I just spent the last 15 minutes looking for this post. A friend texted me today asking about my upcoming tests so I thought it would be good for me to do another list. The last list was appended to a dental issues post so it was hard to find. Ironic that I’m having dental issues again today.
- ESRD: UCLA has made a decision to accept my sister as donor and move forward with the transplant; she has to repeat some tests and so do I; hopefully this is the beginning of the end of this long process
- Dialysis access: vascular surgeon performed a fistulagram and fistula seems to be working fine; it looks ugly and sometimes bleeds during the session but the nurses and techs seem happy; chest catheter removed earlier this week
- Cardiac rehab: not sure what to do next; UCLA did not mention completing rehab as a condition to transplant; however, cardiologist mentioned she may refer me again if current chest pressure/shortness of breath problems are musculoskeletal
- Atrial flutter: seems to be stable 99% of the time; I think the dialysis nurse caught one instance of irregular heartbeat post ablation but it normalized quickly; list price of procedure from St. Jude Hospital was ~$100k
- Peripheral neuropathy: each time I update I feel it’s getting worse; there is some edema in my ankles and feet and I think the swelling is making the numbness worse; still trying out the calf/foot massager so don’t know if it helps
- Back pain and pressure in chest: back pain just about gone but pressure seems to have increased lately; I’m also hearing sounds and feeling something rubbing(?) in the chest cavity so getting CT scan this Tuesday then seeing the thoracic surgeon that did my surgery
- Minimal urine production: same; I think only “fix” is kidney transplant
- Insomnia: chest pressure/sounds is making sleeping even harder; don’t think I’ve had a good night’s sleep in weeks/months; fatigued all the time and short naps are the only thing keeping me going
- Dental issues: front upper teeth prepped for permanent crowns Wednesday but a few teeth started hurting earlier this afternoon
- Endocrinologist: next appointment in three months
- Lump in left leg: no change
- Constipation: not a problem; now having diarrhea after drinking protein shakes; hopefully it’s just an issue with some improperly stored shakes (near window and sunlight)
- Ophthalmologist: appointment last week; things are still fine but under watch; gave me referral to retina specialist again
I think I get overwhelmed when I look at the entire list from far away. When I get closer and focus on one item, it gets a bit better. Also, instead of just updating the existing items, I’m going to start removing items that are no longer issues or in maintenance mode. That will shorten the list so it doesn’t look as bad. Of course one could say I’m just making room for new stuff but let’s not go there.
There are still a lot of medical appointments and tests coming up:
- CT scan: diagnostic for thoracic surgeon regarding chest issues
- Lexiscan: heart stress test for UCLA transplant center; hopefully not affected by any musculoskeletal issues
- Colonoscopy: UCLA is leaving it up to my primary physician; she will likely want me to get one
- Retina specialist: ophthalmologist concerned with some minor bleeding on retina so want specialist to look; not urgent but I need to go after 4th year of referrals
- Optometrist: need new glasses
- Primary physician: heard she was taking long trips to Taiwan to take care of her mom; not sure if I need a referral or just see her when she’s in town
- Dentist: I think we’re done with crowns; after he caps the upper teeth, he just needs to take care of some minor cavities on bottom front teeth; also extract lower right molar that’s in pain now
It is a big list, and most of it is my own negligence. As I mentioned before in the stretcher girl post, everything that ails me is manageable. ESRD is probably the worst one on the list but hopefully a transplant is coming. Even if it’s not, dialysis is also manageable. I hope I never have an unmanageable issue like the need for (almost) emergency bypass surgery.
Life with chronic diseases 