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Attitude Is Everything

December 16, 2009 2 comments

As many of my readers know, I work in a large Pediatric clinic, and we share space with a Family Practice clinic.

Yesterday, one of my Family Practice co-workers asked me to speak to a 70 year old gentleman who has many health problems, who is “considering” getting a fistula for dialysis.  He’s ruled out getting a transplant, although he tells me his Nephrologist is encouraging him to do so.

I say considering, because he’s very down and discouraged over his overall situation.  He tells me that he had a quadruple bypass 2 years ago, and told me he will no longer shoot his shotgun because he’s afraid his sternum will rip open at the surgical site from 2 years ago (it won’t; they wire it shut, and the bones are already healed).  He has vision problems, and nerve damage to his non-dominant arm from the surgery.  His wife of 52 years was with him, and her eyes were red (I assume from crying).

I explained what a fistula is and why he needs one; a catheter is a poor choice for dialysis and only used as a temporary fix or as a last resort.  Of course, I was upbeat about the process,  as I truly believe that he will feel so much better once he starts dialysis (he didn’t say at what point he is at with his kidney failure). Compared to my other surgeries, fistula surgery was not that big a deal, as it didn’t even require general anesthesia for me; I stopped at McDonalds for lunch on the way home from the hospital.

Granted, dialysis is no walk in the park, but it sure beats the alternative.  During my 9 months on dialysis, I saw a wide spectrum of reactions to dialysis, just as there is a spectrum of how people deal with day to day life. For me, dialysis allowed me to feel SO much better, so it helped me greatly (and the transplant had exponentially even more of an effect).

I’ve had my share of medical “speed bumps”, but as you know, I’ve used my attitude and determination to overcome them. I have pain every day from neuropathy (hereditary), but don’t even think about, and rarely take pain meds (unless it gets bad)

But I could tell he’s a long way off from “believing”.   I do think that our talk did help his wife somewhat, and told both of them not to hesitate to contact me if they had any questions or needed to talk.
So for those of you who tend to have a bleak outlook, just remind yourself,  as I always do:  there is always someone worse off than yourself.  If I were this gentleman, I would be thinking of the people who go through life paralyzed, who have terminal cancer, who have mental illness that makes them outcasts in society through no fault of their own…

The key to dealing with chronic illness, enjoyment of day to day living, and survival is to be positive.  It’s an attitude that’s sometimes difficult to maintain at times, but one worth striving for.

Note: I met this gentleman not in the course of work, (I was never involved in his care, as I work in Pediatrics) and am not disclosing his name, so I feel comfortable that I am not breaching confidentiality, and only know the details above based on what he and his wife told me. I wish them both well.

The Cipro Worked

December 3, 2009 2 comments

I spoke with Kim today, my Transplant Coordinator, and my BK Virus levels have come down!

I just finished a 10 day course of Cipro, due to my BK levels rising (my CellCept has been on “hold” since July(?),  and I’m only on Prograf for now). Cipro is believed to reduce viral replication, so it is being used by some Transplant Centers for BK reactivation. (BK virus is a virus found in 80% of the population, and only “flares up” with immunosuppression)

Last month, my serum (blood) level of BK Virus had increased to 2500.  Now, I’m down to 800 copies of virus, and 226,o00 in my urine.  I haven’t had a urine BK done in several months, and at the time, I was told it was >39 million copies.  The nurse today told me it had been 739 million copies.  Anyway, it’s decreased, and that’s all that matters.  I’m getting another level in a month (blood only, since it’s in the urine first, and then the blood), so hopefully it will go down further.

I must admit that I got a little freaked this week, because I started reading too much.  Keeping it in perspective, most of the articles are on patients who already have Nephropathy (kidney damage) from the virus; as far as I know, I don’t have any damage from it.  I believe it was caught early; thank God that my Transplant Surgeons are compulsive, and screen for it every few months.

My Transplant Coordinator said that any of the treatments are pretty much guess work; some docs feel that the Cipro doesn’t do anything, and some feel it helps.  Apparently,  it worked for me, since this is the first month in the past 3 that the levels went down, and that was significantly (close to 70% reduction of the virus in my blood).

My creatinine remains at 1.2 (my baseline since transplant), and everything else looks good as well.

I had my yearly skin cancer screening with the Dermatologist, and didn’t have to have any moles removed.  She did freak out a little when she saw my foot, though.  My hereditary neuropathy (Charcot Marie Tooth) causes degeneration of the muscles and nerves in my arms and legs.  I wear hard plastic orthotics that keep my foot from dropping, and allow me to walk with confidence.  When I don’t wear them, I’m very tentative with walking, as my foot will drop without me knowing, and I’ll trip and end up on the floor.  Years ago, I fractured the outside bone on my left foot, and there is a protrusion from the healed callous on the bone.  Since my foot tends to have a lot of pressure on the outsides, I have a thick skin callous there on top of the bone callous.  The problem is that I have no sensation in the foot, and am at risk for an ulcer (similar to a diabetic).  She wants me to see the Orthopedic Surgeon to fix this, but after talking to my PCP, I decided I don’t want foot surgery.  So I’ll call the guy who made my orthotics, and see if he can come up with a solution.

Keeping with the “Chronic Positivity” theme of this blog, I want to congratulate a young woman named Tedesha, who will graduate from college this month. I met her at our clinic 7+ years ago, when she came from outside the country to get treated for the first time for a devastating Dermatologic illness called Epidermolysis  Bullosa. She’s blind from the disease, so she deserves a lot of credit for overcoming a lot of adversity.  (I had an update by the staff Dermatologist at my appointment)

Merry Christmas and Happy Holidays!