's Conn's Srory

[Guest guest]

Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways!

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2011/02/17 - By way of introduction, I am , a 64 year old morbidly obese individual living in Graniteville, VT and currently being treated at the Veteran’s Hospital in White River Jct., VT. I will be meeting with a surgeon at DHMHospital next Tuesday to try and figure out if there is anyone qualified to treat Conn’s Disease. I am in a unique position because I am able to get all my treatments thru the VA, I have private insurance thru my previous employer and I am on Medicare Part A due to disability so I will be looking for the best place to find treatment.

This is not intended to be a full autobiography at this time but I will hit the highlights and plan to backfill later. (I need to introduce myself so I can start reaping some of the benefits of this group and Dr. Grim.) I feel like I was on a treadmill for 63 ½ years and then the train left the station and we are now traveling at Warp Speed!

In addition to self diagnosed Conn’s Syndrome I am Morbidly Obese (315 lbs.), have Obstructive Sleep Apnea, am on Oxygen full time, am Diabetic Type II ,and have a continuous pain in my Right Flank area that radiates to my Right Testicle. (Does anyone want to guess on which side the Adrenal Adenoma is?)

I have had high blood pressure for as long as I can remember. I worked in Computer Programming and Management for 27 years until I took early retirement at age 50, save your fingers - it was 1997! It was an insurance company that had a nursing staff so they had me on weekly BP checks and blamed it on stress and white-coat syndrome.

After I retired I got bored, got my CDL and became a Tour Bus Driver. I always fought to keep my BP under the mandatory CDL threshold of 140/90. Through the magic of medicine I was able to do so and simply blamed its elevation on stress and w-c syndrome again.

In 2005 I returned from a 4-day trip to Toronto and had developed a pain in the kidney area of my right flank radiating down to my right testicle. I figured I had pulled something handling baggage and it would heal itself in a few days. When that didn’t happen I went to my local family doctor and he referred me to a Nephrologists. I went for a CT Scan and they found 2 small stones in my right kidney. We agreed to use pain medication and wait to see if they would pass. He recalled me in 3 months and repeated the CT Scan. The stones were still there but his opinion was that they were not the cause of my pain because of where they were located and the fact that they were stationary in the wall of the kidney. He sent me back to my family Dr. (There’s two that will be getting your “evolution of PA†Dr. G.!)

I decided to go for a second opinion and decided to pursue that through the VA Hospital in White River Jct, VT. I felt this was a good choice because they not only have good doctors, they also have access to the doctors at DHMH. (This is the largest hospital in the area and a teaching hospital affiliated with Dartmouth College.) While the doctors are good and the service was “top notch†my being back in a more military environment unleashed a severe case of PTSD, dating back to my service in Vietnam. Enter “shrinks†and depression medicine (Duloxetine hcl 80 MG, and MIRTAZAPINE 15 MG with a LIOTHYRONINE 5 MCG kicker!)

I was assigned to a Resident Dr. He referred me to a Nephrologists and he along with a bunch of other doctors took turns “adjusting†my high BP meds. The kidney Dr. (there’s another one to get Dr G.’s evolution of PA) came to the same conclusion as I had previously gotten - there were two kidney stones so he didn’t think he could help me. With nobody being able to come up with a better idea they decided it best to treat me with pain medicine. We added METHADONE 20 mg and OXYCODONE 10 MG/ACETAM 650 MG to the mix and that put an end to my professional driving career! (The government frowns on us using narcotics and driving the big rigs!) I guess the plus side if there is one is that I was put on 100% disability.

Fast forward about 5 years to the summer of 2010. During those years various doctors and nurse practitioners tried different BP meds, both strengths and the meds themselves. I ended up transferring to a different unit and got a new primary care provider, Dr. Lynn Webster. In 2010 I had actually been with her for probably a year and they established that I had Diabetes Type II. Add METFORMIN HCL 1000 MG to the medicine mix.

Around this time my wife insisted my BiPAP machine wasn’t working as well as it had been so I’m off to DHMH for two sleep studies. I flunked the first one because I ran out of Oxygen. The second one determined they needed to raise my settings from 17/11 to 19/13 and needed nocturnal oxygen therapy of 4L. I saw Dr. Webster soon after this and asked her, “If I need oxygen when you are forcing air into my lungs at night, what happens during the day when I am drawing it in without a biPAP machine?†She thought that a good point so she put an Oximeter on me and walked down the hall. When we got back the meter was reading 83 so, you guessed it, Oxygen full time (2L normal and 3L with exertion).

Chapter 2! - Now if you have hung with me we get to the good part - The Conn’s determination.

It is around June of 2010 and the BP meds are as follows: AMLODIPINE BESYLATE 10 MG, CLONIDINE 0.2MG/24hr patch, HYDROCHLOROTHAZIDE 50 MG, LISINOPRIL 40 MG, LOSARTA N 100 MG, METOPROLOL TARTRATE 400 MG, MINOXIDIL 10 MG, and POTASSIUM CHLORIDE 40MG SA. (Does anyone see any problems yet? That’s only 8 including Potassium!) With all this we are able to get/keep my BP in the 160ish/83ish range. It will “float†10 pts. either way.

The VA brings in a doctor to look at problematic BP (and I think other meds and their interaction.) Dr.Webster jumped at the opportunity and made an appointment for me.

I go to the appointment and meet Dr. Faysal Yousifi who is a Nephrologists from Long Island. (He will hereafter be referred to as Saint Faysal!) I wasn’t impressed to be seeing another Nephrologists and asked him what that was all about. He said he was going to “Fix my BPâ€, to just bear with him.

St. Faysal’s plan: He took me off HYDROCHLOROTHAZIDE and MINOXIDIL and put me on FUROSEMIDE 40 MG and (drum roll here would be appropriate) SPIRONOLACTONE 25 MG. He ordered some blood work, gave me a target BP goal of 140/80 or lower and wanted to see me again in about 6 weeks. (That turned out to be an easy goal, I was almost instantly in the mid 130’s over 70ish area!)

When I saw him in mid August he was simply ecstatic with my readings. He was just like a kid who had just gotten everything he had ever asked for at Christmas. He jumped up, shook my hand and did a little dance, not once but three times during that appointment! He ordered up a CT Scan and raised the SPIRO to 50MG. He set up another appt. for me in Dec. and put in for an appt. with an Endocrinologist. Then he told me his time in VT would be over and he would be moving on “before snow fliesâ€!

The CT Scan came back and showed: “There is a 13 x 12 mm well circumscribed ovoid hypo attenuating lesion in the right adrenal gland without significant interval change in size since the prior study. Left adrenal gland is normal. (They apparently were able to go back to the 2005 scan and find it although there was no mention of it in 2005 as far as I know.)

I saw a resident Endocrinologist and my BP’s were running in the mid 1teens/low 60’s (116/62, 118/64, etc.) They tell me since I am getting no adverse reactions that they are happy to leave it there and she started removing other BP meds. She asked me which one I wanted to get rid of first. I tried to tell her that was her job but we finally agreed to get rid of the Losartan. She indicated they would wean me off all the BP and then leave me on a long term treatment of Spiro. I told her that my studying told me that we should remove the right Adrenal Gland if it proved to be a unilateral adenoma.

I told her I had observed a few comments of, “the best part of it all is that I got rid of my flank pain after the offending adenoma was removed.†She indicated that it was “such a small tumor†that it wouldn’t be causing any pain. I told her I was a big boy and could accept it if I was wrong but it was worth a chance of “fixing†it if that was acceptable practice. She indicated she had “7 years of training†and it was her job to decide the best course of action. I explained to her that she would explain the options along with the risks but I would decide the course of action! I will probably be in the market for an Endocrinologist if you have one!

I am interested in other’s experience with eliminating Flank Pain if you had an adrenalectomy.

She spoke with her attending physician who said an AVS would be required “no matter what, nobody would proceed without one“. She indicated we had the best specialist in this area to do the test. I’m not sure if he has done 3 and everyone else has done 1 but you can “bet your bippy†I’ll find out before they start probing me! I let her know I really questioned potentially risking a problem with the veins for the left adrenal gland if it was a forgone conclusion we were going to remove the right one. (I have done some more reading and see there actually is some merit in her position!)

She apparently set up an appt with my Pulmonologist to see if they would “sign off†on an operation. That doctor felt the question was premature until she knew what procedure we were considering! I tried to get her to consider AVS and she said she considered there to be three risk categories, low, medium and high. She put me at a medium.

I finally got back to see my Primary Care Physician, Dr. Webster, last week. We had a long conversation regarding what had been going on in the last 4 months and the direction I saw thing going. She indicated Conn’s Syndrome was a “once in a lifetime experience†for general practice internists. I told her that may change after she read a copy of Dr. Grim’s “evolution of PA†(of which I provided her a copy.) She was very appreciative of it, promised to read it before we met again and asked that I “keep her in the loop†with anything else I came across. She had apparently read my Endocrinologist’s comment that such a “small tumor†couldn’t be causing pain. I suggested she might get up to speed before she decides what it might and might not do. She agreed that that was a prudent approach!

We talked about eliminating more of my BP meds and decided to leave it as is until I get a chance to talk to a surgeon. We decided a lot needed to happen if AVS is in my future and we should come up with a plan. I meet with the surgeon, Dr. S. Laycock at DHMH, next Tuesday (02/22/2012) and will be exploring credentials. (On paper he looks good. He lists “Endocrine Tumors Program†among his specialties and “Laparoscopic Surgery for Adrenal…†under his practice notes. I feel I am still looking for a qualified Endocrinologist and Surgeon and will see what DHMH has to offer and what the VA recommends. I’m trying to keep an open mind at this point but may have to go to the greater Boston area to find the right solution. I haven’t ruled out the studies in Bethesda and would be interested if anyone in this group has experience with that.

I haven’t included any of my lab reports because the VA sent me 15 pages and I am not sure exactly which numbers you are looking for. I also don’t know if my being on Spiro will have any adverse effects. Tell me what to send and I won’t copy all 15 pages to you!

If you made it this far, thanks for humoring me! My current BP is 107/67 using the new 3-sampling method that I just learned! (I just realized I spent most of the afternoon in front of the screen, without even a nap and I still feel quite alert! Maybe, just maybe the Spiro is having a positive effect!)