I started having problems at age 18 in 1978. Every Dr I would see from my home town to Houston would call it something different but they knew it was vascular. I started passing blood through both urinary and rectal track. I had exploratory surgery in my home town in 1978, they cut me open and immediately sewed me right back up. The journey to Houston started and I went to Every facility in the Medical Ctr and each Dr called it something different. Numerous surgeries and procedures and they still didn’t have a name. Not until the early 2000’s when the Dr in Boston discover the gene did I get the correct diagnosis of Cloves.
Over the year’s as thing’s got worse on the bleeding side the pain set in and I could start seeing vessels under the skin of my right chest wall and leg’s and other areas.
My malformations are like vines wrapped around my spine, Numerous organs and started penetrating the spinal column, colon and rectum. The veins are pinching off nerves in my leg’s and I have steadily loss muscle mass and strength causing me to go from nothing to walk to a cane, then walker and now part time wheel chair.
All this time fall’s increased, pain getting worse etc. No pain management Dr’s will see me and I was told to get on hospice, which I really don’t need other than for pain management. I’m on my 2nd hospice, the first one lasting about 2 yrs before they discharged me, I thought I found a good one but this past Thursday they notified me I was being discharged and gave me 2 weeks worth of medication. I’ve learned the game so I immediately filed an appeal through Medicare which acts fast and I was notified Saturday I had won my appeal on a technicality but the lady didn’t know what it was.
I know they will try to discharge me again. The hospice company picked a nurses report from August 2nd which I had a decent week and all it said was I was sitting in a recliner, didn’t have any fall’s that week or bleeding. This has been my worst year in the 46 yrs I’ve been dealing with it, most weekly nurse visits are done with me laying in bed, even the pharmacy driver’s that deliver my meds have been having to come into my house and bring my meds to me in bed (my wife still teaches).
The lady at the hospice whom I’ve never met that sent the report to Medicare had to have dug through almost 4 months of weekly reports to find a good on. On top of the pain I can’t keep playing this mental roller-coaster coaster of not knowing if I’m going to have a source for pain management. Over the last 10 yrs I never sleep more than in 1 to 2 hour stretches because of the pain.
I contacted NORD, National Organization of Rare Diseases and they said they do not support Cloves Syndrome. I don’t know what to do…does anyone have any suggestions? Good luck to us all.
George Jones