all.  All they told me was it didn't look good. "We will send the test results to the ordering doctor, Dr. S. my cardiologist.  He should contact you for a follow up and let you know what to do next".  They did not say how long it will take to process the results.

They also told me to have my primary care doctor request to see one of their PH Dr's.  So Dr. K will also get the results.  Dr. R.  is booking out into June.  But that is okay with me I have been waiting for years for the proper diagnosis I can wait a couple more months.

While I was on my way to Madison - my GI doctor called to tell me my results of my small bowel follow through test were not normal for a few reasons.  Apparently my small bowel muscles are not working at all.  The other problem is at the junction where my small bowel was reattached to my colon there is an obstruction as well as it has narrowed in a few spots.  There is also a rectal prolapse that is in need of repair.

I have to call the office on Monday and schedule a colonoscopy so they can insert a balloon to try to stretch the colon enough to help things pass through.  My doctor said there are many risks involved and I might end up having emergency surgery on the spot.  I am not looking forward to this procedure.

Once this procedure is done we will then see what can be done to help the muscles work in my small bowel.   At the present time I have no clue what I am up against.  I keep telling my friends and this too shall pass.   My new nick name from my girlfriend is "abbynormal".

Now We're Getting Somewhere

You guest it the people who were suppose to do the test since Jan. kept giving me every excuse under the sun.... you have to wait a month after a cold, I'm sorry the computer to the equipment is broken we have to send it out for repairs (that took 3 weeks),  the doctor is still on vacation (for 6 weeks?) yeah right, the latest one was over a week ago we don't have a treadmill (might be able to schedule her next week, we'll call her). I never got that call. Anyway how can they not have a treadmill? And where are they getting one from?  Another state?  This test is set up in a rehab dept.  Enough excuses already I will go elsewhere.

 My Cardiopulmonary Stress Test is being done on Friday the 22nd at 2pm at another hospital in Madison, WI.  Same hospital where my new PH Dr. works out of.

I had one of my tests for my intestines last Friday, the 15th - it took 6 hrs and the doctor said I probably had to stay another 3 hrs so he halted the test and said he had enough info for my new GI Dr.  2 more tests are needed - I should get that call soon - then we can decide what path I take.  My test came back abnormal my autonomic dysfunction is causing me a whole lot of problems.  Talk to you soon, Deb.

Yes, there are more tests

Yes, there are a few tests I haven't had.  UGI - Upper GI test then a test called small bowel follow through.  I've been scheduled for this Friday the 15th.  I have to swallow barium and take pictures until it goes all the way down and out.  Can take as long as 6 hrs, depending on how long it takes for the small intestines to work.  My case due to hypo-motility issues most likely 6 hrs.  There is also a breath test where you drink some stuff and they test your breath for bacteria.

I saw the new GI Doctor - we like him very much.   He had said based on my recent test results my problem can be caused by adhesion's from my colon surgery or could be caused by my autonomic dysfunction and in that case no treatment is given.  If it is adhesion's then surgery is needed to correct the problem.

The doctor will call me with the results and let me know what is the next step.  He said that my problem is not normal and he will try to find the cause - might not be able to fix it - but he'll at least get to the bottom of the problem.

All my blood tests from my primary doctor came back just saying I have had past infections recently.   No word on the Cardiopulmonary Stress Test - that doctor is supposedly still on vacation.  Yeah right since the last week of January. 

Can any more tests be done?

In the month of February I have had countless number of tests done: Ultrasound, Xrays, HIDA Scan, CT Scan, Endoscopy, stomach emptying study just to name a few - all saying the same thing: gaseous distended of the stomach and duodenum but no small bowel obstruction. Gallbladder is functioning normally,  I had a blockage at the junction where the large colon and small intestines are sewed together - which is fine now.  3 tests also showed my right lung is partially collapsed.  They think it could be caused by a forth of my intestines are up under my liver and diaphragm into the chest area. 

Have had many different kinds of blood work done - checking for muscle and heart problems.  Still waiting for those results to come in.  Some were sent out could take 10 days I was told.

I was sent to a pain management doctor for shots in my stomach to stop the pain and the muscle cramps but the only thing they did were numb me for 2 days then the pain came back in the RUQ with charlie horses.  No relief from the shots.  The GI Dr who sent me said I had Costochondritis but my primary care doc said no and so did the pain doc.

I have been referred to another GI Doc who specializes in conditions of the small intestines - that appt. is on the 12th of March.  Not sure what he will do - all I know is I look like I have a basketball inside the upper part of my stomach and a portion of my chest.  I have pain all the time, charlie horses every evening and my water pills are not helping with that area of my body. 

As for the Cardiopulmonary Stress Test - that has never been done either.  I have called that clinic on 3 occasions in Feb. asking to be scheduled and they kept telling me the only doctor who does this test is still on vacation.  It's been a month now and clinic has told me not to call them anymore they will call me when he gets back.  I called my PH Cardio Doctor who ordered the test and told them what was going on - they called the clinic and was told the same thing "he's on vacation" and they don't know when he'll be back.  My doctor is looking into another location to have it done - he will call me back tomorrow. 

I'll update so soon as I know more.

Further Testing on Hold

I was told in December that I need a Cardio/Pulmonary Stress Test before going forward with the Pulmonary Hypertension.

I saw my PH Cardio Dr who got me in touch with the Dr who does this special kind of testing.  All plans were set, I was to have this 2-1/2 hr test on Jan. 7th.  The only thing that would prevent this from happening is a cold.

Well at Christmas time, everyone in our building came down with something and of course so did I.  I got a cold that wouldn't quit.  Turns out it was severe bronchitis.  I was put on antibiotics and cough suppressants.  I had to put the test on hold.  At the same time the clinic returned my call to reschedule the test telling me their computer for the equipment was down, it needed to be fixed.

I waited a week called back and was told they needed to get a new computer and have it programmed could take more time and I have to wait a month after the bronchitis to be well enough to have the test.  So we were going to plan the test for the second week in Feb. 

My plans are again on hold because my bronchitis came back with a vengeance.  This time I was given Prednisone, antibiotics and stronger cough suppressants.   The test will have to wait and so will my RHC because I am also having problems with my gallbladder. 

If the Gallbladder has to come out I'll have to wait an additional 6 weeks, been in testing for the gallbladder for the past 10 days.  Endoscope and ultrasound.  Final test was the HIDA scan.  Which took 2 days thanks to some complications.  7 attempts to get the IV in, then an hour into the HIDA scan my IV clotted off and they couldn't get the second part of the meds in.  Since I could not have any more attempts at the IV I was told I had to go back the next day and have a pic line put in to do the whole test over again.  I look like someone strangled my arms, they are covered in bruises.  The Dr should get the test results of the HIDA scan on Monday or Tuesday and will let me know what's next.  I'll try to keep you updated.

Health Update

I should start out with the info about my Neck.  I did have the surgery on Sept. 13 where all the hardware was removed - I have a completely fused 7 vertebrae fusion with an add'l laminectomy done on T2.  I am pain free in the cervical area with the exception of the muscles and nerves.  I am in PT for that.

While having the chest X-rays for the pre-surgery it was discovered that I have scoliosis of the thoracic area.  Which prompt more testing and I have an S-shape throughout my entire thoracic spine.  That surgeon said I am looking at a 12 to 15 vertebrae fusion.  Not at this time since I have other issues to deal with.

They also found on that complete spine X-ray a large portion of my intestines up in my chest area under my diaphragm and liver as well as a severely enlarge heart.  I was told to see my Cardiologist asap.  Which I did.  That info is following.

It has been confirmed I have secondary PH (Pulmonary Hypertension).

I have been through almost every test under the sun, my RHC with medicines will be taking place as soon as I get through my Pulmonary stress test. I will getting the date for this on Monday. Recent Stress Test was stopped after only 4 mins. I could not breathe. Heart rate 155, pb dropped.

I had 2 different PFT's at 2 different locations with the same failed findings. They are trying to get me in for the pulm. stress test asap as I have an extremely large heart at the moment. They need to find out why.

I am seeing a PH Cardiologist so he is on top of this.

Recent tests since July have been echo - approx. PA pressures were 35. Up 15 points since March.

Chest X-ray - Sept. Severe cardiomegaly with twisted aorta. Pulmonary Fibrous and scoliosis.

EKG - abnormal

PFT - failed - Neuromuscular weakness (no asthma) He wants to order a muscle biopsy to see what kind of Neuromuscular condition I'm dealing with. 1st things 1st he said.

Ct-Scans with/wo contrast showed same as chest X-ray.

Blood gases - just normal at 83.

As with everything there is more tests that have to be done - some of my current meds have either been discontinued or changed out of help aide in my healing.  

More Pressing Needs Than Myself

Hello all, I know this blog is mainly about me - but right now there's a greater need.   

A dear friend of mine really could use our prayers - her name is Michelle. you can read about her at one of the blogs I follow "Michelle's Road to Recovery".  It is on the right side of my blog down a few posts from here.

She's not doing well her cancer is back and has spread to her brain, please read her blog and pray, she really could use a miracle.  Thank you.  

More on my update soon.

What's Been Happening Since Mayo

I am not even sure where to start but here goes:

Neurologist:  Appt. is set for Nov. to go over the findings of the Brain MRI and the EEG.  

Neurosurgeon was seen last week - Aug. 28th.  He did not like to looks of my neck.  I have to have another laminectomy done on T2 and possibly T3.  I have to have all hardware removed as I am rejecting it.  The Surgery was scheduled for asap - so the date is Sept. 13th.

 https://www.memorialhealth.com/healthinfo/content.aspx?pageid=P07681

 Orthopedic:  New X-rays were taken of my Thoracic findings were:  Severe DDD changes throughout the thoracic area.  Detroxscoliosis of the thoracic spine centered at the thoracolumbar junction.  This is at the same junction where the tortuous aorta attached itself.  Needs to be watched.  

Pulmonary Specialist  Met with my new Pulmonary Dr. today.  He has confirmed Pulmonary Fibrosis, Bronchiectasis wall thickening of the lungs and blocked bronchial tubes.  I will be needing more tests as time goes on - they are on hold at the moment because of my scheduled neck surgery.  I will stopping the saline chloride treatment that Mayo started me on because it is not clearing my lungs.  My new treatment plan will begin on Sunday when I can pick up my meds. My appts. to start out with are in 1 month intervals then every 6 weeks.  Chest X-rays and CT scans need to be done on a regular basis to watch the progression of the Pulmonary Fibrosis and Bronchiectasis.

Vascular saw my vascular surgeon the first week I came home - but we put the laser ablation plan on hold for the time because there are other health issues that require more immediate attention.  I am to go back when I am in better shape (health wise).

Endoscopy and colonoscopy  were both done within the first 2 weeks of getting back from Mayo - no bleeds were found.  My Dr. is thinking I do not absorb my iron.  I was sent to my Hematologist for further testing on the extremely low Ferritin Levels.

Hematologist tests were repeated, my Ferritin levels were still low so I begun my Iron IV treatments.  I go back every 5 weeks for blood work and on the 6th week find out where I am at.  Good news I have be given the clearance to stop the blood thinners until they can find the source of my extremely high d-dimer test.  I supposedly do not have a clotting problem yet my d-dimer is high.  Being watched and tested on a regular basis.

I believe that is it for now - still more tests to be done - but not until after my neck surgery and I have had at least 6 weeks of healing behind me.  Thanks for reading. 

Mayo's Findings

Here is somewhat of Mayo's Findings according to the Internal Medicine Dr. who was my go to Dr.  to get everything done.

The clinics I went to were: Neurology, Cardiology, Cough clinic, Vascular, Autonomic, Blood clinic, Urology, I had Xrays, Ct scan, blood work on 4 different days and a host of different tests.  Because I was on blood thinners no procedures were done there that required my being off them.  If I needed a particular procedure it would be scheduled when I got home with my Hematologist directing things.

I will start with my head my work my way down.

• MRI and EEG shows excessive fast activity in the posterior aspect of right globuss pallidus.  (Needs following with Neurologist).
• Xrays of the spine: facet disease at the C2-C3 area as well T2,3,4,5.  Bulging disks and DDD at the T4, T5 area of the thoracic.  T2 prominent spinous process is eroding needs intervention. Loosening and/or protruding hardware found throughout the fusion. Cervical Spondylois. (Surgery is indicated at this time, see Neurosurgeon at earliest appt.). 
• Chest Xrays:  Mildly tortuous aorta.  Thoracolumbar curve.  Colon or small intestines are interposition between the right hemidiaphragm and liver.  
• Lung Xray and Ct Scan:  Scattered linear opacities in both lung bases with architectural distortion and bronchiectasis related to pulmonary fibrosis.  Also found to have bronchial wall thickening. EMG confirms Neuromuscular weakness.  Bilateral timy calcified granulomas.  2 - 2mm nodules seen in left lower lobe definitely not calcified. (to be watched.)  (Further tests need to be done, can be made with specialist who works with Pulmonary Fibrosis). 
•  Cough Clinic:  Findings:  Chronic cough due to idiopathic fluid retention, Bronchiectasis, Pulmonary Fibrosis and idiopathic Neuromuscular weakness, (follow - up with Pulmonary Dr in 6 weeks, can be done at home or here).
•  Hematologist: Findings:  Von Willebrand disease, iron deficiency anemia, Protein S, Protein C deficiencies.  (Follow-up with Hematologist at home).(Further recommendations is to have an EMG and Colonoscopy to find the source of bleed - iron defienct anemia has been present since 2007, can be done here or at home).
• Vascular: Findings:  Bilateral lower extremity swelling.  More notable on the right than left.  RSDS on the right foot.  Has clubbing of fingers and toes.  Lower extremities cool to the touch.  Has some venulectatic and telangietatic varicosities in both calves.  Ultrasound confirms 3 bilateral small saphenous vein insufficiency.  Also confirmed including RSD, autonomic dysfunction and  lymphatic dysfunction caused by knee operations.  (She is to see her Vascular Surgeon at home to have what I would recommend a procedure of small saphenous vein laser ablation). 
• Neurology: Findings: Autonomic dysfunction of intestines, bladder and right leg.  Periodic Limb Movement Disorder, Urological issues. (Continue treatments with home Neurologist).                         

 I will re-read the notes from the Dr to make sure nothing is missing.  Next blog in a couple of days will be what I have been doing since Mayo.