It’s time to share. There are two things I want to accomplish with this post. I want to leave a written record of what happened to me. Hopefully it will help someone else some day. I also want to thank the people I reached out to, who gave it to me straight, and scared me into action. You probably saved my life.
My story starts 13 years ago when I got DS/ BPD weight loss surgery. I live in Illinois, and got the surgery done in Ohio. I checked back (physically) with my surgeon at one year, and continued contact with him (sending him my labs) at least once a year…until he retired. The closest surgeon and support group of my type of surgery was over two hours away, and it was never necessary for me to search them out. I was active on a DS forum for a couple of years, but slowly lost interest. I faithfully took my vitamins and ate good protein, as recommended by my surgeon. I got labs done every 6 months. The labs I had done were the same labs my surgeon requested me to get (basic chem. screen, UA, and CBC). All went very well for about nine years. I felt well cared for with my home primary care MD, who is really one of the brightest MDs in the area
About five years ago I had my second bone density scan, and I went from having osteopenia to full blown osteoporosis. My MDs approach was to put me on Boneiva, but I started researching calcium and vit. D. I discovered that my surgeon’s recommendations for calcium and vit. D was far less than what other weight loss surgery patients were taking. Shoot, I even thought just the calcium level in the chem. screen was the indicator if I was getting enough calcium. After educating myself, I talked to my MD about getting tested for PTH. Sure enough, my PTH was high, and I wasn’t getting enough Vit D which in-turn affected my body’s ability to maintain bone health. I took myself off Boneiva until my PTH level was back to a normal value, as the literature clearly states that Boneiva should not be taken if one is hypocalcemic. To short cut to the end of this chapter of my story, I was able to maintain a normal PTH value for two years, and my recent bone scan showed improvement (as in going from osteoporosis back to osteopenia) in my bone health. My MD still wants to go ahead with an IV infusion of Reclast. Has anyone gone through this procedure, or have information on how this works with WLS patients?
On with my story: About a three years ago I retired. Looking back, I remember spending a lot of time sitting at my work desk thinking about what I was going to eat next. Retirement was different. I was happy and involved in setting up my own business. I was not, however, very attentive to my diet (especially protein intake). I started to experience occasional ankle swelling. I saw my MD, and he was quick to point out I probably wasn’t getting enough protein. So I stepped up the protein, and the ankles deflated. It is strange how quickly I kept forgetting how important protein was. I experienced the ankle swelling issue at least two or three times, each time with increasing fatigue. The protein issue was soon forgotten by me and my MD. The focus shifted to my fatigue. I had hypothyroidism and my hgb levels slowly started to get lower. I spent six months on a merry-go-round of seeing my MD for increasing fatigue and having my MD slowly increase my thyroid medication. It didn’t help, and my hgb. Level was going down. My liver enzymes were going up, my protein values were down. I began to feel my body slipping. I lay in bed at night and wondered if I was going to live. My MD did all sorts of tests that came back negative. I began to suggest that perhaps the problem stemmed from mal-absorbsion. That thought was dismissed by my MD. I think my growing list of symptoms overwhelmed him. Finally I was sent to a Hematologist and had a bone marrow biopsy. The results showed a slight suppression of all three blood lines (RBC, WBC and platelets) that are produced in the marrow. I talked to the Hematologist about my weight loss surgery, and how mal-absorption might be root cause of this problem. He wasn’t buying it. In fact, he recommended I go off all vitamin supplementation while he figured out what was wrong with me. It was at that point I knew that it was up to me to get the answers and my health back. I ignored his recommendation (I later told him I did this), and started an internet search for help. I spent hours and days searching and learning everything that I could about my issues. I found myself on a WLS forum, and became increasingly aware that I was at a nutritional deficit. God bless Michelle (Vitalady) for calling me and talking to me for two hours to help educate me in nutrition. Protein seemed to be the root of the problem. I started protein shake supplementation, and really stepped up my vitamin supplementation. However, I just couldn’t get ahead of my protein and vitamin needs. I started researching TPN therapy, and suggested it to my MD. I also started to give him information that I had printed off from the internet that would point out to him that my problem was mal-absorbion and that I was malnourished. I requested that I be tested for Copper, Zinc, and Vit. A & E. All those values were extremely low, with copper not even really showing that it was present. I began to rapidly lose weight and my legs from mid thigh through my feet began to grossly swell. I finally talked my MD into allowing me to have PTN therapy; I believe he had started to maybe believe my mal-absorbion theory might have some merit (based on the copper, zinc, vit A&E values). He “allowed” me to go ahead and set everything up for the procedure. So I got insurance approval, set up the insertion of a PIC line, which was inserted on May 11th (my birthday). At that point my insurance decided that they needed a nurse to review my case before the PTN could start. I lasted about a week waiting for their review. My weight dropped to 109 lbs, my legs were so swollen that I could barely bend them at the knees. I finally just walked into my MDs office, no appointment or advance notice, and demanded to see him immediately. He saw me. I told him to put me in the hospital. He put me in the hospital. He thought my PIC line was infected. So the first thing that was done for me was IV antibiotics. I was then given a “protein” IV which rapidly helped reduce my leg swelling. Then the conundrum occurred. My hgb dropped 2 grams (down to 7.9) overnight. I suddenly had my MD, my Hematologist, a Rheumatologist and a Gastroenterologist at my bedside. They were all at a loss. Many exotic tests were done (all negative); I received two units of blood, and started TPN therapy. There was talk about sending me to Mayo Clinic. I told them all they were missing the point, and that my base problem was nutritional. My Hematologist spent a little more time with me than the others, and I suggested that my sudden blood loss almost seemed like a toxic reaction. He then decided that maybe he would order a stool for culture and parasites. Good idea I told him. It was to everyone’s surprise (even mine) that my stool culture came back the next day showing that I had Campylobacter jejuni (food poisoning). I did have diarrhea, but not violent bloody diarrhea as it is reported as symptomatic of Campy J. Looking back, I think I had the bacteria for at least a month. Campy J supposedly runs its course in 2 weeks and then dies out, but I believe in my weakened state it lived in me a little longer than that. I have no idea where I got this, but it was most likely caused by undercooked chicken.
Still, my Hematologist was mystified by the blood loss. I talked to him about my extremely low copper level. I asked him if this might be the cause of my suppressed bone marrow. He pondered that, and said that was possible. I also talked to my Hematologist about my low protein levels and suppressed bone marrow and how that perhaps had caused weakened RBCs that were susceptible to breakage. I asked him if maybe toxins from the Campy J might have caused my RBCs to rupture. Or perhaps the antibiotics that were first administered killed off all my normal gut bacteria and allowed the Campy J to take over. Maybe the stress of everything was just too much for my RBCS. He just couldn’t buy any of my theories. He insisted that after I was released from the hospital that I follow through with a complete evaluation with a Rheumatologist. (Long story short here, I followed through and the Rheumatologist could find nothing wrong with me and dismissed me as a patient).
Now back to my hospital stay; I then was administered new antibiotics, and the TPN therapy was continued. After five days in the hospital I walked out under my own steam and drove myself home. I continued TPN therapy for the next 30 days at home (16 hours/day). Oh, the insurance company approved my TPN the day I went into the hospital. However I had to pay 20% of the cost of each TPN bag. My share of the expense was $40/bag. I don’t understand this reasoning, but whatever I had to pay was worth my recovery. I will also mention that while I was in the hospital receiving TPN my blood sugar would spike at night. When I got home I was given insulin to inject into my TPN bag to counteract the blood sugar spike. I don’t know what happened to the elevated blood sugar, but it took several nights of sweating, confusion, and dizziness to realize that my problem had converted to having a low blood sugar. I discontinued the insulin myself, and informed my MD. (I was now in charge of my health care).
A couple weeks ago my Hematologist wanted to have a follow up visit with me, so I thought it was time to make a point with him. I asked to have my copper, zinc, and Vit. A&E levels and a CBC to be tested before I saw him. He complied. When I went in to see him he hadn’t looked at the labs yet, but I had asked his nurse to give me a copy of the labs. When he sat down with me I asked him to look at my copper value…it was normal. I then asked him to look at my WBC, RBC and platelet values. My RBC level was still a little low, but my WBC and platelet levels were now elevated back to normal values. I said to him that it looked like the increase in copper had taken care of my bone marrow suppression. I had a break through moment with him. He finally got it. His initial diagnosis for my suppressed bone marrow was a virus of unknown origin was discarded. He believed my problem was rooted in mal-absorbsion, but he didn’t understand why his other bariatric patients didn’t have the same problems. Honestly, I wasn’t up to educating him for all his other bariatric patients. My only hope is that he will keep his experience with me in mind if he has a bariatric patient come in with similar problems as myself.
Last week I had a follow up visit with my primary MD to discuss my bone density scan. I asked him if he had looked at my copper, zinc, Vit A&E levels and the CBC that had been ordered by my Hematologist. He had not. I don’t think it was until that moment, when he reviewed those tests that mal-absorbion became real to him, and perhaps I had valid thoughts on the subject. His comment was, “now I know how to treat you.” Yey! I feel just a little bit less alone now in my health care.
The saga continues. My MD thought he could improve upon things by prescribing ZenPep (which is a digestive enzyme). Well, I thought I didn’t have much to lose, so I started taking it. My MD also wanted me to go ahead with IV Reclast to build up my bones. As I mentioned previously, despite my recent health issues, my bone density actually improved over the last two years, which I attribute to proper calcium and vitamin D levels. I was not entirely “sold” on the IV Reclast. If I was improving without it, why did I need it? My MD strongly encouraged me to go through with it, so I set up the appointment to get it done. The nurse who made the appointment with me said that they needed to check my calcium level before they administered the Reclast. I am dismayed with myself that it didn’t occur to me that the blood value they should have been checking was PTH, and not calcium. Maybe they did check the PTH, but at this point all I know is that in checking my “calcium” my potassium level was elevated (5.8, with the normal range being 3-5). I had another potassium level done today and the potassium was down to 5.4. The only thing that had changed was that I had discontinued the ZenPep. I’m canceling my IV Reclast until my blood levels are back in line. I may not do the Reclast at all.
I don’t know why I forget such essential information. Perhaps I lost more than a few brain cells during my nutritional deficit. I have to constantly remind and reinforce what I need and what is right for me. I keep lists of my meds, the blood tests my MD should be ordering and track my own labs. My MD isn’t keeping track of it for me. It’s up to me. You might think I would be upset with my MD’s, and their slowness to accept that they need to look at me and treat me differently than all their other patients. I don’t think nutrition was a big part of their medical education. I believe there is only one other person in this area that has had the same surgery that I have had, and she refuses to communicate with me (I have no idea why). I live in a Midwest middle class town where malnutrition does not exist. How can I blame my MDs for their lack of understanding? I give them credit for not tossing me out as their patient. I have been non-compliant, and have given them a bitter pill of their own ignorance to swallow. All things considered, they are taking it pretty well.
This is my legacy to any of you who might be alone, frightened and suffering as I have done. If you don’t have access to a knowledgeable bariatric surgeon/program, make it easy on yourself and travel to the closest one you can find! You can go through what I went through, but I truly believe I damned near came close to dying. Stay focused on your diet, supplements and testing. Do not rely on your MD to keep track of your health needs. Seek support and information from forums such as this. You must become your own advocate for your health.
Well I’ve been working on this for hours. I really do hope that this helps someone someday, as I was helped by the information from others.
If you have any thoughts on Reclast, ZenPep, elevated potassium levels and MCT oil (another product my MD wants me to explore) I would appreciate it.
Thank You ALL!
